tag:blogger.com,1999:blog-89240733968274033512024-03-04T22:23:58.240-08:00Adventures in Modern LifeHow We Cope. (No rants, please.)Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.comBlogger105125tag:blogger.com,1999:blog-8924073396827403351.post-32725722655100581022014-11-29T13:59:00.000-08:002014-11-29T13:59:03.244-08:00CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part 5
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<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Like all romantic entanglements, the reasons for their tensions—tensions,
which eventually led the invisible rubber band between them to snap—weren't
quite clear.<span style="mso-spacerun: yes;"> </span>Or maybe they were entirely
too clear.<span style="mso-spacerun: yes;"> </span>Telling me about it, Shane
struggled for the right words, but his meaning rang with the clarity of
breaking glass.<o:p></o:p></div>
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<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
"For a while, she was planning on moving up here to be with me, to
be able to help out with all my stuff," he explained.<span style="mso-spacerun: yes;"> </span>"She wanted to be the one that takes
care of me.<span style="mso-spacerun: yes;"> </span>And for an 18- or
19-year-old to be committing her life like that, it's not, I mean—when she
asked me for the breakup I was upset, obviously, but I knew it was the right
thing to do.<span style="mso-spacerun: yes;"> </span>I can't expect her to give
up her life for me at this point in <i style="mso-bidi-font-style: normal;">her</i>
life."<o:p></o:p></div>
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<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
I asked Shane the question he seemed, to me, to have been hinting at: Did
she get flak from her family or friends?<o:p></o:p></div>
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<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
"Yes," he replied without skipping a beat.<span style="mso-spacerun: yes;"> </span>"Okay, that's another thing.<span style="mso-spacerun: yes;"> </span>Probably like three or four months into the
relationship, she started telling me about how her sister and the woman they live
with [a close family friend/guardian], how they didn't really agree with her
being with me.<span style="mso-spacerun: yes;"> </span>I've met them, and
they're not evil people.<span style="mso-spacerun: yes;"> </span>But, like, for instance,
once the woman said something like, She's not going to be able to take care of
you and provide for you, and all that stuff.<span style="mso-spacerun: yes;">
</span>Her aunt was also kind of against it and didn't really understand what
she saw in me, because of the wheelchair.<span style="mso-spacerun: yes;">
</span>It made [my now ex-girlfriend] so mad.<span style="mso-spacerun: yes;">
</span>She was livid at them.<span style="mso-spacerun: yes;"> </span>But I
think honestly being around them all the time, like, some of their thoughts
kind of slipped into her mind.<span style="mso-spacerun: yes;"> </span>And she started
to see their perspective more than she used to."<o:p></o:p></div>
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There was peer pressure as well.<span style="mso-spacerun: yes;"> </span>"Her
sister … has an able-bodied boyfriend," Shane explained.<span style="mso-spacerun: yes;"> </span>"At their age they're running around
having sex all the time.<span style="mso-spacerun: yes;"> </span>They drink,
they go out.<span style="mso-spacerun: yes;"> </span>I think she sees that and
even though she doesn't want to be that shallow, she also kind of wants to be a
young person.<span style="mso-spacerun: yes;"> </span>And I want to give her
that."</div>
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<o:p></o:p> </div>
<span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"> <span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"> <span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"> </span></span></span> It forces you to
mature fast—or at least it makes you <i style="mso-bidi-font-style: normal;">act</i>
mature, whether you feel it or not—having a profound disability.<span style="mso-spacerun: yes;"> </span></span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com11tag:blogger.com,1999:blog-8924073396827403351.post-91597669428835902602014-11-20T16:11:00.001-08:002014-11-20T16:14:55.255-08:00CONVERSATIONS ABOUT INTER-ABLED ROMANCE, part IV<br />
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Then came a surprise Christmas gift.<span style="mso-spacerun: yes;">
</span>"In December, I was in my bedroom and my brother was home for the
holidays—home from school—and he was like, Hey, my friend is coming over
tonight, just so you know.<span style="mso-spacerun: yes;"> </span>I was like,
Okay, that's weird.<span style="mso-spacerun: yes;"> </span>He was being a
little weird.<span style="mso-spacerun: yes;"> </span>And it turns out she comes
walking into my bedroom!<span style="mso-spacerun: yes;"> </span>She had, like,
planned this all out with my family to come visit for Christmas.<span style="mso-spacerun: yes;"> </span>I didn't know.<span style="mso-spacerun: yes;"> </span>It blew my mind.<span style="mso-spacerun: yes;"> </span>So we spent like four days together, which
was awesome.<span style="mso-spacerun: yes;"> </span>But still just as very
close best friends.<o:p></o:p></div>
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"Then she went home and we–I'm trying to remember how it all
happened–she came back for her spring break.<span style="mso-spacerun: yes;">
</span>So she was here for, like, another week.<span style="mso-spacerun: yes;">
</span>And during that time we kissed for the first time.<span style="mso-spacerun: yes;"> </span>And it was like a big moment or
whatever.<span style="mso-spacerun: yes;"> </span>But still … her fears were,
she'd lost her mom to cancer when she was, like, 14, and knowing what she knows
about SMA she was worried that something would happen to me and she would lose
someone else whom she loved so completely, so it was hard for her.<span style="mso-spacerun: yes;"> </span>And I understood that.<span style="mso-spacerun: yes;"> </span>I can't say to someone honestly, I guarantee
nothing will happen to me.<span style="mso-spacerun: yes;"> </span>'Cause, you
know, I could get sick tomorrow and that could be the end.<span style="mso-spacerun: yes;"> </span>So it's tough.<span style="mso-spacerun: yes;"> </span>It was probably the toughest part of that
relationship with her."<o:p></o:p></div>
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<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Or at least up until that point.<span style="mso-spacerun: yes;">
</span>Tougher moments lay ahead, but not without interludes of sublimity.<span style="mso-spacerun: yes;"> </span>"That summer she was here for a while, like
a month," said Shane.<span style="mso-spacerun: yes;"> </span>"And
early on in that trip she finally said, You know what?<span style="mso-spacerun: yes;"> </span>I've kind of forgotten my reasons for wanting
to hold off on the relationship.<span style="mso-spacerun: yes;"> </span>So
let's just do it.<span style="mso-spacerun: yes;"> </span>So we made it
official."<o:p></o:p></div>
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The next eight months were "seriously the best time of my entire
life," he told me.<span style="mso-spacerun: yes;"> </span>"She came
up here, like, once a month. … I taught her how to lift me, so we were able to
be intimate.<span style="mso-spacerun: yes;"> </span>So that was cool."<o:p></o:p></div>
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Cool though it may have been, there was soon trouble in paradise.<span style="mso-spacerun: yes;"> </span>"We had our fair share of
problems," Shane acknowledged.<span style="mso-spacerun: yes;">
</span>First, there were mobility/transportation inequities.<span style="mso-spacerun: yes;"> </span>"Sometimes she would kind of say, like,
you know, I'm giving up so much of my life to be with you.<span style="mso-spacerun: yes;"> </span>She would say, I know it's not your fault
but, like, you don't ever come down to Florida.<span style="mso-spacerun: yes;">
</span>And I'm like, it's just difficult.<span style="mso-spacerun: yes;">
</span>And she was like, I just want someone that can be here for me and, like,
help me and hold me.<span style="mso-spacerun: yes;"> </span>Stuff like
that.<span style="mso-spacerun: yes;"> </span>That was really tough because she
knew—we both knew—that there was nothing, it wasn't my fault.<span style="mso-spacerun: yes;"> </span>It was just the way things were.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
"We always found a way to work through it.<span style="mso-spacerun: yes;"> </span>We had our moments where, intimately, I
wasn't able to do everything as good as an able-bodied person might be able to
do.<span style="mso-spacerun: yes;"> </span>So we had our late-night fights where
I'm apologizing and she's telling me not to apologize, but I feel bad and she's
saying don't feel bad, but she's obviously upset.<span style="mso-spacerun: yes;"> </span>That kind of sucked.<span style="mso-spacerun: yes;"> </span>But we got through it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
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"I've never loved someone as much as I loved her.<span style="mso-spacerun: yes;"> </span>And I think she would say the same thing
about me."<o:p></o:p></div>
<span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"></span><br />
<span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"> But happily ever
after it wasn't.<span style="mso-spacerun: yes;"> </span></span>
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Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-73796472752779982022014-11-08T17:20:00.000-08:002014-11-08T17:20:02.064-08:00Conversations about Inter-Abled Romance, part 3<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
"The first time I taught her how to lift me, that was like a big
step in the relationship!<span style="mso-spacerun: yes;"> </span>She was
nervous but she wanted to try it, because we couldn't really be intimate with
me sitting in the wheelchair," said Shane.<span style="mso-spacerun: yes;">
</span>"So I told her it's fairly easy.<span style="mso-spacerun: yes;">
</span>I don't weigh that much.<span style="mso-spacerun: yes;"> </span>I kind
of assessed that she was fit enough to be able to do it.<span style="mso-spacerun: yes;"> </span>[It's] something I have to think about when
I'm talking to new people.<span style="mso-spacerun: yes;"> </span>I immediately
size them up and figure out if they'll be able to lift me or not.<span style="mso-spacerun: yes;"> </span>I don't have any type of lift device in my
house or anything."<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
I asked if this girlfriend had any kind of experience with people with
disabilities of any kind.<span style="mso-spacerun: yes;"> </span>"None at
all," he answered.<span style="mso-spacerun: yes;"> </span>"She was in
one relationship before me.<span style="mso-spacerun: yes;"> </span>But no one
who had a disability."<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Though it was a new experience for both of them, in different ways, they
managed matter-of-factly.<span style="mso-spacerun: yes;"> </span>Honesty,
open-mindedness, patience, and perseverance got them through.<span style="mso-spacerun: yes;"> </span>"We were able to be intimate once I was
out of my chair," Shane continued.<span style="mso-spacerun: yes;">
</span>"I was 19, and that was the most amazing experience of my
life.<span style="mso-spacerun: yes;"> </span>It was different [for her],
obviously, but she didn't mind it.<span style="mso-spacerun: yes;"> </span>I was
able to do enough on my own that it worked out."<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
But that's not the end of Shane's story.<span style="mso-spacerun: yes;">
</span>As if in answer to my unspoken question, Shane told me that good sex
alone wasn't enough.<span style="mso-spacerun: yes;"> </span>"A few months
later," he went on, "I was really thinking about us, and all that,
and I realized that I didn't really <i style="mso-bidi-font-style: normal;">connect</i>
with her.<span style="mso-spacerun: yes;"> </span>The only reason I jumped on it
was because she was the first person who really wanted anything more than
friendship with me.<span style="mso-spacerun: yes;"> </span>That was really
tough.<span style="mso-spacerun: yes;"> </span>I didn't want to break up with
her if I was never going to find someone else.<span style="mso-spacerun: yes;">
</span>I didn't know if she was, like, an oddball. … At first I lied to myself
and said, Oh yeah, it's much deeper.<span style="mso-spacerun: yes;"> </span>But
over time I admitted or realized that she was not a person I enjoyed being
around.<span style="mso-spacerun: yes;"> </span>So yeah, I had to let her
go."<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
He said his "conscience wouldn't allow me to be with her if it was
only for the physical stuff."<span style="mso-spacerun: yes;"> </span>Which
struck me as a mature observation for a guy who was at the time only 19.<span style="mso-spacerun: yes;"> </span>"She understood that I was young and
inexperienced and didn't really know what I wanted yet," he reflected,
adding that they still talk occasionally.<span style="mso-spacerun: yes;">
</span>They're still friends.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
The woman was 22.<span style="mso-spacerun: yes;"> </span>I began to
wonder if an age difference was a key element to interabled attraction.<span style="mso-spacerun: yes;"> </span>After all, ML is three years older than I
am.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Shane soon put me off this thought.<span style="mso-spacerun: yes;">
</span>"My second relationship was kind of the opposite of that one,"
he said with a chuckle.<span style="mso-spacerun: yes;"> </span>On his blog,
he'd requested volunteers for a nonprofit video project.<span style="mso-spacerun: yes;"> </span>"This one girl from Florida was one of
the people [who responded] that I selected—and really it was completely
business," explained Shane.<span style="mso-spacerun: yes;">
</span>"We worked together that summer from a distance.<span style="mso-spacerun: yes;"> </span>She stayed in Florida.<span style="mso-spacerun: yes;"> </span>And we worked via Skype and texting and email
and all that."<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
She was only 18; Shane was now 20.<span style="mso-spacerun: yes;">
</span>Working together, they became close friends.<span style="mso-spacerun: yes;"> </span>"Probably my best friend, I would say,
that I had at that time [though] we had not actually met in person."<o:p></o:p></div>
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Even after the video project was done, they kept in touch.<span style="mso-spacerun: yes;"> </span>"We Skyped every night, pretty much, and
it got to a point where I told her that I liked her and she told me that she
liked me, more than friends," Shane recalled.<span style="mso-spacerun: yes;"> </span>"But because of the distance and some
hesitations that she had about everything, including my disability, she just
finally said I'm not ready to be in a relationship yet so let's just hold
off.<span style="mso-spacerun: yes;"> </span>It hurt but I understood and I
didn't want to push her."<o:p></o:p></div>
<span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">Then came a surprise ...</span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-52558327327248339362014-10-25T17:37:00.003-07:002014-10-25T17:37:56.336-07:00Conversations about Inter-Abled Romance, part 2
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<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Perhaps he sensed my hesitation.<span style="mso-spacerun: yes;">
</span>"I didn't think too much about it," he said then, "but it
upset me <i style="mso-bidi-font-style: normal;">if</i> I thought about it."<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
He continued his story, letting me know that everything had changed.<span style="mso-spacerun: yes;"> </span>It changed because of his blog.<span style="mso-spacerun: yes;"> </span>Shane practically lives in his blog.<span style="mso-spacerun: yes;"> </span>For people with mobility impairments, the
computer can be like a passport to the world.<span style="mso-spacerun: yes;">
</span>And you can visit incognito—no one need know about your disability, or
at least about the extent of it, about what you look like and how you talk and
how you breathe and how you eat, all of which can be labored for someone like
me.<span style="mso-spacerun: yes;"> </span>And someone like Shane.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Of course, Shane holds nothing back from his blog.<span style="mso-spacerun: yes;"> </span>That's part of its magic.<span style="mso-spacerun: yes;"> </span>He's able to shape the way his disability and
his life experiences are presented, and he does so with self-aware,
unsentimental, unabashed gusto.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
"Two or three years ago I got an email from this girl who said, Hey,
I read your blog and I love it, blah blah blah," he explained to me.<span style="mso-spacerun: yes;"> </span>"I kind of rolled my eyes like I do
whenever I get one of those emails.<span style="mso-spacerun: yes;"> </span>I
just thought about moving on.<span style="mso-spacerun: yes;"> </span>But she
mentioned that she was local—fairly local …<span style="mso-spacerun: yes;">
</span>About an hour or hour-and-a-half away.<span style="mso-spacerun: yes;">
</span>She said that she would really love to meet me and hang out."<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Shane's expectations were muted, tempered by experience.<span style="mso-spacerun: yes;"> </span>"There was no suggestion of anything
[more] at that point," he continued.<span style="mso-spacerun: yes;">
</span>"So honestly, just for the hell of it, I sent her my number and
said, Hey, let's text.<span style="mso-spacerun: yes;"> </span>That would be fun
… I didn't even think about it when I did it.<span style="mso-spacerun: yes;">
</span>I just did it and I moved on …"<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
What developed was a virtual friendship, conducted entirely online and by
phone.<span style="mso-spacerun: yes;"> </span>"We sent texts back and
forth," he said, " and a few days later we start talking about
relationships, and I explained to her my whole difficulty with having a
girlfriend because I rely on other people so much, you know, and that's kind of
a turnoff for most young people.<span style="mso-spacerun: yes;"> </span>At
least [that's] the way I've experienced it.<span style="mso-spacerun: yes;">
</span>And she came back and was very forward about it.<span style="mso-spacerun: yes;"> </span>She just said, Honestly, all of that means
nothing to me.<span style="mso-spacerun: yes;"> </span>I would love to get to
know you on a deeper level.<span style="mso-spacerun: yes;"> </span>So I went
with it.<span style="mso-spacerun: yes;"> </span>And one thing led to another
and she came over and we hung out."<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
The friendship stayed platonic over several more visits—she always
visiting him, at his parents' house, because he lacked independent
mobility.<span style="mso-spacerun: yes;"> </span>His family did, however, allow
him a high degree of privacy.<span style="mso-spacerun: yes;"> </span>It wasn't
unusual for Shane to spend hours in his bedroom on his own with his computer,
so why not leave him alone in his room with a visiting friend?<o:p></o:p></div>
<span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">Even when talk with
that friend turned to kissing and beyond.<span style="mso-spacerun: yes;">
</span></span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-1803730810759505492014-10-20T18:05:00.003-07:002014-10-21T15:59:48.397-07:00Conversations about Inter-Abled Relationships<em><span style="font-family: Verdana, sans-serif;">Lately I've been toying with an idea for a new book. The proposal is to explore relationships between people with severe disabilities and their able-bodied partners. My assertion is that we enjoy a level of closeness that other couples, if they knew, would only envy.</span></em><br />
<em><span style="font-family: Verdana, sans-serif;"> </span></em><br />
<em><span style="font-family: Verdana, sans-serif;">Here's an opening salvo …</span></em><br />
<br />
<em><span style="font-size: large;"><span style="font-family: Cambria;">I Didn't Want To Break Up If I Was Never Going To
Find Someone Else</span></span></em><br />
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
So many terrific young disabled folks—of both genders—feel not just
rejected but utterly overlooked and ignored in our sexed-up culture.<span style="mso-spacerun: yes;"> </span>Today the battle cry of disability activists
invariably includes the testy assertion, WE ARE SEXUAL BEINGS!<span style="mso-spacerun: yes;"> </span>It's a tremendous leaden loneliness. And
they're not wrong to want equal access to …<span style="mso-spacerun: yes;">
</span>all things.<span style="mso-spacerun: yes;"> </span>That's the ultimate
litmus test of civil rights.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
<div align="center" class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-align: center;">
###<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none;">
To get an
accurate picture of the current climate, I asked a young man with a disability
similar to mine about his romantic exploits. <span style="mso-spacerun: yes;"> </span>Shane Burcaw is a 22-year-old blogger and
author of the young-adult memoir <i style="mso-bidi-font-style: normal;">Laughing
At My Nightmare</i>.<span style="mso-spacerun: yes;"> </span>As charismatic and
funny as he is to read, his biography could give one a different
impression.<span style="mso-spacerun: yes;"> </span>He lives at home with his
middle-class white parents and younger, nondisabled brother in suburban
Pennsylvania.<span style="mso-spacerun: yes;"> </span>He uses a motorized
wheelchair and weighs just 64 pounds.<span style="mso-spacerun: yes;"> </span>Like
me, he was born with SMA type 2.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
To skip over the boring scientific parts about SMA, just scroll down a
few paragraphs.<o:p></o:p></div>
<br />
<div align="center" class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-align: center;">
###<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
SMA is a broad diagnosis broken up into four distinct types, depending
primarily on the age of onset.<span style="mso-spacerun: yes;"> </span>Mine
became evident when I was about six months old, which is on the cusp between
types 1 and 2.<span style="mso-spacerun: yes;"> </span>(Type 1, sometimes called
Werdnig-Hoffmann Disease, manifests in infancy, even at birth.<span style="mso-spacerun: yes;"> </span>Half the babies diagnosed at birth die before
age two; their hearts and lungs become too weak to go on.)<span style="mso-spacerun: yes;"> </span>At six months, I wasn't sitting myself up the
way my older nondisabled brother had.<span style="mso-spacerun: yes;"> </span>When
I was put into a seated position I tended to fall over.<span style="mso-spacerun: yes;"> </span>Doctors told my parents I'd never be able to
cry very loudly because I lacked the necessary breathing capacity.<span style="mso-spacerun: yes;"> </span>That, Mom concluded, was the first clue that
doctors didn't know what they were talking about.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
To be clear, spinal muscular atrophy is a group of genetic disorders with
varying degrees of severity.<span style="mso-spacerun: yes;"> </span>The latest
statistics indicate that one in every 6,000 babies is born with some version of
it.<span style="mso-spacerun: yes;"> </span>SMA might not be noticeable at
first.<span style="mso-spacerun: yes;"> </span>Symptoms can strike anyone of any
race or either gender at any age.<span style="mso-spacerun: yes;"> </span>Or you
might be a carrier and not know it.<span style="mso-spacerun: yes;"> </span>One
in every 40 people has the gene, or some 7.5 million Americans.<span style="mso-spacerun: yes;"> </span>If two carriers sprout a child, the kid will
be a carrier and has a one in four chance of actually developing SMA.<span style="mso-spacerun: yes;"> </span>Which is why my siblings don't have it,
though it tends to run in families.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
The U.S. National Institutes of Health explains the cause of SMA as
"a loss of specialized nerve cells, called motor neurons, in the spinal
cord and the part of the brain that is connected to the spinal cord (the
brainstem). The loss of motor neurons leads to weakness and wasting (atrophy)
of muscles used for activities such as crawling, walking, sitting up, and
controlling head movement." <o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Everyone who has it is different.<span style="mso-spacerun: yes;">
</span>In my case, the progression of the atrophy plateaued when I was about
six years old.<span style="mso-spacerun: yes;"> </span>That is, the rate at
which I continued getting weaker slowed.<span style="mso-spacerun: yes;">
</span>But—as I learned with great shock and a deep-seated sense of betrayal in
my late-20s—it never stops completely.<o:p></o:p></div>
<br />
<div align="center" class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-align: center;">
###<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Shane is palpably aware of the steady progression of his SMA—not daily,
to be sure, but unavoidably.<span style="mso-spacerun: yes;"> </span>I confess
that, at first, I was turned off by his blog and book's implications (the blog
bears the same name as the book).<span style="mso-spacerun: yes;"> </span>The
very idea of "laughing at my nightmare" doesn't seem to serve the
cause of greater disability inclusion.<span style="mso-spacerun: yes;">
</span>Don't we want to get away from pity mongering, the notion that we're
ghoulish nightmare visions?<span style="mso-spacerun: yes;"> </span>But now that
I've gotten to know him and his work better, I've had a change of heart.<span style="mso-spacerun: yes;"> </span>Maybe he's actually turning the stereotype on
its head.<span style="mso-spacerun: yes;"> </span>What's that old philosophy
about how accurately naming something removes its power?<span style="mso-spacerun: yes;"> </span>By turning his circus spotlight on that
nightmare stereotype, he's helping lift the mystery and fear.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
Shane's charm is certainly overpowering.<o:p></o:p></div>
<br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
"Two or three years ago, I had never had a romantic
relationship," he told me.<span style="mso-spacerun: yes;"> </span>"I
grew up with, you know, I had tons of friends, lots of friends who were female.
<span style="mso-spacerun: yes;"> </span>But it would never go any further than
that.<span style="mso-spacerun: yes;"> </span>I never pushed it with any of them
because I didn't want to hurt relationships that were already perfectly good.<span style="mso-spacerun: yes;"> </span>So at that point I was just kind of, like,
whatever, maybe I just won't have a girlfriend.<span style="mso-spacerun: yes;">
</span>Ever."<o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
At that I
didn't know whether to laugh or cry.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none; text-indent: 0.5in;">
To read more
about my conversation with Shane, check back here in a couple days…<o:p></o:p></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-1296315974520592852014-09-22T17:12:00.001-07:002014-09-23T12:21:28.351-07:00"TOMORROW," IT SEEMS, IS STUCK IN 1977<br />
<span style="font-family: Verdana, sans-serif;">A friend in theater recently
emailed me a perplexing question.<span style="mso-spacerun: yes;"> </span>He's
working on the touring company of "Annie" – you know, the musical –<span style="font-family: Times New Roman;">
</span><span style="font-family: Verdana, sans-serif;">and wanted to discuss the curtain call. "There is some debate as to whether FDR bow
in his wheelchair.<span style="mso-spacerun: yes;"> </span>What do you think? Is there something ableist about an
able-bodied actor leaping out of a
wheelchair?"<o:p></o:p></span></span>
<span style="font-family: Times New Roman;">
</span><br />
<div style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif";"></span><br />
<span style="font-family: "Verdana","sans-serif";">While
you p</span><span style="font-family: Verdana, sans-serif;">onder that, I should explain that I saw "Annie" on Broadway in
the late 1970s, when I was a kid.<span style="mso-spacerun: yes;"> </span>I was
so young (read: ignorant) that I had never even heard of The New Deal before.<span style="mso-spacerun: yes;"> </span>I saw the first movie version in 1982, when
my younger brother was a kid, and the 1999 Disney remake with my kids.<span style="mso-spacerun: yes;"> </span>My kids were also in a school production a
couple years ago.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_uCKddsa-_IEYeZPN73vsoaHynzwrxO5pcbaiU4kpjckooUpTRGTQcbOIWLnDIIF0epwc-pjIVkPfpMLWobtq8yiqCs5OMu-04WiJxpnZ4apagkxCzvE7GK3x6RWjRTBhEXFCCYaOW-U/s1600/Annie+logo.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_uCKddsa-_IEYeZPN73vsoaHynzwrxO5pcbaiU4kpjckooUpTRGTQcbOIWLnDIIF0epwc-pjIVkPfpMLWobtq8yiqCs5OMu-04WiJxpnZ4apagkxCzvE7GK3x6RWjRTBhEXFCCYaOW-U/s1600/Annie+logo.bmp" /></span></a></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">So
I know the delightful, irresistibly sappy kid-friendly musical all too
well.<span style="mso-spacerun: yes;"> </span>And it is to be commended for showing FDR in a wheelchair, an accurate and important historical milestone for those of us who use wheelchairs. But honestly, I don't recall ever
noticing how the FDR character bowed at the end.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">To
my friend, I first said "I dunno" but then, on second thought, I DID
know.<span style="mso-spacerun: yes;"> Maybe it was the word "leaping," but I realized </span>I would personally be offended if
I saw the FDR character rise from his chair unassisted to take his bow.<span style="mso-spacerun: yes;"> </span>To me, it would feel as if the actor were
saying, "Don't confuse me with one of them!<span style="mso-spacerun: yes;"> </span>(I can do dance parts, too.)"<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">After
all, I said, does Daddy Warbucks remove his bald-head wig to clarify he's not
actually folliclly challenged? Does Annie herself toss off her red curly wig
and binder to announce she's really a busty 21-year-old blonde (or
whatever)?<span style="mso-spacerun: yes;"> </span>Is it not customary for actors
to stay in character during the curtain call?<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">He
accepted my answer.<span style="mso-spacerun: yes;"> </span>But then…<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">Then
my friend came back with this: What if the wheelchair isn't onstage during the
bow?<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">Again,
I reflected.<span style="mso-spacerun: yes;"> </span>That helps, I said – just
seeing him in a standing position, not actually in the act of standing up from
his wheelchair (which the real FDR couldn't do unassisted anyway) – would
remove some of the sting.<span style="mso-spacerun: yes;"> </span>But I'd still
prefer to see him remain in chair and bow while seated.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">Well,
my friend is not the director or producer.<span style="mso-spacerun: yes;">
</span>He has no real power over
such decisions.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">And
what was the final decision?<span style="mso-spacerun: yes;"> </span>FDR would
only stand up from his chair while the curtain is closed. <span style="mso-spacerun: yes;"> </span>He would exit the stage, leaving the empty
wheelchair behind. <span style="mso-spacerun: yes;"> </span>Then, once the
curtain was open, he would walk in to take his bow, then sit back down in the wheelchair
to join the company.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">Not
perfect but not bad, I thought.<span style="mso-spacerun: yes;"> </span>Still, I
wondered why he of all the actors should break character for the final curtain.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: Verdana, sans-serif;">It
turns out the director is none other than Martin Charnin, who directed and wrote the lyrics
for the original Broadway production back in 1977 and has been more or less involved in its production ever
since.<span style="mso-spacerun: yes;"> </span>Yes, he's the man responsible for the words to "The
Sun'll Come Out Tomorrow" and "It's A Hard-Knock Life."<span style="mso-spacerun: yes;"> </span>Gotta admit, they're catchy tunes.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC7kCnKG2JRCYc4yH5i8YJSxqP0iSbzN84YUObT3-BvF8JH3l8txCll8XPg3S5pgiNKYNQcimtMxyC_Dwq-dsAsJUMYQs0vMETvGbGaotMlcTaDxZv-22Rpe3iUZgBk63WaQX4nEpA63U/s1600/Martin+Charnin.png" style="margin-left: auto; margin-right: auto;" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana;">Martin Charnin</span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC7kCnKG2JRCYc4yH5i8YJSxqP0iSbzN84YUObT3-BvF8JH3l8txCll8XPg3S5pgiNKYNQcimtMxyC_Dwq-dsAsJUMYQs0vMETvGbGaotMlcTaDxZv-22Rpe3iUZgBk63WaQX4nEpA63U/s1600/Martin+Charnin.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"></span></a><br /></div>
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Anyway,
Martin does have the power, and he said this is how the FDR character has
always taken his bow – since the original production.<span style="mso-spacerun: yes;"> </span></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Who
am I to argue with success?<span style="mso-spacerun: yes;"> </span>It's not a
big deal, right?<span style="mso-spacerun: yes;"> </span>Or is it?<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">I
asked my friend, What about the mysterious turbaned assistant, called Punjab in the original movie (played
inexplicably, though well, by Trinidad-born Geoffrey Holder)?<span style="mso-spacerun: yes;"> </span>He was taken straight from the
original 1930s comic strip, but I can't recall if he appeared in the original Broadway show, perhaps under another name. Anybody in the Blogosphere know?</span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">At any rate, he was an offensive
stereotype and is not part of the current production.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgytfx55xzQ_ey7BARaK7HAuyRA0X4o51mAA8jrFIamxIuV_lVBR8tIffk07oo8ZGS_5iwZFIpSmgz0sjvdLH7KtHUTcnOFPYunBj-5xO1w-hpjGUuFDuYDU2WC6eWBVWTyOWh12kyiY7s/s1600/LittleOrphanAnnie_Vol6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgytfx55xzQ_ey7BARaK7HAuyRA0X4o51mAA8jrFIamxIuV_lVBR8tIffk07oo8ZGS_5iwZFIpSmgz0sjvdLH7KtHUTcnOFPYunBj-5xO1w-hpjGUuFDuYDU2WC6eWBVWTyOWh12kyiY7s/s1600/LittleOrphanAnnie_Vol6.jpg" height="160" width="200" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgazWUk0t9op4pRlMV3vXYchAN3tmy-8RJE67tvI2-EOe9girKp2RRKdmfyfTmsFDE7GE_Qono_lDV17zm1OG47h1sa1X89K_0l7gasPddmjZ9aKCyXhe2WjHM44F5CZFlohifFOlBfOsM/s1600/geoffrey-holder-annie-movie-1982-photo-GC.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgazWUk0t9op4pRlMV3vXYchAN3tmy-8RJE67tvI2-EOe9girKp2RRKdmfyfTmsFDE7GE_Qono_lDV17zm1OG47h1sa1X89K_0l7gasPddmjZ9aKCyXhe2WjHM44F5CZFlohifFOlBfOsM/s1600/geoffrey-holder-annie-movie-1982-photo-GC.jpg" height="200" width="158" /></a></div>
<span style="font-family: Verdana, sans-serif;"><o:p></o:p></span> </div>
<div style="text-align: right;">
<a href="https://www.youtube.com/watch?v=5L_1CabGWa8" target="_blank"><span style="font-family: Verdana, sans-serif;">(Click here for musical number from the 1982 film, with Punjab & other stereotypes.)</span></a></div>
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">This led me to wonder how certain ideas and images become unacceptable while others can still slip by almost unnoticed. Many racist stereotypes have gained a degree of attention, of outrage, but equally offensive images of disability go by almost unrecognized.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">To be fair, no one is suggesting that the FDR character NOT have a wheelchair. That was somewhat groundbreaking in 1977. And seeing the actor standing at the end doesn't take away from that. But for me it still jars a little. </span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">Note that this isn't the first time such questions have been raised.<span style="mso-spacerun: yes;"> </span>Several years ago it was the cause of </span><a href="http://www.nytimes.com/1998/07/02/us/altering-fdr-memorial.html?module=Search&mabReward=relbias%3Ar%2C%7B%221%22%3A%22RI%3A7%22%7D"><span style="mso-ascii-font-family: "Times New Roman"; mso-hansi-font-family: "Times New Roman";"><span style="color: #003399; font-family: Verdana, sans-serif;">much
debate in the design of the FDR Memorial</span></span></a><span style="font-family: Verdana, sans-serif;"> in Washington, DC.<span style="mso-spacerun: yes;"> </span>The designers eventually decided – wisely, I
think – to only portray the president in a seated position.<span style="mso-spacerun: yes;"> </span>In the main statue, you can't actually see what
he's sitting on, but the smaller, lesser statue does show him in his
homemade wheelchair.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqkw9LC7Z6ifxq-ZbZHs0wPiKdYA-5DB9rGhvhs0g5-PmvIVBeE-2ZN46U0TZgsqd9JWOsw06KNd-u7P-W4nPLFecv7FRHz_wDyp6lTOUKuHa-kC9ZeoER8VSpvSRyS3rC7s4Vsqh9xBM/s1600/FDR+Memorial.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqkw9LC7Z6ifxq-ZbZHs0wPiKdYA-5DB9rGhvhs0g5-PmvIVBeE-2ZN46U0TZgsqd9JWOsw06KNd-u7P-W4nPLFecv7FRHz_wDyp6lTOUKuHa-kC9ZeoER8VSpvSRyS3rC7s4Vsqh9xBM/s1600/FDR+Memorial.jpg" /></span></a></div>
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;">Too bad that, 16 years after the Memorial debate, such questions can still arise. My young friend knew enough to be concerned, which I appreciate, but less enlightened folks still have no idea that there's even an issue.</span><span style="mso-spacerun: yes;"> (I wonder what the new movie starring Jamie Foxx will be like in terms of challenging stereotypes.) </span>Or am I being ridiculous?<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoPlainText" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">What
do you think?</span><o:p></o:p></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-18648203541885935642014-06-18T14:51:00.001-07:002014-06-18T14:51:30.276-07:00BRIGHT LIGHTS, BIG DISAPPOINTMENT *(*With all due respect to my good friend @JayMcInerney)<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><strong><span style="font-size: large;">Y</span></strong>ou
are not the kind of guy who would be in a place like this at this stage of
Obamacare.<span style="mso-spacerun: yes;"> </span>With your biography, you
could've been its poster child, but now you're in danger of becoming one for
the opposition.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">By
now, everyone has an Obamacare story to tell.<span style="mso-spacerun: yes;">
</span>While the Administration touts the 8 million Americans who signed up,
many for the first time, others grumble about bureaucratic nightmares, abrupt
cancellations, or online-exchange glitches. You've suspected the truth probably
lies somewhere in the middle, but now you feel you've been had. You—an informed
consumer who advocated for such reforms for years.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">You
hate yourself for writing this, providing fodder for antagonistic Republicans.<span style="mso-spacerun: yes;"> </span>It gives you what psychologists call
cognitive dissonance.<span style="mso-spacerun: yes;"> </span>As a self-employed
professional with pre-existing conditions up the wazoo—quite literally,
actually—you craved the basic fairness of the Affordable Care Act.<span style="mso-spacerun: yes;"> </span>Before it, your only option was an
outrageously expensive PPO that paid 70 percent of in-network doctor bills and
50 percent of so-called "customary rates" for out-of-network
services.<span style="mso-spacerun: yes;"> </span>For this you forked over the
princely sum of $10,408.80 a year in premiums.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">But
as a "high-risk patient," you were grateful for what you got.<span style="mso-spacerun: yes;"> </span>You were born with a neuromuscular weakness
called spinal muscular atrophy; you've never walked or stood, and your lungs
are so weak that a bad cold could kill you.<span style="mso-spacerun: yes;">
</span>People like you can't be too choosy about their health insurance.<span style="mso-spacerun: yes;"> </span>Employers rejected you, though you'd
graduated from Harvard with honors.<span style="mso-spacerun: yes;"> </span>The
only work you could secure were freelance magazine assignments.<span style="mso-spacerun: yes;"> </span>As an independent contractor, you had to
secure your own coverage.<span style="mso-spacerun: yes;"> </span>But when you
aged out of your parents' policy, in the late-1980s, you couldn't buy health
insurance at any price.<span style="mso-spacerun: yes;"> </span>So you joined
organizations—the National Writers' Union, the Media Alliance, etc.—just to
score a group plan that didn't require a medical examination.<span style="mso-spacerun: yes;"> </span>Still, carriers kept dropping you.<span style="mso-spacerun: yes;"> </span>They called you too expensive.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The
Clinton Administration brought passage of the Health Insurance Portability and
Accountability Act, which enabled you to purchase insurance without any
pre-existing-condition exemptions if you had proof of prior coverage.<span style="mso-spacerun: yes;"> </span>A terrific help, this is how you ended up
with the pricey PPO.<span style="mso-spacerun: yes;"> </span>You clung to it for
years.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">But
last October you received word that it was ending, thanks to the ACA.<span style="mso-spacerun: yes;"> </span>No worries.<span style="mso-spacerun: yes;">
</span>You would be automatically shunted into a new policy that slashed your
premiums in half and cut your co-pays to practically nothing.<span style="mso-spacerun: yes;"> </span>Even when the application process faltered,
you defended the new order.<span style="mso-spacerun: yes;"> </span>Friends and
family held you up as an example of its success.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Granted,
your gratitude waned when you learned the new, cheaper plan excluded your local
hospital and its doctors.<span style="mso-spacerun: yes;"> </span>But soon,
undeterred, you found a competitive policy and made the switch before the
cutoff date.<span style="mso-spacerun: yes;"> </span>Progress is always bumpy,
you told yourself.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; mso-pagination: none;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">You
were so innocent.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The
weeks that followed were filled with obtaining authorizations for ongoing
prescriptions.<span style="mso-spacerun: yes;"> </span>Some had to be
transferred to a new mail-order pharmacy.<span style="mso-spacerun: yes;">
</span>Small hassles, to be sure, but you believed this was a phase that would
pass.<span style="mso-spacerun: yes;"> </span>Only when your primary physician
suggested you consult a specialist—a cardiologist for a routine scan--did a
true sense of panic dawn.<span style="mso-spacerun: yes;"> </span>"The
doctor won't see patients with <i style="mso-bidi-font-style: normal;">any</i> of
the new plans," the receptionist politely but bluntly informed you.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Ditto
the second and third cardiologist referrals.<span style="mso-spacerun: yes;">
</span>Next, your beloved urologist, whom you found only last year after
rejecting several others, said essentially the same thing.<span style="mso-spacerun: yes;"> </span>Even your long-time gastroenterologist and
colorectal surgeon (six years ago you had a colectomy, hence the wazoo
reference) blackballed you.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">It
seemed impossible.<span style="mso-spacerun: yes;"> </span>You had been so
careful, so sure.<span style="mso-spacerun: yes;"> </span>A physician friend
explained that the new plans are simply not paying doctors a fair and adequate
rate.<span style="mso-spacerun: yes;"> </span>Doctors who accept them are losing
money.<span style="mso-spacerun: yes;"> </span>This is how insurers are making
up for what they've had to give up under Obamacare.<span style="mso-spacerun: yes;"> </span>Soon, your friend cautioned gloomily, many
doctors could go out of business.<span style="mso-spacerun: yes;"> </span>It
could become practically impossible to find any doctors willing to practice.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">You
do not believe it.<span style="mso-spacerun: yes;"> </span>Obamacare couldn't be
the end of medicine as we've known it.<span style="mso-spacerun: yes;">
</span>Yet for now, you have to choose between seeing specialists you don't
want or paying full-freight for ones you do.<span style="mso-spacerun: yes;">
</span>In which case, why have insurance at all?<span style="mso-spacerun: yes;"> </span>Then you remember: you don't have that choice
anymore.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">You
are stuck—stuck with a cheap plan that doesn't serve your needs.<span style="mso-spacerun: yes;"> </span>It doesn't matter that you went for the
"platinum" option, foregoing tax breaks you might have received from
the state-sponsored exchange.<span style="mso-spacerun: yes;"> </span>It's still
no good.<span style="mso-spacerun: yes;"> </span>You even asked your broker if
there's any kind of supplemental, stopgap policy you could purchase.<span style="mso-spacerun: yes;"> </span>She said no.<span style="mso-spacerun: yes;">
</span>You can't change anything until the next open enrollment in mid-November.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Will
there be a better choice then?<span style="mso-spacerun: yes;"> </span>You can
only hope.<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";">Ben
Mattlin<br />
Author of <i style="mso-bidi-font-style: normal;">Miracle Boy Grows Up: How the
Disability Rights Revolution Saved my Sanity</i><br />
Los Angeles, CA</span></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com2tag:blogger.com,1999:blog-8924073396827403351.post-32044002800201798422014-02-22T14:45:00.000-08:002014-02-22T14:45:27.981-08:00TAKE YOUR SEATS
<span style="font-family: Arial;">The realization came in the course of searching for a new
cushion for my wheelchair.<span style="mso-spacerun: yes;"> </span>I use a
wheelchair every day, all day long, and have my whole life.<span style="mso-spacerun: yes;"> </span>Born with spinal muscular atrophy, a
degenerative neuromuscular delight, I've never stood or even tied my own shoes--but
I know a thing or two about wheelchairs and have bought cushions before.<span style="mso-spacerun: yes;"> </span>This time turned out to be a fiasco.<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">To be sure, I could easily have purchased any number of
standard cushions.<span style="mso-spacerun: yes;"> </span>Your basic
off-the-drugstore-shelf variety, however, wouldn't provide the support and
comfort I sought.<span style="mso-spacerun: yes;"> </span>My skinny, bony backside
requires something more high-end and expensive.<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">From magazine ads and Web chatter I knew there were several
new types of cushions on the market.<span style="mso-spacerun: yes;"> </span>Until
five years ago I used a fancy kind of memory foam.<span style="mso-spacerun: yes;"> </span>Then I spent a grueling three months in the
hospital, largely due to botched surgery, and developed my first (and so far
only) pressure sore—a big, ugly, open wound on my tailbone.<span style="mso-spacerun: yes;"> </span>When I at last returned to my wheelchair, my
doctor recommended an air cushion to promote healing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">I never really liked it, but it's been okay.<span style="mso-spacerun: yes;"> </span>Then, recently, my right leg has been falling
asleep.<span style="mso-spacerun: yes;"> </span>So it's time to consider a
change. Gel-filled? Hybrid foam-air? Latex-topped?<span style="mso-spacerun: yes;"> </span>I called the local wheelchair clinic, which
turned out to be not what it used to be.<span style="mso-spacerun: yes;">
</span>I was asked for a doctor's prescription before making an
appointment.<span style="mso-spacerun: yes;"> </span>Which I did.<span style="mso-spacerun: yes;"> </span>At the appointment, after presenting my
insurance card and proffering my $20 co-pay, I was led to a depressing space
where a beleaguered employee reviewed my paperwork and declared I needed to
speak to someone else, who would call me in a couple days.<span style="mso-spacerun: yes;"> </span>"Let me make sure we have your insurance
information," he inserted before I disappeared.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">Only after driving away did I begin to think about how Blue
Cross was going to be billed for a consultation I hadn't actually received.<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">But that was just the beginning.<span style="mso-spacerun: yes;"> </span>Days went by, with no phone call.<span style="mso-spacerun: yes;"> </span>So I called and emailed.<span style="mso-spacerun: yes;"> </span>When I finally spoke to the seating specialist,
she immediately suggested I might be underestimating the problem, wanted me to
consider getting a whole new chair and possibly a new bed!<span style="mso-spacerun: yes;"> </span>"Let me look into cushions first,"
I insisted.<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">She then proceeded to tell me she'd have to check my
insurance before we could talk further.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">But that familiar insurance drill is only part of the
problem.<span style="mso-spacerun: yes;"> </span>First, there's the ridiculous, dim-witted,
inefficient bureaucracy for even the simplest procedures such as choosing a
wheelchair cushion.<span style="mso-spacerun: yes;"> </span>More irksome still
is the arrogance--the way we the customers/patients are so often treated as
"cases" or faceless accounts, treated as kindly as witless children,
but never respected or listened to.<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">I wanted to shout, "I don't care how trained you are—I've
used a wheelchair for nearly half a century.<span style="mso-spacerun: yes;">
</span>I am the authority here!"<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">That's when it struck me: I was experiencing a microcosm
that illuminates the macrocosm: the plain, simple truth of what's wrong with our
health-care system.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">It's not Obamacare, frivolous malpractice suits, big pharma,
the declining number of doctors, the "brain drain" of young
professionals who flee overseas, the aging population, nor any of the other
bêtes noires that experts cite.<span style="mso-spacerun: yes;"> </span>It's
something much more prosaic and closer to home.<o:p></o:p></span><br />
<br />
<span style="font-family: Arial;">If the seating specialist has something useful to
contribute, she deserves to be respected and paid for her time, of course.<span style="mso-spacerun: yes;"> </span>Yet if I go into a shop--even a high-end
one--I don't expect to negotiate for the sales clerk's attention; his or her
compensation is rolled into the purchase price of whatever I buy. <span style="mso-spacerun: yes;"> </span>Why should choosing a wheelchair cushion be
any different?<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Why are we treated as something
less than customers?</i></b><o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">I concede that these professionals might have ideas I hadn't
thought of.<span style="mso-spacerun: yes;"> </span>That's why I contacted them
in the first place.<span style="mso-spacerun: yes;"> </span>I'm willing to
listen.<span style="mso-spacerun: yes;"> </span>I only ask that they give me the
same courtesy. <o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">Granted, this is but one little example.<span style="mso-spacerun: yes;"> </span>Still, if this sort of condescending, time-
and money-wasting nonsense goes on on such a small scale, imagine what's
happening when there's real money involved!<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">Yes, there are bigger concerns—outrageous malpractice suits,
greedy drugmakers, physicians who play God, and so forth.<span style="mso-spacerun: yes;"> </span>But let's not be blindsided to the everyday,
small-time pilfering and patronizing to which people like me have grown all too
accustomed.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">Perhaps the solution to what ails our health-care system lies
not from the top down but from the bottom up.<span style="mso-spacerun: yes;">
</span>Tip O'Neill used to say all politics is local.<span style="mso-spacerun: yes;"> </span>Maybe the same is true here.<span style="mso-spacerun: yes;"> </span>You want to know what's wrong with the
system, look no further than your neighborhood wheelchair dispensary.<o:p></o:p></span><br />
<o:p><span style="font-family: Arial;"> </span></o:p><br />
<span style="font-family: Arial;">###<o:p></o:p></span><br />
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com1tag:blogger.com,1999:blog-8924073396827403351.post-38624907090978583792013-11-15T16:13:00.000-08:002013-11-15T16:13:13.069-08:00CHASING INSURANCE<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Several years ago I launched this blog as a way to reflect
on recent experiences or esoteric discoveries from which I'd learned something
useful, something to remember for future endeavors.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Finally, at long last, I might actually have a post that fits that original mission.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Yes, this is another story about health-insurance reform.<span style="mso-spacerun: yes;"> </span>I've been a supporter.<span style="mso-spacerun: yes;"> </span>I thought I knew all about it.<span style="mso-spacerun: yes;"> </span>I thought we'd have no problems.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Blue Shield told me it would automatically convert me to a new
plan that's not only better but would save me about $200 a month!<span style="mso-spacerun: yes;"> </span>It sounded so good, I was going to add my
wife and daughters (who have been covered by Aetna, which is leaving
California).<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Then I heard something on the radio.<span style="mso-spacerun: yes;"> </span>It suggested checking your new policy's
network of physicians to make sure your doctors are still included.<span style="mso-spacerun: yes;"> </span>I hadn't thought of that.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Sure enough, the new and better plan had found a legal way
to skimp--by shrinking the "network."<span style="mso-spacerun: yes;">
</span>None of my doctors would be part of it.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">When I called Blue Shield to double-check, I got a confusing
answer.<span style="mso-spacerun: yes;"> </span>"I don't know," said
the customer service agent.<span style="mso-spacerun: yes;"> </span>"Our
computers might not be up to date.<span style="mso-spacerun: yes;"> </span>Call
your doctors' offices."<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">So I did.<span style="mso-spacerun: yes;"> </span>The
doctors' offices reassured me that they WILL still be part of the Blue Shield Preferred
Provider Network.<span style="mso-spacerun: yes;"> </span>No worries, right?<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Still, the discrepancy bothered me.<span style="mso-spacerun: yes;"> </span>I particularly didn't want to be recommending
Blue Shield to my family if it was going to suck. <o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">I called <strong><a href="http://www.stayinsured.com/" target="_blank">Jeni Blumenthal</a></strong>.<span style="mso-spacerun: yes;">
</span>She's a local insurance broker.<span style="mso-spacerun: yes;"> </span>Why
didn't I call her sooner?<span style="mso-spacerun: yes;"> </span>Well, I'm the
kind of guy who goes directly to the insurers, that's why.<span style="mso-spacerun: yes;"> </span>I never used a travel agent either.<span style="mso-spacerun: yes;"> </span>(You older folks may remember when there used
to be travel agents.)<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Jeni instantly understood my problem, practically finishing
my sentences for me.<span style="mso-spacerun: yes;"> </span>"UCLA--"
which is the group most of my doctors are part of "--is in the Blue Shield
Preferred Provider Network only for group plans, not individual policies,"
she explained.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Aha!<span style="mso-spacerun: yes;"> </span>In one sentence
she had solved a mystery that had been dogging me for weeks!<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">Blue Cross, on the other hand, would cover the UCLA doctors
but did not offer a PPO plan in my area, meaning if I went out of network I'd
have to foot the entire bill.<span style="mso-spacerun: yes;"> </span>Also, some
of my doctors are affiliated with Cedars-Sinai, which I guess is so far away (half-hour
drive, in Beverly Hills) that none of the local carriers would cover them!<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">But, she said, CIGNA was going to be offering a plan in my
area that would include all of my doctors.<span style="mso-spacerun: yes;">
</span>Details such as price won't be released until next week.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">That's assuming, of course, that Washington doesn't change
everything before then.<span style="mso-spacerun: yes;"> </span>Honestly, health
insurance has become like the weather in Boston.<span style="mso-spacerun: yes;"> </span>If you don't like it, just wait a few minutes
and it'll change.<o:p></o:p></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;">So stay tuned!</span></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-35453450191411181822013-09-18T12:33:00.000-07:002013-09-18T12:33:11.501-07:00FAIRNESS FOR DISABLED WORKERS (AT LAST)?<span style="font-family: Verdana, sans-serif;">
</span><span style="font-family: Verdana, sans-serif;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">In the
last week of August, just in time for Labor Day, <strong><a href="http://www.politico.com/multimedia/video/2013/08/joe-biden-remarks-at-the-american-legion-convention-full-.html" target="_blank">Vice President Joe Biden announced</a></strong> that the Obama Administration would pursue requiring federal
contractors to fill at least 7 percent of their workforce with people with
disabilities.<o:p></o:p></span></span></span><br />
<span style="font-family: Verdana, sans-serif; font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">He was
speaking at the American Legion convention, but the news resonates for all
disabled Americans, not just the veterans he was addressing. <o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The
specific target of 7 percent will give teeth to what has been a vague
affirmative-action goal since President Nixon signed the Rehabilitation Act of
1973.<span style="mso-spacerun: yes;"> </span>It follows upon President Obama's earlier
promise to make the federal government itself a model of equal opportunity
employment.<span style="mso-spacerun: yes;"> </span>But this additional step is
particularly meaningful because it fulfills a 40-year-old bipartisan promise
to, as Biden said, "help ensure equal rights and employment opportunities
for veterans and people with disabilities." <o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I was
not yet 10 when the Rehab Act became law, but I was already a
wheelchair-user.<span style="mso-spacerun: yes;"> </span>I was born with a
neuromuscular condition called spinal muscular atrophy, which rendered me
quadriplegic.<span style="mso-spacerun: yes;"> </span>The Rehab Act was the
first far-reaching piece of legislation defending the rights of folks like me.<span style="mso-spacerun: yes;"> </span>It took four more years, and nationwide protests
and sit-ins, for one of its most important provisions—Section 504, which
requires equal access for the handicapped in federally funded institutions and
programs—to become codified.<span style="mso-spacerun: yes;"> </span>As a
result, I was able to attend almost any college I wanted.<span style="mso-spacerun: yes;"> </span>At least in theory.<span style="mso-spacerun: yes;"> </span>The law went into effect in 1980, the very
year I graduated from high school.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Of
course, that transition wasn't easy and this one won't be either.<span style="mso-spacerun: yes;"> </span>At the time, some universities were frank
about the challenges of accommodating a student in a wheelchair.<span style="mso-spacerun: yes;"> </span>"It'll be damn difficult," one
admissions officer told my father.<span style="mso-spacerun: yes;">
</span>Others bent over backwards to avert a lawsuit, even accepting me before
I had actually filed an application.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I ended
up at Harvard, one of its first—if not <i style="mso-bidi-font-style: normal;">the</i>
first—quadriplegic freshmen admitted.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">After
all these years I assumed that the Rehab Act had done its job.<span style="mso-spacerun: yes;"> </span>It had gotten stuffy old places like Harvard
to accommodate students like me.<span style="mso-spacerun: yes;"> </span>I did
not know about federal contractors, about Section 503.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Some
might say that in clarifying and enforcing Section 503, which merely required
federal contractors to "develop and implement a written affirmative action
program," the Obama Administration is fixing a problem that didn't exist.<span style="mso-spacerun: yes;"> </span>To me, though, it's more accurate to say the
president went out of his way to bring people with disabilities into parity
with other minorities and women.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Indeed,
the issue was barely on disability-rights activists' back burners.<span style="mso-spacerun: yes;"> </span>A hotter concern has been the UN's Convention
on the Rights of Persons with Disabilities, to safeguard disability rights
internationally.<span style="mso-spacerun: yes;"> </span>Or how to stop Medicaid
from shunting recipients into expensive, neglectful nursing homes instead of
allowing them home-based, self-directed care--a cause the president seems to
favor, in his support of the Olmstead ruling.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">But
employment disparities should not be overlooked.<span style="mso-spacerun: yes;"> </span>In June, the U.S. Department of Labor
estimated that unemployment among employment-age people with disabilities was
14.2 percent, almost twice the 7.6 percent for the rest of the population.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Granted,
some disabled people may be easier to employ than others.<span style="mso-spacerun: yes;"> </span>In fact, an earlier Labor Department proposal
for enforcing Section 503 called for a lower threshold of just 2 percent for
the most severely disabled.<span style="mso-spacerun: yes;"> </span>But we have
to face the fact that there is still unwarranted prejudice.<span style="mso-spacerun: yes;"> </span>Even with my Harvard degree, I never could
find a job.<span style="mso-spacerun: yes;"> </span>Instead, I took freelance
writing assignments.<span style="mso-spacerun: yes;"> </span>Voice-recognition
computers certainly upped my productivity.<span style="mso-spacerun: yes;">
</span>I'm using it to write this.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">So it might
take a little creative thinking, flexibility and technology to meet these employment
goals.<span style="mso-spacerun: yes;"> </span>Is flex-time an option?<span style="mso-spacerun: yes;"> </span>Can some of the work be performed at
home?<span style="mso-spacerun: yes;"> </span>People who live with disabilities
tend to be expert problem-solvers and self-starters.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">My hope is
that the new standard will help people with disabilities take control of their
own lives and reduce their dependence on government subsidies. More than that,
I hope it will help show the nondisabled coworkers what we're made of.<span style="mso-spacerun: yes;"> </span>After all, the point of diversity and full
inclusion is not just to benefit the marginalized.<span style="mso-spacerun: yes;"> </span>It is to create the kind of synergies that
can only come from expanding one's boundaries, from welcoming the new and
different, and allowing the cross-fertilization of ideas.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">It's
unfortunate this important piece of civil-rights progress was overshadowed by
the following day's tributes to the 50th anniversary of the March on
Washington.<span style="mso-spacerun: yes;"> </span>It's surely something Martin
Luther King would have supported.<o:p></o:p></span></span></div>
<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif;">
<span style="font-family: "Times New Roman","serif";">###<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com1tag:blogger.com,1999:blog-8924073396827403351.post-59121458942200160522013-08-20T13:06:00.000-07:002013-08-20T13:06:45.953-07:00The New "Ironside": Good or Bad for Crips?<span style="font-family: Verdana, sans-serif;">
</span><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">When NBC
announced a reboot of “Ironside” was coming this fall, you might have dismissed
it as just the latest Hollywood rehash.<span style="mso-spacerun: yes;"> </span>But
for wheelchair-users like me, it’s either cause for celebration or an omen of
despair. <o:p></o:p></span></span><br />
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The old
Raymond Burr series about a tough-as-nails paraplegic ex-police chief was never
exactly enlightened.<span style="mso-spacerun: yes;"> </span>But as a disabled
kid in the 1960s and 70s, I clung to it with near religious fervor.<span style="mso-spacerun: yes;"> </span>For me, Chief Ironside was a model for
refusing to be defined by others’ limited expectations. <span style="mso-spacerun: yes;"> </span>I came to rely on him as a kind of lifeline. <o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I never
could walk or even stand, but like the hardboiled cop I didn’t want to be
underestimated.<span style="mso-spacerun: yes;"> </span>I felt determined to
live a full, active life--to strut my stuff. <o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">So I
welcome the return of “Ironside,” but with a note of caution.<span style="mso-spacerun: yes;"> </span>Will the producers screw it up?<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">To be
sure, the original program had flaws.<span style="mso-spacerun: yes;"> </span>It
never talked much about the Chief’s disability.<span style="mso-spacerun: yes;">
</span>Yet that was partly what made the portrayal so appealing.<span style="mso-spacerun: yes;"> </span>It was simply an aspect of his
character.<span style="mso-spacerun: yes;"> </span>It didn’t define him, just as
mine wouldn’t define me.<span style="mso-spacerun: yes;"> </span>I knew his
fictional physical limitations were different from my real ones.<span style="mso-spacerun: yes;"> </span>But for me, just seeing a guy in a chair who
was fearless and in charge was revelatory and redemptive.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The old
show had other shortcomings, too.<span style="mso-spacerun: yes;">
</span>Ironside rarely had to explain himself to others, as I was always having
to do.<span style="mso-spacerun: yes;"> </span>“I can’t walk,” I would answer nosy
strangers.<span style="mso-spacerun: yes;"> </span>“I was born this way. … It’s
a neuromuscular weakness called spinal muscular atrophy.”<span style="mso-spacerun: yes;"> </span>On “Ironside,” no one asked because everyone
knew.<span style="mso-spacerun: yes;"> </span>He’d been shot in the line of
duty. His reputation preceded him. </span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">He also
had a knack for materializing on the upper floors of buildings with no elevator,
and apparently never had a problem finding an accessible bathroom.<span style="mso-spacerun: yes;"> </span>Late in the series, he even drove his own van
without adaptive hand controls!<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Nevertheless,
the show introduced me, and much of the world, to a wheelchair-accessible van,
complete with automatic lift.<span style="mso-spacerun: yes;"> </span>Ironside's
office had a built-in ramp and speakerphone, too.<span style="mso-spacerun: yes;"> </span>I didn't have any of that, and you'd better
believe I wanted it all.<span style="mso-spacerun: yes;"> </span>The empowering
paraphernalia had the effect of magic, especially compared to the other
prominent image of disability on TV in those days--the pitiful kids on
telethons.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Granted,
my memories are hopelessly tinged with nostalgia, as will be my appraisal of
the new version.<span style="mso-spacerun: yes;"> </span>I’m bound to tsk-tsk
every little difference—such as moving the series from San Francisco, a source
of endless plot lines in the days of Haight-Ashbury hippiedom, to New York.<span style="mso-spacerun: yes;"> </span>And switching the composition of Ironside’s
hand-picked team, if not eliminating it altogether, seems a no-no.<span style="mso-spacerun: yes;"> </span>In the original, his crew included one of
TV’s first female police officers (two of the first, actually, considering a
cast change in year 4) and a smart young African-American man who frequently
faced down racism as he rose from the Chief’s assistant to a full-fledged
attorney.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Not to
mention the casting of the lead role.<span style="mso-spacerun: yes;">
</span>Instead of a heavyset, gruff-yet-avuncular old white guy, we now have
his opposite in buff, middle-aged Blair Underwood (who, like Burr, became
famous playing a TV lawyer).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">But none
of that matters.<span style="mso-spacerun: yes;"> </span>The new show could still
win me over.<span style="mso-spacerun: yes;"> </span>Yes, some will complain
about a nondisabled actor once again portraying a paraplegic.<span style="mso-spacerun: yes;"> </span>Even that doesn’t faze me, though, if he
plays it well.<span style="mso-spacerun: yes;"> </span>And by well, I mean
realistically.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Indeed, a
touch more disability realism than the original managed would be most welcome.<span style="mso-spacerun: yes;"> </span>No, it shouldn’t overwhelm the story.<span style="mso-spacerun: yes;"> </span>We don’t need to see Ironside’s bladder and
bowel procedures.<span style="mso-spacerun: yes;"> </span>This isn’t a documentary.<span style="mso-spacerun: yes;"> </span>But every now and then, couldn’t the new
Chief wrestle with equipment failure, pressure sores, strangers’ stupid
questions, or architectural barriers?<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Let’s
face it: Simply presenting a tough guy on wheels isn’t enough to impress anyone
anymore.<span style="mso-spacerun: yes;"> </span>Not in the age of Stephen
Hawking, “Push Girls,” or “The Sessions.” <span style="mso-spacerun: yes;"> </span>Audiences are smarter than they used to
be.<span style="mso-spacerun: yes;"> </span>To get the willing suspension of
disbelief, you've got to infuse some convincing details.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Better
still, the new show could have a social conscience.<span style="mso-spacerun: yes;"> </span>It could address the economic and political
inequities people like me face.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">But
let’s not get carried away.<span style="mso-spacerun: yes;"> </span>If it
doesn’t do any harm, that might have to be good enough.<span style="mso-spacerun: yes;"> </span>Of course, I could be pleasantly
surprised.<span style="mso-spacerun: yes;"> </span>I never imagined we’d see so
many people in wheelchairs riding city buses as we do today, or that Michael J.
Fox would return to prime time with Parkinson’s (as is happening this fall). <span style="mso-spacerun: yes;"> </span>Disability inclusion has come a long way.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Perhaps the
original “Ironside” helped make this progress possible.<span style="mso-spacerun: yes;"> </span>Its new incarnation could play a similar
role, as long as it recognizes its potential to open people’s eyes to life’s possibilities.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
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<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">In retrospect, wish I had spoken more about disability
history—the importance of teaching kids with disabilities about their place in
the continuum of progress, imparting them with a sense of pride and justice.<span style="mso-spacerun: yes;"> </span>The big picture, to me, is what's most
inspiring.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Arial;"> </span></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">But at the Families of Spinal Muscular Atrophy conference, parents
seem so desperate for solutions, for coping strategies.<span style="mso-spacerun: yes;"> </span>Understandable, to be sure.<span style="mso-spacerun: yes;"> </span>Yet something is lost if you don't see SMA as
part of the normal variety/diversity of human life.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Arial;"> </span></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Maybe next time…<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Arial;"> </span></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Anyway, here are the remarks I prepared for my two-minute
introduction.<span style="mso-spacerun: yes;"> </span>Didn't get to use my cheat
sheet, though, because there was no convenient place to prop my paper!<span style="mso-spacerun: yes;"> </span>So I winged it.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">This is what I would've said</span>–
– –
</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Arial;"> </span></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">I'm delighted to be
here today, and delighted you're all here, too.<span style="mso-spacerun: yes;">
</span>What we're going to talk about is very important to me, very close to my
heart.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;"><o:p> </o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">It's nice, too, that in
this crowd I don't have to define "spinal muscular atrophy."<span style="mso-spacerun: yes;"> </span>You all know what it is.<span style="mso-spacerun: yes;"> </span>You probably know the statistics and
understand the science better than I do!<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;"><o:p> </o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">But my message may
surprise you.<span style="mso-spacerun: yes;"> </span>You see, I don't want to
be an inspiration. People keep telling me I'm inspirational, but that's never
been my intention.<span style="mso-spacerun: yes;"> </span>I've always just sort
of lived my life the best I could with the resources I had.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;"><o:p> </o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">I'm a married Harvard
graduate, father of 2, freelance journalist, NPR commentator and, now, book
author. I am also, as my late friend Harriet McBryde Johnson–who also had
SMA–put it, "in the first generation to survive to such
decrepitude."<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;"><o:p> </o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">Not until I was in my
40s did I begin to reflect on HOW I'd gotten where I am. I mean, if it wasn't
my heroic courage & pluckiness, what on earth was it?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;"><o:p> </o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">Well, I had 2 key advantages:
<span style="mso-spacerun: yes;"> </span>First, from my parents I had this wild
idea that I was entitled to everything anybody else was. Second, progress was
on my side–medical progress, technological progress, and civil-rights progress.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;"><o:p> </o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
<div class="MsoNormal" style="line-height: 150%; margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 14pt; line-height: 150%;">But perhaps most of
all, what's buoyed me onward is the community of people with disabilities, this
community of SMA families. So thank you for having me. I welcome your questions.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
</div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-86486053935651064992013-05-05T17:15:00.000-07:002013-05-05T17:15:14.144-07:00Keep your Fountain of Youth!<br />
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<span style="font-family: Arial;"><strong>I</strong> have few hobbies.<span style="mso-spacerun: yes;"> </span>I
don't play tennis, golf, or Xbox.<span style="mso-spacerun: yes;"> </span>I watch
the occasional NBA game or police procedural.<span style="mso-spacerun: yes;">
</span>On weekends, my wife and I like to do the tough crossword puzzles together,
a cooperative team effort.<span style="mso-spacerun: yes;"> </span>And I read,
of course, but for me that's almost as much a professional endeavor as a
pleasant pastime.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">None of these activities are done on anything resembling a regular,
devoted basis, as a true hobby would be.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Yet I do indulge in a guilty pleasure I just can't seem to
stop: I like to watch old movies (and some old TV shows).<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Hard to say why exactly.<span style="mso-spacerun: yes;">
</span>It used to be—in the years after I graduated from college—that I
considered myself almost an unofficial student of cinematic history.<span style="mso-spacerun: yes;"> </span>I rented every intriguing old movie I could
find at specialty video stores.<span style="mso-spacerun: yes;"> </span>I went
gaga for Fritz Lang and Ernst Lubitsch, "discovered" forgotten stars
such as Warren William or Pola Negri.<span style="mso-spacerun: yes;"> </span>I
took in everything from the obscure European silent to the popular romantic
comedies of the so-called Golden Age.<span style="mso-spacerun: yes;"> </span>I
was determined to memorize each one so I'd never accidentally watch the same
film twice.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><em><strong>You like the Tracy-Hepburn matchups?<span style="mso-spacerun: yes;"> </span>Ah, but have you ever seen "Keeper of
the Flame"?<span style="mso-spacerun: yes;"> </span>You think "It's A
Wonderful Life" is a great holiday flick?<span style="mso-spacerun: yes;">
</span>Have you ever seen "The Shop Around The Corner"?</strong></em></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><o:p></o:p></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Aside from the escapist pleasures of the moving-images
themselves, I was equally fascinated by the cultural and historical
implications.<span style="mso-spacerun: yes;"> </span>Were women portrayed more
fairly in the early years of Hollywood (Marion Davies, Constance Bennett, etc.)
than in, say, the reactionary 1950s?<span style="mso-spacerun: yes;"> </span>Why
was Sidney Poitier so important to the Civil Rights Movement?<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">And perhaps most relevant to me, why were there so many
villains with disfigurements and/or outright disabilities?<span style="mso-spacerun: yes;"> </span>(Can you hear me, Lon Chaney?)<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><strong>Last week</strong>, for no particular reason, I started to re-watch "Monkey
Business."<span style="mso-spacerun: yes;"> </span>Not the Marx Brothers
vehicle from the 1930s but the 1952 film of the same name, perhaps best known
nowadays as an early vehicle from Marilyn Monroe.<span style="mso-spacerun: yes;"> </span>(Make your own "chassis"
joke.)<span style="mso-spacerun: yes;"> </span>She's quite funny as the
archetypal Dumb Blonde Secretary, but that's not why I started watching
it.<span style="mso-spacerun: yes;"> </span>Honestly.<span style="mso-spacerun: yes;"> </span>I was randomly searching for Cary Grant
titles.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Anyway, Grant is the real star of the movie, along with
Ginger Rogers.<span style="mso-spacerun: yes;"> </span>In many ways it's a sort
of remake of his "Bringing Up Baby"--he's an absent-minded scientist
who has hijinks involving obstreperous animals. <span style="mso-spacerun: yes;"> </span>To my surprise, I was hooked and had to watch
it all the way through.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><o:p></o:p></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Now, maybe it's a sign of encroaching Alzheimer's, but I
really didn't remember any of the details of this movie though I'm sure I
must've seen it before.<span style="mso-spacerun: yes;"> </span>(Mustn't I?)<span style="mso-spacerun: yes;"> </span>If anything, I vaguely recall once upon a
time thinking it was too silly to bear.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Yes, it IS silly.<span style="mso-spacerun: yes;"> </span>It's
slapstick comedy.<span style="mso-spacerun: yes;"> </span>But here's the thing:
I think it has a terrific message for people with disabilities.<span style="mso-spacerun: yes;"> </span>Especially people aging with disabilities.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">Not to give too much away, but there's an accidental
discovery of an anti-aging formula, a lab-created Fountain of Youth.<span style="mso-spacerun: yes;"> </span>Which creates situations aplenty for the
actors to behave like, well, wild intoxicated idiots.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><o:p></o:p></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">In the end, of course, they realize that shedding the
strictures of age ain't so great.<span style="mso-spacerun: yes;"> </span>Simple
message—youth and its concomitant healthiness aren't all they're cracked up to
be.<span style="mso-spacerun: yes;"> </span>He'd rather need eyeglasses and suffer
through his bursitis or whatever—and she'd rather be stodgily middle-aged (at
all of 41!)—than be the outrageous, insecure, jealous, wasteful and antisocial
hellions they were as healthy, energetic kids.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><o:p></o:p></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">It's sweet.<span style="mso-spacerun: yes;"> </span>To me,
however, there's a profound disability message in this.<span style="mso-spacerun: yes;"> </span>Sure, depending on assistive devices such as
wheelchairs can be a big inconvenience.<span style="mso-spacerun: yes;">
</span>But you can live happily with such limitations and dependencies.<span style="mso-spacerun: yes;"> </span>To an extent, you're only as old or as
decrepit as you feel yourself to be.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><o:p></o:p></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;">I guess you can find profound messages or, for that matter,
offensive stereotypes in all kinds of places.<span style="mso-spacerun: yes;">
</span>All I know is, this stupid old movie kept me grinning for days!</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLt6bTlpus9Ue-SgJkIQJ7NSpq2A7EJT5pX4GouzUynI_Lh0PiKQtQZq9NOMdPWfQ7mjsHZrss4wY0q8uX3-yoKvKTiLLNVgPk9tGYNdGKo91KHEVGh78ygWqXVB_DE8lZi6XVEVcLAUI/s1600/Monkey+Business.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLt6bTlpus9Ue-SgJkIQJ7NSpq2A7EJT5pX4GouzUynI_Lh0PiKQtQZq9NOMdPWfQ7mjsHZrss4wY0q8uX3-yoKvKTiLLNVgPk9tGYNdGKo91KHEVGh78ygWqXVB_DE8lZi6XVEVcLAUI/s320/Monkey+Business.jpg" width="218" /></a></div>
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</div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: Arial;"><a href="http://www.amazon.com/Monkey-Business/dp/B001MTBW5K/ref=tmm_aiv_title_0?ie=UTF8&qid=1367798776&sr=8-2" target="_blank"><strong>http://www.amazon.com/Monkey-Business/dp/B001MTBW5K/ref=tmm_aiv_title_0?ie=UTF8&qid=1367798776&sr=8-2</strong></a><o:p></o:p></span></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-88557458685648886732013-03-10T14:52:00.001-07:002013-03-10T15:57:56.761-07:00THE INSANITY OFFENSE<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><strong>Scapegoating the Mentally Ill<o:p></o:p></strong></span></span><br />
<span style="font-family: Verdana, sans-serif;">
(A work-in-progress, on the slow course of progress...)</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"></span></span><br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The current
national discussion about gun control, though plainly necessary and important,
takes a dangerous turn when it sets sights on people with mental illness.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I don't have
a mental illness and can't claim to understand the many varieties and
ramifications of that diagnosis.<span style="mso-spacerun: yes;"> </span>But I
have a physical disability, which can be just as stigmatizing.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"></span></span></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="mso-spacerun: yes;"></span><span style="font-family: Verdana, sans-serif;">I was born with spinal muscular atrophy, a
genetic neuromuscular weakness.<span style="mso-spacerun: yes;"> </span>I'm a
lifelong wheelchair-user with pretty much no use of my concentration-camp-thin
arms and hands.<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="mso-spacerun: yes;"><span style="font-family: Verdana, sans-serif;"></span></span></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="mso-spacerun: yes;"></span><span style="font-family: Verdana, sans-serif;">Sometimes when people
see me they become a little afraid.<span style="mso-spacerun: yes;"> </span>I
don't want people to fear me, and I don't think we should fear people with
mental illness either.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">To be
sure, the need to cut gun violence is paramount.<span style="mso-spacerun: yes;"> </span>And I'm not against background checks to
screen gun buyers for a criminal record.<span style="mso-spacerun: yes;">
</span>Recidivism among violent offenders is alarmingly high.<span style="mso-spacerun: yes;"> </span>That's a very different kind of precaution,
though, from targeting those who rely on meds to keep their thoughts and
emotions aligned.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I
concede that mental illness enters the debate only in the context of preventing
sufferers from falling through the cracks, to help them as much as to avert a
future disaster.<span style="mso-spacerun: yes;"> </span>This is not a
modern-day witch hunt.<span style="mso-spacerun: yes;"> </span>Yet I can't help
feeling that the notion of using mental illness as a guide to identifying those
who might be likely to commit violence one day just smacks of the disability
equivalent of racial profiling.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">As
someone who was not expected to live to adulthood because of a physical
condition, but is now a 50-year-old husband, father, Harvard graduate, author
and professional journalist, I don't put much stock in using a diagnosis to
predict what people are and are not capable of.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The fact
is, the majority of people who are diagnosed with a mental illness are
nonviolent.<span style="mso-spacerun: yes;"> </span>Murderers, no doubt, are not
in their right minds.<span style="mso-spacerun: yes;"> </span>Yet many fatal
shootings are never connected with a pattern of mental illness.<span style="mso-spacerun: yes;"> </span>Gang killings, to name one prevalent variety,
may be motivated as much by drug use or peer pressure as anything else.<span style="mso-spacerun: yes;"> </span>Not to mention jihadists, who kill with
religious fervor but rarely go for psychological evaluations. <o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">To me,
the assumption that the mentally ill have especially itchy fingers stems from age-old
stereotypes.<span style="mso-spacerun: yes;"> </span>Back in the 14th century Geoffrey
Chaucer wrote that "cripples" were "crafty," in the sense
of sneaky.<span style="mso-spacerun: yes;"> </span>Where would nightmare tales
be without disfigured, limping, one-armed, hunchbacked, peg-legged, hook-handed,
and eye-patched fiends?<span style="mso-spacerun: yes;"> </span>These are the
forebears of the modern "psycho killer"—a dysfunctional, deformed mind
and body signifying a defective soul. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Science
has been in on it, too.<span style="mso-spacerun: yes;"> </span>Through the
1970s serious academic studies attempted to link particular physical traits with
criminal behavior.<span style="mso-spacerun: yes;"> </span>At some universities,
college students were routinely photographed in various states of undress to document
their proportions—the ratio between their heights and their head sizes, and
other minutia—in an attempt to forecast their fates.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Don't
get me wrong.<span style="mso-spacerun: yes;"> </span>We must do all we can to
curb gun violence.<span style="mso-spacerun: yes;"> </span>But in our rush to
solve a virulent problem, let's not resort to what is really nothing more than a
form of scapegoating.<span style="mso-spacerun: yes;"> </span>We might as well single
out people from a particular neighborhood or socioeconomic subgroup that has a
high murder rate—yet that would be unthinkable, wouldn't it?<span style="mso-spacerun: yes;"> </span>Focusing on those with mental illness should
be just as abhorrent.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
<span style="font-family: "Times New Roman","serif";">###<o:p></o:p></span></span><br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/l5zFsy9VIdM?feature=player_embedded' frameborder='0'></iframe></div>
<span style="font-family: Verdana, sans-serif;">
<a href="http://www.youtube.com/watch?v=vdp42fYKFZ8" target="_blank"><strong>http://www.youtube.com/watch?v=vdp42fYKFZ8</strong></a></span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com1tag:blogger.com,1999:blog-8924073396827403351.post-50120072919054733492012-12-10T16:56:00.000-08:002012-12-10T16:56:01.295-08:00AM A SPECIAL-NEEDS DISABLED CRIPPLE?<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">Recently, a friend wrote me about
an idea he was puzzling over.<span style="mso-spacerun: yes;"> </span>It
concerned the language of disability.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">The very word itself, he said,
was troubling--and I agreed.<span style="mso-spacerun: yes;"> </span>He wished
there were a term that "didn't even remotely imply 'substandard' or
'not,'" he wrote.<span style="mso-spacerun: yes;"> </span>He wished there
were "a different gestalt altogether."<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">(Gestalt!<span style="mso-spacerun: yes;"> </span>Now THERE'S a word!)<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">He's certainly not the first
person to raise these sorts of concerns.<span style="mso-spacerun: yes;"> What's so great about the word "disability"? W</span>hat was
so wrong with the word "handicapped"?<span style="mso-spacerun: yes;">
</span>Is the word "cripple" still considered offensive?<span style="mso-spacerun: yes;"> </span></span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="mso-spacerun: yes;"><span style="font-size: large;"></span></span></span> </div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="mso-spacerun: yes;"></span><span style="font-size: large;">In further explanation, he fleshed out this
scenario:<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">Wouldn't it be nice if people
thought<o:p></o:p></span></span></div>
<span style="font-size: large;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">'There goes Ben, just like me'<o:p></o:p></span></span><br />
<span style="font-size: large;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">and not<o:p></o:p></span></span><br />
<span style="font-size: large;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">'There goes Ben, I'm glad I'm not
him'<o:p></o:p></span></span><br />
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">Well, I couldn't disagree with
that!<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">In answering him, however, I felt
like he'd released a pent-up wellspring of ideas and yearnings.<span style="mso-spacerun: yes;"> </span>Every movement--perhaps every generation--has
gone through the undulations of nomenclature.<span style="mso-spacerun: yes;">
(</span>Okay, maybe that's a bad phrase.)<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">For example, how did we go from "Black
is beautiful" to "Black" is not good, or at least not as good as
"African American"?<span style="mso-spacerun: yes;"> </span>How did
"gay" suddenly become LGBT (and now I'm told it's LGBTQA)?<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">All right, these are rhetorical
questions.<span style="mso-spacerun: yes;"> </span>I'm not so much interested in
the answers as the ideas behind those transitions.<span style="mso-spacerun: yes;"> </span>Are any words or terms intrinsically good or
bad, positive or pejorative, or is it just a matter of context?<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">I told my friend that his idea
was a good one for an essay, but that he might <span style="color: black;">want
to flesh it out a bit.<span style="mso-spacerun: yes;"> </span>Perhaps provide
some linguistic history--for instance, I believe the oldest English word for
someone like me IS "cripple." Chaucer used it, I think.
It referred to someone who creeps along the floor (no doubt related to the word
"creepy"). </span></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">Many folks I know object
to the word "disability" because it does sound so negative, yet at
least it has the advantage of being a term chosen by disability-rights
activists, as opposed to imposed upon us in patronizing fashion by
others. I don't love it, but I think it beats the treacly euphemisms such
as "differently abled," "physically challenged," or
"special needs."<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">On the other hand, I told
my friend, we all have bigger problems to worry about than language, don't we?
I think of this when I hear people use politically correct terms like
"gay" or "African-American" to say something disparaging
and most definitely not politically correct! Do words really change
attitudes? Not sure.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: black; font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="font-size: large;">What do you all
think?<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com1tag:blogger.com,1999:blog-8924073396827403351.post-58131354062209092282012-11-14T15:51:00.000-08:002012-11-14T15:51:20.419-08:00TWO SCORE AND TEN
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">In
a week from now I'll have lived a half-century.<span style="mso-spacerun: yes;">
</span>Turning 50 is something people do all the time, and never without some
trepidation or at least reflection.<span style="mso-spacerun: yes;"> </span>What
surprises me, though, is just how calm I feel about it.<span style="mso-spacerun: yes;"> </span>Guess I've been anticipating the moment for
the past year if not more, so it's actually a bit anticlimactic.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">Or
is it?<span style="mso-spacerun: yes;"> </span>Am I just saying that to calm
myself down?<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">In
the greater scheme of things, what makes my 50th birthday momentous must be the
fact that I wasn't always expected to live to my teens.<span style="mso-spacerun: yes;"> </span>In the dark ages when I was born, doctors
didn't know what to make of my sluggish infantile development.<span style="mso-spacerun: yes;"> </span>I failed to sit.<span style="mso-spacerun: yes;"> </span>I was a floppy baby.<span style="mso-spacerun: yes;"> </span>Many diagnoses were pinned on me by way of
explanation.<span style="mso-spacerun: yes;"> </span>Perhaps chief among the accomplishments
I would never attain: adulthood.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">In
memory, my parents never believed that stuff.<span style="mso-spacerun: yes;">
</span>They held to what must have been a romantic ideal--that I would grow up
and, moreover, could become anything I wanted.<span style="mso-spacerun: yes;">
</span>And fortunately, I didn't want to become anything I couldn't.<span style="mso-spacerun: yes;"> </span>I knew I wasn't going to be an athlete, for
instance, and when MDA--in that early-1970s telethon ad I've done my best to
make famous (or <i style="mso-bidi-font-style: normal;">infamous</i>, really)--declared
that I wanted to be a fireman "if" I grew up, I balked at the
absurdity of it!<span style="mso-spacerun: yes;"> </span>I wanted to be a
scientist, a detective, maybe a starship captain.<span style="mso-spacerun: yes;"> </span>I had bigger fantasies!<span style="mso-spacerun: yes;"> </span>And yes, I saw myself as more brain than
braun.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">Which
is not to say that I didn't have fantasies of physicality, too.<span style="mso-spacerun: yes;"> </span>In fact, I frequently imagined chasing after
bad guys--running and jumping and fighting like my heroes on TV.<span style="mso-spacerun: yes;"> </span>It was just that I saw these uncharacteristic
activities as add-ons, a vague sense of unrealized potential, but not as regular
or likely scenarios in my future.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">After
all, though Capt. Kirk was more than capable of kicking ass, that wasn't why he
was captain, really, was it?<span style="mso-spacerun: yes;"> </span>He was
captain because he knew how to be in charge, knew how to think outside the box.<span style="mso-spacerun: yes;"> </span>He was smart and daring.<span style="mso-spacerun: yes;"> </span>Had leadership qualities … which my teachers
said I possessed as well.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">And
so I went on expecting whatever my version of a normal life was.<span style="mso-spacerun: yes;"> </span>I boldly went to Harvard.<span style="mso-spacerun: yes;"> </span>I boldly fell in love and my girlfriend and moved
across country.<span style="mso-spacerun: yes;"> </span>I boldly looked for work
and, failing, boldly tried to publish novels.<span style="mso-spacerun: yes;">
</span>Got married to that girlfriend, too.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">I
gave up the dream of ever being dubbed a wunderkind when I turned 30.<span style="mso-spacerun: yes;"> </span>Three years later I became a father, a
miracle that was repeated three years after that.<span style="mso-spacerun: yes;"> </span>By and by I found occasional work as a writer.<span style="mso-spacerun: yes;"> </span>In time, technology caught up with me.<span style="mso-spacerun: yes;"> </span>Thanks to the Internet and voice-recognition
computers, I was able to write more, more quickly than ever before, and do
independent online research, submitting my writing without needing others to
deliver it.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">Disability
rights kept up with me, too.<span style="mso-spacerun: yes;"> </span>It gave me
a community, a sense of history, and a new subject to write about.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">Still,
there have been many times over the past 50 years when I doubted I would make
it to this landmark.<span style="mso-spacerun: yes;"> </span>Bad asthma and
bronchitis have periodically undermined my optimism.<span style="mso-spacerun: yes;"> </span>Occasional hospitalizations--especially the
series of unfortunate events that took up most of late-2007 and 2008--brought
me closer to that "undiscovered country" than I'd like to be ever
again.<span style="mso-spacerun: yes;"> </span>Yet somehow I'm still here,
despite occasionally wondering how much longer.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">Are
there still things to do?<span style="mso-spacerun: yes;"> </span>Of course!<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">Besides
the personal goals of seeing my children grow up and so forth, I held in my
heart for many years the dream of publishing a book.<span style="mso-spacerun: yes;"> </span>A real book, distributed by a real
publisher.<span style="mso-spacerun: yes;"> </span>Three months ago, that dream
became a reality.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">I'm
still not quite believing it's true, still in the midst of trying to promote
that book, still incredibly emotionally fragile over its rises and falls in the
Amazon rankings and elsewhere.<span style="mso-spacerun: yes;"> </span>If I get
a good review, even in some obscure Web site, I feel complete as a person.<span style="mso-spacerun: yes;"> </span>If there's a lull and the book seems likely
to die of neglect, I die a little inside, too.<span style="mso-spacerun: yes;">
</span>I'm like the high school nerd waiting breathlessly for a smile from the
popular blonde cheerleader.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">So
here I am, nearly 50, maturing but with definite strains of immaturity.<span style="mso-spacerun: yes;"> </span>And for those of you keeping track, yes, my
birthday this year falls on Thanksgiving--as it did when I was born.<span style="mso-spacerun: yes;"> </span>It happens that way every few years.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">This
time, however, I meet my birthday with many of my life's dreams achieved and
nothing to look back on with regret.<span style="mso-spacerun: yes;"> </span>My
only real fear now is, what will be my next set of dreams, goals,
disappointments, and accomplishments?<span style="mso-spacerun: yes;"> </span>Because
turning 50 shouldn't be just an endpoint; it should also mark a new beginning.<span style="mso-spacerun: yes;"> </span>Yes? You think?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Verdana","sans-serif"; font-size: 10pt;">I'm
game!<o:p></o:p></span></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-64901370099877928512012-10-04T15:11:00.001-07:002012-10-05T09:30:44.197-07:00THE PRESIDENTIAL DEBATES…<span style="font-family: Verdana, sans-serif;">
<span style="font-family: "Times New Roman","serif";">
</span></span><br />
<span style="font-family: Verdana, sans-serif;"><span style="font-family: "Verdana","sans-serif";">... got off to a rousing
start last night (yawn!). But one key issue--one attribute--was conspicuously
absent: </span></span><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Ann
Romney's multiple sclerosis.<o:p></o:p></span></span><br />
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">In the
past, she and hubby Mitt have made a big deal about this.<span style="mso-spacerun: yes;"> </span>And lest you think I'm exaggerating the
importance of multiple sclerosis in this election, at the Democratic National
Convention in August, Michelle Obama made a big point about her father's
multiple sclerosis, too!<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Verdana, sans-serif;"><span style="font-family: "Times New Roman","serif";">
<span style="font-family: "Verdana","sans-serif";">For a
while there it seemed everybody wanted to get on the MS bandwagon. But why? If
experience with multiple sclerosis makes one better suited to be president,
then I should run for emperor!</span></span></span><br />
<br />
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Disabling
conditions like MS can be profoundly educative, to be sure.<span style="mso-spacerun: yes;"> </span>But they hardly make you special, or even
presidential material.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I was
born with spinal muscular atrophy, a congenital and progressive neuromuscular weakness.<span style="mso-spacerun: yes;"> </span>I've never walked or stood, never had much use
of my hands--though I was able to feed myself till about 20 years ago. <span style="mso-spacerun: yes;"> </span>Now my hand strength is completely gone.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Not that
I'm seeking pity.<span style="mso-spacerun: yes;"> </span>Nor do I want to
engage in a game of "who suffered more"—the Romneys, the Obamas, or
myself.<span style="mso-spacerun: yes;"> </span>What I <i style="mso-bidi-font-style: normal;">am</i> saying, however, is that I know the disability experience, and I
know it's not in and of itself grounds for leadership.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Yes, it
can make you humble.<span style="mso-spacerun: yes;"> </span>It can also make
you angry.<span style="mso-spacerun: yes;"> </span>It can make you give up, or
it can lead you to find an inner strength you never knew you had.<span style="mso-spacerun: yes;"> </span>Or it can do none of the above.<span style="mso-spacerun: yes;"> </span>There's really no predicting.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">No
matter how we react to our own disabilities, people call us courageous and
inspiring.<span style="mso-spacerun: yes;"> </span>They mean well, but there's
nothing ennobling about having a disability.<span style="mso-spacerun: yes;">
</span>None of us asked for it or had any special qualifications.<span style="mso-spacerun: yes;"> </span>It simply happened, and it can happen to
anyone.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">You
never know how well or poorly you will cope when disability enters your
life.<span style="mso-spacerun: yes;"> </span>But somehow you <i style="mso-bidi-font-style: normal;">will</i> cope.<span style="mso-spacerun: yes;"> </span>We all do.<span style="mso-spacerun: yes;">
</span>We don't honestly have any choice about it.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">So are
the Romneys or Obamas better people for their encounters with a crippling
condition?<span style="mso-spacerun: yes;"> </span>Possibly.<span style="mso-spacerun: yes;"> </span>But one thing is clear: they didn't survive
it because of their grace or strength of character or gumption.<span style="mso-spacerun: yes;"> </span>They survived simply because they
endured.<span style="mso-spacerun: yes;"> </span>In short, they got lucky.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I
concede that having personal knowledge of a disability does lend a candidate
some common ground with the estimated 50 million Americans who are living with
a disability.<span style="mso-spacerun: yes;"> </span>That's as far as it goes,
though.<span style="mso-spacerun: yes;"> </span>It's just not that unusual a
thing.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">In my
experience, the challenges associated with disability come in three varieties:
First, and arguably foremost, are the physical/medical struggles.<span style="mso-spacerun: yes;"> </span>We do have to fight with our bodies' limitations.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Second
are the societal barriers--the attitudes and obstacles that can isolate people
with disabilities from the mainstream.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Finally
and perhaps most importantly, there are economic issues.<span style="mso-spacerun: yes;"> </span>Disabilities are expensive.<span style="mso-spacerun: yes;"> </span>Even leaving out medical bills, a motorized
wheelchair can easily cost as much as a new car.<span style="mso-spacerun: yes;"> </span>A modified van starts at $50,000.<span style="mso-spacerun: yes;"> </span>And if you need full-time personal-attendant
care, you'd better have a spare hundred-grand on hand.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">The
extent to which a disabling condition impacts one's life is directly related to
one's financial resources.<span style="mso-spacerun: yes;"> </span>If you do have
sufficient funds to procure the medical attention and assistive technology you
need, your disability can practically be reduced to a mere inconvenience.<span style="mso-spacerun: yes;"> </span>So I'm not really sure the Romneys
experienced disability the way poorer people do.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">In fact,
the most recent census reported that a third of working-age adults with
disabilities are unemployed, far higher than any other minority group, and 27
percent live below the poverty line--double the proportion of adults without
disabilities.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Granted,
neither the Romneys nor the Obamas invented this idea of disability as a kind
of badge of courage.<span style="mso-spacerun: yes;"> </span>It harks back at
least to Franklin Roosevelt.<span style="mso-spacerun: yes;"> </span>Whenever
the polio-surviving president couldn't hide his inability to walk, he cleverly
manipulated his image to turn a presumed liability into an asset.<span style="mso-spacerun: yes;"> </span>His disability became a stand-in for the
Great Depression itself, and his ability to rise above it--albeit on
crutches--a symbol of his mettle and the nation's potential to overcome.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">To this
day, people with disabilities are called "overcomers" a lot.<span style="mso-spacerun: yes;"> </span>I don't know how many times I've been praised
for "overcoming" my disability.<span style="mso-spacerun: yes;">
</span>It's simply not true.<span style="mso-spacerun: yes;"> </span>I haven't
overcome it, Mrs. Obama's father didn't overcome his, and even Mrs.
Romney--whose MS seems to be in remission--hasn't overcome hers either.<span style="mso-spacerun: yes;"> </span>Be inspired if you like, but none of us
deserves credit for beating our conditions.<span style="mso-spacerun: yes;">
</span>We can't.<span style="mso-spacerun: yes;"> </span>Rather, we learn to
live with them.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">If a
candidate truly wants to embrace the disability experience, he or she must
understand that we don't want sympathy or blanket admiration.<span style="mso-spacerun: yes;"> </span>We want respect, opportunities, a place at
the table.<span style="mso-spacerun: yes;"> </span>Not because of paternalism or
pity, but because of an honest, realistic, un-sentimental understanding of what
living with a disability is really like.<span style="mso-spacerun: yes;">
</span>And maybe it's not so different from what life is like for everybody
else.<o:p></o:p></span></span></div>
<span style="font-family: Verdana, sans-serif;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">###</span></span></div>
Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com1tag:blogger.com,1999:blog-8924073396827403351.post-19685950680804585212012-09-11T09:51:00.001-07:002012-09-12T12:52:38.927-07:00A BERKELEY STATE OF MIND<span style="font-size: x-small;"><span style="font-family: Verdana, sans-serif;">By Ben Mattlin<o:p></o:p></span></span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;"> <span style="color: windowtext;">It's widely reported that a certain famous novelist has a new book out that takes place on and around Telegraph Avenue--that multicultural boulevard running through Berkeley and Oakland, California. A worthy landscape, to be sure, but I can't help wondering if his fiction will do justice to that area's seminal role in the disability-rights movement.<o:p></o:p></span></span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">Granted, it may seem a small part of that vibrant cityscape's history.<span style="mso-spacerun: yes;"> </span>Small to you, that is.<span style="mso-spacerun: yes;"> </span>As a lifelong wheelchair-user, I can't help regarding Berkeley and environs as a kind of Holy Land.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Verdana, sans-serif;">I myself didn't understand their importance until researching my own book--a memoir about growing up during the height of disability rights.<span style="mso-spacerun: yes;"> </span>I found myself referencing Berkeley over and over again.<o:p></o:p></span></div><span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Verdana, sans-serif;">In fairness, I haven't been privy to the celebrated author's new novel yet, but I'm reasonably certain there's little or no overlap in our takes on Berkeley.<span style="mso-spacerun: yes;"> </span>Does he mention the Rolling Quads, for instance?<span style="mso-spacerun: yes;"> </span>Doubtful.<span style="mso-spacerun: yes;"> </span>But once you learn of them, how can you forget this Merry Prankster-ish troop of early activists who tooled around the Bay Area protesting access barriers in the late 1960s in revolutionary devices known as motorized wheelchairs?<o:p></o:p></span></div><span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Verdana, sans-serif;">Does he reference the world's first curb ramp for wheelchair-users, cut at the corner of Telegraph Avenue and Bancroft Way?<span style="mso-spacerun: yes;"> </span>Or that it was at the renowned University of California, Berkeley, campus that Ed Roberts, a polio survivor, fought for (and won) the right to attend regular classes in his wheelchair, decades before any disability-rights laws had even been considered?<o:p></o:p></span></div><span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Verdana, sans-serif;">Roberts is now known as the father of the independent-living movement, which went beyond the political idea of equal rights to actually mapping out how people who were so totally dependent on others physically could be empowered to control their own lives.<span style="mso-spacerun: yes;"> </span>His legacy (he died in 1995) is a national network of independent-living centers designed to support people with disabilities in that quest.<o:p></o:p></span></div><o:p><span style="font-family: Verdana, sans-serif;"> </span></o:p><br />
<span style="font-family: Verdana, sans-serif;">No reason the famous novelist should listen to me.<span style="mso-spacerun: yes;"> </span>His story and mine are completely dissimilar, I'm sure.<span style="mso-spacerun: yes;"> </span>And I have no personal stake in Berkeley--I don't live there--other than the debt of gratitude I feel.<span style="mso-spacerun: yes;"> </span>Yet I remember my father's taking me to the original ILC there, in 1979.<span style="mso-spacerun: yes;"> </span>I was on the cusp of starting college on the East Coast, of living on my own (with a paid attendant) for the first time.<span style="mso-spacerun: yes;"> </span>Dad thought the place might inspire us, teach us something.<span style="mso-spacerun: yes;"> </span>What I recall mostly is my adolescent discomfort at all that talk about rights and empowerment--but I loved the gadgets.<span style="mso-spacerun: yes;"> </span>The speakerphones, remote switches for lights, and souped-up, customized wheelchairs that have become emblematic of modern disability life.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Verdana, sans-serif;">I'm confident I'm not the only one who feels this visceral connection.<span style="mso-spacerun: yes;"> </span>Many disabled people's lives have been profoundly affected by Berkeley's revolutionary zeal.<span style="mso-spacerun: yes;"> </span>Leaving this particular material out of any yarn about Berkeley would seem a major disservice.<span style="mso-spacerun: yes;"> </span>Even today, Berkeley is the home of the World Institute on Disability, a leading think tank on nonmedical, non-technological, disability-related issues.<span style="mso-spacerun: yes;"> </span>Policy leaders from around the globe convene on its campus to discuss the very survival of what, in some countries, is the most marginalized population.<o:p></o:p></span></div><o:p><span style="font-family: Verdana, sans-serif;"> </span></o:p><br />
<span style="font-family: Verdana, sans-serif;">Chances are the celebrity novelist already knows some of this, though he might not feel it in his bones the way people like me do.<span style="mso-spacerun: yes;"> </span>You can't spend time in Berkeley and not be aware of its sizable disability presence.<span style="mso-spacerun: yes;"> </span>And in truth, the city itself takes up only a small piece of my book.<span style="mso-spacerun: yes;"> </span>(The word "Berkeley" appears only a dozen times out of some 75,000 words.<span style="mso-spacerun: yes;"> </span>I counted.)<span style="mso-spacerun: yes;"> </span>But I like to think its spirit pervades my true tale of the struggle to achieve a sense of autonomy and pride in a sometimes unaccommodating, even hostile, world.<span style="mso-spacerun: yes;"> </span>Isn't that what Berkeley-ism is all about?<o:p></o:p></span><br />
<o:p><span style="font-family: Verdana, sans-serif;"> </span></o:p><br />
<span style="font-family: Verdana, sans-serif;">Perhaps the eminent novelist and I could tag-team.<span style="mso-spacerun: yes;"> </span>Not that we should literally tour together, but could we defer to each other on specific areas of expertise?<span style="mso-spacerun: yes;"> </span>I'll take the accessibility stuff, and he can have the rest.<span style="mso-spacerun: yes;"> </span>Yes, trying to piggyback my book promotion off of his (and vice versa) may sound crazy.<span style="mso-spacerun: yes;"> </span>But these days, when you're not supposed to judge a book by its cover but are expected to judge it by dubiously-sourced online reviews, who knows?<span style="mso-spacerun: yes;"> </span>Maybe I'm onto something.<span style="mso-spacerun: yes;"> </span>Maybe this'll prove a winner after all.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;">###</span><br />
<span style="font-family: Verdana, sans-serif;"> Quick links: The books mentioned here are –<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><a href="http://www.amazon.com/Telegraph-Avenue-Novel-Michael-Chabon/dp/0061493341/ref=sr_1_1?s=books&ie=UTF8&qid=1347380645&sr=1-1&keywords=telegraph+avenue" target="_blank"><strong><span style="color: #741b47;"><span style="font-family: Verdana, sans-serif;"><em>Telegraph Avenue: A Novel</em>, by Michael Chabon<o:p></o:p></span></span></strong></a></div><span style="color: #741b47; font-family: Verdana, sans-serif;"></span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><a href="http://www.amazon.com/Miracle-Boy-Grows-Disability-Revolution/dp/1616087315/ref=pd_rhf_gw_p_t_1" target="_blank"><strong><span style="color: #741b47;"><span style="font-family: Verdana, sans-serif;"><em>Miracle Boy Grows Up: How The Disability Rights RevolutionSaved My Sanity</em>, by Ben Mattlin</span></span></strong></a></div>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-14297911922172484762012-06-17T12:08:00.002-07:002012-06-17T12:08:48.739-07:00ON FATHER'S DAY, BREEDING MUTUAL RESPECT<span style="color: windowtext; font-family: "Times New Roman","serif";">By Ben Mattlin<o:p></o:p></span>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: windowtext; font-family: "Times New Roman","serif";"><span style="font-size: large;">Now that my father is nearly 85 years old, we seem to have a
lot more in common than we ever did before.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: windowtext; font-family: "Times New Roman","serif";"><span style="font-size: large;">That's not just because I'm now a father myself.<span style="mso-spacerun: yes;"> </span>It's because Dad, who's still in remarkably
good health, has had to slow down, which has caused him to understand at last
what my life is like as a physically disabled person.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: windowtext; font-family: "Times New Roman","serif";"><span style="font-size: large;">I am a lifelong wheelchair user, thanks to a genetic
neurological muscle weakness.<span style="mso-spacerun: yes;"> </span>It hasn't
stopped me--I'm also a Harvard graduate, husband, father, and moderately busy
financial journalist.<span style="mso-spacerun: yes;"> </span>But having a
disability can at times force me to go slow.<span style="mso-spacerun: yes;">
</span>It often makes me plan logistics ahead of time, quashing any impulse
toward spontaneity.<span style="mso-spacerun: yes;"> </span>And it's given me a
particular perspective on life's multifaceted values.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="color: windowtext; font-family: "Times New Roman","serif";"><span style="font-size: large;">The overlap in my worldview and my Dad's became clear in a
recent conversation.<span style="mso-spacerun: yes;"> </span>He was grumbling that
he shouldn't have to "think young" or pretend to have more energy
than he does--that he's entitled to move slowly, spend long afternoons in a
rocking chair, need a seat on a crowded bus or even doze off in the
theater.<span style="mso-spacerun: yes;"> </span>"Sloth," he joked,
"is no longer a sin at my age.<span style="mso-spacerun: yes;"> </span>It
is a well-earned privilege."<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">My
father has a keen wit, to be sure, but for me these sentiments have important
repercussions.<span style="mso-spacerun: yes;"> </span>I've often pushed myself
too hard, felt afraid to use my disability as an excuse--in short, I've acted
like what disability activists call a "super crip," trying to be
better than average just to prove I shouldn't be counted out.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Many
other minority groups and women have said they have to work twice as hard to be
treated as equals.<span style="mso-spacerun: yes;"> </span>It's basically the
same thing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Remember
when George Bush Senior went skydiving in his 70s to prove his virility?<span style="mso-spacerun: yes;"> </span>How often do we hear about an awe-inspiring
quadriplegic or amputee who climbed a mountain or went hang-gliding, or
performed some such Herculean stunt?<span style="mso-spacerun: yes;">
</span>Maybe they're just naturally outdoorsy, but surely they also want to
demonstrate that they've still got it, are still in the game--that there's no
difference between them and everybody else.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: left;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Is it
really necessary to put these extra physical challenges up against the
so-called physically challenged?<span style="mso-spacerun: yes;">
</span>Frankly, I think I'm as good or bad as anyone else just as I am, without
having to prove it.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I
concede that these brave acts do inspire--but some of us are too busy just
doing the heroic business of surviving.<span style="mso-spacerun: yes;">
</span>Do we really need to do something superhuman to feel good about
ourselves and gain the admiration of others?<span style="mso-spacerun: yes;">
</span>Don't we deserve the same degree of respect as anyone else?<span style="mso-spacerun: yes;"> </span>Frankly, I often feel that the everyday
survivors are the true inspirations anyway.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Later,
in another conversation, Dad said, "I hate it when people tell me, 'Oh,
you're not old!'"<span style="mso-spacerun: yes;"> </span>He laughed at the
patent absurdity of it.<span style="mso-spacerun: yes;"> </span>"I'm almost
85!"<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">This funny
comment struck a chord with me, too.<span style="mso-spacerun: yes;"> </span>It called
to mind the many times I've heard things like, "We're all disabled in some
way."<span style="mso-spacerun: yes;"> </span>Comments that are meant to be
kind and accepting, I suppose.<span style="mso-spacerun: yes;"> </span>So how
come all I want to say back is, "Oh, come on!"?<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">It's as
if the words "old" and "disabled" were unspeakably dirty
concepts.<span style="mso-spacerun: yes;"> </span>There should be nothing
shameful about aging or about having a disability.<span style="mso-spacerun: yes;"> </span>We shouldn't have to minimize or sugarcoat
them.<span style="mso-spacerun: yes;"> </span>In fact, I think we should be
proud of them.<o:p></o:p></span></span></div>
<span style="font-size: large;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I asked
my father about this.<span style="mso-spacerun: yes;"> </span>He denied meaning
anything so profound, but I don't think I'm projecting to say he feels a tad
insulted, or at least patronized, by such remarks.<span style="mso-spacerun: yes;"> </span>And I wonder if he hasn't actually taught me
a great deal over the years about accepting differences after all, even if
those differences are simply a matter of age.</span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Times New Roman","serif";">###</span></div>
<div align="left" class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;">
<span style="font-family: "Times New Roman","serif";">
</span></div>
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<span style="font-family: "Verdana","sans-serif";">MIRACLE
BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity<i style="mso-bidi-font-style: normal;"> is available now for pre-order from </i></span><a href="http://www.amazon.com/"><span style="font-family: "Verdana","sans-serif";"><span style="color: blue;">Amazon.com</span></span></a><i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana","sans-serif";">
and </span></i><a href="http://www.bn.com/"><span style="font-family: "Verdana","sans-serif";"><span style="color: blue;">BN.com</span></span></a><i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana","sans-serif";">--for
more info, go to </span></i><a href="file:///C:/Users/Dad/Documents/Disability%20Online/www.MiracleBoyGrowsUp.com"><span style="color: blue; font-family: Arial;">www.MiracleBoyGrowsUp.com</span></a></div>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-39589592009757894352012-06-10T14:31:00.004-07:002012-06-10T14:31:37.959-07:00More on PUSH GIRLS<span style="font-family: Arial;">First of all, I've been guest blogging.<span style="mso-spacerun: yes;"> </span>It's supposed to be a good way to promote my
upcoming book.</span><br />
<br />
(<span style="font-family: Arial;">Most of my guest blogs have appeared on <b style="mso-bidi-font-weight: normal;"><a href="http://www.disabledonlinelosangeles.com/"><span style="color: blue;">DisabledOnlineLosAngeles</span></a></b>.<span style="mso-spacerun: yes;"> </span>Check 'em out.)<o:p></o:p></span><br />
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<span style="font-family: Arial;">The most recent one, I talked about the new Sundance Channel
reality TV series, <strong>"</strong><a href="http://www.sundancechannel.com/push-girls/" target="_blank"><strong>Push Girls."</strong></a><span style="mso-spacerun: yes;"><strong>
</strong></span>So far, I guess you could say I have a love-hate relationship with the
show.<o:p></o:p></span></div>
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<span style="font-family: Arial;">I love that it exists.<span style="mso-spacerun: yes;">
</span>I love that it shows hot, empowered women on wheels.<span style="mso-spacerun: yes;"> </span>I love that it uses real para- and
quadriplegics, telling their own real-life stories.<o:p></o:p></span></div>
<br />
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<span style="font-family: Arial;">But…<o:p></o:p></span></div>
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<span style="font-family: Arial;">Well, in fairness, when it comes to disability issues I'm a
bit of a radical.<span style="mso-spacerun: yes;"> </span>I think the most
disabled among us should be welcomed as equals.<span style="mso-spacerun: yes;">
</span>I want to hammer those who construct or sanction obstacles to
acceptance, integration and access--those who accept or perpetuate
stereotypes.<span style="mso-spacerun: yes;"> </span>I want to salute all those
who've come before and laid the groundwork for everything from curb ramps to
civil-rights legislation.<span style="mso-spacerun: yes;"> </span>The things we
practically take for granted now.<span style="mso-spacerun: yes;"> </span>I want
to remember, appreciate, and remain vigilant.<o:p></o:p></span></div>
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<span style="font-family: Arial;">This show does none of that.<o:p></o:p></span></div>
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<span style="font-family: Arial;">I understand they are supposed to be loud and brash and
flashy.<span style="mso-spacerun: yes;"> </span>That's the nature of TV,
especially Reality TV.<span style="mso-spacerun: yes;"> </span>But when one of
them says something like, "If you can't stand up, you've gotta
standout!",<span style="mso-spacerun: yes;"> </span>I want to answer back,
Why?<span style="mso-spacerun: yes;"> </span>Isn't it okay just to be who you
are, disabled and all?<o:p></o:p></span></div>
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<span style="font-family: Arial;">Granted, I love the scene where the one goes to be
photographed in an attempt to restart her modeling career--and ends up having a
muscle spasm.<span style="mso-spacerun: yes;"> </span>The photographer sort of
freaks out, but the woman herself remains calm and in control as she explains
what she needs, why this happens to her, and what to do about it.<span style="mso-spacerun: yes;"> </span>This is the reality of her disability, and
she is completely competent in controlling her own care, making sure her needs
are met.<span style="mso-spacerun: yes;"> </span>A powerful scene that's
especially significant if you know the history of disability portrayals.<o:p></o:p></span></div>
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<span style="font-family: Arial;">I hope to see more like this.<o:p></o:p></span></div>
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<span style="font-family: Arial;">Unfortunately, the first episode was a tad overmuch for me. <span style="mso-spacerun: yes;"> </span>Now, I'm not exactly a Reality TV fan.<span style="mso-spacerun: yes;"> </span>I'm not into the voyeuristic aspects.<span style="mso-spacerun: yes;"> </span>But to me, too often these women seem to
protest too much (to borrow from Shakespeare).<span style="mso-spacerun: yes;">
</span>It's sad.<o:p></o:p></span></div>
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<span style="font-family: Arial;">For instance, when one of them says that people wonder if
she can still have sex, she doesn't just say yes, I can and do.<span style="mso-spacerun: yes;"> </span>She actually ladles it on with "oh yes--lots
and LOTS of sex!"<o:p></o:p></span></div>
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<span style="font-family: Arial;">Puh-lease!<o:p></o:p></span></div>
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<span style="font-family: Arial;">In future episodes, I'm looking for more about obstacles and
barriers and advocacy.<span style="mso-spacerun: yes;"> </span>It's a dangerous
thing when the burden of integration is put on the oppressed minority--in other
words, to say these chicks will fit in just fine if they're plucky, sassy , and brash
enough to make it.<span style="mso-spacerun: yes;"> </span>I'm delighted they're
independent-minded and hate to be helped, as they keep reminding us.<span style="mso-spacerun: yes;"> </span>But sometimes we need to ask for help, and
the sooner we face that the better.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Arial;"><span style="mso-spacerun: yes;"></span>And
sometimes--maybe all the time--we need to remind the nondisabled world that it
ought to meet us halfway, at the very least.<span style="mso-spacerun: yes;">
</span>We might not want favors or special treatment, but we shouldn't have to
do all the work of inclusion ourselves.<span style="mso-spacerun: yes;"> </span>Because
all the guts and bravura (or hairspray, makeup, bangles, etc.) in the world
won't get your wheelchair up a flight of steps or even get you that job or that
relationship.<span style="mso-spacerun: yes;"> </span>The other side has to be
open and affirming of us, disabilities and all.<o:p></o:p></span></div>
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<span style="font-family: Arial;">Disagree?<span style="mso-spacerun: yes;"> </span>Please let
me know.<o:p></o:p></span></div>
<span style="font-family: "Verdana","sans-serif";">***<o:p></o:p></span><br />
<i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana","sans-serif";">LA-based journalist Ben Mattlin, who
was born with SMA, is the author of </span></i><span style="font-family: "Verdana","sans-serif";">MIRACLE
BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity<i style="mso-bidi-font-style: normal;">, available now for pre-order from </i></span><a href="http://www.amazon.com/"><span style="font-family: "Verdana","sans-serif";"><span style="color: blue;">Amazon.com</span></span></a><i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana","sans-serif";">
and </span></i><a href="http://www.bn.com/"><span style="font-family: "Verdana","sans-serif";"><span style="color: blue;">BN.com</span></span></a><i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana","sans-serif";">--for
more info, go to </span></i><a href="file:///C:/Users/Dad/Documents/Disability%20Online/www.MiracleBoyGrowsUp.com"><span style="color: blue; font-family: Arial;">www.MiracleBoyGrowsUp.com</span></a>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com2tag:blogger.com,1999:blog-8924073396827403351.post-7697317499393102762012-04-01T14:03:00.000-07:002012-04-01T14:03:32.812-07:00NO APRIL FOOL<span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="color: blue; font-size: x-large;"><strong>F</strong></span>or me, April has a special significance I never fully realized until recently.<o:p></o:p></span></span><br />
<span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>In April 1977, when I was 14, I was in a hospital bed in New York, preparing for surgery to correct my severely curved spine.<span style="mso-spacerun: yes;"> </span>The scoliosis came from a neuromuscular condition I was born with, a form of spinal muscular atrophy, which made me unable to walk or sit straight.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>Without adequate muscles, my backbone was collapsing upon itself.<span style="mso-spacerun: yes;"> </span>I looked more like a curly headed beach ball than an adolescent boy.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>I didn't know it then, but at the same time as I was lying helplessly in the hospital, disability-rights activists across the country were agitating to rescue me in other ways that would become apparent only years later.<span style="mso-spacerun: yes;"> </span>Four years before, the federal government had passed the world's first disability-rights legislation--the Rehabilitation Act of 1973—but it wasn't being enforced.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>When I met some of the survivors of those protests, in researching my book about the movement, I learned that the biggest demonstration occurred in San Francisco (not surprisingly).<span style="mso-spacerun: yes;"> </span>Those patriots actually camped out for 25 straight days and nights at the Health, Education and Welfare Department's local headquarters--sleeping in their wheelchairs or on the floor, sharing urinals, catheters, and personal-care attendants, bathing in front of one another with little shame.<span style="mso-spacerun: yes;"> </span>Many had come from institutions where they were used to having no privacy anyway.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>I recall feeling a little like that myself, that I had no privacy, spreadeagled in the pediatric orthopedic ward.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>Anyway, these protesters had nothing much to lose and, frankly, nothing else to do.<span style="mso-spacerun: yes;"> </span>Most were unemployed or had been banned from mainstream schools.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>I went to a regular school.<span style="mso-spacerun: yes;"> </span>My parents had insisted on it, fought for it, in those bad old days before kids with disabilities were fully integrated.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>Yet I had a lot in common with those protesters.<span style="mso-spacerun: yes;"> </span>Like them, I was benefiting from the latest medical treatments, such as my scoliosis surgery, and technological advances like motorized wheelchairs.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>In the end, I came out straighter and taller than ever.<span style="mso-spacerun: yes;"> </span>My breathing improved and the strain on my heart eased measurably.<span style="mso-spacerun: yes;"> </span>And the activists proved victorious, too! <span style="mso-spacerun: yes;"> </span>They got President Carter to sign new regs to enforce equal access.<span style="mso-spacerun: yes;"> </span>The deadline was 1980, the very year I started college.<span style="mso-spacerun: yes;"> </span>I became a sort of pioneer, a test case, at Harvard University.<span style="mso-spacerun: yes;"> </span>So I was a direct and almost immediate beneficiary of the April protests.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>I never knew about these foot soldiers--or should I say wheel, crutch and guide-dog soldiers?--of disability rights until after I'd graduated and begun to ponder my role in society, my roots, as it were.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>What I take away from this saga of unsung heroes is a combination of gratitude and inspiration.<span style="mso-spacerun: yes;"> </span>Even the smallest, most overlooked acts of righteous bravery can have profound repercussions.<span style="mso-spacerun: yes;"> </span>After all, the regulations they spearheaded became the model for subsequent, more sweeping civil rights for disabled people.<span style="mso-spacerun: yes;"> </span>And where would I be today without that?<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="line-height: 200%; margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;"><span style="mso-tab-count: 1;"> </span>So for me April is a time for thanks and remembrance.<span style="mso-spacerun: yes;"> </span>For a certain humility mixed with the hope of ever-possible rebirth.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">###</span></span></div>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-22307714097814008652012-02-28T11:12:00.000-08:002012-02-28T11:12:20.186-08:00GOODBYE FEBRUARY<span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">For me, a White guy with a severe and highly visible physical disability, the history of African-Americans, which we celebrate in February, has a special resonance.</span></span><br />
<br />
<span style="font-family: "Times New Roman","serif";"></span><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">It may sound presumptuous, but I believe our minority experiences overlap in certain profound ways.<o:p></o:p></span></span><br />
<span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I was born with spinal muscular atrophy, a genetic degenerative neuromuscular weakness. <span style="mso-spacerun: yes;"> </span>My spine is curved, my limbs are reed thin, I have the basic musculature of a ragdoll, and I can only control my motorized wheelchair with my lips.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">When people see me tooling down the street or meet me for the first time, they often have an unnatural reaction.<span style="mso-spacerun: yes;"> </span>Sometimes they even cut me a wide berth as if to avoid close contact—something I know many African-Americans have experienced.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">I thought about this when I heard a quote by Thurgood Marshall.<span style="mso-spacerun: yes;"> </span>He once said that no matter where he went, whatever city he stopped in, he never had to look at his hand to remember he was Black.<span style="mso-spacerun: yes;"> </span>He could tell by the way White people reacted to him.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">My affinity for African-Americans was developed early on.<span style="mso-spacerun: yes;"> </span>As a high school kid in the 1970s, I recall trying to catch a cab in New York with Kenny, my attendant and best friend, a young man from Trinidad.<span style="mso-spacerun: yes;"> </span>Taxi after taxi would slow down and then speed away once the driver got a look at us.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">In the years since, I've noticed things like if I'm out with a White person, White store clerks and waiters and such often ask him or her what I want.<span style="mso-spacerun: yes;"> </span>Yet if my companion is Black, it's the other way around.<span style="mso-spacerun: yes;"> </span>They turn to me for input, ignoring my friend as if he or she is an underling.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Perhaps more importantly, I know what it is to feel separate, even excluded.<span style="mso-spacerun: yes;"> </span>Many aspects of our society are closed to me as surely as they were to African-Americans during segregation.<span style="mso-spacerun: yes;"> </span>They may not be closed due to malice.<span style="mso-spacerun: yes;"> </span>But if, for example, a school PTA function is held at someone's walk-up apartment or McMansion with steps out front, I can't attend.<span style="mso-spacerun: yes;"> </span>And needless to say, discussing business over a round of golf or handball is out of the question, too, even if the country club or gym isn't technically restricted.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Not that I'm feeling sorry for myself.<span style="mso-spacerun: yes;"> </span>But I do think I understand what many African-Americans have gone through in a way that other Whites may not.<span style="mso-spacerun: yes;"> </span>And I believe this sense of solidarity is mutual.<span style="mso-spacerun: yes;"> </span>African-Americans frequently nod at me or exchange a kind word when we pass on the street or in office corridors in a way that, I'm told, doesn't happen with other Whites.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">Maybe this connection stems from my having spent so much time among Black people.<span style="mso-spacerun: yes;"> </span>I've always needed help doing basic tasks—from getting washed and dressed to running errands and doing household or office chores.<span style="mso-spacerun: yes;"> </span>Over the years, many of my assistants have been Black.<span style="mso-spacerun: yes;"> </span>Lest I sound like Katheryn Stockett, author of "The Help," I believe the experience of needing a hand is also in keeping with the African-American experience.<span style="mso-spacerun: yes;"> </span>Another Thurgood Marshall quotation: "<span style="color: black;">None of us got where we are solely by pulling ourselves up by our bootstraps. We got here because somebody … bent down and helped us pick up our boots."</span><o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="color: black; font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">We all can benefit from recognizing past struggles and saluting the heroes.<span style="mso-spacerun: yes;"> </span>But there's often a universality to each group's experiences.<span style="mso-spacerun: yes;"> </span>Perhaps reflecting on commonalities as much as differences will help us rededicate ourselves to building bridges AND<span style="mso-spacerun: yes;"> </span>ramps.<o:p></o:p></span></span></div><span style="font-family: Verdana, sans-serif;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-family: Verdana, sans-serif;">###</span></span></div>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com4tag:blogger.com,1999:blog-8924073396827403351.post-23005265014062611062012-02-03T11:45:00.000-08:002012-02-03T11:45:22.364-08:00Super Bowl Sunday & My (sort of) PTSD<span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">ROOTING FOR THE SUPER BOWL, <br />
NO MATTER WHO WINS<o:p></o:p></span></span><br />
<span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">By Ben Mattlin<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">With the New York Giants and New England Patriots once again facing off in the Super Bowl—as they did four years ago—why do I find myself shuddering in posttraumatic stress?<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I'm not exactly what you'd call a football fan.<span style="mso-spacerun: yes;"> </span>What's causing me to experience horrific flashbacks has nothing to do with the game itself.<span style="mso-spacerun: yes;"> </span>It has everything to do with where I was four years ago.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Four years ago I nearly died.<span style="mso-spacerun: yes;"> </span>Four years ago I was lying in the ICU at UCLA only semi-conscious after a botched colon surgery had left me with blood poisoning and sundry other dangerous complications including repeated pneumonias and multiple blood clots.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I remember trying to watch the Big Game from my hospital bed.<span style="mso-spacerun: yes;"> </span>The TV was at a weird angle, or my bed was, and it was difficult to hear over all the beeping machines. <span style="mso-spacerun: yes;"> </span>In the hospital the TV is always on, it seems, but I couldn't follow what was going on.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I hadn't thought about any of this—at least not so vividly—until the Republican primaries started up.<span style="mso-spacerun: yes;"> </span>That sparked the memory cylinders' chugging.<span style="mso-spacerun: yes;"> </span>I missed most of that horse race four years ago, too.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I'm no stranger to medical complications.<span style="mso-spacerun: yes;"> </span>I was born with spinal muscular atrophy, a genetic neurological delight that relentlessly weakens muscles.<span style="mso-spacerun: yes;"> </span>I've never stood or walked, always used a wheelchair and been susceptible to colds, especially respiratory infections.<span style="mso-spacerun: yes;"> </span>So for me, having a fairly standard surgery go wrong and completely upend my life and my family's life for the better part of a year seemed pretty much par for the course.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">And yet it was anything but.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I'm all better now—from the hospitalization, that is, not the spinal muscular atrophy.<span style="mso-spacerun: yes;"> </span>Though I still bear the physical scars of that ordeal in the ICU, my life is back to normal.<span style="mso-spacerun: yes;"> </span>But then the Giants and Patriots started winning playoff games, looking like Super Bowl contenders, and I began to re-glimpse those bleary days.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Last Sunday, when the mud at Candlestick Park settled and the Super Bowl rematch was official, it all came flooding back in dizzyingly sharp focus.<span style="mso-spacerun: yes;"> </span>The way my coma fog had initially lifted to reveal my family gathered around—even my then-80-year-old father, whom my wife had called back from a vacation in Mexico … my struggle to communicate when intubation muted me ... the x-ray tech who awakened me each morning with a jolt, followed by a kind nurse who kept asking, "Mr. Mattlin, do you know what day it is?<span style="mso-spacerun: yes;"> </span>Do you know where you are right now?"<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">And, of course, the impatience to return home, a wish that wouldn't be granted for nearly three months.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Ever since my hospitalization, I've taken special delight in <i style="mso-bidi-font-style: normal;">not </i>missing the Super Bowl, the Oscars, and other markers of the post-holidays season.<span style="mso-spacerun: yes;"> </span>I'd always enjoyed them before, but they'd never felt so significant as they have the past three years—celebrating them as reminders of being well, of no longer being incarcerated among a webwork of life-sustaining tubes, of survival itself.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">With each passing year the flashbacks have been fading.<span style="mso-spacerun: yes;"> </span>Which is why this year's HD-like clarity is so shocking.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Of course, I missed other events, too, when I was too busy fighting for my life and stoned on medication.<span style="mso-spacerun: yes;"> </span>The birthdays of my school-age daughters and my wife being chief among them. <o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">I suppose this is how returning servicemen and women must feel.<span style="mso-spacerun: yes;"> </span>Perhaps Congresswoman Gabrielle Giffords, too.<span style="mso-spacerun: yes;"> </span>For anybody whose life has been interrupted by forces beyond their control, just to get back to the normal things—to experience ordinary, predictable occurrences—feels profound and wondrous.<span style="mso-spacerun: yes;"> </span>The fact that this time nothing has gone wrong, no major disaster has interfered with the continuum we tend to think of as our due, becomes nothing short of miraculous.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">That's not necessarily a bad revelation.<span style="mso-spacerun: yes;"> </span>What <i style="mso-bidi-font-style: normal;">is</i> bad—the stress, the trauma, the physical and emotional pain—will all heal in time.<span style="mso-spacerun: yes;"> </span>But the recognition of making it through, of remembering to take joy in the simple things, perhaps should never be completely swept aside.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">Is this the silver lining—learning to appreciate what you almost lost?<span style="mso-spacerun: yes;"> </span>I'm far too cynical to accept such a notion.<span style="mso-spacerun: yes;"> </span>But since bad things do inevitably happen to all of us, why not take away from them something of lasting value?<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">So this year I hope to watch the Super Bowl as never before.<span style="mso-spacerun: yes;"> </span>That is, if I can stand it.<span style="mso-spacerun: yes;"> </span>If it doesn't bring back too many ghastly half-memories.<span style="mso-spacerun: yes;"> </span>Even if that happens, it's simply the fact that I <i style="mso-bidi-font-style: normal;">can</i> watch the game—<i style="mso-bidi-font-style: normal;">any</i> game—that counts for me.<o:p></o:p></span></span></div><span style="font-size: large;"> </span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="font-size: large;">###</span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><span style="color: red; font-size: large;"><strong><a href="http://www.amazon.com/Miracle-Boy-Grows-Disability-Revolution/dp/1616087315/ref=sr_1_2?ie=UTF8&qid=1325117632&sr=8-2" target="_blank">MIRACLE BOY GROWS UP available here!</a></strong></span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Times New Roman","serif";"><o:p></o:p></span><span style="font-size: large;"> For more info about the book:</span> <a href="http://www.miracleboygrowsup.com/" target="_blank"><strong>http://www.miracleboygrowsup.com/</strong></a></div>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-33227921089804805712011-12-12T12:31:00.001-08:002012-09-12T12:56:42.026-07:00Post-Manuscript Journal, Part 3<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;">About two weeks ago I learned my book is already available for pre-order on Amazon.<span style="mso-spacerun: yes;"> </span>Woo-hoo!</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;">I asked all my friends and relatives to order.<span style="mso-spacerun: yes;"> </span>The idea, at this point, is to keep the numbers up.<span style="mso-spacerun: yes;"> </span>Don't know how exactly Amazon calculates that stuff, but it's supposed to be important.<o:p></o:p></span></div><br />
<span style="font-family: Arial;">I've checked back on Amazon occasionally.<span style="mso-spacerun: yes;"> </span>Last week I noticed my bio had been added.<span style="mso-spacerun: yes;"> </span>Not the version I wrote exactly, either.<span style="mso-spacerun: yes;"> </span>But not bad.</span><br />
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</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;">Today I notice the publisher has actually posted a description of the book.<span style="mso-spacerun: yes;"> </span>Wasn't there before.<span style="mso-spacerun: yes;"> </span>Surprising to me, since Skyhorse has only seen the opening chunk (same as anybody else who's followed this blog).</span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><br />
</div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;">The book description is a tad cheesy, but I like it.<span style="mso-spacerun: yes;"> </span>Hope my book lives up to it!<o:p></o:p></span></div><br />
<span style="font-family: Arial;">I haven't yet consulted with Skyhorse's publicist at all.<span style="mso-spacerun: yes;"> </span>But it's heartwarming to know that somebody's been secretly working behind the scenes on my behalf!</span><br />
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<span style="font-family: "Arial","sans-serif"; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">More news as it develops…</span></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"></span><br />
<span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><div style="text-align: center;"><span style="font-family: "Arial","sans-serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><a href="http://amzn.to/th0krx" target="_blank">http://amzn.to/th0krx</a></span></div></span><br />
<div align="center" class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2rzBJop3DEedbIKP92UAzUM2Sa_epQynfjN0EU53CRkuHakCFAOG6VPgjW1LC2PH9spbQAjBm8qdbGQZq19IdSHNlQ7QtCFml6IPwlm8R9pMvBsSOtiZZzUAdpPGgytZslsR5MDTxOMI/s1600/cover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2rzBJop3DEedbIKP92UAzUM2Sa_epQynfjN0EU53CRkuHakCFAOG6VPgjW1LC2PH9spbQAjBm8qdbGQZq19IdSHNlQ7QtCFml6IPwlm8R9pMvBsSOtiZZzUAdpPGgytZslsR5MDTxOMI/s320/cover.jpg" width="222" /></a></div>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0tag:blogger.com,1999:blog-8924073396827403351.post-72428453726415409212011-11-29T15:44:00.000-08:002011-12-12T12:34:18.435-08:00Post-Manuscript Journal Part 2<span style="font-family: Arial;"><strong>T</strong>oday I got my first unsolicited pitch from a book publicist.<o:p></o:p></span> <br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;"><span style="mso-tab-count: 1;"> </span>Didn't know publicists did that sort of thing, but I confess to being flattered and impressed.<span style="mso-spacerun: yes;"> </span>The outfit--Newman Communications, in Boston--knew the name of my book, knew the approximate publication schedule, and actually went to the trouble (well, Google) of finding my Web site in order to find <em><strong>me</strong></em>.<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;"><span style="mso-tab-count: 1;"> </span>Presumably, this means the publisher has been leaking announcements through the grapevine.<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;"><span style="mso-tab-count: 1;"> </span>It so happens I <em><strong>have</strong></em> been interviewing publicists, and while I would never call upon someone who accosted me--say, a telemarketer--this one I am tempted to consider.<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;"><span style="font-family: Arial;"><span style="mso-tab-count: 1;"><strong>*</strong></span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;"><strong>T</strong>he occurrence is just the latest surprise I've experienced since completing my manuscript.<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;"><span style="mso-tab-count: 1;"> </span>Over Thanksgiving, I saw my family for the first time since it's been done and since they've had a chance to read it.<span style="mso-spacerun: yes;"> </span>Everybody likes it, and is supportive, but I find that afterward I'm feeling a bit shaken.<span style="mso-spacerun: yes;"> </span>As if I stood in front of the class with my zipper open!<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial;"><span style="mso-tab-count: 1;"> </span>Is this what's in store for me, as others read my innermost secrets, thoughts, fears and dreams?<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="mso-tab-count: 1;"> </span>Well, if I didn't want people to know my perspective on life, I shouldn't have written about it for publication.<span style="mso-spacerun: yes;"> </span>Right?<span style="mso-spacerun: yes;"> </span>What did I expect?<o:p></o:p></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="mso-tab-count: 1;"> </span>Yet I think because it was family the reaction was particularly charged.<span style="mso-spacerun: yes;"> </span>I myself was nervous in a way I haven't been in decades (<i style="mso-bidi-font-style: normal;">am I regressing?</i> I pondered), and their comments-- "curious you left out such-and-such event," "I've been avoiding bringing this up, but since you mention it in your book, well, I've always wanted to say…"--felt unusually bare and frank and bold. <span style="mso-spacerun: yes;"> </span>Or maybe I was just reading extra dollops of Significance in them.<o:p></o:p></span></div><span style="font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="mso-tab-count: 1;"> <span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></span></span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Not to worry.<span style="mso-spacerun: yes;"> </span>Soon the thing will be sent off to the publisher, and then I'll begin the publicity push in earnest.<span style="mso-spacerun: yes;"> Onward and upward! </span></span></span><br />
<span style="font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="mso-spacerun: yes;"></span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="mso-tab-count: 1;"> </span></span>But first, maybe I ought to call back this Newman fella…</span></span>Ben Mattlinhttp://www.blogger.com/profile/03216939366830065725noreply@blogger.com0