Tuesday, February 28, 2012


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.

It may sound presumptuous, but I believe our minority experiences overlap in certain profound ways.

I was born with spinal muscular atrophy, a genetic degenerative neuromuscular weakness.  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.

When people see me tooling down the street or meet me for the first time, they often have an unnatural reaction.  Sometimes they even cut me a wide berth as if to avoid close contact—something I know many African-Americans have experienced. 

I thought about this when I heard a quote by Thurgood Marshall.  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.  He could tell by the way White people reacted to him.

My affinity for African-Americans was developed early on.  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.  Taxi after taxi would slow down and then speed away once the driver got a look at us.

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.  Yet if my companion is Black, it's the other way around.  They turn to me for input, ignoring my friend as if he or she is an underling.

Perhaps more importantly, I know what it is to feel separate, even excluded.  Many aspects of our society are closed to me as surely as they were to African-Americans during segregation.  They may not be closed due to malice.  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.  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.

Not that I'm feeling sorry for myself.  But I do think I understand what many African-Americans have gone through in a way that other Whites may not.  And I believe this sense of solidarity is mutual.  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.

Maybe this connection stems from my having spent so much time among Black people.  I've always needed help doing basic tasks—from getting washed and dressed to running errands and doing household or office chores.  Over the years, many of my assistants have been Black.  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.  Another Thurgood Marshall quotation: "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."

We all can benefit from recognizing past struggles and saluting the heroes.  But there's often a universality to each group's experiences.  Perhaps reflecting on commonalities as much as differences will help us rededicate ourselves to building bridges AND  ramps.



  1. Hi! I just wanted to tell you that I read this and I liked it. Made me pause and think for a bit at... 4 am. Not an easy thing to accomplish. I was simply googling to see if I could find information on adventures and this popped up. Worth reading.

  2. I stumbled upon to your blog through NY time's article I found yesterday. My son has a genetic disorder, although physically he can attend to regular activities (with some limitation), he has many challenges in his life. I've learned so much from raising my son, but he can't articulate his experience and thoughts as well as you could (well... come to think of it, neither I can). I feel reading your blog gives me a little peak into his life as a person with disability. I want to contribute to the society, and want to become some one who bend down and help others like us. Thank you for sharing your thoughts and stories.

  3. Would love to talk with you about Visitability and Concrete Change. Are you familiar with the organization and movement? I know there is hope when I hear that some places have enacted legislation to see that all homes meet three basic needs to welcome all people, those living there and those visiting, young people with strollers, executives with rolling suitcases and the elderly or disabled who need mobility devices. I remember my cousin, who had polio as a child and utilized a wheelchair throughout her adult life, working, being a wife and mother of two. Suzanne said she could have friends in her house but couldn't sit at a friend's kitchen table, to talk or share a cup of coffee. Concrete Change is working to see that visitability becomes the norm. Please wish me luck as I attend a training session to become a better advocate. My husband had a devastating stroke in December 2011 and has been through some of the experiences you write about. How I wish, like my cousin Suzanne, that he could visit friends and family without concern for the logistics of it all.

    Just wanted to say I was delighted to find your articles and blog, after reading the NYTimes article about your experience at Harvard. Keep up writing about your experiences. I am sure your words will touch others and give much needed perspective and understanding to those who live with or without a disability. My best to you and your family! donna.ford@gmail.com

  4. Thank you all for your comments – most of which I only just saw now. Wish I could reply to each of you individually…just to say thank you in a more personal way.