Thursday, March 13, 2008

Governing with an Invisible Disability

I almost never comment on national politics in this blog, but the situation in New York has put one man with a disability front and center to me.  Governor Elliot Spitzer has resigned, due to his alleged sexual misadventures, and his lieutenant governor, David Paterson, will assume the governor's post.

Paterson has been legally blind since infancy.

In an interview with the New York times, Paterson says:

But I play basketball, and I’ve done things that people with my vision aren’t supposed to do. I’m in this interesting sort of zone between the sighted and the unsighted, and have never really met anyone who I visually relate to, I’ve never met anyone who is kind of like me. ...

My truest disability has been my ability to overcome my physical disability. So in other words, as soon as people see that I can be independent, then they hold me to the standard that everyone else is. So I remember once I told the airlines that I had a sight problem, and they put me on this bus to go to a hotel because there were no other flights out of the airport that night, and I gave up my seat to everyone got on and they passed me, and then like this 90-year-old woman, who was trying to get up the steps, and I couldn’t take it anymore so I helped her up the steps, gave her my seat and took another seat. First stop, the bus driver tells me to get off. And I know that he’s doing this now because he thinks I have no problem. He goes, “Go that way.” And I almost fell in the wishing well in front of this hotel. That’s because he saw me able to fend for myself.

I'd like to meet Mr. Paterson, because I feel the same.  I too am in a twilight area between the able bodied and the disabled.

I have a hearing loss, and ADHD, and I have been fighting the ups and downs of low vision all my life.  I have had people tell me I'm not really disabled, and people who've patronized me because I "looked like a special-needs case."

This made me so bitter for a time that I wrote a webpage about this in the early days of the Net, the Invisible Disability Page.   The essay is perhaps more angry than it should be 10 years afterwards, but I heard from a lot of readers who immediately identified with me.

The experiences I wrote about, and the experiences of Mr. Paterson, are very familiar to those with disabilities, especially hidden disabilities like hearing loss or fibromyalgia or any of the mental disorders.

People without disabilities have a fixed conception of people with disabilities.  They are either heroes, as I've wrote before, or they are pitiable.  If a person with disabilities does a thing that they aren't "supposed" to do—they are not "disabled".  Paterson wasn't "supposed" to be able to see that old woman trying to get on the bus.  He wasn't "supposed" to be able to play basketball.

When I was a young preemie baby with multiple health problems, I wasn't supposed to be able to live outside an institution.  Wasn't supposed to be able to walk or talk or read.  Yet I learned to read at a very young age and I learned to take apart things (not with my mother's knowledge!) at age 3 and that is why I have the coping skills to use a computer and become an IT professional.

But we pity people who don't "overcome their disability".  People used to, and sometimes still do, compare me with other disabled people.  "Don't complain because that other guy is in a wheelchair and is worse off than you!"  I'm a proud man not much for pity, but really?  That's a race to the bottom I don't want to win. 

I have close friendships with people who are sightless, those with muscular dystrophy, stroke victims and brain injuries.  I don't consider myself "better off" or "worse off" than they are.  I don't feel sorry for them, nor do I worship them because they're "role models" for their conditions;  each of my friends has challenges of their own.  I look out for them, they look out for me, but always as people, not for collections of medical conditions or "heroes" or whatever the conception of people with disabilities is at the moment in the popular culture.

Like Paterson, I cope as best I can with my conditions but there are still times that bring me to tears.  Once, I was at a friend in the Barnes & Noble coffee bar talking.  One man went up to us and told me to keep my voice down, he could hear me from several seats away.

I don't knowingly raise my voice to be annoying in a public place.  My hearing loss makes it hard sometimes to modulate my voice to a good level, and I had been focused on my conversation, as one would with a friend.

I left in tears. 

Another time, I was waiting for a bus.  It was morning and the light, as is often the case where I was waiting, made it hard for me to see when and where the bus was coming.  I had lost my attention for a moment—remember, I have ADHD—and my bus had just appeared right there.   In those days, I could not read the electronic signs on the buses at that time (this was in 2001 and the signs on the old RTS buses were unreadable and often broken).

I panicked and ran on the bus, not seeing the woman waiting next to me.  I'm blind in my left eye and didn't see her at all.

Bus driver tore me a new one;  I was inadvertently rude.  I had not gotten up that morning just to be rude to someone, but that is what had happened.

There are those incidents, and many others, that remind me, sometimes cruelly, of the limitations I have.  The fact that I can only recount a few such incidents is due mostly to the people I surround myself with, at both SATV and the Salem Commission on Disabilities, who have provided me with a niche I can live in.

Paterson, at 53, has had the time and the opportunities to find a niche and coping strategies that he uses in his daily life.  Now, as Governor of New York, he'll have to use them all and then some.

I wish him the best of luck.

More:  How a Blind Man Will Lead a State - Well - Tara Parker-Pope - Health - New York Times Blog

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