Monday, May 05, 2008


"At least you aren't alone this time," Joseph said indicating the woman in the wheelchair on the other side of the aisle. I nodded, smiling at his easy comfort in joking about my disability. We had gone to see "Iron Man" as part of his 14th birthday celebrations. Joe and I sat at the back of the theatre where the wheelchair seating was. To be honest I was a little startled to see someone else there in a wheelchair, I've been to that theatre many times, never seeing another wheelchair user.

I had insisted that the others go and sit down near the front, I know that's their preference, as we were all just going to sit in the dark anyways. Ruby kept leaving her seat and walking back up the aisle to us to get our movie treats as she preferred them to theirs. She'd arrive, all 18 months of her, and hold up a cup for me to fill and then she'd stride back down to her seat. She was almost more fun to watch than the movie.

Later, back in the hotel, everyone had gone off to go swimming and I stayed back. I wanted time on my own, I like quiet, and the pool area isn't really accessible and it takes a lot of work to get into it. I wasn't up to it, Joe wasn't up to it, so I just stayed back in the room. Quiet descended as soon as they were all gone. How parents put up with the noise noise noise all the time baffles me. I lay down on the bed to read and then thought about what Joseph had said in the theatre, "At least you aren't alone ..."

Obviously I wasn't alone, I was there with family and friends. I was surrounded by people. But Joseph caught a small truth, even in the company of others - it's possible to be quite alone. Even when well integrated into the world - it's possible to be quite alone. Even when fully included - it's possible to be quite alone. I've been alone before. I worked a job where I was the only guy in an office entirely made up of women. I've been in places where I was the only gay person there. Often I've been the only fat person in the room. So, now, the wheelchair thing is just another way to be separate.

I wonder how much I should identify with my disability. How much of who I am becoming is informed by the set of wheels attached to my bum. Certainly I see the world differently and understand people in a whole new way. Certainly I think about physical barriers in ways I didn't before. Certainly I am dependant on others in ways I couldn't have imagined. But what does that all mean?

I closed the book I was reading and thought about what Joseph said, "At least you are not alone ..."

Those are powerful words because ultimately isn't aloneness what we most fear? The basis of my faith comes from the 'creed' - We are not alone, We live in God's world ...

To whomever you were, sitting across the aisle from me at Iron Man. Thanks for going to the movies on Saturday. It was nice not to be alone.


lina said...

Very perceptive of Joseph - amazing what young eyes can see.

FAB said...

I also went to Iron Man on Saturday (down here in PA though) there was a young girl in the audience who also uses a wheelchair, I watched as other people walked by and averted thier eyes as if she were invisble, she was almost completely alone in a theater jampacked full of people! I wish this hadn't been the case, I wish there would have been someone else there, so she didn't feel isolated. On the flip side of that I went to the park yesterday and enjoyed nature at it's best, there were examples of everything that occurs in nature, including people who use wheelchairs fishing, a few young boys with down syndrome playing with other boys, young people, older people, everyone. It was community and nature at it's finest!

rickismom said...

I assume you have seen America's new guidelines who NOT to treat in a pandemic? (Anyone with low long-term survival chances, chronically ill, and mentally impaired...)

Anonymous said...


Where did you read or hear of this? Apparently, I'm just supposed to shut up and die if a pandemic hits because I have a disability that won't go away.

rickismom said...

"The suggested list was compiled by a task force whose members come from prestigious universities, medical groups, the military and government agencies. They include the Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services.......

Their recommendations appear in a report appearing Monday in the May edition of Chest, the medical journal of the American College of Chest Physicians.....

Those out of luck are the people at high risk of death and a slim chance of long-term survival. But the recommendations get much more specific, and include:

People older than 85
Those with severe trauma, which could include critical injuries from car crashes and shootings.
Severely burned patients older than 60.
Those with severe mental impairment, which could include advanced Alzheimer's disease.
Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes...."

What is severe mental impairment?
Severe chronic disease?

It is not hard to imagine some doctor who believes that you should have been aborted, or that your life is a misery, or that you are "better off dead" to decide that you fit into one of these groups

Ettina said...

I feel alone most of the time. Sadly, even seeing another autistic person doesn't affect that much, because either they seem normal or they are disabled enough to be treated as a 'different type' than me, and there's that line between us of perceptions.

Anonymous said...

You are defined only by what you allow your self to believe about how others percieve you. Misconceptions of others and what they believe to be true can cause a body much anguish.