Life: X,Y and C

One summer, when I was between broadcasting jobs I worked as a summer camp director.  A local charity decided to rent out a well known, well established camp facility to host a group of local kids of a week.  They needed a local face, a recruiter and set of eyeballs on site.  I'd worked at this facility in college as a counselor so it was a great fit and an awesome way to spend the summer.

One of our campers was a kid with Cerebral Palsy.  Unlike me, he was non verbal and used a power wheelchair.  Like a lot of people with CP, he was smart, charming and a social butterfly on wheels.  I, along with people from the charity interacted with his family at different times during the week.  They spoke about their hopes for their son, a college education, a home, a family, the same stuff they hoped for each one of their three kids.   We all agreed that would be the way to go, that he would definitely have every opportunity to have a typical life, and we hoped the level of independence he was getting to experience at camp would help him grow to that place.

Later though, as I was walking away from the parents as they left, the head of the sponsoring charity said " I hope there is some kind of program for him when he gets older. "

I was surprised to hear him say that.  I reminded him of what he just said not an hour before "Yeah, I know but, its not like he is, well, like you or anything, he's never going to really have a job, I mean, how can he? "

Fast forward 10 years later, I am working as a consultant.  My new client is bragging how he moved a building from its original location to his site so he could "get around the Americans with Disabilities Act".   The people in the meeting were shocked, trying not to stare at me to see my reaction.   My new client picked up on the vibe, looked at me and said, "No offence to you, its those troublemakers that piss me off, not people who work hard like you. "  I smiled politely and waved it off.

In both cases, these were men I had worked for or was known to, in some capacity before these conversations took place.   And that is the key: if you have a disabled person in your life you don't see them as disabled, but those "other people" are totally a different story.

But what they don't get is that it is all a matter of perception and perspective because, outside of my group of friends and acquaintances, I am one of those "other people".

The first time I ever went into a car dealership where I didn't know the dealer personally, the salesman asked me " is your helper coming?" and when I looked surprised he said "oh I mean the person who needs to sign for you. "  I said no, and left the dealership promptly.

I called a housing development in the city where my girlfriend at the time was living.  I was seriously thinking it was time to relocate.  The development was an old textile factory converted into apartments.  It had a gym and the old "waterwheel" room had been converted into a swimming pool--super cool.  The pleasant rental agent assured me they had plenty of apartments and I should definitely come over and take a look.   When I cam crutching in, suddenly, all the vacant apartments had been rented, in less than 45 minutes.  She didn't see a point in putting my name on the waiting list and she wouldn't let me look at the rental model just to see if it would work for me.

A few years ago I was invited to an event promoting handcycling as a sport.  I was pretty pumped.  I envisioned finally hanging out with other active, highly functioning disabled people, being on a team, going to "stuff", being part of an active social group.

When I arrived, the group was all injured veterans and guys who had been in some kind of accident.  I went over to introduce myself and the rowdy conversation became quiet, they were polite but remained quiet until the event organizer came over to get me set up on my orientation ride.   I was already crushed though.  I did the ride, actually crashed the bike (in a good way).   My friends thought it was cool and so "me" but there was to be no Bud Light Commercial moment for me.  Some friends did admit they were hopeful that I would find a social group of "my own kind" finally so I wouldn't feel so left out.  So even they acknowledge, in their love for me that I am different from them.

I could fill pages with similar anecdotes.  The reality is that despite all the PR and the encouraging language about being "just like everybody else", I know and the people around me know, the world doesn't work that way, but it is hard to admit.

When I get the "your disability doesn't define you" speech, from a non disabled person, I know they mean well, but it still frustrates me.

Disability is, after all, a profound life experience.  I think we do ourselves a disservice by pretending it doesn't shape us, doesn't contribute significantly to how the world around us perceives us and how we perceive the world.  I know their life experiences shape and define them.  They are actually encouraged to embrace them, to be proud of them.  When you are a person with a disability you are supposed to go on in spite of it, never talk about it, make it look easy, conquer the world without a sweat or a tear.

Ultimately, the people in our lives who do not see that we are different do it out of love and do it to encourage and support us.  Those "other people" view us through their own experience and their limited understanding of what it is to be a highly functioning person with a disability.

Or, to put it much more simply, they don't ask, and we don't tell because we have all been taught to not have the conversation.

Until now?