Tuesday, August 21, 2007

Big Deal

We'd gone downstairs for tea at the small coffee shop on the main floor. I was bundled up in housecoat, hospital blankets and my little urine bag rested by me feet on the footrest of the wheelchair. I didn't know then that my life was going to change and that wheelchairs would become a major part of how I got around. All I cared about was that I was out of intensive care and heading down for tea. This must, I thought, be a good sign.

I remembered all this yesterday, being home sick, talking about going to the hospital to get checked out. Instead, I just took nap after nap and drank ginger ale. But laying there I couldn't help remember how I transitioned from walking to rolling. How sometimes fateful things happen and you don't know that they are fateful until a while later. But back to the coffee shop.

Joe pushed me up to a table and went off to get us each a tea. The coffee shop is located right at the edge of a walkway and you can look down to the next floor where there is a larger cafeteria at the crossings of several pathways to specialist services. Joe set my tea down and we were both quiet as we drank our tea.

A fellow came in for coffee in a power chair and glanced around the coffee shop nodding at me, and only me as his gaze swept the room. After he'd gotten his coffee he pulled up to the table next to us and asked without any introduction, "So you disabled permanently or are you just hospital disabled?"

I was nonplussed. It was the first time I wondered if I would be in the chair for the rest of my life. I knew that I still couldn't walk without someone right beside me. I knew that long distances were out, for now. But I didn't know what the future held. The doctors had been non-committal and fairly uninterested. I had come into the hospital with two concerns, one a mammoth infection, the other was the loss of balance, of feeling in my legs. They were very focussed on the infection and had barely even begun to consider the legs.

"I don't know." I said and explained the perdicament.

"Well, if you are disabled," it's no big deal. "I've been so for most of my life. It's no big deal."

"What about accessiblity, what about attitudes?" I asked. He looked confused that I would even know about those things. "I work with people with disabilities."

"I'll grant you, it may be a big deal to others. It may be a bit frustrating at times. But that doesn't mean it has to be a big deal to you."

The converstation moved on to other things. I never did understand what brought him to the hospital that day, he was evasive on the issue. He glanced down at his watch and announced that he had somewhere to be. We said goodbye and he took off.

Before I got the news that I'd need a wheelchair there was someone to tell me how to think about it. How I shouldn't let the frustrations of inaccessibility or the attitudes of others affet me. How it shouldn't be a big deal to me.

And it isn't.

What a gift that guy gave me that day.

I remembered the two women who I met in Michigan. They were with an association of parents with Down Syndrome. Part of what they did was meet with new parents and talk to them about what it is to parent a child with a difference.

I hope they remember to say.

It's not a big deal. Beyond the frustrations of dealing with others, beyond the lack of resources and access. It's not a big deal.

Because, as I've heard over and over and over from others, it isn't.


Anonymous said...

You might want to wander over to http://theseatedview.blogspot.com/ for her "rant" yesterday on wheelchairs. She lives in Toronto so we are all talking about the Canadian Health Care system and what it provides.

All 4 My Gals said...

Dave, when we found out prenatally that T had T21 we had JUST moved to Lansing, MI. We weren't even unpacked yet. We were fortunate/blessed that we found a pediatrician who has a son that has DS too. The best thing he said to us was, "Congratulations!". That really stuck with us and I'm sure affected the way we would celebrate our daughter's diagnosis.
Thanks for sharing!