Monday, November 18, 2013

Nuit Blanche

It happens, on early mornings like this one, that I find myself reliving a particular moment of my life. I was just starting out life as a wheelchair user and was dealing with the changes that came along with my new status as a disabled person. The physical part of it was fairly simple. I'd worked, in the long ago past, with teens with physical disabilities, I knew about the physical barriers and I knew that I'd need to learn the logistics of navigating a world that still considered access a gift given in charity to those who don't quite deserve the generosity. That I was prepared for.

What I wasn't prepared for was the automatic assumption that a huge part of my life was over, simply because I was a wheelchair user. I clearly could not travel anymore. I clearly would have to give up lecturing and consulting. I was trying to fit this into my head. Why were all these people, people who work with people with disabilities, telling me to simply give up and move on? These were the people who were supposed to be my support as I reentered the world as a disabled person. I got the message that I should be glad that I was alive but I should realize that being alive wouldn't mean as much as it did before.

Joe and I had a trip scheduled to the UK. I went to see my doctor and asked him about the trip and the travel. He saw no reason for me to be grounded. We talked a bit about energy and rest. We talked about some common sense things that I'd have to think about in terms of my own care and care for Joe. He simply didn't see the obstacles that others clearly saw. We went. Four weeks, eighteen lectures, fifteen cities. I was tired but exhilarated. I'd loved it as much sitting down as I had standing up.

On the night before travelling home, I was up, like I am now. Thinking about those non-disabled specialists in disabled living and how they wanted me to simply expect less of myself, less from the world ... less would be the new normal. They were right in some ways. Some organizations, while negotiating to bring me to train, on finding out that I was a wheelchair user backed, gently and quietly out of the negotiations. They used words like 'logistics' and 'mechanics' ... meaning of course that there was no way they wanted to consider or be bothered with access. So, I lost part of my business.

But they were very much in the minority. Others, most, just took it in stride. I'm now a few hours car ride from home, I've been in 5 cities, done 7 days across those cities, and I've travelled nearly 5000 kms to do it all. I enjoyed the work, the people and the challenges that each day brought. Completely.

And here I sit, not being able to sleep because of the excitement of going home. Where, by the way, I will do my first International Webinar this week. This week I'll be working with the folks in England about my trip over in the Spring - like we've done every year. I wonder, not at doing what I've always done, but at why those who first spoke to me about my disability were so insistent in having me adopt the 'role' of helpless and the 'status' of lesser? Few were encouraging, most were wanting me to have the 'big realization' that my life would be 'forever changed.' They never said, that I was now 'confined' to a wheelchair, but their words whispered the message.

So I'm here, typing quietly in the dark, on the morning we go home. This is tradition. It is now tradition for me to be doing this in my wheelchair, but it's been my tradition since I began this work several decades ago. Going home is exciting. And, in a small way, proving those voices wrong, is equally pleasing.


Tamara said...

I'm a bit shocked that anyone who knew you would have tried to stop you! Glad you didn't let them keep you from continuing your life on your terms.

Dave Hingsburger said...

Tamara, they didn't know me, they were the professionals who where there to help me adapt to disability. People who worked at the hospital and clinic. None of my friends or co-workers expected my life to be less.

Glee said...

Our Disability Discrimination Commissioner here in Australia, Graeme Innes said: "The soft bigotry of low expectations". Perfectly put. Insidious.

That's what it is. And it is Ableism.

Am with you every bit of the way Dave.

Colleen said...

Dear Dave:

As you have so eloquently said, "doing damns the darkness".

Glee - love that "the soft bigotry of low expectations" - oh my, how common that is!


Kristine said...

I learned this lesson when I was 17... I think my parents shielded me from it before that. But senior year of high school, I was at my IEP meeting. (Now that I know more about these things, I don't understand why I was on an IEP instead of a 504, but whatever.) It was the first time I'd ever attended my own IEP meeting. When it came time to talk about "transition," my post-high school plans, I explained that I wanted to attend a particular university out-of-state, that I'd already received a half-tuition scholarship there, and had secured my dorm room. I had several college credits already from advanced classes I'd taken. From my IEP team, I asked for help figuring out home health care--where that would come from, who would pay for it, who would provide it, and how I could make arrangements from out of state. I'd never done it before, and my friends certainly weren't having to worry about all that while making their college plans, so I was overwhelmed and seeking help. The IEP team, all the specialists that were supposed to support me, ignored my plans, and insisted that I meet with the school's career counselor and check out brochures for local community colleges. I finally agreed, just so the unhelpful meeting would end, but I never followed through with that meeting. My parents and I figured it out, with no help from the professionals, and I went to the university I'd planned on, and have lived independently ever since!

Connie said...

Years ago while tutoring a nine-year-old with her reading, I arrived at her classroom while she and two or three others were working on a story in their reading book about Jackie Robinson and his difficulties with being the first black player in the major leagues. These girls simply could not get their heads around the idea that blacks hadn't always played major league baseball. In their world, most of the players are black or Hispanic, after all.

Ruby and Sadie already know that you can go anyplace and do anything in their world. When will the rest of us catch up to them?

Anonymous said...

Oh Dave,

with me its completly the other way around. I was born with my heart condition. But everybody expected me to do, learn, work as much as possible.

I eneded up exhausted and upset with myself.

I know how you feel and what you experienced but for me it was the other extrem...


PS Maybe I can manage to visit one of your lectures in England next spring.
That would be lovely...

Deb said...

As a polio survivor in the 50s it was a strange mix. You were told to push yourself to the max, never give in an inch to your pain or exhaustion, fight tooth and nail.

At the same time you were told you couldn't do x, or y, or z, and you were not allowed to go back to school until you were free of braces and crutches. I don't remember ever seeing anyone in a wheelchair outside a hospital until I was in my 30s!

My medical training was cut short because I couldn't run the nine floors of stairs in the hospital where I was training multiple times a day. Or I could but then my legs buckled at gurneyside in the ER and I sprawled and scattered surgical instruments all over the room. Counseling session within 24 hours. I was not a suitable candidate for a career in medicine.

We live in a schizophrenic world where disabled athletes are lionized but those who must use wheels or a cane are looked on with horror. I think this goes back to peoples' fears. They see an amputee who can run faster than an able-bodied person and console themselves that if something happened to *them* they'd be able to compensate just like that guy. The person in the wheelchair is a reminder that not all people *can* compensate, and that scares the bleep out of them.

Maybe your disability blurred the lines too much for those organizers, Dave. Scares them to think that working with the disabled isn't vaccination against becoming disabled yourself. It's a strange place inside our heads. LOL

B. said...

Very thought provoking, thanks. Best to stay away from those professionals. When I did push a bit to see why they promote low expectation I got back an honestly blank stare, complete lack of understanding. Sometimes I can have a bit of fun at their expense. Usually it's just plain sad and I wonder at the damage they have done to many people who are new to the disabled world.