Monday, June 27, 2011

I'm Such A Special Guy

The ramp up to the museum was long, tortuously steep with many sharp corners. Plants, huge plants, grew on either side of the bottom part of the ramp and narrowed the passageway significantly. It was impossible to push without grabbing on to branches and pulling leaves off. But we made it to the top. Joe breathing hard, me with sore shoulders. When we got in and were greeted in the reception area, I said, 'That's quite the ramp you've got out there.' I was smiling and my tone was light. I didn't want a confrontation. I didn't want a discussion. I just wanted to indicate that the ramp was a difficult one.

She looked at me, not with hostility exactly, but with, maybe, forbearance, and said, 'You should be grateful we've got a ramp at all.'

I said, still not wanting a confrontation, 'I refuse to be grateful for what others take for granted.'

She said, 'I see,' but I knew she didn't.

There is an emerging pattern in my interactions with the 'outer world' in the last few months. A pattern that I've experienced before and that, because of that, I should have recognized immediately. Let me give you another example.

We were staying at a kind of resort hotel. I was to speak at a conference there the next day. The resort was spread out over several acres with various forms of hostelry, cottages, bungalows, small clusters of rooms, all gathered around a main building with reception and a restaurant. The one disabled room, that in itself tells you a lot, was down a steep hill from the main building. The room itself was accessible but the means to get to it was barely so. The car was parked on a gravel parking lot, there was no paved path from the disabled parking to the sidewalk and no cut curb from the gravel to the sidewalk. OK. We managed. With great difficulty.

Joe informed me that we were going to also have difficulty in the morning because the restaurant itself was not accessible, and the way from the restaurant to the lecture hall was impossibly steep and far too dangerous to get there manually. We drove around, found the hall, figured a way to get me into it and then headed to the room. By now we'd been in the car for hours and were very tired.

Once in the room, we called over for room service. We placed the order. Then five minutes later we got called back from an embarrassed receptionist to tell us that the restaurant was closed that day. Now we are in a room that I'm not leaving again until it's time to go and lecture. Joe has cracked open a beer and is half way through it. Now we are told that we can't get food. I demanded to speak to someone.

I spoke to a manager and outlined our difficulties. Including not being able to get into the restaurant, the one that was now closed, for breakfast and the inaccessibility of the entire venue. He said that if I could get myself to the lecture hall in the morning he'd have a staff bring me breakfast from the restaurant. He also said that he would arrange for us to get a pizza if we'd like. The resort was far, far, far, from any town and the restaurant was closed, I didn't know how he'd manage but I thanked him for it and placed the order.

Then he wanted to talk about my needs for the lecture the next day. I don't PowerPoint. I don't overhead. I don't use anything but a microphone. I said, 'I'm fairly low maintenance.' He said, keeping anger under control, 'It doesn't seem that way to me.' I told him that I was astonished that he seemed to think that the desire to be able to get into my room, get into his restaurant, get into the lecture hall and get fed in a resort was exceptional. The discussion devolved from there. Let me just say that we checked the pizza over very carefully looking for evidence of spit.

Why do people think that wanting the same thing as other people means wanting 'special rights'. I never understood why people believed that gay people wanted 'special rights' or black people wanted 'special rights' ... when all that was ever asked for was what the majority expected as their due. Now here I am a disabled guy being told that access should be subject to my gratitude. That I am difficult because I want to eat breakfast in the restaurant of the hotel I'm staying in. The irony is that it takes 'special effort' to accommodate me by having a staff provide 'special service' by bringing me breakfast in the lecture hall - that's all true, but my 'special need' is caused by their denial of 'typical expectations.' What other person in the hotel was denied access to the restaurant in the first place.

A museum volunteer wants me to be grateful for access that is dangerous, difficult and demanding.

A manager wants me to understand that basic expectations for people without disabilities are exceptional demands for those with them.

I'm supposed to be thrilled with the barest minimum, the crumb from Christ's table, while those with value and privilege sniff and roll their eyes at the mere idea of providing 'special rights' for 'demanding minorities'.

What I see as privilege, they see as fair due.

What I see as basic rights, they see as unfair demands.

You know what?

I know why some are angry.

My winning the freedom to love limits their freedom to hate.

My winning the freedom of access limits their freedom to exclude.

My winning the freedom to participate limits their freedom to discriminate.

And that's OK by me.

So, until the battles are all won, I need three things.

Access.

Respect.

And the restraint not to tell people to 'f#ck off' several times a day.

15 comments:

Anonymous said...

Wow, Dave,

I liked your last post very much. But this one gets me coming and going.

You know what you need. You can voice your needs. And you are able to feel in tune with your needs and demands. I am so glad you are. You are like a beacon for people like me. Trying to do their best but always insecure in a society where your value is almost always seen in your ability to be "productive".

As a grown up with a congenital heart diseases I had to learn to carry on. It was hard. Sometimes I felt like a human guinea pig. I know that I was loved. But I always required extra planing from my parents. Somtimes - even today, knowin lots of people with congenital heart disease - I feel like an alien. Different, kind of included but never ever able to feel or do like an averge human being in sooooo many ways.

Sometimes I am so sad. At my work place there are more than 70% people in my age group. Every single one of them is married with two kids. I feel so overwhelmed when they talk abourt their familys. I feel so sad for maybe not being able to have my own family. Sometimes I am even angry about what they got so easily.

But my mom reminded me, that thats there normal life. I need to understand the not disabled people too.

And then my friend died. They both had a congenital heart diseases. She and he. I was at their marriage. I was a friedn to both of them. I would have been the godmother of that child...

It was hard. For a while I refused to talk to my other "heart"-friends in fear of loosing them too.

It ist getting better now. I had counseling for my grieve. Turned out my behavourial-therapist is gay.

Turns out my other friend found a nice woman again (not with a heart disease) and I am invited to their marriage.

Turns out most of my friends see me as simple being me. Not as someone with a congenital heart defect but as someone you can have a lot of fun. Even so sometimes being with me needs way more planning ahead.

Sorry if I rambled.

Julia (from Germany)

kiwiaussie said...

Great Post. I only just discovered your blog after a link was posted to your R word post. Now I am slowly working through your posts, but skipped to this one when it, too was posted on my FB page.
So far, I am blown away by the way you present your insights. Brilliant. Wish I could get everyone outside the disabled community to read them! But somehow, I find that the ones who bother to read, are the ones who are already affected by disability. Those of us who are parents (my 2 year old daughter has Down Syndrome), and those who are disabled themselves.
If only the rest of the world would take 10 minutes out of their busy lives to read your blog each day, the world would be a much better place.
Thanks for all you are doing to change the hearts of the many who simply don't know, or don't care.
God Bless you
Carolyn in Australia

coffeetalk said...

Dave, you also need continued access to a microphone and computer. Your words are powerful! Carry on and we'll carry on with you.

Colleen said...

Dear Dave:

You are so right! These are not just your quirky needs, you are entitled to them, civility and respect, access, and the right to a loving relationship with a consenting adult. I would go so far as to say that this is a matter of civil rights and a case of exclusion by design. I do admire your restraint!

Colleen

ivanova said...

Huh, I suppose you should be grateful every minute you're not being smothered with a pillow. This makes me mad!

Andrea S. said...

This is one of those times when I feel like I should say something but can't think of a thing because you've already coverd all the essentials.

Equality is not special treatment. That's the whole POINT of equality. Why do some people have such difficulty grasping this point?

Jess and Glacier said...

Very well put. As one of your other readers said, I should have something to say, but you have already said it. As a blind person my physical needs are different, but the attitudinal barriers you speak of are very similar. This post was incredible.

theknapper said...

I think this behoves us folks who don't need the adaptations to also speak out when we notice that places aren't accessible.

liz said...

AMEN.

Shan said...

So who on earth booked your disability-themed lecture at this totally inaccessible resort hotel?! The irony is simply reeking.

"It doesn't seem that way to me," what bloody cheek.

Anonymous said...

Hi Dave, First time writing on your blog. I am a support worker and would like to order your books. Sadly you can't buy them at Chapters so if you could tell me where I can purchase them I would appreciate it. Thanks.

Noisyworld said...

Attitude FAIL!
You pay your money like everyone else, you should get a (reasonable) service- like everyone else, even if it means not doing it like everyone else.

*Noisy goes off seething...

Anonymous said...

another great post!

Patricia said...

If only people realized personal needs are not special requirements. I know one gentleman who was established as a consultant in the High Tech industry. He became a quadriplegic due to a road traffic accident. After a year or so break for rehabilitation he became involved in the High Tech again. As before a lot of his communication with people was by phone or internet - all of which he had no problem using with the help of adaptive devices and computer programs. He said through all these discussions he was always on level ground with the people he was dealing with. When they met him they often had difficulty concealing their shock as to how someone in his physical condition could be so knowledgeable in the industry. Their reaction shows their ignorance in the very field they are specializing in - progress. Twenty years ago this gentlemen would not have had the resources to be able to continue using his education, experience, skills and knowledge. As part of progress people need to be made aware disability is not inability. In all walks of life people differ some are stronger or more assertive than others; thank goodness there are people like the gentleman I know and you Dave who have the strength and assertiveness to help disabled people that do not have these strengths.

berbas said...

A couple of years ago, I remember attending to one of your lectures, (somewhere in the Ottawa Valley). The Hall that you were supposed to give your presentation, was not whelchair accessible!! Therefore, they did some last minute changes, and we all moved to another building not too far from the former one. I was very annoyed, not so much for me, but for the inconvenience and delayed they caused to your schedule. However, you just carried on, like nothing happened. Your presentation was great, and you kept the audience happy and laughing. I wonder how often you go trough those situations and how do you manage to keep so calm?