Thursday, January 31, 2008

Invisible disabilities

Today I spoke at length to a friend I had not seen in a while. She has severe spine problems and has had multiple surgeries; the last surgery has afforded her a little pain relief, thank goodness. I see and acknowledge her pain. I hope she knows that.

People seem to think I'm in more pain now that they see the scooter--sometimes, yes, but the duration is much shorter with the scooter and less intense, though I push myself to the usual high pain level because of the thrill of getting out. It is the same disability as last week, only people's perceptions immediately changed.

As I cross the threshold from invisibly disabled to visibly disabled, I am reminded how difficult it is to negotiate the world and get needed help when the disability is invisible; now I have no problem getting help. Ironically, my pain is less now than it was before using the scooter, but only now am I getting some of the accommodations that I needed several years ago, before I had the scooter. I needed them more then than I do now. I'd like to continue to advocate for those who have invisible disabilities and medical problems because it is so often difficult to get the help, support, and understanding needed. To my friend, I see your pain even if others don't. It's not less than mine.

I know how easy it is for me, even when walking, to judge other people for using disability spaces, as they may in turn be judging me. But I have met a number of people I'd never had guessed were disabled--young, healty looking people. One had referred to herself as "gimpy," and I inwardly felt angry, insulted; only much later did I find out that she'd been shot and left for dead, and because of resulting medical problems is unable to work. Another woman in a Starbuck's, as her talkative retired parents told me, had severe spine pain and was on the phone with the surgeon's office. She, too, was young and energetic looking, beautiful, but in terrible pain that left her incapacitated much of the time. My new worry is that my husband will get yelled at for parking in disability spaces when he picks me up. He never uses it on his own, and we don't use it the rare times when I don't need it, even if parking is scarce, because someone may need it more. Please, guys, let's not judge, let's hope that people are using the parking places as they're supposed to.

Anyway, after a difficult roller coaster of a week and a half, I am mentally thanking all the people who make life easier and so normal by their friendship and good human spirit. We talk about disability--me using a scooter would be an elephant in the room otherwise--but really, not so much is different. Their compassion (not pity! they don't show that) means so much. That in contrast to being reprimanded for not knowing whom to go to with accommodation requests (the policies are unclear and unwritten, and I've asked many times that they be clarified and written). Despite some of the problems being out in the world, I have such renewed and absolute faith in my friends and almost all of my coworkers, who are so completely cool.

Some of the changes at Very Big Workplace had been requested by other PWDs for ten to fifteen years--they had been turned down because of lack of money, and it would have been a poor job move to protest. Once I knew it was not just my needs, I felt more strongly about advocating for the changes. With a 70% unemployment rate for PWDs, making waves is difficult. But I've made them, and a few people are upset about that. So I have to say it really touched my heart when someone at work wrote me:
"I think you ought to take a photo of the new asphalt transitions and frame it! They are beautiful bec. they represent so much of your heart and caring to me -- they change [Very Big Workplace] for the better."

What Very Big Workplace (VBW) does not realize is that employees are not required to notify them that they are in violation of ADA. Being a reasonable person, I have notified them multiple times about certain big issues. But I don't have to. I could have just filed a lawsuit without notification or without following up after. I'm not sure they understand that.

It's been a detriment to my own work (and a few people's perceptions of me) to advocate for these changes, but I hope this kind of thing benefits many people, that the requisition process is made clearer, and that it paves the way (with smoother asphalt) for people who make future requests. I know a few wheelchair users immediately turned down VBW while trying to navigate during a visit.


Elizabeth McClung said...

I think that now that you do have more energy and are more visable, it enables you do that advocay work - which you are already getting rewards from. It is difficult to explain when you have an invisable disability why an accomadation should be made without having to confess what is personal, private medical information often to no good and an unreceptive audience. For some reason, repeatedly smashing a wheelchair into a space too small to pass through seems to get people's attention a lot quicker - and thier own embarressment level up. Because, yeah, now it looks like THEY are part of the people picking on those with disabilities (which is easier to do successfully in apathy when the disabilities are less visable).

Anyway, Go you go!

FridaWrites said...

Thanks for the encouragement, Elizabeth.