No past, no future, I am all that you see: disability
My future was stolen from me. No, not by disease but from people I encounter daily whose vision is so clouded by my disability they cannot see me. My past has been stolen too, thrown away as irrelevant. Even my care workers number among those who imprison me in amber: a stasis without expectations, without common connections, aspirations, or identity. 鈥楧isabled鈥 is a word that has no past, no future, and only a continuous state of being.
When I was able bodied conversations went like this:
Person A: 鈥淗ey you just moved from the England right?鈥
Me: 鈥淲ell, they like to call it the United Kingdom, but yes.鈥
Person A: 鈥淐ool, found a job yet?鈥
Me: 鈥淣ot yet, I鈥檝e applied for work teaching at the universities and some government jobs.鈥
Person A: 鈥淥h in this job market you don鈥檛 have to worry, I work for government, great vacations, I just got back from Mexico, ever been there?鈥
Me: 鈥淣o, but my partner and I want to go to Hawaii if a good deal comes up鈥︹ Blah, blah鈥.
I cannot remember ever, while in the wheelchair, have a person ask me what my job was, or what career I was planning. Today when talking to the assistive technology department of BC, I informed her that yes, I do work and yes I have deadlines which was met with: 鈥淩eally? 鈥 mean, wonderful, you are a perfect candidate!鈥
A bit later, after another, 鈥淩eally?!鈥 from telling her I write from three to five hours a day, she delicately brought up the aspect of money. After a year trial, I would have to buy any adaptive technology (like Dragon 9) at a substantial reduction. I said that though I don鈥檛 qualify for disability funding (my partner and I would need to be significantly BELOW the poverty line) and while we aren鈥檛 well off since I get my book residuals in Feb, I didn鈥檛 anticipate the payment as a problem. 鈥淥h鈥..OH!鈥
Lady, I鈥檓鈥r, 29 and holding, is it so impossible to think that I have a past, I might have/had a career or that I could have SOME independent funds? Apparently.
These are a few of the questions I am NOT asked: are you going to university, are you thinking of getting a masters degree, are you thinking of moving in the future, what kind of jobs did you have before now, where do you go on vacation, have you been to country X, have you seen the cheap flights to Y, what new projects are you starting, what new hobbies do you have, are you dating, are you seeing someone new, do you have a partner, how long have you been together?
As a disability 鈥榥ewbie鈥 I quickly ran smack into 鈥榯he rules.鈥 No, not PWD rules but those actions and attitudes which are just 鈥渘ot on鈥, disconcerting, not appropriate or downright offensive to so many in the able bodied world (especially those employed to 鈥渁ssist us鈥). My natural personality seemed particularly offensive: driven, intelligent, visibly bored, sarcastic, and prone to try anything. And for me to act as if I was鈥.well someone, someone who had 鈥渁 future鈥, someone who did not suffer fools and someone who acted as if they were鈥n equally significant person was pretty darn distasteful. This is disability, NOT customer service!
To imply I was JUST LIKE THEM was both inconceivable and offensive. When I told a same aged care worker how beneficial that she was in a union in case of disability she laughed, 鈥淚 won鈥檛 need that, I鈥檓 young and I exercise regularly!鈥 Yet she 鈥渒new鈥 that months before working for me I was not only exercising vertically but in national sports competitions.
One day, I decided, because of my neurological heat intolerance, I needed some wicking exercise tops, so I wheeled to the local specialized running store. You would have thought I was on fire the way people either ran to avoid me or ran to contain me. No one in a wheelchair had ever come into this oversized dedicated running shop where EVERY changing room had two steps up to enter.
A person in wheelchair doesn鈥檛 have a past; that鈥檚 what the shocked looks told me when I handed the people at Triumph, the government funded disability employment agency, my multi-page CV/resume. 鈥淭his is my research one,鈥 I told the stunned case manager, 鈥淒o you want the teaching one or the management one?鈥
鈥淣o, no,鈥 she said, as she slowly spread the pages before her like a magical scroll from legends, 鈥渢his is MORE than enough.鈥 Wait, this isn鈥檛 just about getting me an entry job doing data entry or stuffing envelopes right? This is about career development in a desperate labor market鈥.isn鈥檛 it?
I just started badminton. I called the front desk of the Y telling them I was going to be there Sunday for badminton and they might tell the organizer I was in a wheelchair. 鈥淯h, I don鈥檛 think that鈥檚 going to work鈥..not in a wheelchair.鈥 By this time, 10 months into the walls and cages of people鈥檚 minds, I just sighed and said, 鈥淚 am about to spell my name, Elizabeth McClung, and I will be there Sunday.鈥
After I warmed up with the director, we rested and people starting breaking into groups. I asked this person and that person but no matter whom I asked, they either weren鈥檛 playing right now, or didn鈥檛 want to pair with me, or were already paired. Every one of the 14 people in the gym knew exactly where I was, had stared at my chair, yet not one of them would play that game of badminton with me, nor the game after.
The Y director noticed, walked into two games, pulling a guy from each of them and said, 鈥淵ou are playing doubles with us.鈥 The Y director and I won. People said, 鈥淵eah, we can double, I saw you play and you were pretty good.鈥
Yeah, but I鈥檝e haven鈥檛 seen you play but I鈥檒l give you a chance anyway. If I said back to them what they had enacted to me, I would have seen the most offended faces possible. But like I said, I am 10 months into the walls, cages and expectations. Maybe even I got worn down a bit.
I am getting tired of trying to fight an invisible foe, one hiding in the minds of those I face. You don鈥檛 know what I鈥檝e done, or what I am already doing. And you never will, because you have chosen, instead of seeing ME, to see only 鈥楧isability.鈥
鈥 Visit
Comments
This is the Moggy that periodically comments over at your blog...yes, I am everywhere, muahahaha!! ;)
I wonder what degree of difference there is in the attitudes where you live, compared to my home -- or is it perhaps based on disability? Can't be age, I'm turning 31 in late March, and things haven't changed much for me over the years...
I wonder that because the attitudes I've gotten from people, seen around my region (San Francisco Bay Area, California, USA), or read from USA bloggers aren't like that. If you look through the links to other blogs I read (which need updating, I admit) over at my blog, check out Growing Up With A Disability or Ballastexistenz for some examples.
OTOH something I've noticed is that non-disabled adults are *very* anxious/uncomfortable talking to us -- they are afraid they are going to ask the wrong question, or that they'll say something upsetting, and so they avoid topics. It's not so much that they don't think certain things in relation to us...
For example, when I was asked in late 2001 about my relationship by a doctor that had known me for 10 years, I burst into tears and told her my boyfriend had left because I was "holding him back". Another example would be when people ask me about my former educational plans, and I say they're on pause because of worsening disability issues. They're left stressing out over what to say, since it really IS hard to reply to something like that.
They were used to asking me those things because I was a "SuperCrip" until age 23 -- it was safe to ask what I was doing, because they could trust I'd give a positive answer. So now, people like my longtime friend from college have had to learn my new limits, and we both/all know it's a lot easier when they learn from what I tell them casually as part of conversation.
I'm not saying you're never right about it; I had teachers with the "you have no future" attitude, for sure... Just that you might be surprised how often the behavior or words of non-disabled people are based on fear and not knowing what to say or how to act.
Oh, I've seen this behavior many times although it does depend on who I am with. I can be with other disbled people and because I "look" AB all questions and comments by wait staff, sales clerks, etc. are addressed to me.
"What type of dressing would he like on his salad?"
"I don't know, ask him..."
There are people out there who "get it" but they often appear to be far outnumbered by those that can't see beyond the disability. Sadly, many of those I encounter who can't seem to see beyond the disability work in the agencies that are supposed to be there to provide assistance.
Turns out they aren't in the jobs because they think they can help. They are there like most bureaucrats because it's a job.
I can only offer my own perspective which is, once you have a clearly visable disablity, the stronger the visable nature of the nature of the disability the more YOU (or in this case ME) disappears into the background....forever.
Know another phrase I haven't been asked in months: "What are you doing this weekend?" - I mean, I'm dependant and in a wheelchair, how could I possibly have plans...right?