Tuesday, May 01, 2007

Blogging against Disablism: those lazy, deceiving disabled..why won't they die?

A group that are lazy, deceivers, liars, take the easy way, always have their hand out, always feel the rules don’t apply to them, unwilling to take responsibility, unwilling to try. Blogging Against Disablism Day, May 1st 2007No, not just a historic view of the Welsh (“Welshed on a deal”), or Gypsies (“Got gypped”) or Jews, I am talking about the Western attitude toward people with disabilities; in particularly those with sudden or emerging disabilities.

Sadly, in one respect, the US leads Canada by decades. While the US has had disability protection in some regards since basic civil rights, it was the 1990 American with Disabilities act which ensured some level of equal access (theoretically). Canada has had a parliamentary committee on a federal disability act since 1981, but still does not have a federal act in place, regardless of Prime Minister Harper’s assurance at election two yeas ago that he would pass one (nor has it been able to be introduced as a private member bill). This means that any access, discrimination or otherwise on a federal or provincial level is essentially up to people’s “good will.” Indeed British Columbia (my province) not only cut disability employment and benefits offices as cost cutting but introduced a “new” disability bill in 2002 without consultation of people with disabilities. This bill reflected the growing attitude of government that disabled were the fat in the annual budget; that with periodic reviews these people could be “put to work” or determined not disabled (One store manager in Victoria told me that she thought autistic people with IQ's in the 70's should be forced to work "somewhere, sweeping or something, put them to work"); that essentially, if they really tried, people with disabilities didn’t need assistance, just a stronger motivation to try harder. This is why the new BC act narrows what is defined as a disability, refuses to accept a higher cost of living for those with disabilities but also will not create a “permanent disability” designation. And like many other countries, those on assistance must undergo “evaluation checks” as determined by the government (that’s the lingo for: “prove you are disabled”). It is also the reason that each organization and body requires its own application for disability: an application to ride transit with a wheelchair (doctor cost to fill out: $15), an application for a parking pass (doctor cost: $15-50), federal tax exemption (doctor cost $50-$150), BC designation (travel expenses to their doctors, and cost for filling out forms $50-?), and since I live on an island, designation by BC ferries for disabled (application and interview: One person I talked to was challenged to “prove” that it was their wheelchair, in order to get a $5 discount on a ferry ticket).

I know two of the people whose government job it is in BC to find the “slackers” and cut them from disability (regardless that the only way to qualify for disability payments is to have less that $3000 in assets to begin with). I have not applied as since my partner makes money, so I do not qualify. However earlier in life, during a period of temporary disability in the UK, even though I was designated as “disabled” I was awarded a monthly supplement assessed income of $0 (but I was exempt from my share of paying garbage tax). After three months I was ordered by letter to come “with two forms of picture ID” to prove to an independent doctor that I was disabled. The entire experience was one in which they dictated that some/many designated disabled people are cheats and liars and that I needed to prove I wasn’t one of them (and prove that I hadn’t sent in a different disabled person to trick them into thinking it was me). The doctor told me, “You have 10 minutes.” I asked if he had my medical records. He opened the folder. It was empty. “You asked my GP for them didn’t you?” I asked.

“You have nine minutes.” He responded.

“I have nine minutes to “prove” I am disabled because you don’t believe I am?”

“Correct”

“Well,” I said, “First I would like you to prove that you are a licensed GP who is qualified to evaluate me. I brought two pieces of Picture ID to verify my identity, all I ask is your Medical Certificate.”

He recoiled as if I had struck him. And was speechless for another minute (now down to 8 minutes). “I don’t have to prove anything to you.”

“Unless you can verify that you actually are a doctor, I will not disclose confidential medical information with you simply for you to decide if I am a liar.” I responded.

“I will be writing the report on you regardless” he threatened, “If you do not give me the information then I will be forced to report on your attitude and you may find your monthly supplement decreased.”

So, now I was not being evaluated on my physical need, but on my “attitude”? I was being threatened for not having the right attitude? Thankfully, half of $0 is still $0, though I clearly remember the humiliation of attending my award ceremony for a Ph.D. in one month and being summoned to a room to prove to some guy who said he was a doctor that I wasn’t a liar and cheat the next. What if my ability to feed or transport myself was on the line instead, or my ability to breath, to get medical supplies?

My experience of Christian, western and particularly west coast values is that society has decided to interact with me in a way which assumes my control, my desire and my ability to attain, if not a movement out of disability into a visually acceptable form whether Able Bodied (AB) or not, at least a movement toward “getting better” or independent, regardless of the actual medical situation. Basically, if I want to "fit in", be spoken to with some respect, I need to act as if I am "trying to get better" even if I know the reality to be the opposite.

In practical experience I have found that it is between a month and two months where people will “tolerate” a suddenly or progressively disabled condition. In many ways similar to those who have been sexually abused or dealing with grief of a suicide; after that, the consensus seems to be that the person should “buck up” or return to normal, or at least cease talking about the disability/Abuse/etc. At some point, people run out of “I’ll be rooting for you.”, or “I know things will get better” and they simply disappear. I have seen it with around 90% of the people I knew before entering the wheelchair (some athletic friends had an open, “See you once you get better” attitude), and I have seen in enacted by others on friends with disabilities. A woman with MS used to meet a running group when she was able to jog, but after several weeks of intermittent coming, many in the group simply stopped notifying her of jogging times. This was passed off as for her benefit, since, after all, she couldn’t consistently come. Though how being isolated from social contact and not even given the choice of participating was a greater benefit to those who no could not longer pretend she was “normal” than her, left in growing isolation. The same occured when I temped in a law office as the partners discussed how to best terminate a woman with MS who could no longer type effectively; always finished with "She'll be more comfortable at home anyways."

But then, growing up, that was always the picture given of people with illnesses, that once they were no longer AB, and once it became clear they were not going to recover, they made an announcement and then simply disappeared. The idea that they might want some human interaction, or to start a different life from before, even if they had limited time left seemed (and to many still seems) odd and often percieved as selfish. One of the things that the 80’s and 90’s taught us is that people with AIDS USED to be famous but once they have it, except for fundraising, their main job is dying, preferably out of sight. Lou Gehrig, revered for his baseball work ethic and stoic face in adversity, for most people there is simply a reverence silence for the time between his stepping down from the Yankees and his death. Indeed in the Gary Cooper film of his “heroic life” the movie ENDS once he has admitted his illness is non recoverable and he retires from the Yankees (the one film I found reflecting my life, about an female athlete who suffered a sudden disability so reflected public tastes it, like Pride of the Yankees won the Oscar: it was Million Dollar Baby and she killed herself rather than live disabled.). That Lou Gehrig had to get up another 600+ mornings, or that he served for over a year on the New York City Parole Board is ignored, purposefully so. Better, thought the Greeks and Romans, and the Western world of today to die, or be remembered in ones prime. On a recent trip, meeting dozens of people, I was never asked what I do. I was however repeated asked, “What did I do (before being in the chair)?”

My experience with Christians during the last several months seems to best sum up this particular western idea that oppresses newly disabled or people with continuing denegation into a choice of having two lives; one in which you are optimistic and happy to others while the bulk of your struggles become a secret life; or share all aspects of your life and face rejection. When I first got ill, there were dozens if not over a hundred of Christians in my online or real life experiences who told me they were “praying for me”; which was fine because I was in denial anyway. I WAS going to get better. However as time went on, and I started to accept as the illness took over more and more of my life, it became clear that this was not going to be a “quick fix.” With so many friends and associates unable to deal with me in a wheelchair (some literally physically run away when they see me), I asked people to stop “praying” and start sending me emails, or cards or something, I needed support. I was no longer convinced anymore that God was making a mistake, or rather I needed to focus and have encouragement to get up, to get the medical test done, to try and create a life WHERE I WAS. And the constant statements that I was “going to get better” that “they were praying that I recover” while actually ignoring my growing isolation and depression only reinforced that there was only one acceptable outcome (one which I couldn’t control). After I asked for emails instead of prayers the response was very mixed, many quit communicating, even that they would pray, a few did contact me, and some became very angry. They told me in no uncertain terms that they WOULD pray for me whether I wanted them to or not, whether I had accepted where I was or not (and no, they didn’t reach out, email me, send a personal message or otherwise). The communications one to one I had in most cases refused to move to where I WAS and stuck entirely to “what was I doing to get better” – was I seeing a new doctor, was there a new test, what could I be doing to make myself get better. These invariable ended with the assurance that I would be recover…and I’d see that by next week (or next month, or soon). For me to talk and joke normally, I was told constantly I was “inspirational”, “Brave”, “So strong” (on a recent trip, I did my usual series of strange and sarcastic jokes and was told by about 6 people in the course of an hour how “Cheerful” I was. “Cheerful?” I asked Linda as no one had ever used that word to describe me before, more like a person who takes morbid delight. “Cheerful…..for someone in a wheelchair” she explained). Conversations about life which was not similar to pre-illness days were ignored or indeed had bizarre responses. A post that I could not longer take the pain and was contemplating suicide; or that I did not have the strength to continue got comments like, "Your optimism is always an inspiration", "You always make me laugh", "Your belief and strength inspire me".

As a pain ridden degenerating Christian, there are certain rules I am suppose to abide by (faith that I will get better, or that I will die and be AB in the afterlife, that I have faith in God.....to get me better, and that I am inspirational) – deviate from these, particularly the one in which I have faith that God doesn't want me in a wheelchair, that I accept I will likely be wheelchair bound and sick for quite some time and people get angry. Right now 75%+ of the Christians I know don’t communicate with me, most are still in the “I’m praying for you” state, which is about as kind right now as me telling them every time I see them, “I’ll be praying for you to get good looking” – They are clearly telling me that struggling along as I am just ISN’T enough. And when I start posting pictures of myself doing wheelies and people just go a dead silence. I’m supposed to be using my energy to get better, to get a job, to go back to being “normal”, not delighting in the mastery of my mobility aid! Currently on Christian Forum (the largest of the online Christian communities, with about 2500 people on at any one time I have, so far, found a total of one wheelchair user….me; my other online Christian forum has two – I am pretty sure that 5% of the population can’t disappear, and I am pretty sure the Christians don’t kill them…so where did they go?)

Where I live, admittedly a country whose literature is marked by having the weak eaten or frozen or killed in other ways by nature, there seems to be those who manage somehow to return to an independent life (usually SCI: spinal cord injury), those who are put into care and those like me who are in some hazy limbo, reliant on someone to take care of us. There is an idea and debate that like gays, people with disabilities don’t need legal protection because if we do our jobs good enough and work hard enough, people won’t discriminate against us. Hmmmmm, I can’t get cars to stop for me at a crosswalk and have to wait for an AB to come to the corner so cars will stop (Yesterday at as I started to enter the cross walk, the car coming ACCELERATED toward me, swerving past me to continue on through), but I am supposed to rely on people who won’t even talk to me to serve me in a store to not hold prejudice to give me an equal chance to outperform them? Who are we kidding. To go down to the video store, rent a film and return home now requires the level of effort and exhaustion that I used to call “Training for the Women's Epee Nationals.”

Yesterday, I went, for the first time in 120 days, on the same route in my wheelchair as the last jog I took on my legs. I wanted to prove something to myself (what exactly I don't know). Yet I couldn’t sleep until 3 AM last night because of the pain (and I was on a lot of pills) and was delirious and hallucinating for the next three hours because of the pain levels. All that for 70 minutes of wheeling a jogging route. Is that “inspirational”, is that “courageous”, Is that how I am going to outperform someone by pulling that off in an eight hour job? Or is that called being STUPID? At what point do I realize that a couple hours of pretending I have the strength and values of an AB on one day but end up in bed for the next two is a bad trade? And at what point will people stop trying to expect that of me?

I am not dead, I am not getting better and if I can learn to live with it, so can you. If you want to know what the doctors think, one specialist and one GP think a major portion of this will be lifelong. When I told someone that I got referred to a book of “alternative” medicine and how I could use my own healing powers. I am not lazy, I am working harder than ever before to find a balance of life; but it won’t be the same one as before. Like coming out of the closet sexually, only this time, it wasn’t me lying to you, it is just my body changing the rules of the game. But I am still here; stop trying to shove me back in the closet or behind some veil with the message that you will deal with me when I am better, trying harder to get better or dead. I still wake up (not always in the morning), I still make plans, I still am worth knowing, and I still can contribute to society; but not if I have to compete against every AB. That’s just the way it is. If the only thing society wants is the “best” person; I’m not it (I can't even reach the top shelf anymore). I don’t have a solution to that; I only know that I am not going away and I am not going to pretend my life right now is different than it is; I hope people challenge themselves to deal with that, because I never noticed people learning much about themselves or others while running away.

10 comments:

Ahistoricality said...

“I’ll be praying for you to get good looking”

That made me laugh, thanks.

It's not just Christians, I'm afraid. When we were in Japan my blind spouse ran into more than one Reiki or Sokagakkai practitioner who thought they could "channel the light" for her. And the traditional Jewish attitude towards disability, I'm sorry to say, isn't all that good, either (though Jewish social services for the disabled are pretty good, at least in heavily Jewish areas).

Lady Bracknell said...

A very powerful post. I recognise a lot of your experiences from my own first few years of being disabled.

Don't let the bar stewards grind you down.

KateJ said...

Don't know how Canadian disability rights law compares with UK's, and of course the law is one thing but real life - and people's attitudes are quite another.
Bert Massie has been a big champion for disability rights over here. However, his Disability Rights Commission is shortly to be subsumed into an Equalities Commission or some such, which may distract public attention even further from disabled people's rights... many assume the work is all done, wheelchair ramps everywhere etc.
I must say, though, I saw far more people in wheelchairs in Canada than here, indicating that people here find it even harder to get out, work, use public transport etc.

Ruth said...

This post really sums up a lot of the experiences I've had as well. Very painful when people do that "all or nothing" thinking vis a vis disability - either you get better or just - well - disappear..and "getting better" is equated with judgment at that. I had one social group that met three times a week which I couldn't pull off and would go once a week or so - the amount of pressure put on me to "meet the norm" was ridiculous and then I , like the jogger, wound up "not being told the times". Harrumph! Their loss...

kathz said...

A really good post which I've only just got round to reading. I've heard employers in various circumstances use the line that sacking people is for their own good. There really is a lot of crappy illogical thinking around.

The encounter with the doctor reminded me of James Kelman's How Late It Was, How Late in which Sammy, who has gone blind, goes to see a doctor who refuses to diagnose "sightloss" - a funny and bitter scene.

Actually what you're doing sounds a lot harder than fencing epee (particularly as it involves cahnging the world and making people think).

Sober @ Sundown said...

As always, you have done a great job of describing your experience. You can really open my eyes. Thank you.

I guess I fall into the category of wanting you to get better. I keep hoping the doctors will figure out what is going on with your body, and find a way to fix it so you can do the things you enjoy the most. I am not ready to give up that hope, but I can accept where you are at today. I just don't like it.

Elizabeth McClung said...

Thank you everyone who commented and/or read - I wrote this during three days of testing/recovery so haven't been around as much as I would like

Ahistoricality - the greatest frustration is the patronization of the AB (Christians) - that by being disabled, I might be "given" communication but being treated as an equal was no longer possible (as I was no longer "equal" - ala the feeling of Job syndrome)

Lady Bracknell - My partner says I shouldn't avoid blogging as this is a social record for when I forget the freshness of these feelings - thanks!

KateJ: Linda and I discussed this and I questioned when I moved over to the UK "Where are the people in wheelchairs?" - but having dealt with the UK system, I think if you can get "in system" you can survive at home on permanant disability (which is paid regardless of assets or income), while in Canada, if you can't become independant, you have to go into care - thus more people are out and about simply becuase if they don't, they lose the right to be an independant person entirely.

Ruth: Yes - Have you had the same reluctance I have met when trying to join new groups also?

Kathz: Actually many people on disability in the UK lived a vicarious fantasy when they heard I treated the doctor exactly they same as they were treated, assuming he was a liar, demanding ID - that was only possible becuase I literally had nothing to lose.

Sober: I tend to try and keep my frustration out of the blog but with the topic on disabilism and several days to work on it, I narrowed it down to this exclusion (even in media who show only "plucky survivor stories" ala Reader's digest or patronizing stories like that told at Lady Bracknell's post. I don't like where I am today either, and I hope that one day a test will go "bing!" and things will improve - but I can't get up each day by saying, "Today I will get better" I recognize that is out of my control - it is more like, "What can I do today that won't get me yelled at by Linda?"

GayProf said...

I am shocked to find out that Canada is behind the U.S. Though I don't often think he was a good president (because he wasn't), at least Bush, Sr. did sign the ADA. Somehow, I doubt his son would have been as civic minded.

So much of western society bases one's value on their potential as a wage earner/laborer. Those who don't for various reasons (age, medical conditions, etc.) are considered expendable.

belledame222 said...

Um, yay! We're...actually more progressive on...something!

whee.

jesus. another "I'm a humanitarian, I just really can't stand people" moment, I guess.

and that doctor--jesus. besides everything else: do doctors take special classes in "how to be a flaming asshole" as part of their M.D.'s? I would've loved to have seen the expression on his face when you asked for his creds, though. perfect. "sput sput, sput"

Katryna said...

Is that “inspirational”, is that “courageous”, Is that how I am going to outperform someone by pulling that off in an eight hour job? Or is that called being STUPID? At what point do I realize that a couple hours of pretending I have the strength and values of an AB on one day but end up in bed for the next two is a bad trade? And at what point will people stop trying to expect that of me?

This made me cry. It's so true. I have Chronic Fatigue Immune Dysfunction Syndrome . . . I went from being on the Dean's List one semester to being a college dropout the next. I have accepted that I will likely never be "normal" again or go back to the kind of energy/ability I had before I got sick. But all I hear from my family and friends is "When are you going back to school? Have you gotten a job yet? Are you going to get a job? You should work somewhere quiet. I bet you'd do well if you'd just give it a shot!"

It's so degrading to have to explain to them over and over again that I don't know that I'm ever going to get well. In fact I think I'm probably not ever going to get well. It's more healthy for me at this point to just come out and say that I have an incurable illness and that things aren't going to get better. And every time I tell this to people they either get angry (because I'm not trying hard enough) or they act like they're a puppy that I've just kicked.

I'm tired of having my competency questioned over and over again through these stupid "are you sure" type questions. Yes, I'm sure, thanks.

Sorry to hear about the abysmal state of Canadian disability protection. I've had tons of difficulties with dealing with doctors myself, and that's with help from the law. I can't imagine having to see a doctor who could legally discriminate like that. Seriously bad, yo.