The most often asked question I get, as someone with a disability, who works with others who have disabilities, and who travels extensively to lecture and consult is probably fairly easy to guess. "Which country is more advanced in their service provision to people with disabilities?" I find that this is a very difficult question to answer for a simple reason:
It presupposes that people with disabilities are a citizen of any country.
As odd as that may sound, I think it an accurate statement. I do not see people as disabilities having 'rights and freedoms' in the same way as do other citizens. I do not see people with disabilities as having an 'expectation' of being part of the social contract that typical citizens have of one another - respect, fair play, or even simply, decency. I simply don't.
Consider the world of those with intellectual disabilities. Many live within systems created by governments to provide support for them. These agencies become worlds unto themselves. Suddenly rooms full of non-disabled people, acting without the bother of consultation with those with disabilities, sit in rooms and write policies. Polices that affect life, liberty and the pursuit of happiness. In many parts of the world, in agencies all over the world, people with disabilities have their civil liberties determined by people they never elected; by people, often, they've never met; by people who's opinion about their lives, their morals and their relationships count more than the congregate wishes of those in care.
The history of people with intellectual disabilities is replete with institutionalized, government approved, violence. Forced segregation. Forced sterilization. Forced subjugation. Polices were written which allowed their skin to be shocked with cattle prods, their confinement into little tiny 'time out booths', their family contact limited, restricted and even forbidden. Policies were written that disallowed loving relationships, dating and marriage outlawed, homosexuality soundly and horrifically punished. Ah, but that's passed, you might say.
Well, firstly, not everywhere. Well secondly, where this has passed into history, it passed into history without apology. The need for electric shock then is not challenged by the fact that there is no need for it now. But, then, people with disabilities are used to living without apology. But even if those horrid practices of the past are tucked away in time, they cannot be tucked away in living memory, the fact remains that the civil liberties of people with intellectual disabilities are determined, not by governments, but by people who people organizations. Give a person a pen, a piece of paper and power and then watch what happens.
So, when talking about people with intellectual disabilities I answer the question: "Where do they get it right?" By telling the truth. I have seen service done well, really well. But it's odd. It's an agency by agency by agency determination, not a country by country. One agency in one part of a province, or state, or shire, may provide extraordinary services. Another agency, located a mile away, may provide a crushing, controlling kind of care. A couple may be allowed to love here, but be separated there. A person may be able to challenge staff opinion here, but be punished there. A person may have the right to risk here but may be forbidden any attempt to recognize adulthood there.
For people with physical disabilities, this is true, but in a different way. Other people determine our access. Other people determine our ability to transport ourselves. Other people, sitting in rooms, determine even, oddly, if we have a disability they wish to recognize. I went to be assessed to see if I would be allowed to use the WheelTrans system here in Toronto. I had to place myself in the hands of a person only four days older than sperm, who looked me up and down and, in a disinterested fashion, made me present my disability to him. I feared giving wrong answers. Was there a right way to be disabled? I understand the need to determine eligibility - but does it have to be done with suspicion and humiliation as was the experience for me and with superiority and arrogance from the kid with the pencil?
People with disabilities are the ones who are always at the end of the finger of blame when it comes to public spending - and therefore end up at being at the end of the fist of both government and neighbourhood bullies. On my travels I meet people with physical disabilities who no longer feel free to use their own community. They no longer feel as if their citizenship is valid, their participation encouraged, or their presence a welcome aspect of diversity. Tell the truth, when people use the word 'diversity' they don't mean us. Because, I realize, that 'All doesn't mean All' ... at least hardly ever.
People with physical and intellectual disabilities are the ones that face public brutality with little in the way of concern. The idea of a hate crime against a person with a disability is almost laughable. A tiny little search of newspaper articles about violent crime against people with disabilities will find that it's on the rise. A tiny little search of media representation of people with disabilities will find that negative stereotypes are on the rise. A tiny little conversation with a person with a disability will tell you even more - we are fearful. Fearful because crimes against us are not seen as serious social issues. Fearful because victimization of those with disabilities continues unabated. Fearful because the media, and celebrities, and comedians - see us as wonderful targets for bigotry, for stereotype and for mockery. Fearful because we've always been other, seldom been simply another.
Fearful because our citizenship doesn't matter.
We are not Canadians.
We are not British.
We are not American.
We are not German.
We are not ... spin the globe, put down a finger.
The loss of citizenship, the loss of the right to participate in the great social contract is a frightening prospect. I believe that people fear disability, not because they might have to roll around a bit, but because they don't want to be lose their status, their standing and of course their citizenship. I believe that people with disabilities, the world over, can relate to feeling as we are meant to feel - unwelcome.
A long while ago, I wore I bright shirt. I seldom do - following the rule that fat people wear dark colours - and an elderly woman tapped me on the shoulder and said, 'You shouldn't wear yellow, because when you wear yellow, we can see you, and we don't want to.' I felt hurt and shamed by her remark.
But you know what, I just came back from a three week tour in the United Kingdom, where the cost of disability is a constant theme ... and I wore yellow two days out of three. 'See me,' I thought, 'damn it, see me.'
They may not want to see us. They may not want to include us. But we are here. We are staying. And though our governments, our carers and even our families may have lost sight of the fact that we are, and will always be equal citizens. I've not yet met a single person with a disability that has forgotten that ... and as long as we remember, we can fight, and as long as we can fight, we may one day win.
I think I need a yellow shirt. Thank you.
I think this article should be translated in every language on this planet and put out into every newspaper!!!
I look horrid in yellow-- like death warmed over. But I love fuchsia!
Seriously, though... I've often wondered why modern wheelchairs, these days, all have uniformly black upholstery (the frames are painted bright colors, true, but the frames are often restricted to the bottom half of the chair). Now, I'm wondering if it's part of this invisibility conspiracy.
i'm stunned that someone would actually say that to you. of course it makes me want to say: wear yellow every day!
Going slightly off topic but @CapriUni, I have black upholstery (and a kind of charcoal frame) because I can only afford one wheelchair, and I need it to be acceptable everywhere from a party to a job interview to a funeral.
Back to the topic... I know what you mean. I'm fortunate; I live in a district that allows me some support in my care package specifically for "social care" ie going out and about in my local community accessing shops, services and amenities. If I lived fifty miles up the road, the funding wouldn't be available. Every time I sit in the public park enjoying the sunshine, I get this strange sensation of gratitude that I am enabled to do such a thing, and anger at a system that regards something so simple as a frippery that not everyone is entitled to.
Here (where I'm in the DD service system) it's not even agency by agency. It's person by person, day by day, hour by hour, year by year, and that's all the difference between the best and the worst. And even when a practice is claimed to be in the past doesn't mean it is. And even when an agency claims to be beyond institutionalizing us doesn't mean it is either. Just because everyone lives in different places, nominally in our communities, doesn't mean the power structures, or even our separation from society, is that different than those behind locked doors. (And those behind locked doors isn't always the worst... because those that don't lock the doors learn to lock our brains instead.)
And I don't think I will ever in my lifetime know the safety that comes from knowing that anyone -- anyone at all no matter their relationship to me -- who kills me will ever be thought wrong to do it. It's always right to someone -- whether supposedly out of "mercy" to me, to my family, to caregivers (who for me aren't family and likely can't ever be), to society as a whole, or whoever. There will always be a justification for me to be dead and I have to go every fricking day knowing this and knowing that most people either don't know, refuse to know, don't care, or some combination. And so every time I land in the ER I have to hope they see treating me as worth it (have the lung damage to prove they haven't in the past), and every time i get a new caregiver I have to hope they're not one of those ones that would deliberately kill (has been attempted already, can't say it won't again). Or through negligence (I've lost count of the close calls). And given the way my particular body works I'm in a number of groups of disabled people at higher risk for this crap. I can't move to another country at present because of having no money for it, and immigration laws that restrict people based on disability and employability. And leaving the country won't do me any good because in all my research I've never found a safe country for people like me. (And if there were they probably wouldn't accept people seeking asylum because of disability prejudice -- that's pretty much unheard of.)
The scariest part? I know all this -- and know exactly how hated people like me are on so many levels (whether the hatred is disguised or not) -- and I'm used to it. I'm used to accepting a potentially greatly reduced lifespan not because of my body (which may be a factor) but because where I live people like me die every day from either lack of medical care or lack of any income at all (which are just as bad as more overt hate crimes). And because with economic and environmental catastrophe I expect this to become more the norm not less. Mind you I don't accept that it is okay. Ever. Will fight it with everything in me. But accept that it may happen? Yes, I've made what peace I can with that, and not even on purpose, it just seemed more and more likely. There are just too many subgroupings within disabled people that I fit, and too much prejudice in the world interacting with those subgroupings and other aspects of my life, that I'll be amazed if I survive. This isn't giving up, not even close, it's just awareness of the odds and how narrowly I've already beat the odds how many times already, often just by a hair, one tiny variable changed and I wouldn't be here. And the older I get the closer together these near misses happen. I'm only 31.
A co-worker once told me about her sister, who is affected by disability, was given a lottery ticket. She whispered to her sister "If I win you have to go get the money because if ODSP knows, they'll stop sending my cheque". Her sister told her that if she wins the lottery, she won't need to worry about ODSP. I think it's sad that people affected by disability are SO under the thumb of the almighty cheque issuer that they can't see past it. I always applaud (sometimes well after the event) when a person affected by disability doesn't quietly do what staff/agencies/family/insert entity here tell them they must! I'm always in awe when someone is able to, in any way they can, say "NO, that's not what I want for my life!". I look horrible in yellow, but am tempted to go out and buy a yellow shirt.
We really should have a disabled yellow shirt day. My son has sma type 2. I sent him to school today in a yellow shirt.
I don't understand the need to be assessed for wheeltrans. I don't understand wheeltrans. I don't know why there needs to be a separate transit system for disabled people. Public transit should be accessible to all citizens.....oh, wait, that was your point.
Very powerful post full of brutal truths. And, as is usual here, I learn even more from the comments.
A friend of mine, who also has a child with Down syndrome, just this past week had to sit down for three hours with some government agency to "re-prove" that her 15 year old daughter still has a disability and that her father is still dead to continue receiving government benefits. Seriously? No one has invented a machine to change our DNA yet, and no mere mortal has come back from the dead recently.
Even with all the changes we've seen in all civil rights areas, it's obvious that the hearts of minds of people haven't changed enough - nowhere near enough.
I believe that people fear disability...because they don't want to be lose their status, their standing and of course their citizenship.
I've never heard this expressed so perfectly before. Because it seems that when you're disabled, unless you have someone abled advocating for you, you don't really...exist.
Amazing post, Dave.
Wonderful post, sad and chilling.
An amazing and powerful post, Dave. Thank you.
Great blog and comments ( as always :> ). I can soooo relate to everyone.
Amanda, my son and I really understand your comments with regards to not assuming that practices have changed because there are CLAIMS that the practices have changed.
I've been arguing this issue for over ten years now. Some issues are not major; but, some do involve child abuse. And, even in light of documented facts/witnesses, those who make the decisions, and have the responsibility of due care, have NOT looked at the situation or impact it has made on my son ... they either:
1. realize the wrong-doing; but, never acknowledge it, nor apologize (this adds to my son's hurt);
2. claim they are providing the appropriate supports (even though they are not). -- as the saying goes "actions speak louder than words";
3. make accusations that I'm neglecting my son (to transfer the attention off of them and my attention ends up being wasted, defending myself against false allegations);
4. "string us along" .... making us "think" that certain supports and procedures are being put into place, or are in place ... and over and over, we believe them, and trust them, and we find out, after being hurt again, that they were misleading us or outright lying to us.
I'm not sure what it's like in other areas; but, in our area, the trust explicitely given to agencies (and their respective personnel) is extended without any hesitation; but, if the family is fed up with the poor level of supports, as there is no level of expectation nor accountability ... .literally, for anything (very very sad to say), that even when the family is so desperate, and wants to find support independently ... is the SAME explicit trust extended to the family? .... is the same funding extended to the family? I can confirm that around here, the answer is NO. And, even when I have questioned the government reprepresentatives on this, they deny much of the funding does not exist for the agencies, so it cannot be made available to families; but, I already have documentation, and expense claims by the agencies' employees confirming what they are telling me is not true. And, what do they say to that? ... absolutely nothing.
And, WHO are they supposed to be helping? My son, and I. But, ultimately, they're discriminsting against us, because we refuse to send my son with a support worker, who is not trained, crosses privacy lines, makes problems is areas where no problems exist, and are providing "skilled and experienced and caring" personnel, under the pretense that what they are saying is being provided, IS being provided.
Anyways, like most of you, I'll keep fighting for my son's and my basic rights, if it's the last thing I do on this earth. I know it's tiring to keep fighting, and can be somewhat discouraging at times; but, I'm going to keep going forward, with the faith and hope that things will change.
Elizabeth & Andrew
Impressive, moving post.
But it's interesting that you seem to believe someone is bad at their job or not worthy of respect or the barest minimum of courtesy simply because they look young. Or, as you'd put it "4 days older than a sperm."
They may well have not been good at their job, but their age would have no more to do with that than their gender, sexuality or ethnicity.
Excellent post Dave. This is the second item I have read/heard this week that has given me food for thought. Have you heard of the class action suit against the provincial government here in Ontario against the neglect and abuse at Huronia, Smith Falls and Rideau Regional. The two women and their friends who started it were inspired by the apology First Nations got for the government's compliance with the residential schools. Getting an apology for the lack of care,nurturing and the systemic abuse of people with intellectual disabilities in places such as this might be a step in the right direction. CBQ had a doccumaentary on this on Sunday morning and you can hear the interview of the two women at this site. http://www.cbc.ca/thesundayedition
Their courage to mount this suit and relive the horrors they lived was awe inspiring. It is too bad that this has been such a well kept secret. Another lack of recognition of person's rights to due process.
Thank you for your post this morning and hope you listen to these two remarkable women and their fight
All of this Dave is what I have been thinking and feeling and realising over the last few years. I have slowly been lessening my public crip activism over that time. I am not out there so much busily advising how we must have this or that or be included in this or that way, and I have noticed more how things are actually going BACKWARDS. Or perhaps it is that the realisations have shown me how it REALLY is.
When fighting for rights I have been focused more on what should and must be, of course. An assertive positive stance. Lately I have been feeling negative and sadder and sadder about - about what? I am not sure anymore. Perhaps just that I truly understand that I am an Outsider and always will be....
Some really deep, intense posting this week. Thank you, as always, for making me think!
The comment about the yellow shirt actually made me gasp out loud when I read it. I should be past being shocked by the terrible things people will say, and yet...
I wore yellow today, and thought "see me!" all day long. I've always liked wearing yellow, and I think I finally know why. :)
A thought: I think it is practical to have wheelchair seats made in black fabric because nearly any other color will show every little mark and look dirty.
Also, it is my opinion that people don't get so far as thinking they will no longer be "citizens" if they become disabled; it is more the idea of being so radically different from how they are at the moment (and so different from the vast majority of society), and of becoming "powerless" that is so terrifying. My two cents.
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