Yesterday I told a story about some unseen forces directing the collection of data, first in an institutional setting and then in a community setting, in order to statistically prove that freedom is better than captivity for people with disabilities. I made a claim that this experience was unique to those with intellectual disabilities.
That's what I said.
What I didn't say was that the kind of social expulsion that happened to people with disability doesn't happen to others. I didn't say that people with disabilities are the ONLY minority in which there is a need to prove worthiness to exist in the public sphere. I didn't say that what happens to people with disabilities is worse than what happens to anyone else. I didn't say those things.
I also said that people with disabilities had to go to the supreme court in order to have involvement in medical decisions made about their bodies. I used the case of Eve as an example. There are so many examples. The castration of men with Down Syndrome and the marketing of their testicles for medical research. The existences of policies in agencies, today, that forbid marriage, forbid dating, forbid sexual expression and the use of drive reducing medications on thousands of men with disabilities. I believe that the Ashley Treatment is unique to the experience of disability - and a frightening display of the use of medical power on the bodies of women with disabilities.
What I didn't say was that people with disabilities are the ONLY minority to experience the scalpel as a weapon of war. I didn't suggest that other victims of prejudice don't experience inequitable medical care and neglect when it comes to health care and other issues vital to life.
Yet many people took issue with what I was saying. "Yeah, but what about, what about, what about ..." It was as if in asserting that people with intellectual disabilities had and have a unique history I was attacking the existence of and experiences of others who face similar, though different, aspects of prejudice and violence.
I notice the same kind of thing when I talk about my experiences as a gay man. I am mostly, but not always, met with a reasonable degree of understanding, and occasionally even, shared rage. I rarely have people say, 'you can't talk your unique experiences as a gay man because others have it too and you are leaving them out.' But when I speak about my experiences as a disabled person, I am often challenged about these experiences. Some claim that they are neither are real nor valid. That they don't equate to the prejudice experienced by others in real, legitimate, minority groups. I think this is evidenced by the fact that prejudicial treatment of other minorities has made it into language. Sexism, racism, homophobia are words and concepts that have come into common usage. Virtually no one, outside the disability community, in my experience uses the terms 'ableism' or 'disphobia.' I've never heard either word used on a news broadcast or in commentary on crimes against people with disabilities.
I realize that alot of this is about access to public space with the same rights and freedoms of others. I get that. I know that, for example, when I go out, space will be given to me grudgingly and often with hostility. I am not perceived to have the same right to space as anyone else. But I also believe that there needs to be a 'right to space' within the discussions of the complexity of prejudice and the unique ways, we all experience lives in our bodies and in our neighbourhoods and in the broader community.
People with intellectual disabilities, like every other minority, have unique experiences that result in important stories to tell. It is in the telling of those stories - and in the listener having the ability to hear those stories for what they are - and that includes understanding that they are not a challenge to the existence of other stories from other people. What these stories do is give an understanding of the length and breadth of prejudice, they give insight into the commonality of the experience of 'outcast' even when the experience isn't shared.
A man with an intellectual disability and a mental illness was shot by the police on his way to a convenience store. Some of the facts about this case mirror what happened to Trayvon Martin. It would have been outrageous and insensitive to begin shouting 'But that happens to other people to, what happened to Trayvon is not so special, there are lots of people who experience violence as a result of who they are and how they carry themselves.' What happened to Trayvon is unique to the experience of racism - the combined factors, far, far, to complex to understand, would disintegrate, without an understanding of the role that racism played in his shooting. In fact, any protests that 'he wasn't unique' ... 'it happens to others too' ... would result in taking the intense scrutiny off what actually happened. And scrutiny is exactly what's needed.
I believe that black women and white women experience different sets of prejudices. Maybe I'm wrong, maybe all I've read is wrong. I believe the concept of 'intersectionality' is one that gets us to look at how being gay and being disabled (for example) intersect and the experience of the layering of ableism and homophobia. They are experienced as different things, when experienced together it can be overwhelming.
To suggest it's all the same is to suggest that the solution is a ten minute class on diversity that consists of a power point presentation saying 'be nice.' The class would take ten minutes, because, of course, the presenter would have to fiddle with the projector for nine minutes. Classes on diversity get participants to look at the kinds of ways that prejudice shows itself - the kinds of attitudes that people carry - the depth of prejudice - even in the words we use.
I believe we have a responsibility to tell our stories, our unique experiences.
I do not believe that telling those stories diminishes the importance of other stories.
I believe that recognizing that prejudice is prejudice is prejudice is a healthy way to view the unity of the civil rights movement.
I do not believe that that recognition requires a silencing of stories, I think it requires an explosion of them.
In the end I want access to public space, but I also want access to space at the table of disenfranchisement. Not only that, I want access to time to speak.
The other day I was telling a woman about an experience of lack of access, she said, and I'm quoting, "That's nothing, let me tell you what happened to me ..."
I don't want our history lost because we are afraid to tell it, afraid to delineate the unique journey of the disabled community because when we do we'll get shut down and lectured about how, 'wait a minute' your history isn't worthy in the telling'.
20 comments:
I was so glad for intersectionality posts. Wouldn't have complained except for the repeated phrase "Why would people with disabilities be the only minority to"...
Because you kept saying "only" it seemed to imply this wasn't happening to the others anymore... Maybe I misunderstood or took it too literally or something.
I think people were reacting to these two sentences:
"Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity? . . Why would people with disabilities be the only minority to have to go to court in order to prevent surgical procedures being performed on them against their clearly expressed wishes?"
Honestly, I had the same reaction to them, though I didn't post in the comments. Without these two sentences, I don't think you would have gotten the "What about African Americans / women / etc..." response in the comments.
The experience of disabled persons in these areas is absolutely unique, and what is happening to other groups doesn't make it any less important. But when people make those "we're the only group this happens to!" statements, it makes other people feel marginalized.
thanks for the comments n and CL ... I'm thinking though that there are somethings that are experienced uniquely by gay people and by people of colour and by women ... as well as by people with disabilities. It's it OK to speak of the unspeakable experiences, claim them, and make them part of our oral history?
I am not being argumentative, or defensive, I'm really trying to understand here.
As a white woman, I started fighting institutional prejudice just because I am female. As a lesbian, I fight institutional prejudice because I am a lesbian. I have been fighting these battles for 50 years. Lately, I have been fighting institutional prejudice because I am disabled. Dave, you are doing a fantastic job putting into words where we are and what we are doing and what we insist on. Making people look at things the way they are instead of how they have always been. Don't ever stop. We have been fighting for 50 years and oh so far still to go.
I am told constantly that there is no such thing as a "disability community" and that we don't suffer from discrimination in the same way as others do. I am sometimes even ridiculed for the idea that people with disabilities have a history and have something to add to the diversity discussion.
Agree on all points. But the difference, at least in my experience, is that those with intellectual disabilities are the LEAST able to express or advocate for themselves. This does not in any way minimize or marginalize other groups who experience discrimination. It's not a contest to see who is most downtrodden! Without a family to advocate for her I'm not sure where my daughter would be.
On a lighter note, when Miss 17 (has down syndrome) bickers with siblings Mr 15 and Ms 8 I sometimes have to remind them that it's not a level playing field - they can't use a war of words with Miss 17 because she can't compete. But she is still the oldest and birth order seems to prevail in many instances! Go figure.
From my experience (as someone with a congenital disabling condition), I've come to the conclusion that the discrimination disabled folk face is psychologically and socially difficult in two unique ways:
1) More often then not, we're minorities within our own families, so we often experience oppression from those who should be protecting us from it (the stories of Eve and Jenny both illustrate this).
2) And, unlike gay and transgender people, who are also often isolated within their families (and therefore, are subject to cruelty and injustice, as well), very few people with disabilities are able to "pass" as either able-bodied or neurotypical for the sake of their own safety.
Even if a disabled kid is lucky, like I was, and wins the "supportive parents" lottery, being alone in your family means sometimes going without the emotional and practical support you need. My mother was fantastic with helping me deal with sexism, because she'd had experience with that herself, and had figured out ways to get through it. But if I came home from school complaining about how the newly-waxed hallways made it hard to get to class on my crutches (for example), she was at a loss.
And, while this wasn't always the case (and was, itself, the result of hard-won battles for social justice), it's now recognized that children in racial, ethnic, and religious minorities need some contact with adult role models from their own minority to help them grow and learn. I've yet to see that same recognition for children with disabilities.
Well said Dave. I didn't think it needed to be said, but apparently it did for some people. I understood you perfectly yesterday. It's a shame that others don't get it and they think they are being "inclusive" or "politically correct" to include others into a discussion when doing so diminishes the importance of the specific discussion. Every one of us can fit into many different groups or situations creating a large Venn diagram where we all seem to overlap somehow, but that doesn't make us all equal in our experiences. Sharing an experience as an individual, or even a small group of individuals should be respected and recognized as such, INDIVIDUAL. We are often taught to think of others who have things "worse than us" so that we feel better about our situation and although world consciousness is important, that practice diminishes our individual feelings, which are real and important, even if our "problems" aren't near as bad as others; the same thing has been done with many of your stories and experiences and while others are entiltled to their opinions, I don't have to like it. We all group people as a broader way to discuss certain issues and there are ways to do so that is appropriate to the topics at hand (as you did yesterday and as you and I do in our lines of work; carefully and for the purpose of education and support,) but we have a saying here at my company...'Once you've met one person with a disability, you've met ONE person with a disability.' Keep it up Dave, I love following your blog everyday, and now your face book. I read the newsletter, I've read many books, and I've had the opportunity of a training here in California as well. I hope to experience much more!
CL expressed it really well for me in the comments above. These are the sentences with which I took issue, and they loomed rather large for me, because they were a summation of everything that had come before them in each section:
"1. Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity? Why wouldn't that just be assumed like it's assumed for everyone else."
It is not assumed for everyone else. Not by a long shot. The first sentence -- yes, I can't think of another group that has to have a study done to prove that they should live in the community. However, being able to live in the community is NOT assumed for everyone else. If it were, Trayvon Martin and countless other young black men would still be alive.
"2. Why would people with disabilities be the only minority to have to go to court in order to prevent surgical procedures being performed on them against their clearly expressed wishes? Why wouldn't it just be assumed that a person's choice, a person's voice, be a determining factor in what is done with their bodies?"
The parents of nondisabled but terminally ill minors sometimes have to go to court, on their children's behalf, in order to stop excruciating treatments with little hope of effectiveness. An adult would simply be able to say stop and have their wishes respected. But a minor cannot, and parents can have charges brought against them for refusing treatment. Sometimes these charges are deserved; parents who want to use prayer instead of a simple medical procedure should be brought to court. But sometimes, a minor wants to stop the medical treatments because they've had enough but do not have legal standing. If the parents stop the treatments, they can be arrested. Often, the doctors will simply listen, but sometimes, they don't, with horrendous consequences.
Your second sentence applies to so many groups of people. So many people's voices mean nothing when it comes to what is done to their bodies.
I read very carefully, and I take care to respond to what a writer says, not to what a writer doesn't say. I know how provoking it is when people do that in response to my own writing. I have no problem with talking about the unique oppressions that disabled people go through. And if every time that I wrote something I felt the need to say that the oppression is not unique -- that people of color and LGBT/Jewish/Muslim/fat/genderqueer/other oppressed people go through it too -- my writing would lose focus. So I understand why you need to keep the focus on people with disabilities.
But focusing on one group doesn't mean overstating the uniqueness of that group's experience. Shared experience is a way to find solidarity with other groups so that we're not all fighting the same fight separately. When the issues aren't unique to our community and someone says they are, then I have to take issue, and it has nothing to do with being PC (a term I abhor), and everything to do with accuracy. I am always bringing up disability in other minority contexts when people say "We're the only group that goes through this," because I think that people who are victimized on the basis of how their bodies look or work ought to be getting together and fighting on one another's behalf.
I read yesterday's entry and also had a reaction to the " Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity? Why wouldn't that just be assumed like it's assumed for everyone else." As Rachel says, the issue is accuracy. In addition, I would also deconstruct the "like it's assumed for everyone else". Who comprises the group "everyone else"? I'm guessing many experiences may be invisible in this context.
Rachel, similar isn't the same.
I totally appreciate the concept of shared experience. I believe in the value of drawing parallels between groups' experiences, and finding ways to relate. But I think that Dave has successfully pointed out instances that were unique to disability.
(1) There have never been studies done to see whether Trayvon Martin or other black men should be allowed to live in the community. Are they considered suspicious characters, not to be fully embraced by the community? Yes. Has that resulted in unnecessary death, violence, and imprisonment, taking people out of the community? Yes. Is that abhorrent and deserving of our full attention? Of course! But it's not the same thing. There's nobody standing around with their fancy clipboards, data, and PhDs, making the case that black men should be put in special facilities before anything bad happens. But there are plenty of rational thinking, liberal minded people who will decry the injustice of the Trayvon case and racial profiling, and then turn around and agree that allowing people with disabilities to live freely in the community is a fair question that deserves careful study and scrutiny. Similar issues. Both worth discussing. But different details, different contexts.
(2) We're not just talking about children. We're talking about adults, treated like children. And we're not talking about whether or not to continue life saving measures. We're talking about sterilization. I can't think of any other group where this systematically happens today, and is considered acceptable, or at least worth review by an ethics committee. If anybody else is treated this way, it's seen as a crime. When it's a person with a disability, it becomes a topic for debate tournaments.
I take issue with people trying to "one up" each other in sharing stories of marginalization. I take great issue with it. But I don't take issue with somebody pointing out distinct experiences.
I often use my disability experience to help me relate to the racially diverse students I teach. But I try to be careful about how I do it. "I've never had that experience, and I never will. But I've had this other experience, and I think it's pretty similar. This is what happened to me, and this is how it made me feel. Is that kind of like what you're describing?" I try to find the balance between affirming their unique experience, and connecting over shared experience. I'm convinced that both can be done at the same time. :)
I'm also pretty convinced that out of all the minority groups and marginalized communities out there, the disability community gets the least recognition. I can talk about racism, sexism, homophobia, etc, and I'll get all kinds of reactions from people, but everybody at least acknowledges them as real concepts, real words, real discussions. Everybody has their opinions on those topics. If I bring up ableism, the spell-checker underlines it in red, and people laugh, "Is that even a word?" Disability is considered a medical issue, not a civil rights or social issue. The average person has no idea how to talk about it, or even that it's "a thing" that needs talking about.
I would never say that our experience is the worst, or that such a thing could even be quantified. But I will say that we're the farthest behind in the race for attention and recognition. And I consider that point, in itself, worth recognizing and talking about.
For me, there's a difference between saying that experience of your group is unique and saying "no other group has this problem" when you're making a broad statement.
I certainly agree that the way our legal system oppresses people with disabilities is a unique form of oppression that only people in that situation can speak to... and I'm very glad that you're talking about it.
But when you say "we're the only group that has to prove freedom is better than captivity" or "we're the only group that has been forced to have surgery without consent" -- other groups feel marginalized because those broad statements DO apply to other groups. So when you say that those things only happen to people with disabilities, it's erasing the experiences of other groups.
Some types of people (poor, black, male) are disproportionately incarcerated for drug possession when freedom and treatment for addiction would be better. Pregnant women have been forced to undergo procedures without their consent because many people believe women shouldn't have the right to refuse treatment when doctors believe it's best for the fetus (google "court-ordered c-sections" for example). Female genital mutilation, sex reassignment surgery for intersex persons -- I'm sure there are other examples.
I loved every other part of your post -- really this is just a small, and easily fixed, issue with the wording of just two sentences. Instead of saying, "Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity?"
Say instead, "Why should people with disabilities have to statistically prove that freedom is better than captivity?"
That keeps the focus on what's happening to people with disabilities. I understand the temptation to bring in other groups to make people see -- you wouldn't do this to other minorities, why are we different? -- but since sadly we still oppress so many different types of people, it's better to avoid that sort of statement altogether.
I tick a whole bunch of minority boxes and my experiences in each of those minorities are very different so I think Daves right to say 'only minority' in what hes talking about despite there being a shared experience of discrimination and prejudice.
I am currently 'existing in the community' but being deprived of my liberty,GP access and medical treatment because I'm physically disabled. And although I have high support needs I'm frequently left without food,heat and sometimes even access to water/liquid to drink (I'm in the uk if there are any advocates over here). I am constantly shocked at the attitude that because I cant walk anymore I should be content to stay in bed and have no interaction with the outside world or with non paid human beings. My lifelong condition deteriorated,my actual life didnt have to but no one seems to have got that memo.
As a wheelchair user I'm not allowed entitlement feelings for things that able bodied people take for granted. And I'm not allowed to know whats best for me medically,I have to fight constantly to prevent harm to me by the medical profession and service workers who dont understand my condition.
BUT because I have an above average IQ the law and society have to TAKE AWAY my rights over my own body and my freedoms in an active way (as is happening to me)and it is actually illegal and against the human rights act despite those things not being enforceable in reality. For people with intellectual disabilities those same rights over their own bodys and their freedoms have to be GIVEN by the law and society because theyre not 'just there' by default. Thats the difference and it matters.
To me as an individual that distinction is just semantics because why things are as they are doesnt matter much when you just need them to stop hurting you and getting in your way. But it matters on a wider social level that we acknowledge the individuality of different minority groups experiences because we cant stand by each others sides if we wont acknowledge the landscape the other has to stand on.
And in reality everyones in some minority or other,the only 'majority' is a big collection of different minorities deciding theyre the same as each other on some aspect in order to exclude minoritys that arent the same in that aspect. When we get to the point of not having that 'exclude others' point then it'll be ok to argue 'yeah but the blacks,gypsys,ordinary white men are badly treated minoritys too'. Till then we should be hearing the details and quality of different groups experiences not fretting over the words used to tell us about it.
Emma
I want to thank all of you for the discussion here. I've really learned because I've been required to really think about what I wrote and what you are saying about it. I appreciate all of that. After thinking it through I've decided not to change the wording on the blog - most primarily because then readers would not get the benefit of this discussion here. And, I really think, there is benefit to reading the original blog and the thoughts recorded here.
I'm glad RCR explained it better than I could. And I hope you or some readers here have some contacts or resources to help the UK person above that's losing their rights.
I think imprisonment within the criminal system is an entirely different kettle of fish to imprisonment within the care system.
While for (black/trans*/gay/female/etc) people the 'crime' they committed or are alleged to have committed may not be considered a crime elsewhere, while they may be the innocent victim of a miscarriage of justice, while imprisonment may be a disproportionate and inappropriate response to the 'crime', while sentencing may be affected by the prejudices inherent in the system and in society... the imprisonment occurs as a punishment because the person being locked up has, accurately or not, been found guilty of doing something illegal.
And there are important arguments to be had about appropriate sentencing and universal rights and racism inherent in the criminal justice system and so on, these are big, important issues, but they are not the same issue as the incarceration of disabled people in care homes.
The disabled people being locked up for life have, in most of these cases, not even been accused or suspected of criminal activity. The incarceration of disabled people isn't presented as a punishment for a transgression. Any suggestion that the disabled person was 'guilty' of something or 'deserved locking up' would be likely met with horror even by those doing the locking.
It's often presented as a kindness. It's for the best. They'll like it once they get used to it. They'll be happier here, in the long run.
And yet, there will be no outdoor privileges unless an inmate is docile and manageable...
I remember reading a few weeks ago the following article:
http://www.huffingtonpost.com/alex-stern/sterilization-california-prisons_b_3631287.html
The article itself describes the history of eugenics in California and the recent discovery of 148 women in the prison system who were illegally sterilized (from 2007-2010). Good example of medical procedures that demonstrate both classist and racist assumptions.
"I'm thinking though that there are somethings that are experienced uniquely by gay people and by people of colour and by women ... as well as by people with disabilities. It's it OK to speak of the unspeakable experiences, claim them, and make them part of our oral history?"
Speak about them, but don't assume they're unique, because you don't know. It's always possible that some other group has gotten the same treatment and you weren't aware of it.
From my personal experience, I find very often people from other groups claim something as unique that also happens to disabled people. (Gay people especially, because of the history of gayness being medicalized.) Whenever they do that, I feel silenced, and I usually speak up about it. But most people never even notice, because the experiences of disabled people are invisible to most people.
There's a big difference between speaking up about your own experiences, and silencing others. When you claim your experiences are unique, you silence others who've experienced the same thing.
"The parents of nondisabled but terminally ill minors sometimes have to go to court, on their children's behalf, in order to stop excruciating treatments with little hope of effectiveness. An adult would simply be able to say stop and have their wishes respected. But a minor cannot, and parents can have charges brought against them for refusing treatment. Sometimes these charges are deserved; parents who want to use prayer instead of a simple medical procedure should be brought to court. But sometimes, a minor wants to stop the medical treatments because they've had enough but do not have legal standing. If the parents stop the treatments, they can be arrested. Often, the doctors will simply listen, but sometimes, they don't, with horrendous consequences."
Personally, I would consider terminal illness a type of disability. Perhaps a better analogy would be intersexed people? Many of them have perfectly healthy bodies that are subjected to unnecessary treatment when they are too young to consent.
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