Deciding who's legitimate
Although it's been a very quiet scuffle as far as blogger disagreements go, there's been a bit of a dust-up among disabled bloggers recently. It's been so quiet that it's impossible to tell how many people know about it, have strong opinions about it, or are effected by it, specifically.
Generally speaking, the issue is about disability hierarchy, or judgments disabled people place upon other disabled people regarding their abilities and inabilities. I suppose this kind of ranking is human nature since it happens within the black community according to skin shade and within the GLBT community with regard to how closely individuals meet gender binaries (male, female; likes men, likes women).
One type of disability hierarchy relates to types of impairments. Basically, among the obviously disabled, people with spinal cord injuries rank higher than folks with congenitally-caused conditions, intellectual or developmental impairments, and mental illnesses -- and the less-paralyzed the better for SCIs as well. The more normal the body (and behavior) the higher you rank; the less drooling, spasticity, deformity, etc., the higher you rank.*
Unless you're normal enough to pass as nondisabled, and then it gets tricky. The misleading idea that ability and disability make up a binary situation leads to questions of whether or not an individual is truly impaired or disabled. At what point is one legitimately disabled? How can you tell who's a fake? What if your condition is intermittent or varies daily? How much of a developmentally-impaired individual's behavior is abnormal and how much is just not accepted by a narrow-minded public? Are you still disabled if your bipolarism is controlled by medication? If your prosthetic limb works so well no one would know that it's underneath your pant leg, do you qualify or not?
These aren't just arbitrary questions. Much of it has been written into law as if there are definitive answers, and people qualify for assistance of various kinds depending on the legal ruling. Besides personal identity, there's a lot of money and some legal rights at stake. These legal determinations bleed into social interaction and voilà -- disabled people (as well as the general public) end up thinking within the binary system. You're either disabled, or you're not.
About a week ago, WheelchairDancer responded to an article she'd read in the NYT, written by someone with troubling health issues, declining physical abilities and an illusive diagnosis. While noting the similarities in the Times story and her own, WCD wrote:
The frightening loss of function continues. I do use a wheelchair, but I didn't END UP there. I embrace my chair as a freeing pair of legs. My condition has not stabilized. I try to walk as little as possible; it's painful and awkward. Walking is reserved for ever shorter distances only. I am being fitted with braces, but we are still trying to figure out which ones are best.The above caused the disagreement I'm writing about here, though WCD went on in that same post to say:
I go to doctors trying to find out what is "wrong with me." I feel like a puppy coming to a human for food that keeps getting kicked and slapped, but keeps coming back because it has a misplaced faith in human goodness. Why do I do this to myself?I suspect WCD wrote that post with an exhilaration and relief to see her story mirrored by someone else's. A lack of diagnosis can make a person extremely eager to find connections in others' experiences. I know myself that these connections can make you feel better, safer, less alone. And they can offer hope.
And why do I believe I need a diagnosis? What good would a diagnosis do me emotionally? Since they are already treating symptoms, what good would a diagnosis do me physically? Can there be a cure without diagnosis?
Al Masters of Crip Revolution responded with what might seem like a benign comment:
WCD, Let me make sure I understand...You are disabled to a point that you need a wc, yet do not know why. It seems like the wc is so much a part of your being. Dance, etc. Could you live your daily life without a wc if it was necessary? Maybe I have missed something reading your blog for a long time.However, it struck a nerve for WCD, and her next post revealed her inner anxiety:
What follows is both her defense of her status as a wheelchair user and some deeply eloquent ruminations on the emotional process of living with a mysterious but progressive physical condition. What she writes resonates strongly for me.I KNEW it. I KNEW it. I KNEW I should not have posted yesterday's post. All my self-doubt alarms are going off...
What I hear is:
You aren't truly disabled. You're faking. And, moreover, you have deceived everyone who reads your blog.
I know. He didn't write that. But I hear that. So, let me speak to that weird combination of his/my concerns.
At no point in my blog have I denied that I can walk.
The rest of this disagreement, if it was indeed with Masters, played out privately. But WCD's third post on the topic announces that someone(s) finds enough fault with her blogging as a wheelchair user to notify her that she's off their reading list:
I feel like I have laid my very self very bare. I really appreciate the words of support from all of you.I wasn't aware, myself, that WheelchairDancer could walk, and I'll admit it surprised me. But I think my belief that she only travels by chair was my assumption (and sloppy reading skills) rather than any omission or misdirection by her. The dominant cultural narrative about wheelchair users dramatizes impairment as a sudden and total injury, not an on-going negotiation between energy and ability.
To those you who have let me know by email that they won't be reading any more, thank you for reading -- I guess this is kind of useless because you won't see it. I am sorry you find me not suited to your notions of disabled community any more. I have enjoyed our ethereal contact.
Are you truly disabled if you can walk, but choose to save your energy for something other than the journey from place to place? What if you use a scooter because you're overweight? What if you're overweight and have arthritis? A heart condition? What if you're getting over a bad cold and borrow a scooter at the mall because of residual fatigue? What if WCD's use of the wheelchair remains unchanged but she gets an official diagnosis? What makes wheeling legitimate?
This question of legitimacy comes up publicly. Last year's Ms. Wheelchair Wisconsin had her tiara yanked away when she was seen ambulating in the local paper. Michael J. Fox's true impairments have been widely debated just recently. Stories about actual fakers often make the news.
Legitimacy implies integrity, but the problem is that diagnosis implies legitimacy. Also, full disclosure is demanded since disabled bodies are treated as public property to be stared at and judged. These social conditions to claiming identity isolate and, ironically, disable too.
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*"Ranking" here refers to favorable treatment in the same way that attractive people have advantages less attractive people don't. Generally, men have more social power than women, tall people have more power than short, etc. It's not a literal ranking so much as a class system.
10 comments:
Difficult one. But I think it's not only those who define themselves as disabled who create such hierarchies, but the wider society in their responses to "the disabled". It is social attitudes, often, rather than the nature or severity of the disability which determine how individuals will view and think about themselves and thus present their disability to others. And (in the UK at least)whether there's a financial incentive involved...
Interesting post and something that resonates with me as well.
First, I would like to say that although this discussion of legitimacy played out partly in private, it still is happening rather openly compared to how things happen here in Québec. We too have these "class struggles" but they certainly do not happen outside of a very closed milieu and certainly not on the Web. And I would say that indeed, inside of every micro-community of persons with disabilities, there are those who rank higher than others in terms of power and this is often linked to ability.
Secondly, as someone who has a rare and complex condition, moving back and forth all my life from walking with a prosthesis to using a wheelchair, there is a point where your legitimacy comes into question although for me, it was not necessarily from persons with disabilities but from the "system" and from persons without disabilities. All my life I have been either considered too disabled for something or not disabled enough. There was however one astonishing moment for me a few years ago where, after I had just started walking again, someone suggested I should use a cane, even though I did not need one, because I did not look disabled enough and was therefore not representative enough.
Finally, although there are certainly situations where it may be hard to definitively pin down a particular disability for lack of a clear-cut "diagnosis" and that these people should certainly not be penalised for it, I do think that there does need to be some sort of "line" if only to protect the rights of disabled people and prevent our issues from being highjacked from persons without disabilities. In Web accessibility, there is a very organised and concerted effort to expand what falls into the idea of disability to include everything from search bots to mac users, etc. Personally, I find that this can be a threat to rights that have already been recognised legally or to efforts of having those rights recognised.
Larry here from disabilitynation.net. Very interesting and thought provoking discussion! I know somehow this relates so I will throw it out there. I’ve been visually impaired all of my life, in recent years more toward blind. I can’t speak for the blind community in other countries such as the UK but here in the United States it’s very apparent that the broader blind community views themselves as somehow different and specific unto themselves. Almost as if they rank their condition so great or limiting that they’ve got to work on their own, outside of and apart from other disability groups. Therefore, I see little association and involvement by the blind community in other broader disability issues. I’m very frustrated by what the blind lobby has done in the past. From working to establish laws that treat them different than other disabled people to harboring views that cross-disability organizations like centers for independent living don’t provide services and assistance to anyone other than chair users. I see a very real disconnect between those who are blind and the rest of the disability community though I suspect also that those with mental health and developmental disabilities might argue the same thing.
As for ranking disability and a class system, I suppose its human nature but gosh, we do ourselves a disservice as the broader disability community. I don’t look at my friend who has a spinal cord injury as being more legitimate or rank them higher on the top ten lists of disabilities just because of their condition. I think however that society does do that to a point. The more graphic and obvious the symptoms are the more reaction and, yes, disturbed the average person is. Look at the recent Michael J. Fox situation. The symptoms of his disability are very apparent now and people were shocked to see it. All political agendas aside, I think that was a very real part of the discourse in the media last week but they all were trying to ignore the elephant in the living room. It was either that he was off his meds, faking his condition or that he was politicizing the issue by throwing his disability in to the mix. Yet, average Joe American was probably wondering why he was on television at all and thinking how terrible it would be to go through life like that. In fact, I listen to a number of the talk shows, (Rush, Sean hanity, Etc.) and I heard the call in audience say on several instances that this dialogue was mean spirited and shouldn’t be happening at all. Ah, those kind hearted people who just figure if you ignore disability and hush children when they point and ask questions. Don’t talk about it and it will be fine.
I guess what I’m trying to say is that I think that if those of us with disabilities spend our time questioning the legitimacy of others who have disabilities or try to rank them against another then we are not helping ourselves. Is someone disabled if they once had a condition and medical treatment has resolved or improved it? Is someone disabled enough if a new device or technology greatly increases their independence? I can’t answer that. If my friend can walk sometimes and at other times chooses to use a chair because its easier then is he or she disabled enough? Who knows? The fact is that disability is also something very personal and we’ve all got to live with it and we do it differently. You can’t establish hard and fast rules for every condition and every person. But, I do know we have many other important issues to be focused on and as persons with disabilities we shouldn’t be questioning the legitimacy of another person’s condition.
Zara: Can you say more about this?
In Web accessibility, there is a very organised and concerted effort to expand what falls into the idea of disability to include everything from search bots to mac users, etc. Personally, I find that this can be a threat to rights that have already been recognised legally or to efforts of having those rights recognised
Larry, I hadn't thought of it from that perspective, but it is true that there are legal benefits to being blind that other disabled folks inexplicably are not included in. Freedom from certain fees and taxes, I believe.
But it works both ways, certainly. When society or even disabled people generally talk about access, it's usually about mobility rather than sight issues.
And I agree that questioning others' legitimacy is a waste of time.
Blue,
In the last year especially, several Web developers and designers, on blogs or mailing lists, have been questioning whether accessibility is a "persons with disabilities" issue or an "access for all" issue. For a summary of both positions, see this article from Accessites. I also suggest you have a look at isolani's series Accessibility in Trouble.
Basically, the reasoning seems to be that since some Web accessibility requirements can indeed present secondary benefits for persons without disabilities (for example, those using less performing material or mobile phone users or those with slow connections or non-native speakers of whatever language, etc.), then it is inadequate, perhaps even discriminatory, to present accessibility primarily as a persons with disabilities issue. And some feel that "selling" accessibility on the basis of benefits to disabled users is too difficult because most people are "uncomfortable" talking about persons with disabilities. So, most notably, search engine optimisation (SEO) is showcased heavily because, did you hear the news ?, Google is blind. In essence, many argue that accessibility is more about availability of resources for everyone. Not withstanding that there already is a concept for what they are referring to, i.e. universality, my major problems with this are :
Web accessibility is a complex field and many developers have a very limited understanding of what the real needs of persons with disabilities are. I do not believe that redefining accessibility to suit business or SEO concerns or suggesting that problems accessing a Web resource with a mobile phone are comparable to a disability will help them to better understand our needs.
Also, I feel that implementing accessibility conditionally to what is convenient for mobile phone users or search bots, etc., particularly in places where it is mandated by law, is not an indication of rights being recognised and upheld. While it is certainly nice that some accessibility requirements can be convenient for other users, I do not believe that you can consider these interests on the same level and I fear there is a real danger of ignoring requirements that are very necessary to certain types of disabilities but that are more demanding and/or present limited advantage in reaching broader audiences or achieving better SEO, etc. Moreover, I fear that with this new definition, there is real danger that rights to access for the disabled not be legally recognised in places where it has yet to be mandated by law because, after all, "accessibility is for everyone" so why would we need to legislate it for a particular population ?
Finally, and this is more a personal statement, I am troubled that this effort is coming from non-disabled people and that very few persons with disabilities are involved in these discussions, whatever their position may be. I feel like once again, things are being "decided" for us on something that is directly related to our rights by people who seem to have a limited understanding of the overall issues relating to disability.
It's this very heirarchy that keeps me from talking much, to other disabled people, about my condition. Looking at me, you can't tell I have any disabilities at all. But I do. I have Lupus, and while it is remission at the moment, I live with the constant knowledge that I may well wake up tomorrow morning and not be able to get out of bed. I have had spells where I was in so much pain and my muscles were so severely contracted that I could not move my arm or even manage to sit up in bed. I have spells where I loss parts of my vision or have dizzy spells so bad that I can't even sit on the toilet without bracing my arms against the walls. You can't tell any of that by looking at me, however.
So, I feel guilty saying I have a disability. Because it comes and goes, because you can't see it, because for me it's still early in the game and because well...I don't want to take focus away from people who are worse off than me. Part of that is selfish, though. I know there may well come a day when I'll have to use a wheelchair, so if public focus is on improving access then it'll be there when I need it.
It drives me crazy though, when I get hit by sudden attacks. I cannot tell you the number of times I'll be out grocery shopping and suddenly I'm so exhausted or in so much pain I can't stand up anymore. The looks I get from people when I'm leaning against the wall, or turning some box or something into a chair so I can keep from falling down are awful. Because I don't look sick. So, I don't know. I just feel like I don't really belong to either group, ya know?
Regarding the description of mac users as disabled:
Accessibility is an issue for many people. I wouldn't normally consider mac users disabled, but in the context of websites written for PC, they are. There's nothing wrong with a mac, it's just that most of the internet isn't built with macs in mind. The same thing can be said for disabled people. There's nothing wrong with me, it's just that society isn't designed with me in mind.
As for 'faking', most people can't tell I'm autistic when they meet me. They just think I'm a smart kid. I used to feel bad about saying I might be autistic, because I was not diagnosed and seemed so typical. Even after I'd accepted that I was, at very least, on the broader autism phenotype, I kept wondering if I was maybe just rude or lazy or stupid, not really autistic. I felt like it was an excuse. When I was diagnosed with PDD NOS, I stopped worrying about it. But in reality, the best one to judge if someone is autistic is the person themselves, just as it is with gay people, because it's about how you think and experience the world (despite the behavioral definition). I would like it if people were empowered to define themselves more, without feeling like they need an official 'stamp' to prove they are who they are.
Zan, yes. I can sympathize with how people with invisible or intermittent disabilities have a hard time accessing help and respect for their impairments. It's nothing to feel guilty about though.
My son has some orthopedic impairments, and we've had a lot of assistance through early intervention in getting PT. But as he nears age 3 and will be phased out of early intervention, everyone is telling me that "the system" after age 3 is more interested in cognitive and speech impairments, in occupational therapy and speech therapy rather than PT. This is supposed to be because OT and speech will aid kids in their academics. The system doesn't see that having orthopedic impairments yet no cognitive impairments could still cause a kid to fall behind in school if he or she can't keep up physically.
Anyway, I thought this was related here to this hierarchy thing because there is a kind of hierarchy now, with autism being the "in" disability and physical disabilities being pushed to the side as if they don't affect people's lives. I have tried to shop for books about raising kids with physical issues, but nearly the whole "special needs" (ughhgh, hate that term) section focuses on autism. Don't know what I'm trying to say here, really, just another part of the whole physical vs. cognitive thing.
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