This year, I am actually not at all motivated to do a review. Actually, I can’t think of much that happened this year that is not utterly boring and is actually my readers’ business. I am also tired of endless strings of nonsense about how this year the term-of-the-year for whatever sucks about my life was quite significant, and, as I already professed last year, no magical resolution has come around in 2009. Of course, that’s not really what I meant, and I haven’t been sitting on my arse all year, but I am not inclined to write up some kind of laundry list of all the things I’ve done to improve my situation in 2009 and all the things I want to do in 2010. Neither am I inclined to make a pessimistic post about how life will always suck anyway – in fact, it didn’t suck nearly as much as it could have in 2009. So, no review this year. No new year’s resolutions either. It’s been five years since I first resolved to take charge, after all, and there is not sufficient statistical data to support the conclusion that writing empty words on the first day of the year, will improve life during the other 364 days. So, happy new year everyone.
Archive for December, 2009
I just found out that a student with intellectual disabilities won a lawsuit to live on campus. Micah Fialka-Feldman, who is in a special program for students with intellectual disabilities at his college, was not permitted to live on campus, allegedly because he is not a full-time student, but it is quite possible that some ableism is involved here, too, since quite likely it’s the way the program is set up that makes it part-time. Because he doesn’w want to have to travel for two hours from his parents anymore, and because he wants to participate in all that campus life has to offer, he sued to have the university allow him to move into a dorm room. He apparently won the case, and is hoping to move in on Sunday, although the college can still appeal the case.
As a person living in a country where inclusion of the disabled in mainstream education lags miles behind the situation in the U.S., and as a person with a lot of intellectual ability privilege, I find it somewhat hard to imagine that colleges would accept students with intellectual disabilities at all. Where I live, a few vocational colleges cooperate with care agencies to create certification programs or employment training programs, which have some aim of helping people with intellectual disabilities be more employable. Unfortunately, however, we are not nearly there yet: most such cooperations help students earn a certificate at the lowest level possible, that will not make them employable at all. By 2010, disability benefits will be changed, and they’re marketed as giving disabled people more opportunities for education and employment. The premise is that every person under age 27 must either work or go to school, unless they’re absolutely unsuitable, and your disability status will only be assessed at age 27 (rather than 18, as it is now). Unfortunately, with no radical changes to the educational and employment systems, that would truly make them inclusive to people with disabilities, this change of legislation will likely only lead to people being cut off from disability and shoved onto welfare.
Anyway, in the Dutch system, some student housing associations discriminate those in vocational college in favor of university students. That way, students with disabilities, if they want to live in student housing, are at increased risk of facing discrimination. Same for part-time students (there is a hell of a lot of discrimination of part-time students anyway). That way, it is quite likely that students in special programs, at a disadvantage when applying for student housing. Again, we do not know if ableism is involved here. If you are a full-time university student with disabilities, disability services will likely help you find suitable student housing sooner than the nondisabled students (that’s how I got an apartment as a freshman, while all other freshmen have to be content with just a a tiny bedroom or, if they’re unlucky, no housing at all). Then again, in certain situations, ableism is quite apparent. For example, there is a huge waiting list for student housing, so many students rent a room privately, in which case usually the other students in the house, will get to vote on who gets in – something which, quite likely, leads to disability discrimination. Even if you live with student housing, if you end up in a dorm room, it is quite possible that your housemates could discriminate against you, and this may lead to problems keeping your housing.
I think it is a good thing that Fialka-Feldman won his case. Living two hours away from school would, in the Netherlands, most likely entitle you to be put high on the housing list for transportation reasons. I think that even with the discrimination against part-time students and vocational college students, this should’ve enabled a student to get housing, unless disability discrimination were thrown in. In that case, I hope the recent change to our anti-disability-discrimination legislation would help these people access housing.
Why is it that I and other autistic people without intellectual disabilities, are assumed not to think that intellectual disability makes a difference to an individual with autism? In fact, I have always said that it does make a difference: in a recent comment on Facing Autism in New Brunswick, I actually made it quite clear that, regardless of whether you view intellectual disability as part of autism or as a comorbid condition, there is no denying that intellectual disability and autism together will intersect to create unique needs not experienced by people with either intellectual disability or autism alone. These different needs, in my opinion, do not have intrinsic implications for the question of cure, so I am not calling for divisive tactics in this debate on either side.
The only thing I have said that could possibly be interpreted as denying the impact of intellectual disability – but it was never meant to have that effect -, is that there is (at this point) no distinct autism subtype that describes people with autistic disorder and intellectual disabilities, and does not include anyone who does not have an intellectual disability. Even the Rett Syndrome mutation, which is oftentimes presumed to universally cause mental retardation along with an autistic-like pattern (and epilepsy and a few other symptoms), doesn’t always cause people to have intellectual disabilities. And, conversely, not everyone with autism and intellectual disabilities, has the Rett mutation, so we aren’t anywhere near a distinct autistic with intellectual disability subtype.
My contention that there is no distinct autism subtype that universally includes intellectual disability, is not based on some kind of philosophical objection to such a subtype. If genetic research (which I am not a big fan of, but I can’t call it to a halt), neuroimaging, or even more objective neuropsychological testing, ever established an autism subtype that universally causes people to have intellectual disabilities, I would not deny its existence for the sake of some kind of neurodiversity mantra. The objection I have to the current way in which people with and without intellectual disabilities are divided, is that firstly IQ cannot be measured reliably in many autistics (especially if they have significant communicative impairments), and secondly that, even if it could, an IQ of 70 (or 85, or whatever you want to use as the cutoff), does not deviate more from an IQ of, say, 69 or 84, than an IQ of 99 or 101 deviates from an IQ of 100. There is absolutely no point on the bell curve of IQ where people suddenly jump from normal into abnormal. Those one or two standard deviations are arbitrary cutoff points, which happen to be calculatable (although I forgot how) and whose statistical position is known (ie. 2.5% of the population score more than two standard deviations below the norm). Now with IQ it may be that the bell curve currently assumed, is not entirely correct, but I have never found any literature indicating a jump-off point along the curve, at which one IQ point difference does cause a much larger impact on functioning than anywhere else along the curve. Until or unless such a point is ever found, I will maintain that IQ cutoffs are arbitrary. I do not say that a person with an IQ of 50 isn’t different from a person with an IQ of 100, but I do say that there is no single point along the IQ curve in which this difference is accommulated. That is not philosophy; that is the state of science as it is now. Anyone who can demonstrate to me that there exists an autism subtype that universally creates intellectual disabilities and is objectively distinguishable from other autism subtypes that don’t, or that there is a jump-off point along the IQ curve, is strongly invited to send me a reference.
Now back to what difference intellectual disability makes in daily life. I am often accused of denying any impact by my refusal to accept an IQ jump-off point, but I never said there is no difference between someone with, say, an IQ of 50 and another person with an IQ of 100. (I am stipulating a hypothetical peson with autism and an IQ of 100 here to avoid intersections. This is problematic for me, since my own measured IQ is around 150, which deviates as far from the mainstream as an IQ of 50 would. Therefore, I stand corrected on any assumptions I make that are really based on the intersection between autism and intellectual giftedness.) Of course there is a difference in these 50 IQ points, just as there is a difference between someone with only a moderate intellectual disability and someone who also is autistic. The reality of the intersection between intellectual disability and autism, is that a person who has both, cannot compensate for one by the other. This leads to quite a few difficulties more likely to occur in people who have autism as well as an intellectual disability than in those who have only autism. For example:
- People with an intellectual disability, will often not be able to compensate for their lack of social awareness by reason. Therefore, their interaction with others may be far more restricted than had they been able to think out how to interact at some basic level.
- People with an intellectual disability, are less likely to acquire speech or another form of communication, than those who don’t have an intellectual disability. I must say, however, that cause and effect may be reversed here, in that lack of communication skills may significantly impair cognition.
- People with an intellectual disability may be less likely to devise routines or develop special interests, that will help them cope with the chaotic outside world. Ironically, the development of such routines and special interest may in DSM-V be associated with more severe autism, when in fact a cognitive disability may limit the development of these autistic symptoms. Of course, conversely, motor mannerisms are more likely to occur in people with intellectual disabilities.
- People with severely impaired cognitive and communication skills, are far more likely to engage in self-injurious or aggressive behavior than autistics who don’t have these impairments.
The ability of people without intellectual disabilities to compensate for their autism in a way, opens up doors to inclusion that remain closed for people who cannot compensate in a similar way. Note, however, that it isn’t the medical condition of autism and intellectual disability that creates these barriers, but the interaction of people with these disabilities with an environment that is not created for them. For example:
- People with an intellectual disability are unlikely to graduate high school, while at least academically there are no barriers for people who do not have an intellectual impairment (presuming they don’t have specific learning disabilities). People with severe intellectual impairments, may not even be able to cope in elementary school.
- Employment options are broader for people with only autism (or only intellectual disability) than for those with both autism and an intellectual disability.
- People with autism without intellectual disabilities (and people with intellectual disabilities without autism), on average, have better self-care and daily living skills than people with both autism and an intellectual disability (note: statistics don’t say anything about individual people!). Due to the way the community care system works, with, among other things, its exclusion of people with more intensive care needs, people with intellectual disabilities and autism are more likely to end up in institutionalized care, or being neglected on the streets or in their own homes.
- The increased risk of challenging behavior leads to significant health risks, such as the risk of severe brain damage from head-banging. If an autistic is unable to communicate, it is also harder to tell when they’re physically ill. If they do not get adequate supervision, this in turn can lead to serious illness going unnoticed until it’s too late.
This picture is not universal: I know autistics with intellectual disabilities who got some educational certificate, have a job and live in the community. However, statistically speaking, this is less likely than had the people not been intellectually disabled. I will never deny this reality, and I don’t want to see any autistic advocacy group deny this reality or exclude people who face these more complex challenges because of their intellectual disability, from its target population.
Now, however, I want to point to another reality, that is usually ignored by those who tell me I deny the reality of “low-functioning” autism: the reality of the many people without intellectual disabilities, who, for different reasons, are in similar social circumstances to some people who do have intellectual disabilities. High school may academically not provide barriers if you don’t have a learning or intellectual disability, but the social and organizational demands are still fairly high. Colege is even worse in these respects. In today’s world, employers value social skills and flexibility more than knowledge or technical skill, so the unemployment rate among autistics is higher than among people with other disabilities. Many people without intellectual disabilities, however, are ineligible for sheltered employment. There are many autistics without intellectual disabilities, who still have problems with self-care or daily living skills so severe that they cannot be adequately served in the community care system as it is now. Many others deal with psychiatric disorders such as depression, and they may be hospitalized for these reasons. If their illness can be treated, one might hope they’ll only briefly be in hospital. Many others, despite the statistic that dictates this is more likely in “low-functioning” autistics, have challenging behavior, such as meltdowns or self-injurious behavior. If they cannot be treated for these behaviors adequately, they may have to live in residential care. And there are probably many more barriers faced by autistics who do manage to live in the community, go to college or have a job, but I can’t think of them at this moment.
Of course, that doesn’t change the fact that, statistically speaking, people with intellectual disabilities and autism are still worse off in terms of inclusion in mainstream society, than those with normal intelligence. It is a fact that, even though there are quite a few “high-funcitoning” autistics who can’t get by in the community, employment and education, the numbers are higher for those with intellectual disabilities.
However, there is one thing that complicates the situation more for those labeled “high-functioning”: the care and social security systems are not prepared for them. Of course, I admit that they’re inadequate for people who do have intellectual disabilities, too – I strongly feel that our care system lets down the people with the highest care needs, and will write about that in a future post. People with Asperger’s Syndrome are often denied disability benefits, even though they’re absolutely unemployable (given the demands employers place on applicants), but have nowhere to go for job skills training, if that would even work. I have fortunately never heard this out of an administrator’s mouth, but many people do have an attitude that says: “If you’re so intelligent, why can’t you just go to college and get a job?” If I could graduate and keep a job just by memorizing academic books, put in front of me in order of date I had to have read them, yes, but that’s not the case. In the care system, I’ve often been asked why I won’t live independently, even by people who know that I tried and fell flat on my face within three months. “But what if you got community supports?” a reso psychology, thank God not my psychologist, asked when he was doing some kind of intake interview and the problem that no agency is so far willing to take me (most, ironically, find me too complex), came up. I told him that I got sixteen hours of home support a week (formally I got that plus about two hours of occupational therapy, but some hours were used for “indirect care”), something you would never be able to get since the 2009 budget cuts, and that I still couldn’t cope. To be blunt, I was wandering the streets of Nijmegen, had public meltdowns, self-injured (but my support worker said that head-banging was better than public screaming fits), and suicidal ideation was the formal reason I was hospitalized (quickly changed, in my doctors’ minds, to the meltdowns). This may not suit a person’s picture of someone with a high IQ, but it was the truth. Maybe I would’ve self-harmed, melted down or wandered more if I’d also been intellectually disabled, but then at least the reality would not have been denied for the sake of what suits the system best. Waiting lists would still exist, and this is something we have to fight to end. More barriers would exist to care in the community, education appropriate to intellectual level, employment and recreation. This is why we can’t let down those with more severe impairments than ourselves: they may have different needs, but that doesn’t mean their needs are not valid.
Posted in Autism, tagged Advocacy, Ari Ne'eman, ASAN, Asperger's Syndrome, Autism, Autistic Advocacy, Autistic Self-Advocacy Network, Cure, National Council on Disability on December 21, 2009 | Leave a Comment »
As I wrote a few days ago, Ari Ne’eman, ASAN founder, has apparently changed his mind, or at least altered his language, on the subject of autism as a disability. Most likely and hopefully, he hasn’t changed his mind on the subject of cure. Harold Doherty uses this as a reason to deny him the right to advocate for autistics. His reasoning, as always, is that Ari has an Asperger’s diagnosis and is “not like my [lots of dramatic adjectives] son”. For once, I will accept this notion; quite evidently, Ari is not as disabled as Harold’s son.
But reasoning by example is not logic. Even if it can be demonstrated that there are strong, undisputable differences in disability between an autistic Harold disagrees with and his son, that is no argument for a clear, universally applicable, non-arbitrary line between “low-functioning” and “high-functioning” autism. I already addressed this problem several months ago, and now Harold doesn’t tell me not-like-my-child nonsense to my face, but, along endless streams of dramatic repetitions that severely autistic people exist (as if anyone ever said they didn’t), tells me that I have every right not to want a cure, but I cannot decide what he does with his own child. Now, can we move on and accept that, since Harold is Conor’s parent and may be Conor’s guardian in the future, he decides what treatments Conor gets and no autistic should intervene? Well, actually, yes, we can move on, since I never said that I could make decisions about Conor’s life, and neither did Ari or any other autistic advocate. But it isn’t just about Conor.
Legislative or medical decisions that concern the possibility of cure, affect every autistic. Once different autism subtypes are objectively established, such as by consistent neuroimaging differences, there might be research into cures that would only concern people with a particular autism subtype, but there is absolutely no reason to assume that this subtype will consist entirely of cure-wanting autistic adults and children of cure-wanting parents. Then again, it isn’t like the autistics and parents who do not wish for cure, will not be affected once one becomes available.
Let’s face it, after all: autistics are expensive to society. This doesn’t just go for the hypothetical all tragic, profoundly disabled autistics for whom their autism has absolutely no strengths to add to their personalities and who would still live miserable lives with every accommodation possible, even if science could destillate such a subtype, but also for the autistics who, by Doherty’s standards, are too “high-functioning” to have any say in the matter. There are, after all, many “high-functioning” autistics who cannot live in the NT world without supports and services. Think of all the “high-functioning” autistics on disability or unemployment benefits, and all the “high-functioning” autistics who need long-term care. Ari may not receive taxpayer-funded disability supports, but someone who is in every medical way similar, or someone whose communication skills are just too low to be a national representative of autistic advocacy, may. Many of these, including myself, don’t want a cure, but that isn’t saying that society at large wouldn’t save money out of having us cured. Ultimately, even many “high-functioning” autistics could be cheaper to taxpayers if we got rid of our autism. Or at least, that is what common sense would have the agencies making policy in this subject think. But then they don’t realize that autism is not a disease that can be stripped off a person and voila, we have the original person, hidden behind the monstrous mask of autism, back.
Firstly, it is quite likely that autism comes with an increased chance of having certain cognitive strengths. This does not say that every autistic has them, but it may be impossible to tell when a child is first diagnosed, whether they have these cognitive strengths, and they could biologically be linked to quite disabling autism symptoms. Therefore, if some kind of autism cure were to target whatever biological mechanism caused these disabling autistic presentations, in some cases we might unknowingly weed out strengths. I am not talking about Einstein here, but about the much more ordinary. For example, most autistics have a better-than-average ability to focus on small details in structured tasks. A subgroup of these will be able to use their ability to hyperfocus in a job setting, but it is also possible that the same ability to hyperfocus can be significantly disabling in other areas. In fact, it is quite possible that the cognitive characteristics that present as a significant impairment in childhood, can be an asset in adulthood or in some cases the other way around, or that a characteristic can be an asset some days and an impairment other days. And yes, it is also possible that for some, the impairment will always be significant, but even if we decided this was a reason for cure, it isn’t like we can tell this when a child is first diagnosed.
Secondly, it isn’t like, when a cure becomes available, all autistics in the world at that particular time will be young children, who will grow up never having known that they were once autistic. Quite a large number of autistics will have reached adolescence or adulthood, and be used to living a life with their autistic brain. Even if they do not like that and wish they had been neurotypical, this is still the way they’ve always lived. Yet it isn’t like anyone over, say, eighteen will no longer be an interesting target for cure. If someone is in their twenties, a cure could theoretically mean forty years less of disability benefits and services, assuming we aren’t accidentally weeding out the person’s autistic job skills along the way. But even if the cure had only destroyed what are perceived (by whom, actually?) as impairing aspects of a person’s personality, we would still have a person who lived their life for twenty or more years with an autistic brain, and who suddenly acquires a neurology they’re entirely unfamiliar with. It is not known what effect such a dramatic change would have on a person’s functioning. It is quite likely that there will be a critical time period for the brain to adapt to the way it is wired, so that adults, or even children above a certain unknown age (that might be before they usually get diagnosed!), will not get any functional benefit from a cure at all. Note, here, that no functional benefit does not mean no effect. When peripheral impairment, like sensory impairment, is fixed in people over a certain age, they will not or only partly recover over a long time period, and their functional impairments may be different from, but not less detrimental than, the original impairment they were born with (eg. visual agnosia as a result os sight restoration). The effect of central nervous “fixing” will likely be different, but I make no assumption that it will be less dramatic. In fact, quite likely, it will be an extremely shocking experience, even if the person wanted a cure and the characteristics altered were all impairing them. If a person can ever learn to live again with a brain that is fundamentally different from how it always was, this requires a long, intensive process of adaptation. Are the people who are going to make policy decisions about autism cures, aware of this? Will they make sure cognitive rehabilitation programs will be ready to train the children and adults newly cured to live with their “new brain”? Most likely, not for the first generation of newly-cured autistics, since no-one will know what effect cure will have on these people’s cognition, so no-one will be able to rehabilitate them. Will autistics’ post-cure quality of life be assessed in the same way today’s autistics’ quality of life is assessed, so that we will know whether autistics actually benefit from cure? What will happen should autism cures not actually save money in terms of disability supports or benefits, because a child or adult newly cured will never be able to live productively as a neurotypical? Will this mean all cure money went down the drain? It isn’t like any of these issues are urgent, in the sense that I am confident that no cure will be found anytime soon, but the doctors, scientists and policymakers involved in the process of possibly finding a cure, will have to be aware of these likely complications, and take them into account when making decisions. It isn’t like I, or any autistic advocate I know, thinks the world owes us a living for being disabled, and many would go a long way to live as fully included members of society, off disability and with as little formal care as possible. But getting their brain messed up in such a drastic way as an autism cure would do, is not among them. Unless, of course, they have no choice, and this is exactly why I claim the right to have a say in cure debates. I do not decide whether your autistic child gets a cure, but I do want a say in policy-making on the subject that would effect me. And since I don’t live in the United States, and most advancements in research that could lead to a cure, will go on there, I am glad for autistic advocates who do live there to campaign for acceptance and full inclusion of all autistics.
There is a debate within the autism/autistic community about whether the core of autism should be like Asperger’s or “high-functioning” autism, and all the additional problems faced by certain autistics, are “comorbidities”, or whether these additional problems are part of the autism itself. Examples of these so-called “comorbidities” include mental retardation and epilepsy: both are far more common among autistics than among the general population, but they are not universal and have never been part of the diagnostic criteria of autism.
According to the people who don’t believe in “comorbidities”, the people who do, are using the idea of comorbidity to explain away why some autistics are not as shiney-oh-so-beautifully-neurodiverse as they are. I have never seen a response to these accusations from someone who believes in comorbidity, so I have no clue whether this is the motive. Maybe the motive is simply the fact that the conditions are not medically speaking part of each other.
There is some use in acknowledging comorbidity for the purpose of medical treatment. For example, it used to be the case that ADHD and autism could not co-exist, because in these cases the attentional problems were presumed to be a part of the autism. Then again, what are the implications should the person want medication for their attentional problems? Ritalin is not approved for autism, after all. In the same way, if mental retardation were part of autism, someone who learns to use a communication system and, by that means, manages to demonstrate an IQ above 70, would lose their autism diagnosis, despite still being quite severely disabled.
On the other hand, even the medical practitioner would still have to look beyond the condition(s) they’re treating to see the whole person. For example, imagine there is a person who is autistic and also has a hard-to-manage seizure disorder. This person is displaying significant behavior challenges, and their parents take them to a psychiatrist. This psychiatrist only acknowledges the child’s autism, thinking the epilepsy is “comorbid”. He does believe in the concept of “autistic irritability”, however, and prescribes Risperdal. When the child’s seizures get worse, he does not acknowledge the possibility of the Risperdal causing it, and refers to the neurologist. When I read about medical malpractice, lack of cooperation between specialists is often a cause of harm to the patient. Besides, even if no physical harm is done, a patient just isn’t dignified when they’re looked upon like they’re the embodiment of the condition(s) they’re treated for.
I, for one, do not really like the term “cmorbidity”. In 2003, I started an E-mail list entitled Autism-Comorbidity. It still exists, but is dying a slow death of spammers and poor moderation on my part. I was uninvolved in the advocacy movement at the time, and probably just didn’t think about terminology much. Now that I do, I indeed wouldn’t have named the list that, and I might not have started it at all, because I believe people with multiple disabilities should not be segragated by the communities representing their different disabilities.
Let’s look at the reality of actual, indisputable comorbidity, and the way it is understood within specific disability communities. For once, I am going to use myself as an example, since I happen to have two entirely unrelated disabilities: autism and blindness. (Oh well, it is possible to link the two, in the sense that preemies and people with my eye conditon are at increased risk of autism, but that is not the point of my post.) No-one is going to say that either disability is part of the other. I am not “low-functioning blind” because of my autism, despite the fact that I function at a much lower level in many ways than most blind people. Blindness obviously doesn’t turn me into a “low-functioning” autistic, either.
Now what is the effect if we accept the notion of comorbidity in my case? We have the Standard Human, and then look at the definitions of both blindness and autism. Because I am no longer talking about medical treatment, but about disability, let’s look at the definitions created by the different disability groups. So, here we have the NFB definition of blindness, with its slogans along the lines of: “With proper training and opportunity, blindness can be reduced to a physical nuisance.” In other words, in a modern, western country with equal access to education, and with a good kick in the arse from a recognized training center, blindness is hardly a disability. Now, just yesterday I found out Ari Ne’eman is assumed to have said a similar thing of autism. Edit: Ari informed me that he does feel autism is a disability. I am not totally sure what the implications of this misunderstanding are for the remainder of this post (which I hadn’t published when he corrected me), and any assumptions I make about his position on the implications of autism as a disability/difference, are based on this (mis)quote, that I grabbed from Harold’s blog, rather than on direct communication from him.
We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference – one that we have just the same right to as those of a different race, nationality or religion. The belief was that anyone society labeled “disabled” could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students.
The implication seems to be that autism is not a disability if autistics are given the same challenges and opportunities as neurotypicals, I will assume with certain accommodations cause it makes no sense if Ari assumed no autistics needed those. But still, again, we have a difference that is hardly a disability. So, we have two disabilities, both of which are independently of each other referred to as a mere “physical nuisance” or “difference”. Now, since the purpose of the disability movement is to reshape the public’s perception of the Standard Human, in that sight and neurotypicality respectively should not be mandatory characteristics, I can be viewed upon as a Standard Human now. Oh great, can I now get a job? How do we determine whether the reason I can’t, is a lack of reasonable accommodation for my disabilities, or a lack of expectations? Since both are interconnected – if you expect someone will be incapable anyway, you won’t accommodate them -, this is hard to say. It depends on the perceptions you have of people with certain disabilities, and it depends on what you consider reasonable accommodations for the people with the disability you are representing. I have unfortunately never been able to locate a truly inclusionary disability group, while in reality this is what we have to add to the civil rights movement: blacks, women, queers, etc. all used to prove their right to equality on the basis that they were not somehow less capable if the majority oppressing them would just see how oh-so-capable they are. I am still frustrated that any disability organization with influence, just picks up the thread where the women’s, black and queer movements left it, with the same oh-we-are-so-capable mantras. It should not freaking be about proving we are capable enough to earn a right that comes naturally to the abled majority. We should not have to prove what our type has to “offer” the world in order to earn rights that come as a matter of course to those in the majority: non-disabled people aren’t proving that they have something to “offer” all the time, either.
Now how does this relate to the concept of multiple disabilities or “comorbidity”? In essence, the disability community falls into the same holes that the other civil rights movements have, but with more complications, in that not all disabled people can be represented. In the women’s movement, black women were not represented, because white women either were not even aware of their existence or viewed them as somehow not fully human themselves, swallowing oppression of a minority they din’t happen to belong to. With the disability movement, even if you didn’t want to exclude people based on prejudice or minorities-I-don’t-belong-to-so-whose-oppression-is-not-my-business, you would have a hard time representing all disabled people, simply because you cannot possibly be aware of all disabilities that might exist and all possible intersections with race, ethnicity, class, gender expression, sexual orientation, etc. I do not expect the NFB to really understand what being blind and autistic is like, and I have a hard time imagining what it would be like for someone of a minority race or ethnicity, since I happen to belong to my country’s majority in these respects. I, however, do expect that disability groups stop actively working against people in minorities they aren’t representing. I don’t want to see another NFB member split out for a person with multiple disabilities exactly which of their traits are “blindisms” and therfore unexcusable, and which are due to the additional disabilities. I haven’t seen it with ASAN, but if I ever catch an ASAN representative doing this (or an Autistics.org representative, for that matter), expect to get an angry letter from me, and I don’t care what I do to harm autistics’ or blind people’s or any-other-minority’s image by doing so. I thouldn’t freaking be about image; it should be about equality.
For clarity’s sake: it isn’t like it will help that there are organizations representing pretty much every possible minority group, if all minority representation groups stick to just their own minority. It isn’t like I can go to the NFB (or my country’s equivalent of it, which is, fortunately, a lot less radical) with every bit of blindness discrimination, only to find out they think that something I experience isn’t exactly “normal” for a blind person. “Oh, you’re also autistic? Maybe you should be checking out ASAN (or its very exclusionist Dutch equivalent) to see if they can help you?” Then if I check out the Dutch autistic self-advocacy group, which as I said is very exclusionist (it believes in “funcitoning levels”, and makes no big deal out of excluding the “low-functioning”), they may find out that I am not exactly as independent as they’d expect “high-functioning” autistic adults to be, and their role models can’t teach me either, and they refer me back to blindness. Alternatively, of course, either group rep could be speculating on my having “internalized low expectations” or some other equivalent of saying I’m not trying hard enough, but I’m not going into that now. By splitting out my experiences into those that are “normal” for each of my disabilities (or other minority statuses), it becomes easy to play out minority positions against each other. After all, of course it makes no sense to split out each and every experience a person has, because they were not autistic last week, a woman today, and blind tomorrow. It also isn’t like I am the most unique person in the world as far as intersectionality goes; in fact, I have come across bloggers whom I caught myself exercising stereotypes on due to perceiving them as having too many intersections to be true. I am not free from not-a-minority-I-belong-to or even too-many-disabilities-to-advocate-for bullcrap myself, but I try to catch myself when I use it. Now let’s hope disability organizations and advocates will take the lead and at least try not to exclude people from their community based on multiple disabilities or minority positions. A person, after all, is not the a Standard Human with deduction for minority status and extra points for being oh-so-capable.