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.
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