No Review This Year

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.

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Intellectually Disabled Student Wins College Dorm Lawsuit

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.

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At the Ceiling of the Care System: The Effects of Care Packaging on the Most Severely Disabled

As I wrote last February and last month, “intensive”, “24-hour” or “one-on-one” care may be thought of as far more than they really are. This may be a problem for those with moderate disabilities, who have to associate themselves with such words as “intensive” in order to get what is for them a minimum level of care, but it is even more problematic for those with profound disabilities, for whom the heaviest care package is not enough.

I just looked up what the developmental disabilities care guide says about the highest care class in their subsystem, class 7, “(guarded) living with very intensive support, care and behavioral regulation”. “Guarded” is my best try at a translation for a Dutch word that is just a little less restrictive than “locked”, but you can be assured that most people in this care class, will live in a locked institution placement.

The guide describes the support required by people in this care class, as follows:

You need intensive support. This is personal and protective support. You also need a lot of structure. The staff also helps you with severe problem behavior. Your staff needs to correct you throughout the day. You also cannot work or interact with people in a group. There are always more support workers. This is important for the safety of the staff and the people in your environment. You are socially dependent. You can only take part in the community with a personal support worker. In your social life, you also need to be supported constantly. In everything you do and in every decision you make. [...] You need a safe environment. The staff show exactly what you can and can’t do. The staff will also make clear and strict agreements with you.

Sounds good, except that a person will always be housed with maybe ten to fifteen people who have the same problems. I would hope there is more than one staff member, if all ten to fifteen clients are a potential threat to themselves and the people around them, as is suggested in the following paragraph:

You have severe behavioral problems and psychiatric problems. You self-harm sometimes and you may be aggressive. You may also not want things, manipulate people, and may have compulsive behavior. You react very strongly to what happens around you. Due to these severe problems, it often takes more than one staff member to support and care for you.

Even though this sounds harsh, at this point, there are already people who would reach the ceiling of what the care system can provide them, namely, those who are a constant or almost constant threat to themselves or others. Apparently, if you have a developmental disability, you are not supposed to have the extreme behavior problems the mental health subsystem reserves its care class 7B for. By the way, once again, there is very little acknowledgement for the consequences the developmental disability has for the person’s functioning.

As said above, people in this care class will not be able to participate in a group. Nonetheless, the creators of the care guide have decided that they are expected to participate in day activities in a group of three persons. This may not seem much, but if one client starts self-harming, how will the staff make sure this resident is being stabilized (or even restrained, which I don’t approve of but am pretty sure happens) without risking that one of the others will start to act up in the meantime? Back in the days before we had care packages, day activities were approved on an individual basis, but now even the most profoundly disabled people, are expected to get day activities in a group setting. Of course, day centers have always worked that way, but at least in the old system, people who truly could not participate, could be provided with individualized recreational activities in their living facility.

Now lets look at the care hours allocated for people in this class: 31.5 to 38.5 hours a week including day activities. That sounds huge, but it becomes less huge if you are looking at everything that needs to be provided within this timeframe. For instance, the care guide says that clients in this class are approved for four-and-a-half days of day activities. That comes round to 36 hours. Now assume that all people in this class can actually participate in a group of three people – as I said, this isn’t the case, but lets pretend. That means twelve hours a week per client are spent on day activities. Leaves about 24 hours for everything else: housekeeping, dressing and grooming (which most people are supposed to be able to do “with a lot of stimulation”, oh here we go again!), supervision to make sure they aren’t self-harming or becoming aggressive, medical care, any social or community activities, … and of course all the “indirect care” (ie. bureaucracy), because, even though I seem to remember that isn’t supposed to be paid out of the clients’ care packages, what else will the staff be paid from while doing paperwork? Besides, the facility will need to provide 24-hour staffing with more than one person, cause there is no reason that people cannot become aggressive at night. Is it likely that there could be a one/five staff/resident ratio at all times? I don’t know, but I think it is not imaginary: I am not sure whether I hope or don’t hope that the people in the care facility I wrote about last February, are in this class. If they are, and the staff/resident ratio is still as bad as it was when the documentary was aired, this proves our care system is letting the most severely disabled down. After all, a 4/24 staff/client ratio is already very inappropriate for this group, and I can imagine people more severely disabled than those the documentary was about. If they are not in this class, I wonder why, since from what the documentary showed, they clearly fit the criteria.

For a little perspective: it is probably not a coincidence that almost every subsystem, no matter how different they otherwise are, has its highest care package entitle clients to around 35 hours of care a week including day activities. It is, in light of this, also not surprising that certain intersections of multiple disabilities are not acknowledged. For example, no-one is supposed to need both intensive behavioral support and a lot of personal care or substantial nursing care. This is of course not in line with reality, but it suits the Powers That Bureaucratize well. They wouldn’t want to provide people with the care they need if it’d be too expensive, of course. With these care packages, they can just tell a person or their representative: “Sorry, we would’ve approved more care if we could, but the system won’t allow us to.”

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Care Packaging for the Blind

Until now, I always thought there were only five categories of care packaging within the Dutch system of long-term, residential care: developmental disabilities, mental health, physical disabilities, nursing home care, and some kind of weird system for youth with mild intellectual disabilities. I criticized the system for dividing people, especially those with multiple disabilities or disabilities that were left out, into broad yet rigid categories depending on their presumed needs. Because neither blindness, nor autism are explicitly covered under any of the packages, I always read up and down the care packaging user guides to find out how I could be fitted into the care molds.

Yesterday, I found out there is actually a care packaging user guide for the blind and partially sighted (and one for the deaf and hard of hearing), probably created sometime in late 2009. This means that we no longer have to fit ourselves into the physical disabilities mold, at least not if we have additional disabilities, because of course those who are “just blind”, are not eligible for support. However, it doesn’t seem like the disabilities have to be totally clear; if you have, say, behavioral problems, you can be eligible for care even if you don’t have an obvious mental illness.

Unfortunately, the description of the needs blind and visually impaired care users are supposed to have, makes little sense. At first, I thought: “What the heck am I reading? Is this supposed to be about my disability?” The care guide, even for people in class 1, says a lot about how people who are blind are supposed to may have “difficulties with tasks that require you to think, such as when you get information or when you have to remember something”. As far as I’m concerned, blind people on average have better memory than people without visual impairments. Of course, if you have an intellectual disability, this may be compromised, and as I said people whose only disability is blindness, are not eligible for care, but this assumption is not made about users in the subsystem for developmental disabilities. When will the care guide actually acknowledge that blind and low vision people often have difficulty accessing information? Even people with no known additional disabilities, may have difficulties carrying out certain organizational tasks due to their difficulty accessing information, for example, if they can’t read print letters. Yet nowhere in the care guide is this very common difficulty acknowledged.

The care guide does acknowledge the fact that most blind people have some difficulties with orientation and mobility, or at least need training in this area when they want to go to unfamiliar areas. For example, the guide says about users in care class 1:

If you go somewhere familiar to you, you usually don’t need help with this. This can be inside or outside. But it may be necessary that a support worker keeps an eye on you or says what you should do when you go somewhere outside. For example, if you go somewhere you don’t know the way around.

And, when referring to training blind users are supposed to get:

The staff teach you to memorize routes, so that you’re more independent when going places.

In addition to this, people in care class 2 are supposed to need help or assistance “sometimes”, rather than just being watched and instructed. By care class 3, the guide takes a pretty large leap, when it presumes:

When you want to go somwhere, you can do this reasonably independently. When you want to go somewhere outside, a staff member usually helps you. You may also need help if you’re in a space you don’t know well, or if you don’t know where everything is located.

Of course, most blind people have difficulty finding misplaced things or orienting in an unfamiliar room sometimes, so it isn’t like this is reserved for those who need someone to accompany them when going outside at most times. People in the highest two care classes, are pretty much presumed not to be able to go anywhere on their own. Some of these people may have mobility impairments (all care guides strangely presume that someone in a wheelchair can’t go places on their own), but I am not sure whether people who can’t go places independently for safety reasons, due to a developmental or psychiatric disability, are also included.

With regard to housekeeping assistance, the guide is rather strange. I alway assumed that if the care bureaucrats just acknowledged the reality that blind people exist and may need care, they’d make sure to provide domestic care. This may’ve been moved to the Community Assistance Act, but I think that goes only for people who don’t live in residential care. The care guide for people who are blind, further reinforces this belief, but not in the way I’d have liked to see it. Now here I may be insulting the stereotypical Competent Blind Adult, but most blind people I know, even if they don’t have additional disabilities and can live in their own homes with very little or no support, need domestic care. Well, the care guide creators don’t think so. People in care classes 1 and 2 are supposed to be able to do their own housekeeping and cooking, but the guide reassures them that they will get help with that:

So you do as much as possible yourself. That includes domestic tasks. You clean your own living space, if you can do that. Of course, you will get some help with that. You also help cook your meals.

I assume, given how little care time is allocated for people in these classes, that this “help” is restricted to a staff member telling them that they need to clean their room or apartment and checking if they’ve done it correctly. This goes especially for people in class 1 (to whom the quote above applies), who are supposed to get only between 5.5 and 7.5 hours of living care a week (people approved for day activities get more, but it isn’t like that time can be allocated to cleaning or cooking, is it?). I was at one point approved for 1.9 hours of domestic care a week, and that was only for cleaning my home once a week. I still had to do dishwashing, laundry and the like on my own, and, if my support worker hadn’t found time to help me cook twice a week (and I ate microwaved leftovers the rest of the week), I would’ve had to rely on meal services – and I have no clue whether those deliver to care facilities. I think people in care class 1 are better off living in their own homes and applying for a few hours of home support and domestic care at their local Community Assistance Act office. I am not sure how this goes for people in care classes 2 and 3, who are also supposed to do their own housekeeping and cooking with some help, but who clearly need more care than they would be approved for in their own homes. Only with care classes 4 and 5 is it made clear that you are only supposed to help with domestic tasks if you can. As a side note, of course people in these classes, are also supposed to need a lot of personal care. When do the Powers That Bureaucratize finally get it that people who can wash themselves, may not necessarily be able to clean and cook for themselves? Many people who are blind (and may have additional disabilities), don’t have the organizational abilities to carry out housekeeping tasks independently. It may be that we’re all supposed to work extremely systematically, so that we can memorize (if our memory is not compromised) what parts of the room or house we have already taken care of, but I actually don’t know a single blind person who does.

When we get to the highest care classes, I get confused as to which people they are applicable to. Care class 5, the highest care class within this subsystem, is called “Living with very intensive support and very intensive care”. This wording suggests that people are supposed to need both constant supervision and total care, as a result of a combination of severe physical and developmental disabilities. This is not what the introduction to this care class says:

You may have either of these two care needs: either you need very intensive support and very intensive personal care, or you need very intensive support, mostly due to your behavioral problems. If one of these two descriptions refers to you, then the package “Living with very intensive support and very intensive care” suits you. In the description of this package, we explain this separately.

What follows, is remarkably mild to the person with apparently such severe disabilities. In all other care guides, the “heaviest” classes are described in terms of “total care”, “doing nothing for yourself”, “extreme behavioral problems” and “danger”. In this care guide, people in the “intensive care” subsection of class 5 are not described in overly severe terms. In fact, it isn’t even required that you use a wheelchair in order to fall within this care class. It looks like at least the people who created this guide, acknwoledge that mobility impairments for the blind, can also result from other disabilities. Now let’s hope they’ll recognize this in the other subsystems, too, cause people who have, say, severe traumatic brain injury but who are not blind, may also need help with moving about even in their own environment. Anyway, when the guide describes these people’s need for personal care, it is not done in a demeaning way, as in the other care guides, which are full of crap about how oh so dependent you are. That is a good thing.

On the other subsection of care class 5, unfortunately, they compensate for all the relatively good terminolgoy in the first part, by calling upon pretty much every stereotype about someone with significant behavior problems. To my surprise, the description of what behavior problems would qualify someone for “very intensive support”, isn’t actually as negative as I’d expected:

You have many behavioral problems. Some also have addictive behaviors. Behavioral problems are for example: screaming or yelling, forcing people to do what you want, or compulsive behavior. Therefore you often need help, supervision or guidance. The behavioral problems can also appear in other ways. You may also have psychiatric problems. These are then usually clearly noticeable.

This language is derogatory, but it could be worse. What appears to be my own new care class in the mental health guide, which isn’t the most severe class that exists at all, uses more negative terminolgoy, and it is not because I am somehow deemed more severe. In fact, people in class 5 of the blindness guide are approved for significantly more care than people in the mental health subsystem who have similar behavior problems. This would’ve been logical, since most people in the mental health subsystem, are not blind. But not so: there is absolutely no acknowledgement whatsoever that blindness could be complicating a person’s care. Really, this care package is supposed to be suited to people whose so-called “primary disability” (ugh, I hate that word!) is blindness, but the prejudice about people with behavioral problems, is exactly the same as everywhere else, but the terminology is even worse:

You need little help with your daily tasks, such as the care of your own body. This also goes for eating and other daily things. It is mostly important that your staff stimulate you to do many things independently. And that they check whether this goes well. [...] Due to your behavioral problems, it is necessary that you get a lot of support. You can do many things for yourself, but due to your behaivoral problems, things can go wrong.

Excuse the very bad English; the creators of the original Dutch, are eligible for writing classes, since their attempt to make the guide readable, failed miserably. Anyway, all this “stimulating” stuff gives me the creeps. It suggests more than I’d ever seen in any other care guide, that “behavior problems” equal laziness. Really, with the increased prevalence of developmental disabilities and neuropsychiatric disabilities from conditions like traumatic brain injury among the blind, both of which can lead to behavior problems, it is quite likely that people with so-called “behavioral problems” are actually overstimulated easily. A good kick in the arse won’t help these people, and the simple fact that they may not have physical disabilities to explain away their difficulties, doesn’t change that. Really, I am disappointed. As a side note, I just found out that people in this subsection of care class 5, are actually expected to do their own housekeeping and cooking, with the same provision of “help” claimed for people in class 1. Only this time the care hours allocated may actually make it possible that domestic care or guidance will be provided.

I am really disappointed in this care guide. I had hoped that, if a guide for the blind and partially sighted were ever developed, the problems that a sensory impairment creates, especially if there are also other disabilities, would finally actually be acknowledged. Not so: if you don’t have physical impairments, you are almost always presumed to be able to do daily activities for yourself, except for maybe some orientation and mobility. Even though even mildly disabled people with visual impairments, may have difficulties with domestic care and organizational tasks that require access to information, if you can carry out your own personal care, all you are supposed to need is some “help” (which the hours you’re approved for are not enough for), “stimulation” and “guidance”. Have the people who created this guide, ever met a single blind care user, who could explain to them their real care needs? Now the one thing that makes me happy about care packaging, is that it isn’t up to the indication board, but up to you and your care provider, to decide what types of support you get within the limits of your care package.

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Falling Off the System: People with Mild Disabilities Hit Hardest by Budget Cuts

I will do another post on the effects of care packaging on the most profoundly disabled later, but I have to do more research for that. This post will be about another, totally different group of people left out by the current long-term care system: those assessed to have the mildest disabilities.

When massive budget cuts to long-term care were issued for 2009, I was convinced all year that I’d lose my funding, because they’re cutting everyone and seeing who complains. This is what my former home support worker said. During most of this year, I didn’t trust my social worker enough that I’d be confident she would appeal. I am not totally sure yet since I haven’t seen a copy of my indication myself yet, but now that my social worker said that my funding got actually increased rather than cut, I think that I am in a privileged position to have her file for funding. Many people in the community have to fill out the forms completely by themselves, with family, or with their main support worker, who isn’t trained to fill out long-term care application forms. Some organizations, like the organization I got my home support from, employ case managers to fill out the paperwork, but they usually won’t know the clients personally (at least, I never met the case manager involved with the home support team). Consequently, many people not trained in how indication officers think, fill out application forms incorrectly, believing they’re on the same page. The result may be much less support than they need, or no support at all. (Of course, theoretically speaking someone could be approved for more care than they need because of errors on the form, but I’ve never heard of this so far, and I assume the indication board is quick to fix such a problem.)

The budget cuts mostly affect support, both residential and at home. The move from more individualized indications to “care packages”, in 2008, probably had some impact on residential nursing care, too, but the 2009 budget cuts are not at fault here. Jet Bussemaker, the health secretary, defended the budget cuts by saying that support should go back to the people “it was originally intended for”. She illustrated this with a few examples of seemingly obvious misuse. For example, she mentioned a trans person who has been using care money to pay for counseling on how to find a romantic partner. In the pre-2009 version of the act, this was a legitimate reason to get support, on the ground of “psychosocial problem”; this sounds like abuse to people who think the act is only intended for long-term, residential care, but if you know what the act says, which Bussemaker obviously does, you’d know this was entirely legal. In fact, I think this sort of counseling should be available somewhere, and it should be as affordable as relationship counseling is for cis people. I think it now falls under social work, which is operated at the municipal level through the Community Assistance Act. This creates its own problems, but I’m not going into that now.

Anyway, “psychosocial problem” was kicked out as a ground for receiving support in 2009. This group, of course, does not just include trans people whose (presumed) only problem is finding a romantic partner (not to trivialize that, and we don’t know whether this person may’ve had other problems). In fact, I always assumed it was a garbage can category for everyone who had serious problems coping in life, but on whom a disability label could not be stuck. These problems, such as financial problems, housing problems, inability to participate in the community, social isolation, etc., are, of course, quite serious. Furthermore, can we be sure that the local bureaus, who are supposed to fill the gap through the Community Assistance Act, find everyone who is in such an isolated position, so that they can be provided social care? I doubt it very much.

People with only a physical disability, are also no longer eligible for support as of (I think) 2008. The reasoning is that they should be able to solve their own problems or find someone else to do it for them. That assumes, of course, that everyone who is only physically disabled, has a lot of family and friends who can provide them with the support they need, or is magically able to cope on their own. If they can’t cope, they’ll have to have a psychiatric diagnosis stuck on them before they’ll be eligible for support services again (as I said, “psychosocial problem” doesn’t count). Hopefully, the local Community Asistance Act officer, who will find funding for their wheelchair or other mobility device (presuming they use one and know how to apply for funding!), will spot that they’re not coping, so that they can be provided social services – and let’s hope they won’t be turned down by a social worker for being “too complex”. Ironically, the physical disabilities system of care packages provides its recipients with generally more care than people in any other subsystem.

I seem to remember I at one point listed the problems cut out of the list of reasons to get support with the 2009 budget cuts, but I can’t remember when or where. In any case, quite a few problems that to me sound serious, no longer qualify a person for support: guidance in domestic or personal care, participation in the community, and emotional problems like depression, anxiety or isolation. When I recently read a press release from the Disability and Chronic Illness Council evaluating the effects of the budget cuts, these problems were listed as precursors to self-neglect. The reasoning might’ve been that guidance in personal and domestic care, should fall under these functions rather than support, but apparently, people are not served that way. And apparently, emotional problems are not assumed to ever be a precursor to a mental breakdown, so that one has to wait until a person freaks out before support can be accessed.

When the budget cuts were originally announced, it was estimated that about one-third of all people receiving support then, would lose all their support after the re-assessment. I always assumed that the indication board would just cut everyone and see who complains. Naturally, the people receiving the least care, would fall off, but could these really be 60,000 people? I assumed Bussemaker believed intensive support isn’t “intended” for anyone, and I only got more convinced of that when I found out even people with severe, multiple disabilities got cut. Now I’m thinking this might be the result of the care packages rather than the budget cut itself, but I’m not sure. In any case, as it seems to have turned out, those with the mildest disabilities (or assumed to have the mildest disabilities) are hit the hardest. They are the people who live in their own homes, have family do certain things for them but who still have a pretty small network, who have to apply for services themselves or are dependent on untrained people to help them. The people who aren’t yet falling apart because they have support, but who could fall apart if their support was cut. This is not about a few cases where clearly other options exist to go for help once kicked out of the support system. Assuming they really are 60,000 people, I really can’t believe they’ll all be able to navigate the many systems that exist in the Dutch bureaucracy of care and social services.

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Does Intellectual Disability Make a Difference in Autism?

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.

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Cure Effects All Autistics, Or Why Ari Ne’eman Has Every Right to Advocate

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.

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The Disability Movement Never Promised You a Rose Garden

When discussing the social model of disability, people who won’t take it often point out that people with disabilities would still suffer no matter how accommodating and accepting the world would be. This is true, but is it a reason to reject the social model?

First, there is suffering that is really intrinsic in the disability, and that gets people to miss the equation with other minorities. For example, many physical disabilities come with chronic pain. Accommodations for mobility could improve that some, so that a person wouldn’t have to completely use up all their spoons by climbing a flight of stairs in an inaccessible building they really, really need to get into. However, it is quite possible that a number of people with physical disabilities would still suffer from chronic pain. People with epilepsy could be helped by an environment that wouldn’t expose them to seizure triggers, but they’d quite likely not be free from seizures that way. People with non-situational mental health conditions will be helped with acceptance of their “mad” behavior, but if a person is badly depressed or anxious, they will not magically feel well just knowing their illness is being accepted. There are probably other examples like this.

But it is a myth that the social model of disability rejects any disability-related medical treatments. There was a discussion a while ago on FWD/Forward, in which people listed the fantasy adaptive devices (interpreted broadly) they’d like to have access to in an ideal world. Many, including myself, listed drugs (I was calling for something that would treat mind-blowing overload, and kept the possibility open that this would be a drug): pain relievers, drugs that would treat chronic health problems like irritable bowel syndrome, anti-anxiety drugs, etc. It is all too easy to call these issues illnesses rather than disabilities, and kick them off the scope of disability activism. This is incorrect. You might be kicking off some distinct medical conditions, like IBS, but even that is unfair; not only can’t you split out a person’s different health conditions like that, but people with IBS certainly face discrimination and would benefit from accommodation (eg. extra bathroom breaks). Further yet, as I said, there are conditions that lead to the social impacts of disability as well as intrinsic suffering: I am not sure whether my autism-related overload is among these (in my case, it’s quite non-situational, but it is possible that a more accommodating environment would help with this), but a pretty obvious example would be a person with the aforementioned mobility disability that also causes chronic pain. It isn’t like a disability rights organization for their condition could say: “Oh, we’ll certainly advocate for wheelchair access to every building you have to enter, but go to a medical advocacy group if you want help accessing pain-relieving treatment. We are not for cures, after all.”

Of course, however, it will take forever for all of these appliances the people in the discussion called for, and all the others that are wished for by other disabled people, to be developed. It will probably also take a long while for the abled majority to stop obvious disability discrimination, and the world may never be entirely disability-friendly. In this sense, suffering will always exist. And before people use this as a reason to reject the social model and go back to the medical model: we will never be able to cure every possibly disabling health condition in the world, either. Even with the medical model, suffering will always exist.

And that is only speaking of the intrinsic, disability-related suffering. You won’t tell me that nondisabled people don’t suffer. Everyone could be in social circumstances that cause people who otherwise are entirely mainstream, to suffer: getting fired from your job in an economic crisis, getting divorced, being victim to some crime, etc. These are all major circumstances, that could lead to serious stress or in a few cases (eg. violent crime) even trauma. Of course efforts should be taken to lessen the risk of these events, and I know they are statistically more likely to occur to people with disabilities (and other minorities), but that isn’t because the disability (or other minority status) is to blame. There are countless smaller events that cause people to suffer everyday: parking problems, bad weather, job stress, minor financial problems, family annoyances, … These daily hassles have a significant impact on people’s stress levels, so it isn’t like you can brush them off. People who are not in any minority group, could suffer from these major or minor events, and no anti-discrimination advocacy could help. Only if the person these events happen to, is disabled or has a child or partner who is, the disability is often taken to be at fault.

Then again, is life supposed to be all easy and without any challenges? I don’t think so. Cure will not get rid of every challenge faced by a disabled person, either. In the Hannah Green novel, Dr. Fried has a reason to tell Deborah Blau, the protagonist: “I never promised you a rose garden.” The context of this scene involves Deborah actually recovering from her mental illness, and complaining that life is still hard. Dr. Fried is right here: life doesn’t get easy just by not having a disability. Why would it be any different if the barriers currently faced by disabled people to reach their full potential, were removed? I don’t think the disability rights movement will ever be able to get rid of all suffeirng endured by disabled people. If for no other reason, then for the simple reason that some suffering could befall anyone.

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Intersectionality, Multiple Disabilities and Comorbidity: The Whole Is More Than the Sum of Its Parts

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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Did You Know Many Autistics Do Not Live in Institutional Care?

Did you know that many autistics live in institutions, Harold Doherty aka @AutismRealityNB asks on Twitter. Yes, I do. Once again, I am not counting myself. This post is not going to be about me, so I’m not willing to elicit ad hominem arguments along the lines of “You have access to a computer so you aren’t really institutionalized” from people who have no real arguments. Besides me, many autistics who do meet the artificial criteria of “real” autism, and who don’t go on the Internet, live in artificially-defined “real” institutional care. I am thinking that the constant reminder that these people exist, is becoming an ad nauseam, since all Doherty’s Twitter followers will have seen that line a million times already. If we didn’t believe these people existed in the first place already – I knew about them long before I even had an Internet connection -, we will have been educated by now or we will never learn. I know about the many autistic people in institutional care. I have also stated my opinion that these people will not live long enough to benefit from a cure, but will benefit from appropriate, individualized care, many times already, so I’m not going to say more about that now, either.

Actually, what I want to write about now, are the many, many autistics who do *not* live in institutions, but are still as really autistic and in need of care. I realize I already wrote about these people last month, but was met with reality denying on the basis of stereotype violation: if you have a job, you must be able to feed yourself, etc. Now, today, I am talking about people who do not violate stereotypes. People who have no job, car or friends. People with a diagnosis of classic autism with significant communication and/or cognitive impairments. People who bang their heads against walls if left unsupervised. What other stuff have we got? Oh, they don’t go on the Internet, of course. This picture of a person is artificial, of course, but people who are like this, exist in real life. You’d think all who are really like this, would be instituttionalized? Maybe, if their reality was noticed by the powers that have the ability to arrange for institutional care. But there are many reasons why people otherwise considered really, truly, severely autistic by Doherty et al., may go unnoticed, maybe until they are seriously injured or dead.

Come to think of what it takes to get into the system at all. If you have a significant cognitive disability, you will not be able to navigate the care bureaucracy on your own – I can’t actually navigate the system myself, and I know more about it than some social workers. The system is quite complex, so people who have had little education, don’t speak the country’s dominant language, or have some psychosocial issues themselves, may be unable to help a severely disabled person get into care. Now come to realize that many, many family members of severely autistic children meet one or more of these criteria. Not all are skilled advocates who have the knowledge and resources to plan for their child’s future when they reach adolescence. Even in a system where those with severe disabilities will financially be enabled to get residential care through a socialized healthcare system, you will have to jump through quite a few hoops to get into this system. Maybe the doctor who diagnosed the child’s severe autism, is able to make a referral, but this is not at all guaranteed, given that many doctors are entirely unfamiliar with the long-term care system. Maybe educators can help, but if a teacher walks you through the process of getting your child on a waiting list for residential care when they’re thirteen, they won’t come back to help you with the transition once a place is opened when the child is 23 (or 33, or 43…). Not just because aranging for adult care is not a teacher’s job, since even case managers and social workers, whose job this is if the parents are able to reach them and clarify their need for help, will regularly change jobs. It is possible that people who have psychosocial issues or disabilities, don’t speak the country’s dominant language, and/or are in a low socio-economic class, are not in the position to navigate the many curves and turns the care system takes over the course of their severely autistic child’s lifetime. It is hard on parents who are privileged in all of these ways already.

Here, I am assuming that every autistic has parents who would support them in navigating the care system if they had the skills and resources to do so. In reality, many autistics are not in this position: autistics who live in foster care (but then again maybe you could argue that they are already in “the system”, althugh I have no clue how well these different parts of “the system” communicate), autistics whose parents are illegal immigrants or stuck in the endless procedure of refugee status application (no, the immigration system does not have mercy if you have a child with disabilities!), autistics whose parents are incapacitated or die when they’re still young or stuck on waiting lists… All of these autistics, and I probably forgot some, are at high risk of being lost to the eyes of the system or never being seen at all.

In countries which lack socialized healthcare, like the U.S., financial barriers are another factor, putting hugely more autistics at risk of remaining invisible to the eyes of the care world. Waiting lists may be as long as twenty years for state residential care, which only the people with the most profound disabilities will have access to anyway. Score one point too high on the artificial, arbitrary scale of “functioning”, or be perceived to score one point too high, and you’re out of services. It isn’t just the stereotypical “high-functioning” and “Asperger’s” people who advocate neurodiversity on the Internet, who are lacking in much-needed services. People with moderate cognitive disabilities, who can communicate with PECS, or who don’t quite self-harm every single day, may also be lost to the system. And then I’m not even talking about people who may be able to communicate with speech, have only a mild intellectual disability or normal IQ, and not display many problem behaviors at all, but who surely need help because they otherwise can’t take care of themselves. I have lived with people who are like this, and am worried how some of them turned out. Again, for the sake of this argument, I will presume that all of these either don’t go on the Internet at all, or want a cure, because I know that Harold immediately classifies people in a more low-functioning, in-need-of-care position by the simple merit of wanting a cure.

Other autistics get kicked out of the places they live in, or become homeless when their parents die. Any homeless person is often lost to the public eye, and homeless shelters are underfunded and overburdened. It could be that the situation is slightly better for those with severe, obvious, pity-eliciting disabilities, like our stereotypical LFA person, but chances are still fairly great they won’t really be noticed. Even if they get picked up by police almost on a daily basis, there is only so much that can be done. They might end up being dragged into an institution for emergency care, but all the financial and bureaucratic complications start kicking in if a long-term solution is to be found.

Remember, again, that it is nothing intrinsic in all these people’s “functioning level” that causes them not to be in institutional care. There are many reasons why autistics – and of curse people with other disabilities, too – are invisible to the public eye, autism advocacy, and support agencies. Please acknowledge their reality. They won’t benefit from cure debates. They will benefit from being noticed, taken seriously, and provided with the services they need. Stop ad nauseam references to institutions as a pitiful example of how bad people have it. I alread know. Severity of autism doesn’t necessarily dictate whether you end up in an institution, get appropriate or inappropriate community services, or end up homeless or living without any services at all. Taking a wrong turn somewhere on the path through the care bureaucracy, without any fault on your own part, can make the difference.

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