Vincent Bijlo, White Cane Usage, and the Burden of Defeating Stereotypes

In a recent TV show in which he appeared, Dutch cabaret perfomrer Vincent Bijlo apparently showed a dislike for use of the white cane. On Twitter, people are debating whether this has to do with him accepting or not accepting his blindness. At first, I commented that I, too, have an issue with the white cane which is somewhat related to trouble accepting blindness, but that I didn’t want to judge Bijlo’s reasons for not using a cane.

Someone pointed out that Bijlo is making himself rather vulnerable by talking about his blindness in his performances, so it is hard to find evidence that he doesn’t accept his blindness. This is true: you may like his shows or not – I for one have gotten used to them by now -, but he is rather open about his blindness.

Also, there may be other reasons for not using the white cane as often or as properly as should. I for one find it very hard to use the cane properly, and, while I do use it off institution grounds and don’t have a problem with this, I do prefer to walk sighted guide. This has nothing to do with my not wanting to look blind. In fact, I’m well aware that, as I walk sighted guide, I look more stereotypically blind than if I learned to use the white cane properly. But so what? I don’t need to look like the superblind person I am not.

And it is quite common knowledge that Bijlo is not superblind. Why should he be? Because he is a performer and sets an example for other blind people more than others do? Well, I have never felt that it is blind people’s responsibility to make sure sighted people don’t have stereotypes. And even if it were, it wouldn’t be our responsibility to defeat all stereotypes at once. In fact, it is known that this doesn’t work. And Bijlo, of course, does belong to the 25% of blind people who have a job. I don’t think he needs to bear the burden of defeating other stereotypes just because he is well-known. I do see that the sighted are seeing Bijlo as the poster puppet for blind people in the Netherlands, but as a blind community, we shouldn’t be reinforcing this.

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Psychological Report

Last week, I received a psychological report by someone from the Center for Consultation and Expertise, which gets involved when long-term care agencies can’t handle complex care needs, like apparently mine is. The consultant psychologist had spoken to me and my team, and had administered a few psychological questionnaires. She had also analyzed the information that the institution keeps on file about me, which has a summary of my history and parent perspective (from the parent interview part of my autism diagnosis in 2007). She would’ve wanted to speak to my parents – although she never asked me -, but neither I, nor my parents would likely feel like that.

The report said some things about me that I didn’t know or remember. In the summary of my history, for example, it said that I was sometimes physically aggressive towards my mother as a young teen. I thought I was only physically aggressive at a much younger age, and was verbally aggressive as an adolescent. Apparently not. Makes me feel quite guilty.

There are also pretty harsh words about the painful experiences I’ve gone through. I won’t quote them here as they’d reveal the nature of my experience, but they are much harsher than those I’d spontaneously use myself. I know where they came from – I said “yes” when questioned -, which makes me feel rather guilty as well. Is that survivor guilt or is it something else, like truly being ashamed of exaggerating? I sometimes feel that I’ve been dragged into this by suggestion. I have some vague memory of being questioned about sexually inappropriate behavior (which I didn’t go through apart from a few minor incidents at about age six and twelve, by the way) and other trauma way back in late 2009. I never told lies about what I’ve experienced, but maybe its consequences, like the DID and PTSD symptoms, are exaggerated.

That was also what the report talked about: PTSD. As I wrote last Sunday, I checked its criiteria in the DSM-IV and unfortunately may meet them. It was not assessed directly, but my team considers me to have its symptoms, and my personality profile and other scores on questionnaires are consistent with it. ON Tuesday, I realized that I sometimes lose time for when I have a flashback, so that could explain why I feel it’s pretty minor. By the way, my dissociation was hardly discussed, but that may be because its full reality didn’t come to my team’s mind until into the assessment process.

Lastly and most annoyingly but least surprisingly, the consultant questioned my autism diagnosis in favor of believing my social problems are due to my blindness. That is at least what I read between the lines – but I’m known to read things between the lines that aren’t there. Her expertise is in blindness, so it is not surprising that she’d attribute social problems to blindness. She had some things about my hsitory wrong and incorrectly assumed I’d been living mostly in a sighted world, while I’ve been in special education for half my school life. However, the assumption that I’m unable to read non-verbal communication, is of course correct. I would assume that this possibility has been considered at my 2007 diagnosis, and at least I explained about it to the psychologist back then. So did my parents probably, being that they assume that all that is wrong with me, is blindness. All tests she administered – AQ-test (again!), Dewey Story Test (measures social insight) and some semi-structured interview -, indicated I’m on the autism spectrum. I scored higher on the AQ-test than back in 2007, which I attribute to my reduced social contact. It is also apparent that I’m easily overwhelmed and have trouble organizing stuff. So the consultant concludes that I’m on the spectrum after all, and my nurses reassured me that no-one is going to take away my diagnosis. Would be a problem if they did, since then I wouldn’t be able to go to the workhome. By the way, the consultant also briefly mentioned adaptive problems, but I’m not sure whether these are attributable to my autism, blindness or both.

The recommendations are pretty vague. Go on with treatment for my difficult experiences, and work on my self-acceptance, or something. I’m also supposed to need “intensive care”, due to the complexity of my problems. What this means, is not clarified, and, in the Dutch system, this could mean a lot of things. However, the head nurse is pretty confident that I can remain in my current care class – two classes higher than the one I was in in 2009 – when my funding needs to be renewed at the end of this year. One is supposed to work on my independence, but without me losing support in the areas that I need it. This seems obvious, but, according to the report, I’ve been overburdened a lot in the past, and I am clearly afraid of losing needed services.

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On Being Gifted and Disabled

I am what is politically correctly called twice-exceptional: intellectually gifted and disabled. The combination of these qualities has thrown me for quite a few challenges in my life. Mostly, it is impossible for most people to see both my intelligence and my disabilities, so they expect me to be either gifted or disabled, not both.

My parents expected me to be gifted. They couldn’t deny my blindness – if they could, I’m almost certain they would have -, but they could minimize its impact and deny my autism. I was fine with that as a child, being quite poorly adjusted to my blindness and assuming my autistic behavior would go away as I grew up. So I learned to present as gifted, as genius. I calendar calculated aloud at family gatherings, and liked the praise I’d get.

The people at my schools for teh blind expected me to be disabled. I’m not sure how they managed to deny my academic ability, but for some reason, they denied it. I still remember in sixth grade the principal calling my parents in ecstasy about my high standardized test score. My behavior problems, daily lviing skills delays, and poor adjustment to blindness were magnified, and my academic achievement failed to impress my teachers.

The education system in the Netherlands is not equipped to meet the needs of people who are gifted as well as disabled. I – or rather, my parents – had to choose between an academically challenging education and a school for the disabled. They chose an academically challenging education, and found a psychologist willing to recommend mainstreaming at last. I struggled at every level other than academics, but till this day, my parents maintain that is normal.

The higher education system is theoretically equipped to meet the needs of those who are gifted as well as disabled, but as soon as you don’t fit into the standard programs, you are too difficult. That’s how I failed college twice.

Anotehr misconception that haunts those who are gifted as well as disabled, is the idea that intellectual ability is the same as being high-functioning, or that you are able to compensate for disabilities by being very smart. This misconception leads people to believe that I am either not truly intelligent, or can live independently without difficulty. Well, I wonder what academic intelligence has to do with housekeeping skills.

I internalized a lot of misconceptions about the twice-exceptional. I till this day struggle with believing I must not be smart because I failed university and independent living, or I must be able to go back to university and independent living because I am smart. In reality, my disabilities at this point prevent me from doing these things, although we can never be sure what the future will hold. That does not mean I’m not intelligent.

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Canadian Government Fights Court Battle Not to Make Websites Accessible

I am not a Canadian, but this astonishes me. The Canadian governmnet is fighting a court case in order to not have to make its websites accessible for screen reader users. Anna over at FWD?Forward has extensive coverage. I am as surprised as she is that the government is willing to pour taxpayer money into this case rather than putting that same money into making their websites accessible. Speak of cost-effectiveness, for once. Three million Canadians are blind or partially sighted, so this court battle is not just about the person who started it. Three million Canadians will benefit if the government stops its efforts to fight a court battle and pours the money saved into accessibility projects.

Anna is calling onto Canadians to E-mail their MPs. I am not a Canadian, so I cannot do that. However, I can echo her request to all contact your MPs and let them know what you think. Anna has a sample E-mail you can use.

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On the Medicalization of Safety

There’s been a lot of discussion about autism as a health hazard, due to autistics having an increased risk of dying in accidents. An example involves the autistic man who died in a hot van a few weeks ago. Rather than blaming a careless caregiver who locked him in, it is reasoned that a non-disabled person could’ve unlocked the door, broken a window or screamed for help. Hence, had this young man not been autistic, he would still have lived, so his life is “lost to autism”.

Ironically, I have never seen similar notions about blindness, when in fact blindness can pose safety hazards, too. If a blind person is injured or killed in an accident, most of the time the circumstances are blamed. For example, people call for audible traffic signals when a blind person is hit by a car – and when they don’t, it is because audible traffic signals do not always make the situation safer. Sometimes, blind people who call themselves more competent than the deceased/injured person, claim the person hit by a car had poor mobility skills, which is an extremely offensive and ableist comment. Never do you hear: “If the person could see, this wouldn’t have happened.”

Note that I have nothing againtt focusing on how we can keep people with disabilities safe. This includes training the individuals to navigate the world as safely as possible, and it includes accommodations to make the world safer for these individuals, such as audible traffic signals for the blind and supervision for individuals with developmental disabilities.

What I do have a problem with, is the medicalization of risk. Specifically, the blamiing of accidents on the individual’s disability, is centering non-disability rather than the concept of safety. I don’t care whether a disabled person could’ve done something differently that could’ve saved their life if they weren’t disabled; they are who they are and we need to make sure they can be as safe as possible.

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Passing for Less Disabled

Chally at Zero at the Bone has a post up about invisible identities and the effects of passing. Passing is the active or passive quality that gets people in minority groups to be perceived as part of the dominant group. Examples would be someone with an invisible disability being passed for abled, someone in a racial minority being perceived as white (in a whitecentric society, of course) and someone who is trans or non-binary being perceived as having a cis gender identity.

Because I belong to the dominant group in many of these areas, the only situation in which passing is relevant for me, is disability. In my experience, it does not involve passing for abled entirely, but passing for less disabled than I am. This means that I at once still faced some disablism, and escaped a hell of a lot of it that I would encounter once no longer passing.

Passing is a complicated matter, and, when it is “imcomplete”, it gets even more complicated. Passing for partially sighted when you are blind, for example, gives you just enough sighted privilege to be excluded from or treated like a supercrip by the blind community, but not enough sighted privilege to be even conditionally fully included in the sighted community. It has an advantage in the blind community, where the hierarchy of vision rules. I, apparently, at one point eagerly participated in the competition of sight, although I never made it high on the hierarchical ladder. I would have to consider this a form of internal disablism, and it includes the same sterotyping, marginalizing and exclusionary practices that all people perceived as disabled face from a dominantly abled society, and the same privileges awarded to people who successfully pass for whatever is deemed the “standard” within this disability group. Among the blind, this depends on which exact community you participate in: in certain blind organizations, the totally blind, especially if they have superblind qualities (ie. perfect mastery of alternative techniques and/or fabulous accomplishments), stand highest in the hierarchy, while at my former schools for the blind and at the rehabilitation center I attended, those with the most vision were always dominant.

Within the field of disability, people who have one disability are also privileged over those who have multiple disabilities, and, again, passing awards you privilege. There is, in this sense, again a lot of internal disablism, with some of it motivated by malice, some more by inconvenience (“We don’t have enough time to advocate for people with multiple disabilities.”), and some stemming from ignorance about the reality of people outside one’s own narrow scope of specific, single disability. Before any singly-disabled person objects that they aren’t the Big Bad Oppressor, I’m not saying that. In fact, I myself at least used to be guilty of this same form of disablism, in some pretty nasty ways, such as my bullying a girl with visual and intellectual impairment for her “dumbness” in elementary school, and I’m likely still affected by stereotypes.

However, let’s face facts: advocacy groups of disabled people tend to focus on people with a specific disability, thereby being more successful in fighting for barrier removal for and against discrimination of people with that specific disability, sometimes on a conditional premise that people with that disability can accomplish the same achievements as non-disabled people if given proper training and opportunity. This premise, of course, excludes people who do not meet these standards, which are more likely to be people with multiple disabilities. But even if a disability advocacy group does not set exclusionist standards for representation, people with multiple disabilities will still have a harder time being heard, simply because they make up a minority within the minority. That way, disablism rooted in ignorance may occur: the advocacy group simply didn’t think of advocating for the needs of people with multiple disabilities, or lacked the resources to know how to advocate appropriately. Therefore, barriers are kept in place that may have been struck down for those in the single-disability movements.

Passing helps a lot in such circumstances. For example, I would never have graduated from, and may not have been accepted at my high school if I weren’t passing for neurotypical. Inclusion, at the time, was voluntary in the Netherlands, and even now that there is legislation promoting it, those who are somehow “too difficult” can still be excluded. I bet a dual disability of blindness and autism falls under the category of “too difficult”, but because I passed for neurotypical, I was accepted. In this sense, passing has its advantages.

Like in any other situation where passing is involved, however, it has its flip side, too: the privilege awarded to those who are passing, is conditional. You will only be privileged as long as you pass. This puts a huge burden on the person who is passing: if they no longer pass, they will not only lose the benefits their passing privilege awarded them, but they also run a risk of being shamed, blamed and offended for no longer passing, even if they never made a choice not to try to pass anymore (or if they’d never been trying to pass in the first place, but had been passed by others anyway). For example, when I passed for neurotypical, this was seen as a good thing by non-disabled people (and most blind people), and increasingly having been unable to pass has led some people to be pretty hostile towards the fact that I’m not “just blind”. This started long before my autism diagnosis, by the way, sometime around 2003, but the autism diagnosis, and the fact that I embrace autism as part of my identity, hasn’t helped. Maybe, of course, I would’ve been better off if I had equally embraced my autism but hadn’t been institutionalized. I am not sure about that though, since the people who now despise my autistic identity, did so when I still lived on my own, too.

Related to the blaming of people who used to be passing but no longer do, is the assumption that passing or not passing is always something intrinsic to the person’s own characteristics or choice: either your disability has gotten worse so you can no longer pass (for example, if you start using a low vision aid because you can no longer read the newspaper without it), or you have chosen not to pass anymore. The first is usually more acceptable than the second, although which is which cannot often be objectively assessed. For example, if someone gets a terrible headache and eye fatigue from reading the newspaper without a low vision aid and it takes them twice as long, this could be perceived as either a matter of the visual impairment becoming worse, or as a willful choice not to put effort into reading newspapers. However, as Chally also points out, this view of passing as internally generated fails to acknowledge the fact that it’s the non-disabled people who decide what passes you. For example, if you visibly struggle to read the newspaper but are not using a low vision aid, some people may think you are visually impaired, but some may also think you are just a slow reader, forgot your reading glasses or need a new prescription (and the need for reading glasses is not usually perceived as a disability), or even that you are willfully annoying them by readind the paper that slowly. Some people may not perceive someone who uses a low vision aid as visually impaired, while some may recognize the device and decide that the person must be visually impaired since they are using it. This subjective view of what is and is not perceived as a sign of disability, is even more prominent when talking about mental or neurological disabilities or invisible chronic pain conditions like fibromyalgia. Pain may not be seen, if the person is trying not to complain, and even if it is seen, people may automatically attribute it to the wrong causes, or assume the person is exaggerating. Autistic behavior may be viewed as a sign of disability, as a sign of wanting to annoy other people, as “just weird”, or as something indicative of a presumably positive trait, like perseverance or intelligence. These attributions are not inherent in the person’s level of disability or the disabled person’s choice to pass or not to pass. They are other people making these attributions, after all. The disabled person passes because somene else perceives them as non-disabed, not because they themselves wear a sign that reads “I Am Not Disabled”.

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Why Won’t My Bank Install Talking ATMs?

I came across an ATM machine today. The machine, like most ATM machines in my city, had braille on its buttons. Each button was marked with a number from 1 to I don’t know how many; in fact, for some reason whoever put the braille on the ATM had been very careful to include the wholly unecessary number sign (does it matter after all whether the buttons are called 1, 2, 3 or a, b, c?). You may think I was thrilled, but to tell you the truth, I was not. The people who put up these braille marks on the machine, obviously didn’t speak to a representative of the blind, since if they did, they’d have known that these numbers don’t make sense even to some persons who read braille, and that 90% of blind people don’t read braille anyway. That figure is a problem of course, and I am all for braille literacy, but those people will not suddenly learn braille just because the banks don’t care to accommodate them.

I still can’t use an ATM machine fully independently. It’s not that I was never taught, but just after I memorized the sequence of buttons I had to press to get a certain amount of money on my own bank’s ATM, the configuration was changed. I think it has been the same for a few years now, so I could make an effort to memorize the new sequence (except that I now use the preset amount of money buttons and I was taught to always click the “Other amount” button and then type the amount of money I wanted); of course, the configutation will be changed again as soon as I do, but oh well. In fact, I think I have it pretty much memorized now. Still, I keep asking someone (usually my boyfriend, since I can’t locate the ATM machine independently anyway) to read the screen in case there is a (minor) bug, such as them not being able to print a note (which I don’t want anyway), which will mess up the sequence of buttons I’ll have to push. Besides, what if I accidentally request the wrong amount of money and don’t notice; if it is too little, that is not a big deal cause I could operate the machine again (provided it’s my own bank’s ATM), but what if it’s too much? If I try to access more money than is in my bank account, the ATM will give an error I can’t read, and if I request a large amount that happens to be in my bank account, the ATM machine will prompty provide it.

Then, of course, all banks are free to operate whatever configuration they want on their ATM machines, so if I memorized my own bank’s configuration, I could only take money out of my own bank’s ATM machines. Of course, forget about getting moeny out of a German ATM in case I’m in my boyfriend’s city.

The problrem is easy to solve: provide talking ATMs. That way, the problem of the 90% illiterate blind people who are absolutely not helped by braille on ATMs, will be solved. So will the problem of having to memorize which sequence of buttons to push, since I may have the memory capacity to do so, but many blind people do not. There will still be accessibility issues, of course, for example, for people who are deafblind. I cannot think at this point how these people could be accommodated, but I think it best that one get in touch with a representative of the deafblind for guidance on that. In any case, I am pretty sure that if whoever is in charge of ATM machines (my bank, I guess) had talked to a representative of the Dutch Association of the Blidn and Partially Sighted (NVBS), they’d have informed them about the need for talking ATMs; and maybe they’d have told them that, of course, braille marking doesn’t hurt, but it isn’t the fabulous way to accommodate the blind. Maybe if I really wanted to use an ATM machine independently, I could work myself around the accessibility issues, but as I said many blind people cannot. Are we supposed to rely on someone else (presuming we have a relative we trust) to help us access our own money for the sake of whatever keeps my bank from installing talking ATMs? Cause it isn’t that they don’t exist, or not in the Netherlands, or that it is difficult to install them. I was really inclined to believe that my bank was aiming to show that they were “doing something for the poor, blind people” to the majority of people, who don’t know that they are only helping at most 10% of those blind people.

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Sighted Privilege Checklist

So, I’m sort of in the mood for privilege lists, and since the generic Able-Bodied Privilege lists are not really suitable, I guess I’d do a Sighted Privilege list. I have generally taken privilege lists with a good bit of humor, so I recommend you do the same for this one. If anyone has any other points, let me know.

• People rarely ask me how much I can see. The occasional times they do, they are usually visually impaired people reciprocating a question I ask.
• My visual acuity is not used in a metaphorical way to describe some form of fundamental misconception about the way the world works.
• I am not assumed to be free from any prejudice or other vice merely because of my visual acuity.
• People don’t attribute spiritual gifts to people based on the fact that they’re sighted.
• All forms of printed information and most forms of multimedia are created with people of my visual acuity in mind.
• If I need or want to read a particular book, it is usually no problem for me to access it through the library system or bookstore in a format I can readily use, even if it may take a while to retrieve a book not available at every library or store.
• I can be assured that I can read my mail without inconvenience or an infringement to my privacy.
• I never missed classes or failed a grade because of unavailability of accessible instruction or testing materials.
• People don’t peer at my computer or books when I’m using them or watch me as I do daily activities without my permission. If they do, I am allowed to object, and people won’t expect to be excused for “just wanting to know how sighted people do that”.
• If I don’t play a particular musical instriument, or any musical instrument at all, I am not asked why, “because [well-known musician] is sighted like you and he/she/xe plays [instrument].”
• I don’t overhear random strangers discussing the superior cognitive and sensory abilities I assumably use to “compensate” for my visual acuity. In fact, I am not assumed to “compensate” in any way at all.
• It is not assumed that my visual acuity will repeal to people I’m attracted to. If I am in a relationship, it is not assumed that my partner is somehow heroic for wanting a partner with my visual acuity.
• The genetic basis of my eye condition is not assumed to play a role in my decision whether or not to have children.
• If I don’t have a college degree, it is not automatically assumed that my visual acuity is the reason. Other peopel of my visual acuity also won’t accuse me of having internalized low expectations or having a bad attitude about being sighted.
• If I apply for a job, whether I get hired will not usually be related on my visual acuity.
• I am not pressured to pursue a career that values visual skills “to make use of my typically sighted strengths”. If I do decide to pursue such a career, it is not assumed that I think I need to pursue that career because of my visual acuity.
• Each time I go to the hospital, people will not automatically direct me to ophthalmology whehter I need to go there or not.
• Doctors will not deviate from the standard protocol of a medical procedure merely because of assumptions aobut the implications of my visual acuity.
• If I have minor or major mental health problems, they are not automatically assumed to be due to my visual acuity.
• When I make a mistake, embarrass myself in public, or need help, I don’t have to worry that I am giving people a bad image of people with my visual acuity.
• If I am an adult, chances are fairly high that I will have a driver’s license. If I don’t, it is not because of my visual acuity.
• I am usually able to travel in unfamiliar areas with relative ease, because visual guides, maps and signs are widely available.
• If I get lost and am trying to reorient, people won’t steer me towards wherever they believe I need to go.
• I am not expected to be grateful for whatever other people think they need to do to “help” me, whether I want it or not.
• People will usually not touch me without permission. If they do, it is considered offensive by other people.

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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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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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