Posts Tagged ‘Blindness’

I went to the oral surgeon today to have a wisdom tooth removed. Well, in all honesty, Dr. D. and his resident (or that is, I am assuming she’s a resident) are eligible for some much-needed lessons in disability awareness and much more general communication skills. It was bad.

As I went in, I was feeling presumably normal preoperative anxiety plus a little sensory overload. Despite this, it seemed that the procedure started out as it should go: the medical assistant took me into the operating room, guided me to the chair, and told me I’d be getting some anesthetic injections into the mouth first. The first disability stupid thing that happened, was her asking me: “Can you talk?” Her tone of voice indicated a mixture of annoyance and condescension. Well, I am verbal, but I’d been so overwhelmed that my speech was less than optimal. She couldn’t have known this, of course, since I haven’t actually told these people that I’m on the autism spectrum. However, what would have been done if I’d not been able to talk, for whatever reason? What happened during the remainder of the operation, where I don’t think you’re supposed to be quite chatty due to doctors having their instruments in your mouth all the time, indicated that quite likely they’d pretty much just have guessed me not to have anything to say anyway. During a particularly uncomfortable part of the procedure, someone asked: “Are you okay?” and, after I didn’t respond – how was I supposed to respond? -, immediately filled in that I was. I fill in that this means she wasn’t interested in an answer.

The operating room was, unfortunately, quite overloading with background music and surgeons talking at the other end of the room. They eventually turned the music off, and maybe they would’ve done so earlier if I’d asked, but I wasn’t able to communicate all that effectively at that point. As I laid in the chair awaiting the local anesthetic, I got increasingly anxious and overloaded. Add to this the discomfort from the anesthetic itself – to my surprise, it wasn’t even too painful -, and you can imagine that I was quite unquiet. As a side note, I don’t normally have dental phobia, but the entire overwhelmement of the environment, oh my.

Dr. D. was going to decide all over again which side he was going to operate on. I thought Dr. V., whom I’d seen on Monday for the preoperative consultation, had decided the left side would go first. (For your information: if you are uncomfortable with a new doctor at every new visit, I don’t recommend you ever get anything done at St. Radboud University Medical Center’s orofacial surgery.) Apparently, not so: Dr. D. took a look at the X-rays already looked at extensively by Dr. V., took another look into my mouth, and decided the right side would go first. I got worried, since Dr. V. had been ambivalent about that side. Specifically, she’d not been sure whether the upper wisdom tooth would have to be removed, and this had seemingly been the reason she’d wanted me to get the left side (where both teeth need to be removed anyway) to be done first. What would be happening to my right upper wisdom tooth?

As I said before, there was some kind of resident in the room as well. She didn’t introduce herself, so at first I assumed she was the medical assitant who had already introduced herself – I don’t recognize voices immediately, but people seem to assume that I do. However, medical assistants aren’t supposed to be operating, are they? I’m pretty sure I found her performing pretty much all of the procedure. If she was a resident, I think Dr. D. ought at least have told me that he was going to have her take part in the procedure. Now I got even more confused: was this woman going to operate on me, or was Dr. D.? During the operation, I was hearing many things that would be good candidates for the “Things You Don’t Want to Hear During an Operation” list. Dr. D. and the woman-who-didn’t-introduce-herself were hardly talking to me, despite the fact that they knew I would hear them (the humor list presumes doctors think you’re under total anesthesia), but they were talking to each other all the time. Now I must say, I didn’t understand any more from what they seemed to direct at me than I understood from their communication amongst themselves. I seem to have made out that they were debating amongst themselves which kind of stitch to give me, but I’m not so sure about that, and I seem to have made out that I was instructed to keep some kind of weird-feeling thing in my mouth for half an hour, but I couldn’t make out what it was or how I was supposed to keep it in its place.

Their entire communication sounded like I was not supposed to have anything to say anyway. Before the instruments were stuck into my mouth, I overheard either Dr. D. or the woman saying that I wouldn’t need an operating sheet over my head and eyes, since I woudln’t be bothered by the operating lamp anyway. How do they know? Maybe now I realize what relevance Dr. V.’s question last Monday whether I am totally blind might’ve had – I usually take this to be unwarranted curiosity. I’d been unable to talk at that time and the nurse who was with me might’ve said yes. Now I do have light perception, and a lamp that might already hurt a sighted person’s eyes so badly that they’d be sleepshaded for comfort (that’w what the flyer says), would certainly hurt my eyes. This became quite obvious when the light was shone seemingly almost directly into my eyes, without sheet, of course, since the people had decided I wouldn’t need one. I tried to protest, but couldn’t get the words out. I hid my face under the large operating sheet that covers your entire body for hygiene reasons, and was told that of course they wouldn’t be able to reach my mouth that way. I knew, but how else was I going to protect my eyes? They finally asked if the light bothered me, and I was eventually able to say it hurt. They then gave me the face sheet anyway. Honestly, why won’t you just ask a person before deviating from regular practice? The flyer said clearly that you’d be given a face sheet to prevent being blinded by the operating light. If I’d not had light perception, and had felt that the sheet, if used for no other reason than eye comfort, had better be left out, I’d have made this request. There is no reason to think for me like this.

As I was relatively comfortably covered under the face sheet and the anasthetic had started to kick in, the operation itself went relatively comfortably. I didn’t really mind the fact that I was not told what they were doing, but I got confused by what they were saying to each other and the occasional word directed at me. When the lower wisdom tooth was removed, the upper wisdom tooth debate started. I was somewhat able to follow it, but I tried not to listen and just let them make the decision, although all the back-and-forth chitter did make me quite confused. I was eventually told that they’d be removing the tooth to prevent it from hurting something (I seem to make out it was the lower gum it might start damaging, but I’m not sure). Oh, fine with me. But then Dr. D. turned to the X-rays once more and changed his mind: since the tooth beside the upper wisdom tooth is quite badly damaged from caries, he feared it might break off or need to be removed someday, and the wisdom tooth, that looks alright, would then be able to replace the other tooth. Also fine with me; by this point, I was entirely unable to follow anything that was going on and would have it either way. There is still a small chance that it’ll have to be extracted anyway, but if I understand Dr. V. correctly, the dentist would be able to do this.

When I went back into the waitign area, my nurse was given a script for mouthwash. I am not sure when I’m supposed to start using that, since the woman also said I wasn’t supposed to rinse my mouth for a while (maybe today?). I was also told that I could be taking paracetamol (Tylenol) as a pain reliever, even though Dr. V. had prescribed ibuprofen and I’d actually already taken one of them before going in, as recommended by Dr. V. (As a side note, for some reason I got ibuprofen in water-solluble powder form, and the manufacturer made a horribly failed attempt at making it taste like orange – yuck!) That was fine with the woman too, although it’s stronger than paracetamol. At this point, it’s six hours post-operation, anesthetic has worn off, but I’m not having any pain and haven’t needed any more ibuprofen. However, lack of physical pain is clearly not the only determiner of a procedure gone well.

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Joel of NTs Are Weird wrote about a federal court decision that mandates the Social Security Administration to send letters in accessible formats to people who are blind. I honestly wonder what the different associations of the blind think of this. After all, I think it is reasonable that a government agency, that sends out privacy-sensitive information, would send its letters in a format that the recipient can read independently. Is it reasonable to expect blind people to have readers read their SSA paperwork to them? I have my social worker do this, but this already sometimes leads to problems, for example when she quickly scans the letter and then tells me what she thinks it says I should do, rather than reading the letter aloud and only then, if I can’t interpret it independently, helping me make sense of it. Now my social worker knows about the benefit system, but what if someone unfamiliar with the system went on to “interpret” the letter for me rather than reading it? And that’s only when I assume that whoever I were to choose to read my mail, were trustworthy. Besides, even if a reader is trustworthy, they still could be using the information against you, for example, if they wanted to use it to “prove” that you can’t handle your own finances – and you don’t have to be a financial disaster to get that thrown at you.

Of course, people can read their letters independently, if they scan them using OCR software. This can be a lot of work if you’re not good with technology, but it can be done. However, it will likely lead to unnecessary delays, since blind people will have to scan and read all their mail before they can tell what is important: they can’t see that this is an urgent SSA letter and that is a letter addressed to the person who lived in the home before they moved here three years ago, but who never changed their address (a considerable portion of “my” mail!). I think it is really more efficient even for the SSA to convert letters into accessible formats with simple text-to-speech software and a braille printer, than to deal with the problems resulting from blind people either not noticing that they got an SSA letter, not reading it, reading it with a delay, or misinterpreting it because their reader made a mistake.

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This is how the system works, apparently. I called an Apeldoorn placement I’d been offered a few weeks ago, because I had concerns about their supports, and it turns out that I’m falling between the cracks in some of the exact ways that I pointed out a few days ago. I cannot get nearly enough support if I go into that place, because:

  • The staff/resident ratio is 1/16 during the day on weekdays and part of the day on week-ends (there’s an emergency staff sleeping over at a nearby place, but that’s not the problem). This would’ve been difficult already in group settings where residents share chores and can rely on each other for help, but it is pretty much impossible if I am to manage a complete household on my own. It just occurs to me that the staff/client ratio could have been higher in non-apartment settings because residence and care are not separated so the support agency gets to pay the rent. I don’t know whether this is a substantial reason though.
  • There is no external structure. The support worker claimed that this is due to its being an aparment setting, but all other apartment settngs I know (training home, the other Apeldoorn place on whose waiting list I am, and the one in Malden I slept over at in 2007) do have some external structure, for example by having the option of having dinner or coffee together in a shared part of the complex. The lack of external structure is really one major reason why I couldn’t cope in my own home (and a schedule apparently didn’t help enough): every tiny change in my non-routine, such as an unexpected problem, my persevering on a project for too long, etc., meant I lost track of what I was supposed to do and couldn’t “just do what’s next on my schedule”, and there were no external factors that could get me back on track. As a result (among other reasons), I got overwhelmed by all my chores and still ended up wandering during spare time. For those who think I’m misusing an autism stereotype for an excuse, because I “never had any trouble with changes” or because my parents didn’t have dinner ready at the same time each day, either: this isn’t really what I mean. Rather, I mean that I need *some* reminder that makes sense (and apparently, time-of-the-day alone is not enough), that I will connect to, say, cooking, having dinner, doing laundry, etc. Actually, I think in this sense the fact that I *don’t* have rigid routines, is giving me problems.
  • With regard to required independence, you are expected to be able to do the “basics” (the support worker’s word) on your own. The example she gave about cooking is you are supposed to cook for yourself, but can get help with, for example, new recipes. The same sort of thing goes for other activities. Of course, there is the fact of having had very little practice, but that is not my main concern (as I could get some practice now or at the resocialization ward on whose waiting list I am). My main concern is that, even in an optimal state, I can only cook once or twice a week. Microwave meals were invented for a reason, of course, but the same goes for cleaning, shopping, and other duties: I just can’t handle a full week’s chores (and if someone says that I’m just way too adherent to cleaning etiquette, you haven’t seen the mess an awkward, blind person can make, which my college student sister feels more urgent about cleaning up than I do).

With this stuff already, I didn’t even think of mentioning behavior. I just told the woman that I’d try to make an appointment with reso’s psychologist to discuss the matter. The project opens in 1 1/2 weeks, when it is highly unlikely that I will even be at reso yet, and new regulations make it extremely hard to get funding for a transition period. However, in all honesty, even if they could somehow get funding, I think it won’t work out, because, well, executive skills like the ability to structure your own day, taking into account a full week’s duties (plus transition-related duties), are extremely hard, if not impossible, to acquire merely through training.

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Last week, I heard that an agency that provides supported living services to people with mental health problems including autism in my area, turned me down because of my blindness. They turned me down without ever having seen me or spoken with me, and presumably without knowing anything about blindness, its implications or the services available to the blind through the agency for the visually impaired. I feel very desperate, because it means that there is really no way I can stay in this area, where my boyfriend lives. It makes me feel kind of depressed, but also very angry. If the agency’s placement guru was told that the Nijmegen housing association cannot house them because they cannot deal with their religion, but don’t get mad sicne there’s a housing association in a far-away city that specializes in housing people of their religion and that doesn’t even object to theit skin color, oh isn’t that fabulous, what do you think they’d do? They’d take the housing assoc to court for discrimination. But I have to hope that through a little pushing from my social worker, they will be willing to at least speak to me (unlikely, since it’s the third time they bluntly turned me down). Disability, after all, is different. Why?

In employment cases and the like, I can see the point, if the employer is responsible for accommodations. In the Netherlands, they aren’t, since the agency responsible for disability benefits will pay for workplace accommodations and job coaching if needed, and the job coach will come out from a disability service agency. Employers will even be compensated for sick leave through a no-risk policy, by which they will not have to pay the employee’s salary if they’re sick. But taking the U.S. system, where an employer is responsible for reasonable accommodations etc., it is understandable that disability is different from, say, skin color or religion. After all, one’s skin color does not cause one to need accommodaitons.

But I am not saying that the mental health support agency should be giving me accommodations that they don’t have the resources to provide me with. All services that I need because of my blindness – orientation and mobility instruction, mostly -, will come from the agency for the visually impaired, and I will be creating my own accommodations – that won’t go farther than a braille marking on the laundry machine. Maybe they think they need to have a specially adapted home for me, but obviously they don’t. Furthermore, they won’t be at a financial disadvantage if they take me – if one thing, they will get extra funding for me because of my blindness, no idea why. The one thing they could see as problematic, is that maybe my prospective housemates wouldn’t like to have a blind woman in their home. But then again, will they get to choose whether a person of another religion can be in their home? Unless the agency has a specific religious orientation, exempting them from anti-discrimination legislation, which this agency doesn’t, obviously they won’t.

Disability discrimination is often thought of as different from other forms of discrimination. I often agreed, if non-discrimination requires the employer, housing association or service provider to make special accommodations that they won’t be making for the other people they serve and which do not obviously fall under the umbrella of “normal” individual differences. Still, of course, this means that disability is somehow not “normal”, and I disagree to that very point already. But even if you happen to believe that providing disability accommodations is a favor rather than a right, it’s still discrimination if a person with a disability is denied access when the service agency or employer doesn’t understand the person’s needs. The agency didn’t even care to ask me whether I need an adapted home or lots of care that they cannot provide within their living accommodations. If they had asked, they would’ve known that I don’t need this. Rather, they chose to turn me down based on ignorance and assumptions about the implications of a disability. What is different about this from discrimination on the basis of assumptions and ignorance about the implications of religion or skin color?

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When people I encountered casually, like taxi drivers, used to refer to “people like you”, I always knew immediately what they were meaning, even though I didn’t like them using this phrase: “like you” is supposed to mean “blind”. This is despite the fact that I have many other characteristics besides blindness, and when we’d just been discussing some political event I’d attended, context would suggest them to mean “socialist”. But never mind; it’s easier when you don’t have to worry about such things as context anyway.

Unfortunately, the “people like you” statement is not a neutral statement. It connotes some particularly interesitng assumptions: especially, that blindness is my core characteristic. Would anyone be able to mention one single core characteristic of theirs? I wouldn’t, and if it were the first characteristic I mention when introducing myself to others, it’d be my age – but that is just a convention of introducing yourself (if you choose to mention it, state your age right after your name), and I don’t identify strongly as 21. Or is it a characteristic that you mention of yourself even when context doesn’t dictate it? Blindness used to be such a characteristic, that I mentioned in introductions even to teen forums (and then inevitably had to explain at least five times how I used a computer), but I no longer hang out on most chit-chat boards and don’t mention it on politics boards (but do on autism boards, because we’re talking about disability anyway). Currently, I say on my profile on Hyves, the Dutch equivalent of mySpace, that I’m in psychiatric hospital, but that is just to avoid the “What do you do for a living?” question – and most communities I am a member of at that site, deal with politics.

Of course, blindness is the first thing people will notice about me, because people tend to notice deviations from the norm first, and blindness is my only visible deviation from the norm (apart from short stature, but people always think I’m taller than I really am). People just won’t notice my political or religious persuasion or my college major when they first meet me, and “blind” is far more obvious when having to identify me in a large crowd than, say, “very dark blonde hair and blue eyes”.

But I don’t care what other people think my core characteristic to be. If you’re the only muslim in a christian community, you shouldn’t be surprised by being referred to as “that muslim” either. What I do care about, however, is when people assume my every experience is vastly different because I am blind. And, of course, that may be true – I can’t be sure, since I don’t know what it’s like having the same experiences I have while being sighted -, but I don’t walk around thinking “Hey, I must have a very different view on this from everyone else because I’m blind” all day. I have that experience, of course. To give a very simple example: I will not be searching the entire living room for coffee cups when it’s my chore to load the dishwasher, because I would have to feel all over the place while others could be overseeing the whole room at a glance, so I make it a requirement that if others want me to take their cups to the kitchen, they need to place them on a particular table. Right now, the majority of my “but my experience is vastly different from yours” moments deal with autism, because, heck, I’m in psychiatric hospital and that’s my (main) label. But I guess I would have such an experience with socialism or agnosticism if I’d been at a pro-life event.

It doesn’t matter some of the time. For example, I don’t care about the teen forum members constantly asking how I use a computer – even when we’re discussing politics, but they decided to check my profile from reading a reply I wrote. I care a little more about people making completely off-base assumptions about my experiences, like the fellow psychiatric patients who automatically assume I mean blindness when we’re discussing our symptoms ninety percent of the time – ninety percent of the time, I mean the state I’m in when approaching a massive meltdown or shutdown. What I do truly care about, is when people attribute some experience of mine to a disability in a tone as if to imply that, since I have that disability, it’s logical that I ended up in that (negative) experience. Of course, “like you” still means “blind” to most people, and therefore, it’s pretty easily communicated that it’s logical for someone who is blind to end up in psychiatric hospital. Well, it’s NOT. It’s not logical for an autistic, either, even though it’s more understandable. I mean, I wouldn’t mind if people asked whether I’d been committed cause of depression resulting from vision loss, or something like that. That would not be logical – most people depressed from vision loss, don’t get committed -, and it isn’t true in my case, but it would be understandable. I would care that someone assumes that I’m committed because of blindness, and I would care as much if someone assumed that I’d been committed because of autism. I usually explain that I was committed cause of a crisis when I became overwhelmed from going to university and living independently – which is, I might say, a pretty common experience even among non-disabled college freshmen, with the reason they don’t end up in hospital and I do being more related to their coping skilsl that I lack. (Oh, for clarity’s sake: this is to people who know I’m committed, like taxi drivers taking me from my home back to the hospital; I wouldn’t spontaneously announce to a casual stranger that I’m in a psychiatric hospital.) I have a problem with people assuming it’s logical for an autistic to be committed as much as I have a problem with people assuming it’s logical for someone who’s blind to be committed, but that former assumption is less prevalent cause people don’t generally know that I’m autistic. For some reason, I generally do end up mentioning autism somewhere while explaining my reasons for being committed, probably because I don’t want them to think that every blind person they meet is a potential psychiatric patient – neither is every autistic they meet, and I may be doing a disservice to the autistic community by mentioning my ASD, but I’m not sure how I’d address this otherwise. Or would it be best if I said it was a personal issue and I don’t want to talk about it (not that I personally care, but to avoid stereotyping) and just be sad for being a bad example of one disability community already (the blind) and not making it worse by making myself a bad example for the other, too? I guess I’m going to do that in the future. At least I’ll avoid stereotyping the autistic community then – even though in my case autism-related characteristics had more impact on my reason for being and remaining committed than did blindness-related ones. That’s none of a casual stranger’s business. Now how would I avoid automatically answering people’s questions (like I automatically inform anyone who asks about the details of my blindness, despite it being none of their business) cause I’m used to doing it all the time?

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I just read an article in the most recent issue of Future Reflections (the magazine of the National Organization of Parents of Blind Children). Of course, it was about equal expectations, as this organization aims towards the “good enough” standard for disability rights: blind children should be expected to achieve at least the same as sighted children.

What struck me, however, was how the writer emphasized completely the same expectations. For example, blind children should be expected, according to him, to have the same reading speed in braille as sighted children do with print: the commonly-accepted belief that braille readers read only 120 words per minute, while sighted print readers read at least 300, should be abandoned.

I have no problem with encouraging reading, and stimulating a child to read faster than what is believed to be the norm. Automatically giving braille reades double time on reading tests (as happens in the Netherlands) is stupid. After all, we won’t have double time to complete our job projects either. However, if a child cannot read as fast as his sighted peers, this is not in itself a dramatic problem. I have always hated reading test, cause I was very slow even for a braille reader. I have no idea of my current reading speed, and don’t know how it would be measured most accurately, as I rarely if ever read from braille paper now (I read using my braille display), so I think measurign my braille display reading speed would be more realistic than having me read from paper. In any case, I’m pretty certain that I won’t even reach the 120 words benchmark believed to be the norm for blind readers. However, I rarely required extra time on tests in school (I was entitled to 20% extra time), even foreign language reading tests. The reason is that, while I cannot read as fast as my sighted counterparts, I don’t need to read something as often in order to remember it.

I did have academic problems due to my slow reading speed. For instance, in Dutch literature, where my sighted peers didn’t read a book multiple times either, it took me considerably longer to finish the project. In foreign languages, I was closer to my peers, because of my better fluency in these languages (for example, most people take longer to read an English book than that same book in Dutch, but I don’t).

I was a good student with above-average grades in high school and college and got an excellent grade on the one test I took at university, three days before my hospitalization. I was not a straight A student. Maybe I would’ve been one if I’d been able to read 300 words per minute, but I didn’t reach that point. Still, I was better than most of my sighted age peers academically. I may not have been better than my imaginary sighted clone – or whatever that “full potential” thing is considered to be -, but there is no such clone.

I am all in favor of equal expectations. If possible, this includes stimulating a child to reach the same objectives their non-disabled peers reach. After all, you don’t want to have the situation where you expect the child to go to college somehow when she’s grown-up but don’t care how she’s going to manage her reading now that she’s in third grade. Just because a child is blind, doesn’t mean she cannot achieve the same academic goals as her sighted peers – and that may include, for some, that they will eventually read 300 words per minute as an adult. However, if a child happens to not meet a particular expectation that her sighted peers do meet (such as 130 words per minute reading speed in third grade), that doesn’t mean there is no way she is eventually going to go to college. If a child, blind or sighted, lacks particular skills, do you need to force her to acquire them exactly as her peers do, at any cost (and note how much extra training children with disabilities already get to normalize them, leaving hardly any time for them to be children), or can you also encourage her to use the skills she does have (such as an excellent memory) to compensate for her weaknesses? Setting short-term objectives (such as a third-grader reaching age-appropriate reading goals) is important, because it will encourage a chidl to learn when she’s capable of it and it will allow you as a parent or teacher to spot potential deficits if she still turns out to have difficulties. However, just because a child doesn’t read at his grade level, doesn’t mean she won’t go to college or get employment. Not all sighted children read at grade level, either.

As a side note, of course my slow reading was influenced by factors relating to my blindness and the expectations set for a blind child. For one thing, I started out as a print reader even though my vision was too poor for print. However, I was stimulated to read (my mother and sister are both avid readers). Maybe I would’ve achieved higher if the double time standard hadn’t existed in the Netherlands or if I’d been exposed to braille from an early age on. I just want to say that just because a blind child doesn’t have the exact same abilities that her sighted peers do, doesn’t mean she cannot achieve, or that she’s not expected to achieve in the long run.

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I just found out that a woman whom I remember from some blindness lists and who is an active NFB member, has joined a preemie list and raised concerns about her blind daughter’s possible additional issues. In one sense, I’m surprised to find this woman here, admitting that her daughter struggles in school. The reason is that I often feel sort of intimidated by her writings to the blindness lists, where she often shows off about her child’s accomplishments, and points out that every blind person who isn’t as accomplished as they should be, should visit her and take some lessons from her kid. Yet as I thought further, I realized that, if you truly believe at the gut level that, with proper training and opportunity, blindness can be reduced to the level of a physical nuisance, you must actually seek to explain possible difficulties by something else – and the involved parent would choose to have their child evaluated for genuine problems before carelessly assuming they’re lazy or manipulative.

I often assumed it all worked the other way round. I mean, one of the reasons why I’m not particularly active on blindness lists anymore, other than for informational purposes, is that the first thing the people there yell whenever someone on the list or in a newspaper article doesn’t appear to conform to their standards of success, is “low expectations”. Usually, I am the one to point out that perhaps this person has other issues – identified or not – that may cause him to be not as independent or successful as the blindness community would like its members to be. I never meant to blame any failures on labels – because, after all, other disability groups claim (to a lesser extent) that their members’ disabilities don’t hinder their success, either -, but to point out that blind people are a varied group of people, with all individual strengths and weaknesses and a group among which other difficulties are not less prevalent than among the general population.

There is still a reason why you might look for labels, particularly if those labels can help you find appropriate services, treatments and coping strategies. I was labeled autistic, initially, not because I wanted a label, but because I wanted help in dealing with the meltdowns – and the blindness field couldn’t offer me that help. Now, as you get to understand your labels better, they invariably become things that you can use as explanations. But is saying that my need for clarity and structure can be explained by my autism, any different from saying that my need for braille can be explained by blindness? I don’t think so – only people are more likely to assume that I can learn to be flexible, than that I can learn to read print, simply because people always tend to assume that mental problems are more easily cured than physical ones.

But oftentimes, I interpreted the attitude the “blindness can be reduced to a physical nuisance” people had, to mean that, because someone’s only identified disability is blindness, they must somehow be able to achieve – and if they don’t, they must not have been expected to achieve. My parents still hold the opinion that I am only blind and have no other significant difficulties, and, from this point of view, draw the conclusion that I must be able to live independently and go to university. They claim I’ve been made dependent on care providers so that I figuratively cannot wipe my ass without a support worker present. This is not the case, but even if it were, so what? Does that mean that autism is as bad as the curebie movement claims it is, or that I still don’t try hard enough because I should be intelligent enough to do all sorts of things? In my opinion, it means neither. The autism label is useful in explaining some of my difficulties and directing me towards services, treatments, and coping strategies, but it doesn’t define me – just like my blindness label doesn’t define me -, simply because a person isn’t their labels.

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A while back, Joel of NTs Are Weird had a post about how police treat you differently once they find out you’re autistic. I responded with a comment about the way police treat me once they find out I’m blind. Ever since I started going places on my own, I’ve had the fear of encountering the police. It happened often when I got lost and walked the same path twice, but there were several occasions when I knew perfectly well where I was going and, as far as I could tell, hadn’t done anything unusual except for walking while blind.

It’s more complicated now. I think I myself told the police that I’m autistic and used to be in the mental health system in Apeldoorn – that is, I told the Nijmegen police. I don’t know how the Apeldoorn police found out, but they know. I think I never should’ve told them so. Not because the police got me committed to the psychiatric hospital – being suicidal is a reason for hospitalization even for people with no former psychiatric contact -, but because, when I can go out on the streets alone again, my reputation will forever follow me, and I’ll be seen as “wandering” even sooner than I was when I still lived in Apeldoorn and hadn’t had anything to do with mental health.

Another thing is that everyone believes the police can judge a person’s state accurately. At least, the people here believe so, even though the police were told off by the psychiatric emergency service – presumably the people who can judge one’s state accurately – twice. Consequently, getting involved with the police indicates the seriousness of my behavior – while simply walking while blind could’ve gotten the police involved.

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“If you hadn’t been disabled…” Many non-disabled people assume that I would’ve been far better off without one or both of my disabilities. My mother hears of a blind, non-autistic acquaintance of my sister’s and wishes all blind people were alike cause then I would be able to do fine at university and live on my own. My father is convinced that I’d have majored in something technical if I hadn’t been blind. Maybe, as a sighted NT, I would’ve majored in biology and lived in a college dorm like my sister. But maybe not.

The first strategy people, including people with disabilities, use to define what life would’ve been like for someone if they hadn’t had their disability, is to define the ways in which their disability is limiting them. For example, I dropped math and science and biology in high school because I wasn’t able to see the graphics one needed to see to follow these subjects, and I almost failed communication skills last year because I wasn’t able to apply the concepts we’d been taught to the given situation. And, when it comes to independent living, I’m not able to manage my own mail cause I can’t read it, and I’m not able to attend formal meetings at agencies alone because I get confused when I don’t know what’s expected of me. This seems to be a fairly surefire way of assessing what life would be like without a disability. However, not really, cause it isn’t black or white. I know a blind biologist, for instance, and several autistics who earned college degrees in social subjects. I also know many other people who don’t have disabilities, who failed math and science and biology and several who failed communication skills last year.

Another strategy is to compare me to people who don’t have my disabilities. This is easier when you have more than one disability, because that way you can discard one disability at a time, and images of someone with one disability, are less diverse than the non-disabled population. So in order to determine what I would’ve been like without autism, just take a blind person who you think has all other important qualities that I have, and decide that I would’ve been like him or her without my autism. In my case, the only important quality is intelligence, so you pick a blind person with high intelligence and decide I would’ve been like that person. This means I would’ve been successful at college and lived on my own. Same with an autistic – even though many intelligent autistics don’t live on their own or go to college, but as someone not involved in tha autistic community, you’d only have known the people who make it onto TV.

The problem with this strategy is, of course, that you can’t find someone who is exactly like your disabled loved one, but without their disability. I don’t know my sister’s blind acquaintance, so how can I be sure that we’re alike aside from the autism? Most likely, we’re not. And where do I find the autistic who has the exact same expression of their disability, and all other qualities the same as me, but who is sighted? I haven’t been able to find such a person.

Then comes the next strategy, which is to compare the disabled person to your image of them before you or they were aware of the impact of their disabilities. This is, in my case, especially possible with my autism, cause I wasn’t diagnosed till age twenty. So you take the expectations you had for me before I was diagnosed with my ASD. Clearly, this image includes success at college and living independently.

Of course, it is possible not to start experiencing visible problems until you’re diagnosed, or to have the problems worsen after a diagnosis, especially when you’ve long pretended to be normal and are now dropping a facade. However, in my case, have I ever actually been successful at college or lived independently? No. And in 2004, when my future image was drawn by my parents, did I have the skills to go to college and live on my own? Not at all.

Then again, is it really about disability? Or is it that the disabled person is not meeting up to what you expected them to be doing, and you chalk it up to disability because this is all you can imagine chalking it up to? Then realize how many non-disabled people are not meeting up to “normal” standards. Not everyone who graduates from my high level high school, will go to university, and many people live with their parents till they’re 25. Of course, statistically, disabled people are more likely to need support and less likely to go to college, but people aren’t statistics, are they? And, especially with someone with congenital disabilities, you cannot see the non-disabled person behind the disability, simply because there is none.

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I’m used to visual word verifications by now. Usually, I avoid websites that have them on their member registration or content submission pages. I stopped attempting to create Yahoo! groups for this reason – and mine are never particularly active anyway -, and join them via E-mail, cause I still haven’t figured out how their help page for visually impaired people works.

What does still annoy me, is when it’s a disability website that has a visual CAPTCHA (word verification) on its registration or submission page. The Disability Blog Carnival is one such page, but I’m not sure if the carnival organizer chose it that way. The good thing about the blog carnival is that you can also submit entries via comments on the organizer’s blog or at the blog of whoever is hosting the carnival you’re submitting an entry for. Some bloggers also require word verification if you want to post a comment, but at least Blogger has an option to hear the security code – now only the deafblind are left out.

Another option is contacting the administrator or host or whomever via E-mail or a contact form. It only gets problematic when even this form has a visual CAPTCHA. This is what’s the case with WrongPlanet.net, a prominent autistic community website I’ve been trying to join for several months now. Probably it’s not out of unwillingness that there are visual word verifications on every page you might use to get access to the community. Probably Alex, the website owneer, just doesn’t realize that there are people out there who happen to be autistic and blind, and that at least one of them has an Internet connection, is active in the autistic community and is trying to join his website. Bad thing I can’t tell him since all of his contact pages require visual word verification – to prove you aren’t a robot, as his administrator contact page says.

I think it’s an issue of knowing your own group, but not others. The Dutch Autism Association has a lovely “low-stimulation” website, but its accessibility to blind users could be far better.Another Dutch autism web community also is not too accessible to blind users as well as users with poor hand function, cuase of mouse-over menus – though it did not have a word verification at their forums registration page. I assume some websites created for blind people are probably very inaccessible to users with other disabilities as well. When looking at Dutch accessibility guidelines, I even discovered tha tmy own website did not meet all criteria for accessibility to users of speech synthesizers (I use a braille display). So, really, I can understand it if web developers don’t take into account eveyr little detail in making their websites accessible. However, that doesn’t mean I won’t notice it – and especially, of course, when I’m myself affected by the particular inaccessibility.

So, if Alex, or anyone who does have the ability to reach him, ever reads this: hint, put up an audible word verification on your website or use other methods to filter out spammers from joining your community, such as requiring an existing E-mail address for registration (which is probably already the case), or at least offer someplace where people who want to join your community but cannot handle visual CAPTCHA can reach you. And for everyone, here are guidelines on making your web content accessible to users with disabilities. And feel free to contact me with any inaccessibilities in my blog or on my website.

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