Astrid’s Journal

Well, I guess I should be proud, because Seahorse of The Beauty Offensive nominated me for the “Thinking Bloggers Award”. OMG! I didn’t become sort of active in the blogosphere till moving from DiaryLand to WordPress last February, and I’m still trying to recover from the “compulsive writing” image I apparently left, so I’m kind of uncertain as to whether I’m doing this “right”. In any case, the idea behind this thing seems to be that, if you get tagged, you write an entry tagging five other bloggers who you think write thoughtfully. Okay. A few months ago, someone, probably Autism Diva, wrote that she had difficulty thinking of just five blogges to tag, because there are so many thoughtful blogs around. I could think of far more than five thoughtful bloggers myself, too. In fact, I was thinking about making this a honor list for all the autism bloggers I read but don’t link to because otherwise my blogroll would be too crowded up with autism bloggers and it would send the message that I’m obsessed - which I guess I am anyway. But… they have already been tagged. Well, there are many other thinking bloggers out there anyway.

These are the rules:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote (here is an alternative silver version if gold doesn’t fit your blog).

Anyway, here go my five bloggers:

1. NTs Are Weird: Surprisingly, Joel at least doesn’t have a post up at his blog saying he was tagged. I’m pretty sure he was, or he should be at least. Really thoughtful and well-researched commentary on autism issues.
2. Whose Planet Is It Anyway?: First came across this blog when browsing BADD entries. Very thoughtful posts.
3. ABA4Autism: I strongly disagree with Dr. Brown on many autism issues, but I can understand that, being an ABA clinician, he would pretty much need to hold this view. Good thing is he’s one of few in the autism community who actually allows criticism, even though he doesn’t respond. I still hope he’ll eventually be even more open to alternative views of autism.
4. E. is for Epilepsy: I have no experience with epilepsy, but this blog sheds an interesting light on it.
5. 6YearMed: You know you’re in med school when… Very insightful and sometimes humorous posts.

David at Growing Up with a Disability wrote about disability stories and media. In the post, he points out that the NPR piece may’ve looked “positive” but its “inspirational” feel made it reflective of the very same stereotype that pity stories are grounded in: that disabled people really can’t do much.

Is it really the same stereotype? Maybe, when the reporter’s aim is to show how special this particular person with a disability is, compared to those other pitiful disabled people. However, I think this may not necessarily be the intention of the reporter. Some media coverage is really done to show the world that disabled people have abilities, but when it’s done incorrectly, it becomes just as stereotypical as the pity party showcases.

I never once wanted to be involved in a media feature (I was once as a child), even if it had a positive aim, like portraying a blind high school graduate. The reason is not simply that I think it’s ordinary for blind people to graduate from high school. I think so, too, but the main reason why I wouldn’t want to show this in a television or radio program or newspaper article, is because I would have to portray my, say, high school graduation in an all positive fashion, to show the audience that blind people do graduate high school. That would be unnatural, because I may’ve graduated high school, but it certainly didn’t go all well - just like it didn’t go all badly. My aim is not, and has never been, and will never be, to show that disabled people have lots of abilities or very few abilities, but to show that all disabled people have their own unique set of abilities and inabilities, like all non-disabled people do. I would be eager to participate in any media coverage, if I were allowed to be as positive or as negative as I felt I should be about whatever the piece would be about, and weren’t forced into either a pity stereotype of inability or a feel good stereotype of inspiration.

Far too often, staff in facilities in the developmental disabilities or psychiatric systems, make any of these statements, or variations on them:

1. “This is what your behavior calls for in me.”
2. “Your behavior is so extreme that I even had to do [action the staff feels is inappropriate].”
3. “I will leave you alone / you will have to go to your own apartment when I don’t know what to do anymore.”

I have heard all of these come at me in many forms, and the statement that the staff will let me know what my behavior calls for in others, is even in my jusitifcation of services. And yet, it is complete and utter nonsense.

The intention of these statements is often to show people that they have a responsibility for their own actions, and that these actions will have consequences. However, rationally, these statements do the exact opposite. I remember several occasions in which a staff member was screaming to me or pushing me to get me out of the general apartment, and then ended up using their own behavior to explain how extreme mine had been. In fact, this was one of Renee’s primary arguments in the January 3 agreement. And yet it is invalid, cause no matter how extreme my behavior may have been, that doesn’t make me responsible for the staff member’s actions. No-one has behaved objectively unethically to me - all occasions in which the “I even had to do this” argument was used, referred to behavior that simply cannot be expected of training home staff -, but we all know that abuse is happening and being excused widely on this basis.

Another problem with these statements is that it makes the staff member’s standard of behavior intrinsically right. It doesn’t matter what the rest of the world thinks, but the client is the one with a disability or disorder and the staff supposedly is not, so the staff’s behavior is always in response to the situation (ie. the client’s behavior) and the client’s behavior, therefore, is wrong when the staff does something inappropriate or unpleasant to the client. This makes the right standard ob behavior extremely unclear: behavior is okay so long as the staff member says so, and it is wrong when the staff member thinks it is wrong. Quite a sophisticated theory of staff’s mind expected from the client in this case.

And this is quite exactly the most serious problem I’m experiencing with statements like these. After all, when the staff member’s opinions or actions become the determiner of what behavior is and isn’t appropriate - which happens extremely often in one form or another -, this means I need to understand when the staff member will have a certain opinion or take a certain action. This would be doable if interactions obeyed concrete rules, but many do not. I’ve tried to point this out to staff quite frequently, and often got the answer that reactions weren’t always predictable. I know, but this fact makes it more difficult for me to understand what is and isn’t acceptable behavior. This would not be all that troubling if you just sent me to my apartment everytime I behaved inappropriately and were fine with an apology. However, the very fact that people use their own not always desirable behavior - which they would like to improve, one might hope - to measure mine, implies that they want improvement from me. And so do I. Yet the way the part of my mind that processes social information seems to work, is with a long list of “if X, then Y, else Z” type of rules. The most general version of this, which is that I have to behave, and when I don’t, someone else will react unpleasantly, only helps me understand that if someone reacts negatively, I must’ve done something wrong. Even when assumimg the staff are these almighty, flawless people who always behave correctly, that doesn’t help me understand any better how I might improve. After all, how can I improve when I don’t know what I did wrong?

Unfortunately, people too often assume that you must know. This seems to be part of what is commonly called theory of mind: everyone thinks the same, so if I say you did something wrong, you must understand that you did something wrong, cause it is no more than logical that you did. I wonder if this is part of what social psychologists call false consensus. In any case, it doesn’t work that way, at least, not with me. I am fine with someone not accepting negative behavior from me, and they can leave me alone or send me to my apartment for it, but don’t expect me to understand that it was wrong without having explained. You may think that what you perceive is obvious, but please realize there are people who may not see this the same way.

Too often, when discussing preemie outcomes, independent living becomes an important factor. This is understandable. After all, when a preemie adult can’t live independently and there are no services where that adult lives, the parents are often responsible for caring for the adult. So, who can blame those parents when they complain about bad outcomes on the Internet or in organizations like NAROF? This was how I thought when I still lived “the good life” outcome-wise. When I was still in high school, I didn’t know about the nuances of independent living: you either lived independently, or you did not, and when you did not, you couldn’t speak for yourself and your parents had all the right to do so for you. Now I have a far more nuanced view of this. Firstly, I have come to see that there is quite a bit of grey area between living completely independently and living with full-time support, and, secondly, I’ve come to realize that no-one really can be so dependent that they lose their voice. This is just inhumane.

I think it all depends on how you view support. Some people view support as something disabled people need, because they can’t do whatever the support is helping them with. This leads to an extremely paternalistic support system, in which the support worker takes away most of the disabled person’s responsibility in their own daily life. The way you can see this attitude in practice is with duty lists, where the carer/support worker does a task simply because they (or their superior) think it has to be done, whether or not the disabled person wants that task to be done. If the disabled person makes a request not on the duty list, it’s dismissed with The Smile. From this attitude, it is pretty easy to look at the needs rather than the capabilities. After all, those are on the duty list.

Another attitude is that in which support is seen as something aimed at enabling the person with disabilities. By this, I do not mean the shift in services from care to assistance, whereby the support worker used to vacuum, but is now telling the disabled person how to vacuum. Rather, I mean an attitude in which the disabled person is seen as a real person and the support as something that enables that person to have as full as possible a life. And this in fact requires the carer or support worker to listen for what the person wants, rather than fill it in themselves from their duty lists.

I will not say this isn’t difficult. Really, it is. My current setting, ie. training home, is a setting in which this attitude should be used especially, because, well, the goal of training is to enable the client to live as independently as possible. But this is also the setting in which a positive, enabling attitude too quickly becomes sideline politics, where essentially the staff’s task becomes to tell the clients that they have to solve their own problems. And I can tell you, there is nothing more frustrating than to come up to a staff member with a question (especially when I manage to ask it correctly) and then be told that I should come up with the answer myself. Well, if I knew the answer, I wouldn’t have asked you in the first place. Some people return my question with their own questions and thereby, hopefully, enable me to find the answer myself (if it was a question that was just “too big” but I really did know the answer) or to find large bits of the answer myself (if I didn’t have a small but essential piece of information to answer the question). Because, in this way, the staff member really isn’t going to answer my question, people might come to think it’s the same as telling me to find the answer myself, or that, if I found the answer by having the staff member do this, I should be able to find it myself. Really, it doesn’t work that way: sometimes (it unfortunately doesn’t always work) this way of asking me helps me organize my mind, and I just can’t seem to do that on my own sometimes.

But back to the support issue and having your own voice. Too often, it’s believed that an enabling approach to support can’t be done with people who don’t have conventional communication abilities for physical or cognitive reasons. Children and even adults with no functional communication skills are therefore presumed not to be able to have a voice of their own, so their parents speak for them. While I don’t expect all adults to go onto the mailing lists, it is quite different for a parent or carer to claim to speak for the person they’re caring for but actually to speak for themselves, than to adjust their communication to meet the person’s abilities and try to understand their wishes and claim to speak for themselves while having tried to best understand the person’s wants. It may take more effort from the supporter, but it enables the person to be a real person rather than a duty list - and I still hope parents and carers can appreciate that person.

I just found out that a UK fertility clinic got permission to screen embryos for squint and discard the ones that will have the cosmetic difference. I obviously oppose this practice, but I’m even more angered by the emotional reasoning used in the doctor’s arguments:

When asked if he would screen embryos for factors like hair colour, he said: “If there is a cosmetic aspect to an individual case I would assess it on its
merits. [Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA, I would do it. If a parent suffered from asthma, and it was possible to detect the genetic factor for this, I would do it. It all depends on the family’s distress.”

However, I’m pretty sure that if a Deaf couple insisted on wanting a Deaf child, this doctor wouldn’t do the screening. If I weren’t a pro-lifer, I’d say it’s about time they detect the intolerance gene and start screening emryos for that.

This past week has been very confusing. Most of it is related to the fact that we’ve been working on my care plan and I’ve been trying to clarify my abilities and difficulties to Arda and, in the process, tried to clarify them for myself. When doing the care plan and writing down my support needs, Arda eventually said that we had enough already (as if you have to have a set number of support needs). I later found out that, through all the stuff I need cause of my behavioral difficulties, I forgot to list that I need someone to read my mail - and it has to be in the support needs list, cause the description of my abilities and difficulties in the “person image” says I can do my own administration. I realize I need to have it listed, and think I shouldn’t even wait to ask Arda and just add it (Arda will be on holiday next week), but at the same time the endless list of support needs makes me fear that I shouldn’t add yet another item.

At the same time, I realize that my support needs are completely different in quiet weeks from busy weeks like the past several ones. When my week is well-organized and there aren’t many confusing practical or emotional issues I’m facing, I wonder what the hell I’m going to do with all my support and I think it’s in fact going to be a burden rather than help cause it’s taking up so much of my time. Yet in weeks like the previous several ones, when I have a lot to arrange and have many issues on my mind, I’m fearing that I won’t cope - beyond the fact that everyone has their good weeks and their bad weeks. This is cause I seem to have so radically different abilities depending on what state I’m in, because I really can’t do much when I’m in a state of overload and I can do most things (that’s why support would get in my way) when I’m not overloaded. Or really, I’m not sure if overloaded is the right word, but really that state of mind when everything spins around in your mind and you just can’t get it organized, that usually happens during chaotic times. It is like the chronic form of freaking out, that can last for days to weeks during times of relative stress. When I’m in this state, I’m mostly scared not about the hours of support, but about the fact that I tend to have difficulty communicating with my support worker and yet it’s all the more important that I do communicate what I need to communicate, cause at these moments I most definitely do need the support. Unfortunately, support workers are not bothered by spending hours with me drinking coffee during good times, unless they are going to get in trouble for not doing support work enough, and yet during bad times, when I most certainly need their support to help me keep my life organized, the support workers are the most likely to be bothered by my difficulty communicating things “the right way” - and even when they don’t think they’re bothered cause my communication sounds clear and is of polite enough intonation, I run a risk of not communicating what I want (like everyone has sometimes, but I seem to have it pretty often). When I tried to explain this issue to Arda, she seemed to have understood that my problem is with time, because that was the context in which I got to make the statement (Arda questioning whether she’s a good coach to me cause she has so little time). Really, the problem is with communication, and communicating effectively can take time. The thing is, if I spend half my support time (and sometimes it gets up to 90%) trying to communicate a particular issue in a way that is correct to me and that won’t insult the support worker, the not-so-patient support worker will have left me long ago cause of some unintentionally hurtful comment I make, making the whole point of support useless (that’s why I sometimes avoided discussions with Renee during times of stress), and the patient support worker will have no time and/or patience left actually addressing the issue.

Meanwhile, I get to wonder about my communicative abilities. Arda thinks they’re better now than about a year ago. She used the example of yesterday’s mental health appointment, when I explained relatively well what I’d been going through during the past two weeks. In one sense, she’s right, in that a year ago, I would just have sat there “lokced up inside” for a while until the folk drew the conclusion there was no point in having this appoointment. But when I don’t say a word, I don’t notice the limitations of my communication, either. Yesterday went well as far as this is concerned, but at other times when trying to communicate difficult things, I experience quite a few problems. And, really, not having said something and hating that you didn’t say it, is better than having tried to say something, experienced the embarrassment of major word-finding difficulties and the grammar hell that my language is when in this state, and then still not having been able to communicate it, even though it feels much better to be able to communicate something difficult than to avoid communicating it. Man, I remember when I started speaking about difficult things - that I’d used to get “locked up inside” over - about a year ago, Renee being more concerned than she’d been when I just wouldn’t respond. At one point, I got to wonder what was happening to my language, too, cause at times, I would have difficulty finding the simplest words. But none of my other language skills were worse than they’d been, and I could still speak fluently when discussing things like politics. Now I realize the problem wasn’t that my language skills had deteriorated at all, but that I didn’t use to speak at all at the moments when I was now experiencing word-finding and grammar problems. The bad thing is that trying to communicate something, takes much more energy than just avoiding the issue. It may not be as effective - in 2004, it did have its advantages that my tutor used to read my online journal, cause I wouldn’t have been able to discuss some important issues otherwise -, but it unfortunately takes more energy. One solution is the one I used in 2004: writing. Unfortunately, there are several things getting in the way of using that strategy effectively. One is perfectionism, that even seems to be worse when writing to a specific person or persons than when doing it online (though I try to be more selective about what I throw on the Internet since my father accused me of comsulsive writing). Another, more annoying, issue is that I can’t seem to write “on purpose”, sort of - this is not the right wording, but well. I had this in high school, too: knowing my writing was better than my speaking, my tutor often would tell me to write something that he wanted to know but I wouldn’t speak out. Those texts always looked as bad as my current speaking does (major grammar errors etc.) and often didn’t catch the point. Unfortunately, that writing has not improved ever since except that I might sit for hours editing cause of perfectionism, hence making it a little more grammatically correct. Last drawback is that people can’t check as easily whether they’ve understood my writing as they can do with my speaking. I haven’t worked my way around these problems yet, though writing does have the one advantage of taking much less energy.

Recently, Joel of NTs Are Weird wrote a post on stereotypes about successful autistics. Even though I already wrote a comment, I think I need to address this issue in a wider context in my own journal, since it’s been quite an issue for me personally and I’ve particularly faced it over this week.

I am intelligent. It was no surprise to me that, when the mental health folk who interviewed my parents, asked what I was interested in as a young child, my father immediately said “Knowledge”. I do not remember my very early years, but at age four or five, I taught myself to read. My mother stimulated me by creating books with very large print in them for me. At age seven or eight, I found myself explaining squareroot calcxulation to a 15-year-old acquaintance who had trouble with her math. At age eleven, I was fascinated with maps - studying as well as drawing them. I was also still interested in calculus, and could (and still can) do calendar calculation, albeit not extremely quickly. I remember one day about five years ago getting my mother into a “she’s so sublime” brag about me for doing this at a family get-together. I don’t know what’s so sublime about this, since anyone who bothers to learn the rules of how the calendar works and who has reasonably good calculation skills, could do it.

Of course, if you didn’t know anything about me other than my current ASD label, it would be fairly easy to write off all of these abilities as splinter skills. The thing is, they are not, even though I obviously did perseverate on these topics. I am in fact intelligent. My verbal IQ (performance IQ can’t be measured cause of blindness) has always been within the gifted range, and I did well academically in high school with relatively little effort. I will not deny I was (and still am) successful intellectually.

Arda has come to call my intelligence an impairment. Even though I don’t like the negativity in this wording, I can see where she’s coming from: because people know I’m intelligent, they will make false assumptions about my abilities in other areas. Since being labeled autistic, this fortunately has changed for the positive at least with people outside of my family or the autism community. That’s why I’ve only come to dislike my intelligence less since finding out I’m autistic, because when I now explain my difficulties and how people can help me, most will not assume I’m trying to excuse myself for being lazy. Some will, of course. One is my sister, unfortunately. She may not have meant it that harshly - or maybe she did, I don’t know -, but when repeating over and over again that I should “just try”, she really hurt me. I’ve been trying freaking hard for all of my life and I’ll continue to do so, but when I request help it’s not because I’m lazy or lack self-confidence, but because with that help, I can have a fuller life.

The problem is, you either acknowledge you have a problem and get to have your whole existence medicalized, or you prove that you’re good enough not to be medicalized and, by this means, lose your right to get help or services to help overcome your problems. Last Tuesday, I found myself caught between these two, when Arda wanted to write into my “care plan” that I “suffer from an autistic spectrum disorder” and my sister kept saying I could do much better if I just tiied. I asked Arda to correct the “suffer” part, and she did, but didn’t seem to understand the point. My sister kept repeating herself until I hung up on her. And here I’m sitting, caught between two stereotypes, neither of which I meet. I don’t suffer from autism, but the reason has nothing to do with how little trouble I have cause of autistic difficulties.

But, I must say, I am not a strong self-advocate, at least, not yet. I still realize I’ve pretty much internalized that line, where on one side you’re good enough to claim a right to be accepted as you are, as long as you stay good enough, and on the other side, you have the right to acknowledge you have difficulties, but you’re only accepted for who you would be if you didn’t have whatever people assume makes you bad enough. The thing is, I want to accept myself for who I am. This doesn’t mean I don’t want to change anything about myself, but that I want to accept myself as a person with strengths and weaknesses, who wants to develop her strengths and work on overcoming her weaknesses. Unfortunately, this is still a very fragile concept, and I’m beginning to believe no-one shares it. Man, was this whole stupid issue ever easy on Tuesday, when I did my writing for BADD. Not anymore. Now I’m using the same stereotypes and counter-stereotypes to prove to Sigrid that I do have difficulties and to prove to Arda that I don’t suffer from my ASD, while all I really feel is, God, I don’t want to choose between being good enough or bad enough, I want to be okay cause I’m me.

Today is Blogging Against Disablism Day. Disablism, also known as ableism or disability discrimination, is the different treatment of people based on disability. Usually, this discrimination is rooted in stereotypes, usually negative ones. Hence, since people with disabilities presumably can’t work, employers don’t care to hire them, and this only reinforces the stereotype. Ultimately, the unemployment rate among the blind is 75%. It’s about time these images change.

So here come the counter-stereotypes, those images the disabled community wants the non-disabled to have of themselves. Shiney token disabled people jump up to show the world how they should be accepted and valued as productive members of society cause they have a college degree and a six-figure salary. Stop discriminating against the blind, cause with proper training and opportunity, blindness can be reduced to the level of a physical nuisance, and the average blind person can do the average job in the same time that the average sighted person can. If only the sighted saw how capable we were, there’d not be 75% unemployment among the blind. And of course, autism doesn’t need to be cured, cause it’s a gift rather than a disability. Think of Einstein, Newton and many other scientists, who may not have made the big contributions to our knowledge that they did now without their autistic traits. It’s about time people honour our autistic strengths!

Don’t get me wrong, I think it’s wonderful that capable people who happen to have disabilities stand up against disablism. However, too much generalization of their capabilities creates just another stereotype. Possibly, the capable people with disabilities are being segregated from those who don’t meet the “competent disabled person” standard. It’s already happening in the autism community, that tends to divide autistics into two groups: those “high-functioning” people whose typically autistic strengths should be valued, and those “low-functioning” autistics who supposedly only suffer cause of their autism, justifying “cure”. Hence, not being subject to disablism becomes something conditional, something deserved by sufficiently deviating from the stereotype of disability.

Often, disability groups mean well when they use shiney examples of people with disabilities to prove that we have civil rights. After all, it is a way of drawing people’s attention. When we used a poor, unemployed, socially uninvolved person with disabilities to show that disabled people have civil rights, no-one would listen. Who does this beggar think he is, claiming he has civil rights? Yet here we have FDR, Helen Keller, Temple Grandin. No-one would deny them civil rights, would they? See, wheelchair users can be president, deaf-blind people can go to college and be authors, autistic people can get Ph.D.’s and be world-famous livestock experts. What did you mean beggars, passive consumers of care, non-communicative, violent monsters? And we all forget that only 25% of non-disabled people have an undergraduate degree, even fewer have a Ph.D. and only one person can be president of the United States every four years.

But the non-disabled majority have stereotypes on which they base their discrimination, and the disabled fight them by creating yet other sterotypes. This creates another form of ableism. It’s still discrimination. What’s not?

A world free of ableism would not be a world that values the great contributions some people who happen to have disabilities make to the world, but a world that values each person, disabled or not, regardless of how small or large their contribution to the world may be. And don’t tell me that there are people who can’t contribute. Even those who happen to be beggars, those who happen to be seen as passive consumers of care, and those who happen to be violent and have no effective means of communication, still need to be valued as human beings. Real freedom from disablism is not based on some arbitrary standard of achievement, but on the value that each human being, regardless of disability, has.