Reminder: Disability Blog Carnival

Remember you have only one more week to submit posts for the upcoming Disability Blog Carnival. The theme will be identity, and the deadline for submissions will be September 21. I will publish the carnival here on September 24.

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“Exercise for Mental Health!”

Today, I swallowed my first antidepressant tablet ever, and I feel guilty. I currently read a Dutch book on antidepressants, in which psychiatrist Bram Bakker, among others, states his point of view. His opinion is that a stepped-care approach to depression means that people should first be steered towards exercise rather than antidepressants. Now I happen to take my antidepressant for anxiety, but I am well aware that exercise works for that, too.,/p>

I am not fit, and I am rather sedentary. I used to take daily walks on institution grounds, but I don’t anymore. I went to fitness class once and was overloaded even though a nurse accompanied me. Does this mean that I call for my own mental health problems?

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Bakker caters his running therapy mantra to depressed but otherwise healthy people. There are many reasons why people with disabilities or chronic illnesses who happen to be depressed, are unable to participate in running therapy and other exercise programs. The “exercise for mental health” mantra is a slap in the face of these people. I know. Will anyone now remove the barriers to exercise that I encounter, so that I can relieve my anxiety without having to take antidepressants?

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Autism, Intellectual Disability, and the Concept of “Primary Disability”

Over at Autism Speaking, there’s an interesting post on autism and intellectual disability. It points out a few misconceptions about autism and intellectual disability. For example, Kanner and Asperger originally both excluded intellectually disabled persons from their autism descriptions, so it is not true that autism with intellectual disability is the original or “real” autism.

Unfortunately, AutismSpeaking makes a number of assertions that are not only unfair to those with autism and intellectual disability, but to everyone with multiple disabilities. The author repeatedly refers to someone’s “primary disability”, which is a concept that I personally reject. It presupposes that someone’s multiple disabilities can be taken apart, and that one disability is essentially at the core of the whole complex of disabilities. This is not true: each disability a person has – and every other characteristic -, uniquely influences that person and their abilities and difficulties. Multiple disabilities, further, tend to influence each other. So I strongly disagree with the idea that autistics with intellectual disabilities have a “primary disability” of intellectual disability, which is connoted in the post: they have multiple disabilities that impact and influence each other. The autism is likely to cause the person to function at an intellectually lower level than their IQ would suggest – or the other way around, since IQ may be hard to measure in autistics -, and intellectual disability further impacts the communication difficulties created by autism, for example. I agree that the term “low-functioning autistic” is suggestive that autism is the “primary disability” per se, and is therefore inaccurate, but I would not contend that intellectual disability is now one’s “primary disability”.

The other point I have huge disagreements with, is the excusing of the lack of attention for intellectually disabled autistics from autistic advocacy groups. This excusing comes from the reasoning that these groups are concerned with autism, not intellectual disability, but you cannot specialize multiple disabilities away. In my opinion, autistic advocacy groups should be concerned with all autistics, including those with multiple or severe disabilities. It is too easy to turn a deaf ear to people with, yet again, a different “primary disability”, because such a thing does not exist.

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Disability Blog Carnival Announcement

In 2007, I signed up to be host for the Disability Blog Carnival for the first time. Unexpectedly, I had to cancel that carnival – or precisely, it didn’t show up and no-one knew why -, because of my acute hospitalization. Now, still hospitalized but with a relatively stable Internet connection, I am giving it a chance again: I will be your host for the September Disability Blog Carnival.

I debated with myself long about the theme: would I go with my 2007 would-be theme – “Transitions” -, or would I choose something different? Eventually, in line with my BADD post, I decided to pick the theme “Identity”. Think of it as broadly as you want. Posts relating to transforming identities, are of course especially welcome, as they honor both themes. Just a reminder that, even though this is a disability blog carnival, we honor intersectionality, so racial, ethnic, gender, sexual and any other type of identities also count, as long as the post is somewhat relevant to disability.

Comments can be submitted preferably here or else at the Disability Studies, Temple U. blog. The deadline for submissions will be Tuesday night, September 21 – Tuesday night your time, so don’t worry about my living in Europe. I hope to post the carnival on Friday, September 24 – whenever it suits me, my time.

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Intellectually Disabled Man to Visit Sex Worker at Taxpayer Expense

In today’s Daily Mail, there appeared an interesting opinion piece on taxpayer-funded sex for a man with intellectual disabilities. The man apparently needs to visit a prostitute in order to enhance his independence or dignity, as the article words it. He will be traveling to Amsterdam to see the sex worker, because, according to the article, he apparently needs a holiday, too. Of course, that is nonsensical: sex work is illegal in the UK and legal in the Netherlands, so that’s why he needs to travel here.

I have mixed feelings about this case. First of all, I think sex work ought to be legalized in the UK so that people don’t need to travel abroad to visit a sex worker. Secondly, yes, I do feel that disabled people have a right to access sex workers if they cannot get sexually satisfied any other way. I am not so sure whether I think this sex should be taxpayer-funded, but am not radically opposed to the idea.

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Then and Now: On Changing Abilities, and Why Those Don’t Make Me “Fake”

When I was reorganizing my blog a few weeks ago, I discovered a large number of posts from when I was still in high school. These reminded me of the relative ability I displayed at the time, as compared to my current impairment. That is, if you feel that high school performance and locked ward placement – I am temporarily back at my old ward – reflect directly on one’s level of intrinsic functioning or impairment. If you believe that a high school student who performs well on all subjects is inherently better than a locked ward patient, it is easy to assume that I have become less functional – less worthy even. Worse yet, it is easy to assume that either my past performance or my current impairment are unreal. This is the way many autistics’ realities and therefore their existences are being denied.

Yet when you reason that way, you forget the social circumstances involved in shaping a person’s abilities and difficulties. In my own case, for example, high school was relatively structured. I, being highly intelligent, didn’t have to do much studying, so I could get by without planning my studies. Socially, I didn’t fit in, but that is of course normal for a high-functioning Aspie like me. College, on the other hand, was a lot less structured, and, beyond that, a lot more academically challenging. I could no longer get by without studying, so my lack of organizational skills bit me in the ass.

In daily living, I never did many household chores when I lived with my parents, and did them with relatively much help at the independent living training home I attended. Besides, I had a strict schedule there and someone to fall back on should I get stuck. In independent living, I didn’t have these, and I fell flat on my face.

Beyond this, there are the difficulties that people would rather deny. One’d rather deny that, in high school, I had meltdowns several times a week and was a wanderer. On the locked ward, back when I resided there in 2007 and 2008, that was expected of the behaviorally disturbed person I was, but people still clung to the idea that this had all started in 2007. It hadn’t.

There are also the things, when it’s online people judging autistics, that you just don’t learn from someone’s blog. I hesitated to come out as a self-injurer because I know my staff read my blog. Now they’ve seen me head-bang several times. There are still things you do not know about me, because I find them hard to articulate or because they are still simply none of your business.

People could esaily deny that I am as autistic as I am based on my former blog posts. I can offer a rebuttal if they’re willing to believe that autism is as much influenced by social circumstances as it is a medical condition. Unfortunately, the people who are most likely to doubt my autism reality, don’t take the social model of disability and won’t see autism as something influenced by such circumstances as whether a person is accommodated – either formally or informally – or not.

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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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Sexual Orientation and Gender Identity in People with Developmental Disabilities

Sexuality & Disability is a journal dedicated to the psychological study of sexuality and gender identity in persons with disabilities. In the most recent issue, a study appeared that aimed to examine the presence of sexual orientation and gender identity in people with developmental disabilities. Only a small group of individuals, 32, were surveyed, and it was not a representative group, since all participants had been referred to a clinic for behavioral or emotional problems. However, the study authors still say that their findings may provide insight that can be useful for further research into the sexual and gender identities of people with developmental disabilities.

The main findings of the study were that over 80% of study participants were heterosexual, followed by about 9% bisexual or questioning, and 3% homosexual. There were some discrepancies between the three different measures of sexual orientation – self-reporting, a questionnaire about current sexual fantasiess and desires, and a sexual history questionnaire. Specifically, there was a significant discrepancy between self-identification and current desires on the one hand and sexual history on the other. To me, this could indicate that people had established their sexual identity through experimenting.

Another interesting finding was the high prevalence of gender identity disorder among this group. Four of the 32 people surveyed, could be diagnosed with GID. Two of them were assigned female at birth, which the authors say signals that developmentally disabled persons may be more likely to be trans. Well, in fact, the authors say that GID may be more common among developmentally disabled people, as if that is something different from being trans. I am not sure whether that is Kenneth Zucker’s cissexism or simply the way medical journals word such things.

Of concern to the authors are factors that might influence sexual orientation in people with developmental disabilities, such as poor sex education and abuse. For example, on the sexual history questionnaire, individuals may have included abusive relationships when identifying their sexual encounters. Of course, it is important that abuse be identified and that people be educated adequately, but I am a little concerned about the possibility that it could be a way to influence people’s sexual self-identification, which would be erasing part of their identitities.

Reference

Bedard C, Lan Zhang H, Zucker KJ (2010), Gender Identity and Sexual Orientation in People with Developmental Disabilities. Sexuality & Disability, 28(3):165-175. DOI: 10.1007/s11195-010-9155-7.

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Lacking in Sex Education, or Why I Use Scarleteen in My Mid-Twenties

Over at Feministe, there’s an interview with Heather Corinna of Scarleteen, a progressive sex education website. I discovered Scarleteen not too long ago, and am very glad for it. I am in my mid-twenties, but sex ed was not what it should’ve been when I was younger.

First of all, there is the assumption that you learn through little flyers you get at the doctor’s office, teen magazines, and other print materials. It is also common that friends teach each other about sexuality – although obviously they might not teach the right facts. Both of these assumptions pose barriers for me, as a disabled person: I could not access print materials, and I had no friends to discuss sex with. In fact, the only friend I had in late elementary school, wanted me to record the sex ed class her parents had opted her out of. I did, but got in big trouble of course and was ordered to destroy the material by my teacher. You see, I hadn’t heard of privacy back then, either.

That sex ed lesson, by the way, was extremely useless. We learned to say “gay” instead of “fag” and “penis” instead of “dick” and were told always to use a condom when having sex as to not spread STIs. There was no talk of other forms of intimacy, no talk of relationships in general except that being gay is okay, no talk of consent… And most importantly, we were apparently all assumed to understand our own bodies. I don’t know about anyone else, but I knew nothing about my body. In fact, when I was thirteen, my sister, who is two years younger than I, had to tell me I’d started menstruating.

Parents should be involved in sex ed, too, and mine were not the type to avoid teh issue. In fact, when I was nine, my parents ordered a braille sex ed book at the library for the blind. I had it at hand when my father forced me to read to him as part of at-home reading practice. You can guess I didn’t get beyond the title page.

In high school, we were taught about anatomy in biology class, but I couldn’t even make out that the graph on a test, on which I had to identify parts, displayed the male genitalia. Let me tell you, tactile graphics are not as accessible as they may seem.

I was, throughout my teen years, not all that interested in the physical aspects of sexuality. I claimed to be lesbian or bisexual, but I was only interested in its socio-cultural aspects. This isn’t saying I was just claiming this to have a reason to be different – I still don’t consider myself straight even though I’m in an opposite-sex relationship -, but something obviously was lacking.

When I discovered Scarleteen, I decided to read up on anatomy for the first time. I still find it hard to relate to my own body. I also read up about pleasure, consent, and lots of other issues involved in sexuality. It’s still hard to relate to my own experience. As someone in my mid-twenties, in a stable relationship, I should know better, right? I realize that I wasn’t the one making all these sex ed materials inaccessible when I grew up, and even though I was the one uninterested, is that something to be ashamed for?

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Empowering People with Disabilities?: About Us, Without Us

I just received an E-mail in my mailbox inviting me to participate in a Bloggers Unite event next month: People First: Empowering People with Disabilities. This all sounds like a fabulous idea, and I thought I’d invite you all to participate. Here is the announcement:

I just wanted to take a second and let you know about an upcoming BloggersUnite event, People First: Empowering People with Disabilities. It is taking place on July 24, 2010 and the goal of this event is to raise awareness about the challenges that face people with disabilities every day and how we can help eliminate these challenges.

By sharing stories of how you, a friend, a colleague, or maybe a family member have dealt with the challenges of living with a disability, we can raise awareness about this issue and bring down some of the barriers to equal accessibility and participation that exist today for people with disabilities.

If you don’t have a personal story to share, you can still help! Write about an organization that provides support to people with disabilities or that is helping to provide equal access. Let you readers know some facts about the number of people living with disabilities, the challenges they face, and how each of us can work towards creating a society that provides equal access to everyone regardless of our physical or mental abilities.

Whatever you choose to write about, we’d be thrilled to have you write a post as part of this event. For more information on the event, go to
.

Thanks for reading and have a great day,

Jason Teitelman

You can bet that I was somehwat sarcastic with my invitation, given the fact that people with disabilities, the very people this event aims to empower, are specifically omitted from the invitation. If you want to empower us, then let us have a voice first. Empowering people with disabilities doesn’t happen without us. I sent Jason a comment at the event page letting him know his language excludes people with disabilities. I forgot to tell him that we already have Blogging Against Disablism Day, May 1, anyway.

ETA: most people who commented, have pointed out that the exclusion of people with disabilities I perceived in this letter, may be a linguistic misinterpretation on my part. Furthermore, as Autumn points out, it is somewhat unfair of me to make a lot of noise about this by having written this post. I didn’t receive a reply to my original comment from the event organizer, but have, as Autumn suggested, apologized for the misunderstanding anyway.

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