Weekly Linklove for 02/18/2011

A day early, because I will be leaving for a week-end at my boyfriend’s at 5:00 PM, here is this week’s Linklove.

s.e. smith at this ain’t livin’: Cuteifying Disability:

Cuteification of disability was once championed and pretty widely used, to get people to be more accepting of people with disabilities and to enlarge ideas about accommodation and needs. We aren’t disabled, we’re “special needs.” We aren’t handicapped, we’re “handicapable.” Etc. But I think it’s time to move
beyond cuteification of disability when it comes to neutral language used to refer to disability in general, because it has a chilling effect when it comes to talking about disability; cuteification is associated with “childishness” and as a result it tends to create the idea that children are the only disabled people (or the only ones worth caring about) and it contributes to the idea that it’s acceptable to talk down to and patronise people with disabilities of all ages, because we’re cute and defanged and nonthreatening.

William Peace at Bad Cripple: The Human Body: Can Disability Be Cool?:

When I think of my wheelchair I think of one thing: indispensible. I can assure you crawling is not an efficient means of locomotion. I cannot go far on the rare occasion when my wheelchair has a mechanical problem. I firmly believe wheelchairs need to be rugged in the extreme. When I get a wheelchair frame on the day it arrives I drop it out a third story window. If it survives the fall it is good to go. I have high end hubs and wheels. I have top notch upholstery.
I change all parts that experience wear and tear on a regular basis. When I travel or go out on an errand I always carry a spare tire, inner tube and pump. I am in fact entirely dependent upon my wheelchair for locomotion. This dependency does not bother me one iota. I am very attached to my wheelchair. I love that it empowers me. It makes my life go. I feel at home in my wheelchair and there is a bond that is hard to describe. I was thinking about this
bond as well as how frail the human body is this weekend. I am coming to the end of my journey with my wound. Within a few weeks or at most a month or two I will be up and around. I have found myself thinking that I want to in some way remember this time in my life. One way to remember is to modify your body. In a way I have already done that: I have grown a beard. I look like a paralyzed Santa Claus. My hair has little grey but my beard is white. But I was thinking of something more. Perhaps a tattoo or some other permanent mark. Perhaps some intense experience. I want to do something to remind me of this dark time. And if you think I am exaggerating I suggest you spend six months in bed in your own home.

Christy Matta at Dialectical Behavior Therapy Understood: Does Yoga Reduce Anxiety?: A Study on GABA Levels:

So many people who practice yoga expound on its virtues. I’ve heard many talk about the physical and emotional benefits of yoga. People say it makes them feel good, calm, peaceful. Since it’s a practice that’s been around for thousands of years and the people who practice it certainly tend to look healthy and relaxed, I was curious if there was research to back up the benefits I often hear about.

Sarah Mehta at Blog of Rights: Official Blog of the American Civil Liberties Union: At Guantánamo: Enough Already:

Yesterday morning, I watched Sudanese detainee Noor Uthman Muhammed plead guilty before a military commission in Guantánamo as part of a sealed plea deal capping his sentence at an undisclosed number of years. Noor Uthman Muhammed’s case is the only war crimes prosecution currently before the Gitmo military
commissions. He is accused of training recruits at the Khalden terrorist training camp in Afghanistan and providing additional logistical support to the camp’s operations between 1996 and 2002.

Margarita Tartakovsky at World of Psychology: The Birth of the Mental Asylum:

The first hospital in the U.S. opened its doors in 1753 in Philadelphia. While it treated a variety of patients, six of its first patients suffered from mental illness. In fact,
Pennsylvania Hospital would have a pivotal impact on psychiatry.

Daniel Kennedy aat ZDNet: The Country of Facebook Recognizes Civil Unions:

The 600 million user social networking behemoth made a small change to its “Relationship Status” drop down box today, and in doing so recognized “In a civil
union” and “In a domestic partnership” as valid choices in the way one can report their personal relationship on the site.

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Blogging as Advocacy

I recently participated in a research project on blogging and autistic self-adovcates. That got me thinking whether blogging is a form of advocacy. I write about autism, mental health, and disability, but does that constitute a way of advocating, either for myself or for others?

There are some obvious examples of advocacy on my blog. For example, the times I raised awareness of individual cases of abuse of disabled persons, or called on people to contact their representatives in order to get some law passed or defeated. But these kinds of posts make up a minority of my posts. The majority are informative, simply opinionated, or personal journal articles.

It is possible that even these posts constitute a form of (self-)advocacy, as in the idea that one advocates by simply existing in the world as a person with disabilities. The personal is political, as they say in the feminist community, in this case. I try to educate people about mental health and disability. Meanwhile, I’ve been told that my writing about my institutionalization demystifies the mental institution.

In another respect, I use my blog to communicate with people offline and online, to express myself. I find communicating via the Internet one of the easiest ways of communicating, and this has helped me get my perspective across to people in the mental health system, for example. In this way, blogging is a form of self-advocacy through self-expression.

Nonetheless, I never considered myself a (self-)advocate, despite being called one by people all over the Internet. Maybe, in my opinion, advocacy requires some form of being successful in daily life. This is inherently disablist, and in other people, I see (self-)advocacy regardless of accomplishment, but I am not sure whether I can call myself a (self-)advocate simply by expressing myself through a blog.

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Disability Doesn’t Cause Abuse

I gerenally appreciate Harold Doherty of Facing Autism in New Brunswick for his advocacy for better adult autism services, particularly for those with the most severe disabilities. However, his most recent severe autism reality post had me rather up in arms.

In short, Harold describes a situation in 2007 where a severely autistic woman was abused by two staff members at the care home she lived in. I agree with Harold that this is a strong warning that we need better autism services for severely disabled adults. However, what I strongly disagree with, is his allegation that this is an “autism reality”, rather than an abuse reality.

As an argument, Harold tells me that this woman is more vulnerable to abuse due to her disability, particularly her inability to communicate. This is true. However, that does not turn the disability into the cause of the abuse. It would be the same as saying that rape is a “female reality”, because women are far more likely than men to be raped. This is abuse apologism, and I strongly disagree with that.

Of course, we need to identify vulnerable groups of people, and make sure they are protected from abuse. But blaming a characteristic – be it disability or gender or whatever – for the abuse, is not going to solve the problem. You might say we need to help vulnerable groups to protect themselves, for example by teaching a non-verbal autistic to have a way to communicate abuse, but that is not the same as making the disability responsible for what happened. And if someone is unable to protect themself, for example by being so severely disabled that they have no way of communicating, the solution is to protect them from the outside. Either way, abuse of any kind is unacceptable, and calling it a reality of the person’s minority status, suggests otherwise.

ETA: Harold has responded to my blog post at his own blog.

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The Drawbacks of Participation

The upcoming Disability Blog Carnival will be hosted on the theme of “participation”. Participation is a somewhat tricky subject for me, as I lost my ability to participate in the non-disabled world in many respects when I broke down in 2007. Before then, I’d been on the surface a successful example of inclusion, having graduated from a high level high school with all good grades and always having been able to live with my parents with minimal professional support. I say “on the surface”, because my almost daily meltdowns, my self-injurious behavior, my almost total isolation, my inability to speak at times, and other signs of my disabilities were carefully kept out of view.

The fact that I participated in the “real” world for so many years, sometimes comes back to bite me in the ass. It bites me everytime a commenter suggests my history does not indicate I’m autistic. It bites me more everytime someone asks me to explain why I don’t live on my own or go to school or work, especially if it is someone who is close to me.

Disabilities create barriers to participation, yet as people with disabilities, we’re forced to participate in the non-disabled community as much as we possibly can. Inclusion is touted by every disability activist, and many don’t consider the need for individualized accommodations. Note, I think inclusion is great, but I believe it is a right rather than an obligation. We shouldn’t have to prove how oh so capable we are in order to be valuable members of society.

Furthermore, the degree to which we are seemingly able to participate in society should not be used against us to “prove” we’re not disabled. It is possible that we are able to participate in community life with a lot of support, either formal or informal, or with a lot of effort. I lived a “normal” life for twenty years. Now I’m burned out and can only participate in some areas of non-disabled life, and with pretty much support. This doesn’t mean I am not a valuable member of society anymore. It also doesn’t mean that I wasn’t disabled for these twenty years – I was just able to pass, and passing isn’t always a privilege.

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Thoughts on “Disability Norm” and the Push Towards Community Living

Last week, Rachel Cohen-Rotenberg of Journeys with Autism wrote a post on visibility and human worth in the disability community, which discussed the overrated emphasis on achievements within a disability context, whereby people with severe disabilities or their carers/parents are ignored or outrightly silenced. Today, guestposter Claire posted about “disability norm” and some other problems with the social model of disability as it applies to people with severe disabilities.

I am not as severely disabled as Claire’s daughter, but even I can relate to some of the problems Claire and Rachel highlight in their posts. Claire writes:

The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.

There I can relate. I have lived in the community and lived in an institution, and, though I never consciosuly chose an institution over community life, I am deciding to live in an institution for the next couple of years at least. I like the quietness and safety of institution grounds (except when there’s construction going on!). I have a need for 24-hour care some of the time – unlike Claire’s daughter, I don’t literally need 24-hour supervision, but I need someone close at any moment of the day. On the other hand, I want to have some connectedness with the “real world”, but to be honest, not because it is the non-disabled world, but because I want to be connected to people I love. You might say that, actually, I should be able to get community-based supports that suit my needs while for example living with my boyfriend. This may be what society should be like, but as long as it isn’t, is the burden on me, or on Claire and her daughter, to prove I or she can live in an inadequate community setting in order to be “allowed” teh care we need?

After all, most community living activists do not claim that people should be allowed to live in low-stimulation areas, with specialized medical equipment, and 24-hour supervision, for example, within the community. In fact, most community living activists do not advocate for people who have relatively frequent meltdowns, like me, to live in the community. They may theoretically think so, but in practice it all boils down to how cost-effective community living would be. Well, what if, in cases like mine or certainly Claire’s daughter’s, it is not? I have always advocated for disabled people’s right to live in an environment they choose, and that may be segregated for some.

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On Being Gifted and Disabled

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

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

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

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

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

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

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

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Disabled and Childfree: The Default Assumption

I am disabled and childfree, which means I choose not to have children. While the default assumption is that people my age will eventually have children, if they don’t have them already, this does not go for disabled peple: they, especially women, are automatically assumed to be childless, and the reason is supposed to be the disability.

In my case, this is partly true: I do not see myself capable of caring for children responsibly, and my disabilities are a reason for this. But other factors, such as the fact that I simply do not like children, play a role as well.

Besides, it’s simply none of your business. If I’d chosen to have children, that would be up to me. Now that I choose to be childfree, that is up to me, too. The only person whose business the choice of having or not having children is besides my own, is my boyfriend. So stop assuming that disabled women will automatically be childless, and if they choose to be, stop assuming the disability is the reason. It may be or it may not, but it’s simply not for you to know unless we choose to inform you.

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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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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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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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