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

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

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

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

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

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Institutionalized and Not Fighting to Get Out? You’re a Lousy Disability Rights Activist

Often, when institutionalization is discussed amongst disability activists, it is seen as both absolutely undesirable and something no-one would voluntarily choose over life in the community. I am a voluntarily institutionalized person, in the sense that I am an informal patient, and I am often looked upon with suspicion for thinking that an institution is the most appropriate placement for me given the circumstances of the system as it is now.

What these people fail to realize, is that it is only within the context of the current system that I prefer an institution, and that this doesn’t mean the current system is right. There are, in fact, a lot of barriers that keep me from living in the community, and I advocate for these barriers to be removed.

Yet it seems to be the default that people with disabilities go live in the community in spite of these barriers first, and only then fight to remove these barriers. In other words, we have to prove we can live without accommodations before we might get them eventually.

I would prefer to live in the community. However, I know that, if I went into the community in the current system, I would barely survive, figuratively speaking – I know that literally speaking no-one would let me starve. I managed for three months in this condition in 2007, and those three months were hell enough that I would not prefer to experience them again. I don’t care that I am keeping a stereotype alive by not fighting to get out of the institution. I have only so many spoons I can dedicate to living the activist life.

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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 Doesn’t Kill

There’s a new blog dedicated to remembering the lives “lost to autism”. The blog lists autistics murdered as well as those killed in accidents, in addition to calling attention to autistics who killed other people. On Left Brain / Right Brain, there’s a response, to which MJ of Autism Jabberwocky responds again.

I tend to agree mostly with the LBRB analysis of things: autism is not to blame for parents who murder their children – these parents have their own responsibility. Autism is also not to blame for the accidents some autistics unfortunately die of – and that is notwithstanding the fact that autistics have an increased risk of dying from accidents. That doesn’t mean autism is to blame. The unsafe situations in which these children die, are to blame. Lastly, it is tragic that some autistics commit fatal crimes, and it is possible that autism influenced them in such a way as to reduce or eliminate their capacity, but that does not make autism altogether bad. Autistic criminals shouldn’t give autism a bad name, after all.

I will not say that you cannot remember deceased autistics. But that is not the same as condemning their disability. And I am especially outraged at the inclusion of autistics murdered by their parents, as if their autism somehow elicited it. Everytime a Black person is killed in a racist murder, or in homicide unrelated to the victim’s race, we don’t say skin color can be deadly, either, do we? And with regard to the deaths from accidents, can we please focus on autistics’ safety, and safety in general, rather than simply condemning autism again?

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The Limits of Acceptability

If we as a neurodiversity movement say that we should accept autistics as they are, what do we mean? It is possible, after all, to accept a person, but not certain behaviors that person exhibits. For example, MJ of Autism Jabberwocky gives the example of Kim Stagliano’s fifteen-year-old daughter perserverating on infant toys. It is possible for Ms. Stagliano to accept her daughter, but not to accept that she perseverates on infant toys. I, for one, would disagree there, and would say that the non-acceptance of this behavior reflects the ableist norm that fifteen-year-olds shouldn’t be interested in infant toys. However, it does not mean Ms. Stagliano doesn’t love her child.

In fact, we all set limits on what we accept of ourselves and our children, whether we or our children have disabilities or not. These norms are sometimes societal and sometimes individual or family-based. The thing is, they are never universally right or wrong.

For example, it is a norm that, for job interviews, you do not engage in stimming behaviors – or at least not in certain stimming behaviors, since some are acceptable. This norm was created by mostly neurotypical people, and is hence ableist. Some people go so far as to say that stimming at all is wrong, while some people allow it in the privacy of a home.

Even I, as a person who tries to be non-ableist, have my disability-related behaviors I do not accept of myself. In my own case, these are the behaviors that could cause physical or serious psychological harm to myself or others. Meltdowns are an example. Self-harm is another example. I display both, and recently to an increased extent. If Ms. Stagliano’s daughter had been having a meltdown or self-harming in the picture, I would not have disagreed with Ms. Stagliano’s disappointmnet. I would still have found it offensive that she photographed her daughter in this position and put it on the Internet, thereby infringing on her daughter’s privacy. Also, I would hope that Ms. Stagliano’s approach of teaching her daughter not to self-harm – or for tha t matter engage with infant toys – would be supportive rather than punitive, but again, I would not disapprove of her sadness. The reason I consider self-harm to be unacceptable is not that it is any more gross or abnormal to the non-disabled observer, but because it is harmful.

However, this is still an individual standard, not one that is universally right. I also don’t mean to offend self-injurers who don’t feel their behavior is a problem, or who would not call it “unacceptable” even if they thought it is. I also make sure I try not to put myself down as a person for having engaged in what to me is unacceptable behavior. It’s just that: behavior that needs to change, without me as a person necessarily needing to change.

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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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Helen Keller Mythbusting: Of Politics and Disability

Today, Anna over at FWD/Forward is hosting a Helen Keller mythbusting blogswarm. It is surprising how ignorant even I, who definitely heard of Keller many years ago, was about her until very recently. I knew that she was the first deafblind person to earn a college degree, but that was pretty much everything I knew about her except for the stereotypical story about the hand and the water. Of course, graduating from college is an accomplishment not to be minimized, but it simply wasn’t Keller’s only achievement..

As a leftist, I find it very interesting to find out that Helen Keller was a socialist. This is one of the major reasons Keller’s political activism is so little known. Of course, in the early twentieth-centry United States as well as today, socialist activism is not generally appreciated. On top of it, Keller was a suffragist, which was also not liked. As a result, media representations of her shifted from pride in her achievements to focusing solely on her disability. Thereby, the people who used to value Keller were now using ableist tactics to discredit her.

In addition to being a Socialist Party member and a suffragist, Keller helped found the American Civil Liberties Union, which to this day helps fight for the civil rights and liberties of people in the United States. The ACLU is still often seen as somewhat radical, but has gained more appreciation over the years. It is sad that Keller’s involvement in the founding of this organization is not recognized.

All of these achievements would’ve been worthy of recognition regardless of Keller’s disabilities. Her disabilities, however, are used by supporters to make her a token for the disability community, which she wasn’t, and by opponents, to minimize her achievements to her college degree. It is not always easy to tell why people support or oppose Keller: is it disability pride or ableism, as was the case for me, or is it politics? The two are often intertwined, and this is one reason we learn so little about Helen Keller’s achievements as a person and an activist.

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“Crazy” Mother Kills Presumably Autistic Son, Media Reports

In Colorado, Stephanie Rochester killed her infant son. Rochester, who works with autistics as a mental health counselor, feared 6-month-old Rylan would be autistic.

This story is different from most of the reports on parents killing their (presumably) disabled children, in that, this time, the emphasis is not placed on how hard it would be to care for a disabled child. That doesn’t make this story less ableist: instead of focusing on Rylan’s possible autism, the reporter focuses extensively on Ms. Rochester’s apparent depressive and suicidal symptoms, including what prescription medication she was given for it. Now of course it is necessary that, if Stephanie is depressed, she be provided with adequate mental health services while in custody. Also, if her depression played a part in the crime, this should be acknowledged and taken into account. But that doesn’t seem to be the interest of the reporter: this crime must be blamed on either the victim’s presumed disability or on the murderer’s poor mental health.

This crime is horrible. I am concerned about the people who loved Rylan and mourn his death. Of course, Ms. Rochester’s circumstances should be taken into account in court, but when does the media finally learn to focus on what a crime actually is? Homicide happens way too often. Acknowledge that. Please stop blaming “crazy” perpetrators or “defective” victism for it.

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Of Bodies and Burdens: Abortion vs. Child Euthanasia

Sometimes, it would’ve been easier if I were still radically pro-life, so that I could tell anyone supporting abortion or euthanasia that people have no right to take the life of anotheer person, no matter how dependent that person is on someone else. Yet I recognize a person’s right to bodily autonomy, too, and for this reason, should be pro-choice: no matter how many alternatives to parenting exist, there is no alternative to gestation other than to terminate. Therefore, if pregnancy threatens a woman’s health or wellbeing – even if that threat is motivated by factors related to the unborn child she carries, such as if that child has disabilities -, the only option to relieve that threat or discomfort is to terminate the pregnancy. If you believe in a person’s right to do with their own body as they please, therefore, you must automatically be pro-choice on abortion.

But what if you do not want a child, and that child is born? If not wanting a particular child is a valid reason to abort when the child is still in your womb, isn’t it a valid reason to terminate the child once it is born? In my opinion, no, because, unlike gestation, parenting by a specific person is not a necessity to keep the child alive. A parent can choose to give a born child up for adoption, or, if the child has disabilities, can choose to put them in a care home. Of course, care homes may provide less-than-optimal services to children, and adoption might affect the child’s mental health, but the solution is to improve care and adoptive services.

It is interesting, of course, that infant or child euthanasia is only legal on children with disabilities, whereas abortion is legal on any fetus up till viability. If being a burden on one’s parents were a legitimate reason to kill, and if it didn’t matter whether a child is still in the mother’s body or not, and if alternatives such as adoption aren’t relevant, either, then euthanasia should be legal on any infant. Also, if the fact that the infant cannot make their wishes known and therefore has the parent make these decisions for them, that should go for any infant, too. No baby can tell their parents that they want or don’t want to die, and any baby could grow up to be a pain in the arse of the parents.

So why is it all about disabled children? It’s probably that it is abled people making these decisions. They think that living in a marginalized body somehow makes you less of a valuable human being. Not only do they allow euthanasia of consenting adults only if the adult is disabled enough by someone else’s standards to be worse than death – despite the fact that people with the same disabilities might live happy lives -, and not on non-disabled people who “suffer life”, thereby stripping adults of the right to decide what to do with their own lives. On top of that, it is only abled people who can decide that a certain body type makes you worse than death, even regardless of your own opinion if you’re a child, regardless of whether other children with the same disabilities live happy lives. In fact, infant euthanasia with parental consent goes farther: if a parent is unhappy, that is a reason to kill the child, regardless of whether other parents may be happy to parent a disabled child, or this specific disabled child.

In short, abortion is legal on any infant up to viability, because this is the only way to relieve the pregnatn person of the discomfort or threat of gestating. On the other hand, once born, if your parents view you as a pain in the arse, but only if you also live in a marginalized body, you can be killed with these parents’ consent if they feel unhappy about parenting you, regardless of how easy it is to get rid of you without killing you. And even if abortion is not merely about bodily autonomy, am I still the only one who perceives a double standard here?

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I Am Whole: Ableism and Identity

Today, May 1, is Blogging Against Disablism Day again. Each year that I wrote about ableism for this event, I have focused on the effects stereotypes and counterstereotypes – that is, the stereotypes disabled people create in order to replace the stereotypes held by abled persons – can have on various levels. This year, I want to focus on an aspect of life which stereotypes and counterstereotypes have influenced on a very personal level: identity.

Most of my readers will not know this, since I last wrote about it in 2006, but I am mid-continuum plural. This means that, while I am able to present as a singleton person, inside my mind I host a number of parts or insiders that each influence my behavior on some level. There are a number of ableist stereotypes around multiplicity already, that I have to touch on briefly before proceeding to what I actually want to write about. In general, a multiple was either born that way, or became multiple through severe trauma or abuse in early childhood. Neither is the case for me: while I am not naturally mid-continuum, the experiences I had as a child – which I will not go into at this point – are not medically speaking sufficient to have caused me to create inside personalities. And yet I did. And I don’t give a fuck that I don’t meet the rigid stereotypes surrounding multiplicity.

On a deeper level, disablist stereotypes influenced the creation of my inner world, in the sense that each of my parts represents disability in one stereotypical way or another, and various ableist actions, from abled as well as disabled people, call on various insiders to represent me as a person.

First, there is Jane, the Competent Adult, the ultimate counterstereotype. When people call upon “high-functioning” autistics, those with Asperger’s Syndrome only, brag about how independent blind people can be, or call me out on my intelligence, they see her in my place. When people state how easy and cost-effective it is to accommodate disabled people, they imagine accommodating her in my place. In the right circumstances, she comes out, and you really think that I am her.

Then, there is Carol, the incapeble one, the ultimate representative of complex needs. When people talk about how complicated my case is, how hard it is to find the right services for me due to my multiple disabilities, or when they exercise control over me in the name of safety, they see her in my place. When they talk about how some people really cannot be accommodated and need to be cured of their disabilities, they want to cure her in my place. Despite my high intelligence, if you get me in the right circumstances, she comes out, and you really think that I am her. In fact, in my offline life, Carol is out quite a bit.

Then, there is Milou, the eternal child. When people talk about disabled adults as if they don’t understand, or talk about us or treat us as if we are children rather than adults, or when they brag about a tiny accomplishment as if it were the biggest success in the world just because we are disabled, they see her in my place. When care professionals tell each other that they should treat me like they would a little child if I exhibit X behavior, they imagine caring for her in my place. Thank goodness, Milou hasn’t been elicited a lot lately, but she is still around.

Then, there is Morgan, the child too big to handle. When people talk abut what happens to disabled children when their parents die, when they wonder to themselves whether they will ever live independently, or when they talk about institutions as the best possible option for a violent teenager, they see her in my place. When they worry about my future, they worry about her in my place. She is similar to Carol in some ways, but she still has a distinct identity of her own.

I could go on listing the other stereotypes of disability represented in my inner selves. I could also go on to describe the function of the few insiders who do not represent parts of my identity, but who are there to mediate them. I am not going to do that, since I think the point is clear: each of these parts represents me in some way, but it is a stereotypical way. I can be Carol when I’m in the worst of my meltdowns, or I can be Jane when I pass my Open University classes with flying colors, or I can be each of my other parts in various circumstances. All of my identitites are more formed than the flat image I painted here, but in some deep, fundamental way, they represent disability stereotypes.

Yet I am whole. I am not one of my parts one day and another the next. I am not a series of stereotypes and counterstereotypes, and a few identities to mediate them. I am a person. I have had my own experiences – all of them, regardless of whether a person with the characteristics I am perceived to have, can have had these experiences. I have my own abilities and difficulties – all of them, regardless of whether they fit a particular view of what disability or “functioning” can be like. I have my own care needs – all of them, regardless of whether the care system is equipped to meet them or not. I cannot pretend to be one of my fanthom selves just because it would be so much easier if I could. I am all of them, and I am none of them. I am a whole person, after all.

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