Tag Archives: Discrimination

A Call to Revive the Concept of “Cousins” in the Autistic Community

Today, I was rejected from a Dutch autistic women’s forum. I had already been kicked off last August for having lost my formal autism diagnosis, but had reapplied because I am in the process of getting a second opinion. Back then, my losing my diagnosis had stirred up a lot of commentary as to why I’d been presenting as autistic for six years – the time that I’d been a member of the forum – if I wasn’t. Well, for one thing, that’s just one professional’s opinion that I’m not autistic, while three others said I am. Not recently, but since when does one lose an autism diagnosis as one ages? However, the fact that the admins doubted I’d get anything but suspicion and hostility if I came back, prompted them to reject me for good. Thankfully, people in other autism groups, especially international ones, were still welcoming and supportive.

Then I read Mel Bagg’s blog post from last month, which was on the subject of autistics and “cousins”. A “cousin” is someone who is not autisitc, but who has some significant experiences that are similar to those experienced by autistics due to a related condition. For example, Mel Baggs tells the story of a person with hydrocephalus who could relate to many of the social and communicative difficulties that autistics experience, but wasn’t autistic. As I have hydrocephalus myself, this struck a chord with me.

Mel Baggs”post is a call to revive the concept of “cousins” in the autistic community. I applaud this, for it’d finally mean I could fully feel in place in the autistic comunity again. I mean, autistic communities used to ask that no neurotypicals join or participate. now they’re asking allistics – a term I’d never heard of but which means non-autistics – to keep out. Though most internatoinal communities who state allistics are not allowed, welcome self-diagnosed autistics, I still feel a bit left out.

Like Mel Baggs says, the autistic community can be very excluisionary. An example is the Dutch forum I got kicked off from. I didn’t know this until I lost my diagnosis, but apparently it has the rule that people who suspect they’re autistic get a year to get a formal diagnosis and if they don’t get it, they’re out. I mentioned this is a women’s forum for a reason, because women have a particularly hard time getting formally diagnosed. The other main Dutch autistic community, open to all genders, doesn’t ask for a formal diagnosis. Another act of exclusion applied by autistic communities is the assumption that Aspies (people with Asperger’s Syndrome) are somehow fundamentally dfferent from other autistics, and subsequently the creation of Aspie-only spaces. Other groups allow “high-functioning” autistics in only. This, obviously, perpetuates the division of the autistic community, which perpetuates discrimination. For example, if Aspies are fundamnetally different from other autistics, people can use the idea that Aspies are not really disabled, which is populated by some, to exclude anyone they see as an Aspie from protection by laws like the ADA. They can also continue advocating for harmful “treatments” against autistic people’s wishes based on the idea that autistics who can advocate for themselves are not “autistic enough”. I don’t say that the autistic community is responsible for discrimination by non-disabled people. I do say that those who exclude some people from the community based on being “not really autistic”, “not autistic enough” or too “low-functioning” or “high-functioning”, do contribute to it.

Back to “cousins”. The criteria for autism keep changing over time. I easily met DSM-IV criteria for Asperger’s Syndrome. I probably meet DSM-5 criteria for autism spectrum disorder too. However, I also have hydrocephalus, which according to my current psychologist, means I can’t be autistic. I believe DSM-IV might agree, though DSM-5 definitely doesn’t. Does the fact that I meet the criteria for an autism spectrum disorder, mean I’m legitimately autistic, or does the fact that I have hydrocephalus, mean I’m not? Really, that shouldn’t matter, if “cousins” are welcomed into the autisitic community again. After all, what counts then is not diagnosis or self-diagnosis, but whether I relate to the lived experience of autistic people. It also means the community can no longer be divided along the lines of stereotypes, formal diagnosis or the lack thereof, or suchlike. Everyone who shares the experience of social and communication problems, is welcome. This in turn means we can form a better front against discrimination, because we no longer fall into traps like being accused of not being disabled enough for protection.

In Which I Describe My Views on Euthanasia

Over at Bad Cripple, William Peace wrote an interesting post on assisted suicide. On my old blog, I had an entire category of posts on end-of-life issues, but here, I never discussed my views on euthanasia and assisted suicide as far as I remember.

I live in the Netherlands, the world’s first country to legalize euthanasia. Just days ago, I wrote on my Dutch blog about a book about a GP’s daily practice, in which he openly discusses euthanasia. I also read this book a few years ago that exclusively diiscusses a GP’s take on this topic. The subtitle of the book calls this GP an “euthanasia physician”.

Unlike Peace, I am not principly opposed to euthanasia or assisted suicide. I do realize there are people who are not pressured at all to kill themselves but want to die anyway. This includes people with a diagnosed medical condition as well as people who are “suffering life”.

I do, however, recognize the explicit and implicit discrimination in euthanasia-related law and ethics. People with terminal cancer can be euthanized if they so desire without much further ado. Infants with severe birth defects can be euthanized shortly after birth if the parents want this. However, a case where a doctor assisted in the suicide of a person who was “suffering life”, led to criminal charges.

The law in the Netherlands says, among other things, that a person must experience unbearable and hopeless suffering to be considered eligible for euthanasia. It isn’t stated that this suffering should be because of a diangosed medical condition. However, “suffering” is such a subjective, vague concept. Everyone suffers sometimes. In a society that is dominated by currently non-disabled people, however, it is a common assumption that people with disabilities suffer more than those without them.

As I said, I for one do not principly oppose euthanasia. It’s a much better, less painful way to end your life than conventional suciide methods. I do not say I advocate suicide – it’s a very sad, tragic thing. I also do feel that people who are suicidal need to be helped in every way possible to overcome these feelings. The thing is, we cannot fully prevent suicide.

What I do oppose is doctors suggesting euthanasia. About ten years ago, there was a case of a child born with severe spina bifida whose doctor suggested euthanizing the child. The doctor happened to be my former neonatologist, the one who said in 1986 that they were just keeping me alive and not to interfere, and who said in 2004 that he wonders about some preemies what the heck he’s done keeping them alive. The parents, like Heather Kiln Lanier and her husband (linked to in Peace’s article), believed the doctor was pushing them to consent to euthanasia, which led to a formal complaint. The doctor defended himself in the media, saying it was “just a suggestion”. Well, I do understand doctros have some say in euthanasia because they have to provide the means, but I think they only should be countering patients’ wishes when they do not want to euthanize them. Research on preemies, after all, shows that doctors are more opposed to aggressive treatments and want fewer preemies to be allowed to live than parents.

Speaking of parents, I mean no offense to Heather Kiln Lanier, but parents should not have the right to decide to have their children euthanized. As I said, newborns in the Netherlands can be euthanized under the so-called Groningen Protocol. Babies and children under twelve cannot, or maybe now they can, because the last time I checked on this topic was about a year ago. In any case, doctors are advocating allowing euthanasia on children under twelve with parental consent. You could say that a newborn does not have anything to want as they don’t have self-awareness (this is philosopher Peter Singer’s argument for infanticide). You could not say the same of a child. They may not have the cognitive ability to make informed decisions on medical treatment, but the darn well know when their parents want to have them killed.

I am almost anti-parent when it comes to this. Thankfully, parents like Kiln Lanier allow me to see how much some parents can fight for their children’s right to a fullfilling life with as little discrimination against them as possible. Kiln Lanier definitely respects her daughter’s right to self-determination.

My view on euthanasia basically comes down to this: no-one can decide for another person that they suffer so much that they should be “allowed” to die. Doctors only have the means to providde euthanasia, so they should be allowed to refuse to do it when a patient asks for it. However, they should never suggest a person be euthanized.

This does mean that children and people with cognitive impairmetns usually won’t be able to get euthanized. So be it. I’d rather keep a few people alive against their will than risk killing people who don’t want it. And just for your information, peoople with even the most severe cognitive impairments do have self-awareness, so sod your Singerian arguments there.

“You Can’t Be in Society Like This.” #BADD2015

Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.

Pink Is a Color

There’s a lot of pooha against girls wearing pink lately. Apparently, dressing girls in pink is limiting their future success. Blimey. As the author of Parenting Highs and Lows says, pink is a color. No feminist in their right mind would say that having black skin limits people’s future success, even though in our still pretty racist society, it does. And I know you can change what clothes you wear and not what color your skin is, but so what?

In my opinion, firstly, this is holding girls and women accoutnable for the stereotypes created by society. When I was still active in feminist circles, I learned that making the minority feel responsible for defeating society’s steretotypes, is discrimination. Besides, if girls should not wear pink because it limits their future success, this is only perpetuating the idea that girls wearing pink should not be successful. This is ultimately counterproductive.

I haven’t even touched on what it is that girls are being unsuccessful in when they’ve been wearing pink. It is said to be limiting their careers. As if the only successful women are those who have a career outside the home. This is the mostly male, White, able-bodied society’s norm of success, and women’s rights include the right not to conform to this norm. The so-called feminists who are encouraging people to stop dressing girls in pink because it limits their ability to conform to the societal notion of success, are merely perpetuating the stereotypes they’re meaning to defeat.

Now I for one am not a big fan of pink. I never quite liked the color. I also do not agree with the idea that girls should wear pink, or that real girls or boys wear any color or even sort of clothes in particular. That’s stereotypical. People of any gender should be allowed to wear whatever they want, and if that is perceived to limit their ability to do whatever they want in life, that’s discrimination. Blaming the person being discriminated against, is allowing the discrimination to continue.

Futility, Quality of Life, and Medical Care: A Tale of Two Patients

Over at The Squeaky Wheelchair, I found a sad story (with a happy ending) about a child with a neurodevelopmental disability and a heart defect being denied a heart transplant based on lies and misconceptions about his perceived quality of life. I do not know anything about Maverick’s syndrome or the risks it causes in cases of heart transplantation, so there is still a chance thAT Maverick’s parents sought to minimize the risks of infection in order to make him a more hopeful candidate. Then again, the doctors were making up different stories about why Maverick would be denied a transplant, and his neurodevelopmental disability apparently did play a large part. This is sad, because, unless truly the risk of infection or tumors is increased with this syndrome, the improvement in quality of life for Maverick would be at least as much as that for a non-disabled chhild undergoing heart transplantation.

I feel compelled today to write about the opposite attitutde, one where improvement matters at least as much as perceived normalcy of outcome. My story did not have a happy ending, but that was not the doctors’ fault. The story involves my being approved for cataract surgery this year. This is not as complex a surgery as a heart transplant of course, but it does prove that some doctors are willing to take risks (again, not as big risks as with a heart transplant) for an outcome that may seem futile to non-disabled people. Those who have visited the various places on which I’ve blogged over the past half a year will know the facts of my story already.

I was born three months premature and developed an eye condition that’s relatively common in premature babies. From this condition, I have been legally blind, with as best a visual acuity of about 20/400 to 20/800 with a restricted field of vision, all my life. When I last went for a regular eye exam at age nine, my visual acuity had dropped to the ability to see someone’s hand move at measuring distance. I was considered functionally blind.

I developed a cataract in my only eye which had useable vision at aroung age fifteen. By age seventeen, it had grown so much that I’d lost all but light perception. I never sought treatmetn, assuming that no doctor would be willing to remove the cataract given the perceived outcome. Until 2013 that is. I decided I wanted to know for sure, and if the doctors at Radboud University Medical Center would decide against surgery, that’d be fine with me. (Of course, the decision was a joint one ultimately, but as Maverick’s case shows, sometimes doctors deny care based on perceived futility, and they have a legal right to.) I went through eye exams and my old records were read. Then the doctor gave me the facts – the best outcome would be hand motion vision but there was no way of knowing whether I’d get any improvement until after surgery and there was a risk that I’d lose my remaining light perception. He gave me the choice and I went for surgery. Unfrotunately, it did not result in any improvement. Now please realize that hand motion vision, as I said, is considered useless by most. This is understandable, but from a disabled perspective, and the doctor was the first to actually say so, it is a significant improvement from no sight at all. The outcome may objectively have been futile, but subjectively, it could’ve been significant.

Now let’s go back to Maverick’s story. I am not one to say that any life is better than death, but this is not up to a doctor to decide. Only the patient (and I’m still unsure about the parents in cases of children) can know whether life is valuable to them. Doctors can advise on possible risks and outcomes, and sometimes the risks of the treatment failing outweigh the benefits (as may’ve been the case had Maverick’s condition in fact led to more infections or tumors). As I said, doctors have a right to decide treatment is futile. I could’ve understood this in my own case, and as I said if Maverick truly ran an increased risk of complications. This is quite different from considering a life not valuable because it is lived with disabiities that are irrelevant to the conditin being treated.

This Is Autism

Last week, Autism Speaks told the world that autism is a number of bad things, including fear of the future, life in despair, a burden, etc. As a response, there’s a flashblog going on today where autistics and allies submit their art, videos and blog posts on what autism really is. Here’s my contribution.

Let’s start with the facts. Autism is a developmental disability that causes problems in information and sensory processing. This leads to behaviors such as repetititiveness, withdrawal and different ways of communicating and relating to others.

Autism for me has both positive and negative consequences. One of the phrases that Autism Speaks likes to associate with autism, is in fact correct for me: fear of the future. This, however, is a pretty common fear in today’s society. We’re (here in the Netherlands) still in economically hard times, and I personally witness people worrying about whether they’ll get a job, sell their house, etc. These are fears for the future. They may not be the same as mine – I worry about health care cuts -, but it’s not like my worries are unique to autistics and their families.

Autism sometimes makes it harder for autistics to participate in society – or is it society’s unwillingness to adapt to autistics’ differences? These differences, in my case, include inabiity to handle intense, unexpected stimuli and/or multiple stimuli at once. I know that not all these can be prevented, but it’s people having a mindset that autism is ultimately something that needs to be eradicated at least on the surface, that makes it worse. This attitude leads to people seemingly deliberately ignoring my sensory needs for the sake of treatment. And no, this is not a consequence of autism, this is a consequence of intolerance.

I will not go so far as to say all autistic experiences are due to discrimination. As I said, not all difficulties can be avoided. Yet neither can all difficulties for a neurotypical. Some autistics, including myself, have it harder than most neurotypicals. I won’t deny this, and I won’t deny that autism sucks sometimes, but so do a host of other experiences that we don’t give nearly as much attention to eradicating as Autism Speaks does with autism.