Tag Archives: Disability Rights

Everyone Can Be a Hero

One of the prompts for Friday Reflection this week is to write about someone who is a hero to me and why. I see a hero as someone who is very inspiring to me, whom I look up to. I discussed this with the institution pastor last year, when they did a summer series at church on inspiring people. He chose Mahatma Ghandi.

I see many people as inspiring. The most well-known person I mentioned to the pastor – but he’d never heard of her -, was Helen Keller. You’ve probably heard about her “miraculously” learning to use tactile sign language through the work of Anne Sullivan. Keller is also relatively well-known for having graduated college while being deafblind and a woman, both of which put her at a disadvantage in the patriarchal society of her time. However, you probably didn’t know that Helen Keller was a political activist, taking an important position in women’s suffrage and socialism. She was also one of the founders of the American Civil Liberties Union.

However, you don’t have to have overcome your disadvantages in some kind of miraculous way to be inspiring. In fact, most people only see Keller as having “overcome” her deafblindness and overlook her activism.

There are other disabled people I consider heroes. They however don’t do anything that makes them well-known and many have not “overcome” their disabiities at all. For example, I mentioned Cal Montgomery, author of Critic of the Dawn to my pastor. I don’t know her personally and she isn’t a public figure, so I cannot be sure that how I see her is correct. I do not know more about her than what I see through her writing. However, I can tell that she has determination. I do not admire her for having somehow proven her capacity to get out of an institution by denying her disabilities, which she may’ve had to do. Rather, I admire her for writing about human and civil rights for people judged to be too severely disabled to have these rights.

There are undoubtedly many other disability rights heroes in the world. Some are well-known in their particular disability communities. Others are not. What they have in common is not the “miracle” of their “overcoming” their disabilities, which Keller is publicly known for. Rather, they live their lives not just in spite of but also with their disabilities.

Living your life, in this sense, is a political statement. This applies particularly in the disability community, but it generally applies to everyone. People don’t need to be the first or the best or the greatest to be heroes. Everyone can be a hero in some ways.

Reflections From Me

Autism Speaks: Why We Need Autistic Representation

Through the week-end blog hop over at Single Mother Ahoy!, I came across a post supporting Autism Speaks and debunking the argumetns people have against it. The first of these is that Autism Speaks has no autistic people on the committee. That doesn’t bother Melissa Hopper, the post author, presumably because she’s a parent. It does, however, bother me. Since every autism blog (and though I don’t really write an autism blog, I sometimes write about autism, so…) should have a post for or against Autism Speaks, here’s mine. It isn’t, by the way, directed just at Autism Speaks, but at every parent-run organization aimed to represent the entire community of people with a particular disability.

Suppose, I wrote to Melissa, that your son were gay. Would you raise money for an organization that had only parents and families of gays on its committee? I realize that there are organizations like PFLAG (Parents and Friends of Lesbians and Gays), and Melissa might in this hypothetical scenairo want to join them. I mean, there’s nothign wrong with parents of children or teens or for that matter adults who are different wanting a place to be represented too.

The thing with Autism Speaks and possibly other organizations is that 1. they pretty explicitly exclude autistics from the committee, and 2. they don’t support the inclusion or equality of autistics, choosing instead to support their eradication.

Now I do realize that autism is a disability whereas homosexuality is not. People may disagree here, but I do see autism as a disability. However, that still doesn’t mean that social inclusion and equality shouldn’t b primary goals of an organization claiming to speak for that disability population, particularly since the majority of adults with this disability advocate this.

Once Melissa’s son grows up, I asked her, does she want to be his representative for the rest of her life, or does she want him to be able to speak for himself? I am hoping for the latter, as most parents want their children to grow up to be able to speak for themselves. Now I can totally see why at age three Melissa’s son can’t speak for himself and he needs his mother to do so. I totally also see that right now the number of autistic children (who need their parents to speak for them) is greater than the number of autistic adults. In twenty years or so, this will not be the case anymore. And while there will still be autistic children, and hence the need for a parent organization, an autistic-run organization should have far more to say. And just for your information: there are already a number of adults who grew up with parents supporting the likes of Cure Autism Now, who are now old enough to speak for themselves and vehemently disagree with the cure position. Christine Motokane, whose book I reviewed on Wednesday, is one of them.

In the Netherlands, there ae two organizations for the schizophrenia community. One, Anoiksis, is run by people with schizophrenia themselves, while the other, Ypsilon, is run by families. I can see why there’s a need for both, but they cooperate on some level. Same for the Dutch Autism Society and Persons on the Autistic Spectrum. (The Autism Society has autistic members, like myself, but I don’t know if they have anyone autistic on the committee.) Autism Speaks has never sought any form of cooperation with autistic-run organizations. It will never do so, because Autism Speaks advocates the eradication of autism rather than the equal rights of autistics.

Now I do know there are autistic people who support Autism Speaks, and John Elder Robison used to be a token a =utistic for them. I don’t even have strong opinions against all of Autism Speaks’ positions – I used to read their blog and it wasn’t too bad. I also wouldn’t mind Autism Speaks existing if a major organization representing autistic people themselves were getting as much support. Like with the Anoiksis/Ypsilon thing, I can see the need for a parent organization. But Autism Speaks aims to speak for autistic people without having a single autistic person on the committee, without cooperating with autistic people, and without advancing the inclusion of autistic people. If just one of these were the problem, oh well, but now that all of them are, I have major concerns.

Melissa’s son is just three. She doesn’t likely think of him representing himself. But he’ll eventually reach that point, and by that time, I can only hope he has his mother’s support rather than opposition.

“You’re an Adult.”

Last Tuesday, I went to the dentist. I have trouble taking care of myself, including brushing my teeth. I can’t remember to do it regularly, and when I do remember, I find it hard to motivate myself because I’m sensitive to the feel of the toothbrush and the taste of the toothpaste. The dentist gave me a mouthwash with a relatively neutral taste and told me to rinse with that after toothbrushing. I am allowed to brush my teeth without toothpaste for now to get used to the feel of the brush and into the habit of brushing first. The dentist instructed the nurse who was with me, a nurse from another ward, to tell the staff they needed to actively remind me to brush my teeth. The nurses on my ward, however, didn’t feel like this, saying I’m an adult so should take responsibility for my own self-care.

The phrase “you’re an adult” is uttered time and time again when I (or other patients, but I’m speaking for myself now) require help or display a problem that is not normal for a healthy adult. Saying we’re not healthy is not an excuse, because what are we in treatmetn for then? A nurse told me yesterday that if I had a low IQ or had been floridly psychotic, this would’ve been an excuse not to be able to remember my self-care. As if people with an intellectual disability or psychotic disorder are not adults.

The thing is, whether you’re physically or mentally capable of taking care of yourself, does not determine whether you’re an adult, and whether you’re an adult, does not determine your respectability. The idea that an adult should be capable of caring for themself, is ableist. The idea that an adult (at least, one who displays adult abilities) is more respectable than a child, is not just ableist but ageist too.

Honestly, I don’t care whether I’m an adult. I don’t care whether my abilities reflect my age. I care that I’m an individual and have individual needs. In some areas, I’m self-reliant. In other areas, I require practical care. In others, I require guidance. None of this makes me deserve less human dignity. Similarly, children and persons of any age with intellectual disabilities deserve as much human dignity and respect as a healthy adult does. We treat them differently, of course, but that is because they have different abilities, difficulties and needs. A child is different from an adult, and an adult with a disability is different from a non-disabled adult, but that doesn’t make them a child. Everyone is an individual who deserves to be treated like an individual with dignity and human rights.

Inclusion vs. Insertion or Integration

On a post on disability acceptance, someone commented that insertion is not the same as inclusion. This means that putting disabled people in mainstream classrooms, in the community, etc., does not automatically lead to them being accepted into that comunity. In this sense, there are parallels to the racial and gender equality movement, but there are also differences. The parallel involves the fact that, just because for example African-Americans were finally legally allowed to sit in the front of the bus in the 1960s, doesn’t mean they weren’t bullied into the back anymore. The difference, which to soe extent applied to certain groups of ethnic minorities too, is the need for accommodations to be made to fully include disabled people.

There is another word that is frequently used in disability situations and which is commonly used for ethnic minorites: integration. Integration involves not just insertion, but the expectation on the part of the majority that the ethnic minority or disabled person adapt to the majority. In a sense, this is somewhat opposite to inclusion, where the majority makes reasonable accommodations for the minority. It is also contrary to acceptance, because, while the majority tolerate the minority once integrated, they won’t accept them the if they don’t meet up to the cultural norms of the majority.

I have often struggled with the social model of disability, because it to some extent ignores the fact that disable dpeople aren’t just as capable as everybody else – an argument used by the women’s and African-American civil rights movements to claim equal rights. With equal rights, after all, come equal responsibilities. To draw a parallel to ethnic minorities again, immigrants to the Netherlands are themselves responsible for making sure they learn Dutch civics and language. I do not personally agree with this, but it is reasonable from a conservative, small government perspective, which is currently holding the majority here. Is it unreasonable then to insist that a person with a disability put every effort into becoming as non-disabled as possible? My heart says it’s unreasonable, but my head is having a hard tiem finding arguments for it.

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.

Disability and Quality of Life

A few weeks ago, I read a post on gratitude for people with disabilities. It made me think: are disabled people naturally presumed to be unhappy? And if so, do we have an obligation to put up a shiny happy face to make the world know we’re not unhappy? I think indeed we are often thought of as necessarily unhappy. While it would be great if we could show some gratitude, for ourselves and others, this is unrelated to disability. Everyone can be a pain in the ass when they’re constantly grumpy.

I am a relatively unhappy and a significantly disabled person. I do not feel these two necessarily go together. And what if they do? I sometimes do feel crappy because of frustrations related to my disability. Does this make me a pitiful crip? I don’t think so.

Let’s face it: life throws challenges at all of us. It’s not like living with a disability entitles us to be grumpy all the time. On the other hand, we are not required to put up the shiny face at all times either just to show the world that our disability is not a harrowing fate.

I remember when I was aroudn fifteen participating in a preemie folloow-up study. Part of it involved a quality-of-life questionnaire. I was honest that my quality of life was pretty crap, but made a big deal out of making clear this was not due to my disability. After all, I didn’t want the doctors to think that blindness is somemthing worse than death, and, let’s be real, neonatal specialists do use quality of life to base ethical decisions about life or death of future preemies on.

Are we, as disabled people, responsible for making the world believe that disability is not a big deal? I don’t think so. To give an example, when in like 2011 two deafblind twins were euthanized in Belgium, the National Federation of the Blind (U.S) responded by playing the Helen Keller card. See, she was a major achiever and was deafblind, so deafblindness is no reason to have a miserable life. Maybe so, and I agree that a disability in itself is not necessarily a reason for suicide, assisted or not. However, the NFB did not know the specific circcumstances of these people, and neither do I. Both sides of the euthanasia debate made the case of the deafblind twins about deafblindness. What if deafblindness was only used as an excuse for the twins to get assisted suicide, while the real reason was subjective suffering that may or may not have been related to their disability?

Since euthanasia was legalized in the Netherlands in the early 2000s, the definition of unbearable suffering, which is required for euthanasia, has undergone significant inflation. Formerly, euthanasia and assisted suicide were only lejal on terminal patients, while just today, a man who euthanized his aging but non-disabled wife was found guilty but not sentenced. Maybe there’s a difference in that the man in today’s case was not a doctor, but people constantly make it about the wife’s non-disabled status. Let me make one point: if you allow euthanasia or assisted suicide but only on those with a disability, that’s discrimination. It’s not like non-disabled people can’t suffer. As sort of an inverted argument, are non-disabled people required to live in misery just because they don’t have a disability?

Treatment for Its Own Sake

Sometimes, I get the impression that the treatment we get in a psychiatric institution is done for its own sake only. Like, yesterday I was irritable. I tried to communicate that I wanted the radio to be turned off. No-one was in the room except for a nurse, who went like: “Have you discussed with your therapist how you can cope with this?” She meant coping with overloading noise. I went totally defensive and defiant and told her I wasn’t going to cope with the freaking radio if no-one was there listening to it. She told me the other clients were coming soon so the radio was on in case someone wanted to listen. Well, WTF? This whole thing gave me the impression that the only reason the radio was on was to teach me distress tolerance.

Let me tell you one thing, the real world isn’t there to teach people distress tolerance. If you want me to be prepared for the real world, then don’t create these fake situations that have no meaning outside of the hospital. The nurse meant to tell me to communicate my wisht o have the radio turned off differently, but then tell me so and don’t go like: “In the real world you’ll have to live with others who want to listen to the radio.”

I know that the psychiatric institution is not like the real world. No-one beyond college age in the Netherlands lives with ten people on a hallway with just their own room. In the real world, you have to negotiate radio-listening time sometimes, but not with a nurse whose ultimate goal is to annoy you so you can learn distress toleance – unless you’ve got a two-year-old or a teenager, maybe. More importantly, real-world dynamics are not reflected in the psychiatric system, so don’t pretend that they are. Stop pretending to prepare patients for the real world when you aren’t. Institutional dynamics are the first thing that need to go if you want to prepare people for the real world. Since these are not going out the window anytime soon, let’s just stop assuming you’re preparing us for anything other than institutionalized life even if it means institutionalized in the community.

Excusing or Accepting

Many of the people who commented on my previous post, most of them likely unfamiliar with disability rights, commented on a particular part of it: that in which I talked about disabled people being carelessly excused from meeting normal expectations. While it is true that a disabiity in itself should not be a reason to excuse people, in the sense that people think of the disabled as pitifu and therefre to be excused, disability equality goes far beyond equal expectations. Actually, unless a disabled person commits a crime, they are entitled to the same civil rights and inclusion that abled people are. “Normal”, that is, non-disabled standards of performance should not be relevant here.

People have a right to acceptance, and, while this means they should be expected to behave in an acceptable manner, what this means is really up for debate. Is an autistic not acceptable because they scream? An effort should of course be made to help the autistic unlearn this behavior, but if they can’t, that doesn’t make them less acceptable as a person.

We need to make the distinction here between the behavior and the person. All people have some annoying behaviors that are unacceptable to at least a number of others. We can disapprove of this behavior, but we shouldn’t be excluding the person for this. Note, please, that my comment about annoying behavior goes for disabled as well as non-disabled people. Once a person has a disability, however, accepting them in spite of inappropriate behavior is often seen as excusing.

Disability Hierarchies

Last week, K at Transcending CP wrote an interesitnb blog post on the “us” vs. “them” mentality non-disabled people have about people with disabilities. I commented and mentioned several ways the disabled themsleves have an “us” vs. “them” mentality towards other disabled people. Today, I want to expand on this by discussing disability hierarchies.

First, there is the hierarchy of severity of one particular disability. For example, at the school for the blind which I went to from fourth until sixth grade, the people with some vision had a lively competition of who could see best. We even used to introduce ourselves as “Johnny who has 20/400”. I only actively competed in my first year at this particular school, because in fifthe grade, the partially sighted children (I was going to write “partials” here) and braille readers were merged and I was in a class with only one other braille reader with some vision, who avoided this competition it seemed.

Similarly, among autistic people there is a competition. If you go to Wrong Planet or another Aspie-dominated site, you’ll see that most people there don’t want to associate with “low-functioning” autistics. As a person who is only “high-functioning” in terms of IQ and who despises this hierarchy, I don’t like this. It’s like those with “low-functioning” autism have no right to the acceptance that the “high-functioning” want.

Then there are disability hierarchies that cross lines between different disabilities. An example is my having bullied an intellectually disabled child when I was at the aforementioned school for the blind. I apparently felt that intellectual disability made someone less of a worthwhile human being than visual impairment. I don’t think I actually thought that deeply, but I did bully this girl because of her intellectul impairment. Adults with physical or sensory impairments do have the ability to actually think about this, and it is reflected in statements like “You may be able-bodied but I am able-minded”.

Conversely, the more visible disabilities tend to be viewed as more “real”by some people than developmental or psychiatric disabilities. As a poignant aexample, my psychologist, when describing my disabilities, only mentioned my visual impairment and my slight motor deficits. Also, when I was still on the locked ward several years ago, there was a partially sighted, hard-of-hearing man on my ward who obviously also had severe mental illness. Because of his limited but existent sight and hearing, he was expected to do a few chores that I, being totally blind, was excused from. At one time, I heard a nurse tell him: “You may be twice-disabled, but you are not thrice-disabled.”

For a long time, disabled people have been “them”. The Black civil rights movement was grounded in the belief that Black people are just as capable as Whites. Then the blind and physically disabled and Deaf movements were grounded on the idea that people with sensory or physical disabilities are, with reasonable accommodations, just as capable as people without disabilities. Now people with developmental and psychiatric disabilities are demanding civil rights, an sometimes this si grounded on the same principles, hence creating a new “them” for those who don’t meet the “just as capable” standard. It is my hope that, at one point, we can live without the “us” vs. “them” mentality, but this hope may be idle. After all, as a human race, are we truly evolved enough to recognize each of us as equal? And if we were, then animal rights activists would say that’s still not good enough. Rights activism always demands a shift from “them” to “us” but will there ever not be “them”? And if so, will we survive?