Tag Archives: Ableism

Why I’m Happy I’m Not Gifted After All

In 1999, I had a psychologcal evaluation done. Included in it was the verbal part of the Wechsler IQ test for children (WISC). The performance part can’t be administered because I’m blind. My verbal IQ score, according to the report, was 154. This indicates I may be gifted.

There were several problems with this test, the most importnat being that I’d had the exact same test a year earlier. Now i must admit the psychologist who tested me in 1998 also estimated my IQ as in the gifted range.

In 2002, I had the verbal part of the Wechsler IQ test again as part of a research project on former preemies. I scored above-average, but not gifted. I blamed this on the new version of the WISC being used and continued to use the score of 154 as my official IQ score and proudly showed it off wherever appropriate. In fact, I used it as my official IQ score up till a few months ago, when I had the verbal part of the adult Wechsler test as part of my autism re-assessment. It showed I have an above-average IQ, in line with my high level high school education, but definitely am not gifted. My verbal IQ as of 2017 is 119.

When I told my parents I suspected I didn’t score as gifted on the test this year, my mother responded with: “You just don’t want to know about it.” She seemed to mean I underestimated my achievements, but did send me the message that I was supposed to be gifted or I didn’t try my best.

IQ, of course, is not a static characteristic. Before the Flynn effect was known, researchers thought people’s intelligence started decreasing in their late twenties already. I don’t know much about the science of changing scores on IQ tests, but I do know many factors contribute to one’s performance. Like the letter written to me at the end of the 2002 research study said, it’s just a snap of a moment. Maybe my IQ did really decrease as a result of my having been out of education for ten years. Maybe the medication I take has a dulling effect on my cognition. Maybe, like I said, the score in 1999 was based on retest bias. I do care in some ways, because I don’t want to be “dumb”. Then again, an IQ of 119 isn’t “dumb” and labeling people with a lower IQ as dumb is ableist and classist anyway.

However, I am also happy that I am no longer labeled gifted. I can still say I’m smart and people will acknowledge it, but I don’t need to carry the burden of being seen as “hyper-intelligent”, as my father once coined it.

There are a lot of ideas about gifted people that just don’t apply to me. Now some of these ideas are really prejudices, so the solution isn’t to distance myself from the community. However, within the gifted community there is also the assumption that people who are gifted naturally struggle with social and emotional development, unless they interact with people of their intelligence level. I embraced this idea before I was diagnosed with autism. I still understand it bears some truth. However, my take on diagnosing misfits is pragmatic: if an approach suited to one population clealry doesn’t fit, then maybe the person in question doesn’t belong to (just) that population after all.

Now you could say I’m blind and (supposedly) gifted, so I really should be given services for blind people who are gifted. In other words, it’s no wonder I struggled at special education, because most kids there are not of my intelligence level, and of course I struggled in high school, because no other kids there are blind. I can tell you though that there may not be many blind and gifted people, but they certainly are there and I struggle with interaction with them too. Besides, no-one ever gave me the opportunity of going to a high level special education school.

I don’t honestly know why, interestingly, people prefer my supposed gifted identity to my autistic identiyt when they want to choose one. I prefer my autistic identity, because it fits better. For others though, there seems to be something inherently wrong in autism and something inherently fabulous in giftedness. This goes even for people who keep telling me that all gifted people struggle with social interaction and behavior so I don’t need my autistic identity for that. Well, why then not say I don’t need my gifted identity for that?

“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.

“You Are Not Like My Child” #AtoZChallenge

Welcome to day 25 in the A to Z Challenge on autism. Wow, we’re almost done! Today, I discuss a statement often made by parents of “low-functioning” autistic children towards adults with autism: “You are not like my child.”

This statement is often used to discredit adults with autism who want to advocate against a cure or who want to advise parents against certain treatmets for autism. In a way, oof course, the parents are right, in that no-one is exactly like their child (not even that child’s hypotehtical identical twin).. Of course, parents have the right to make decisions about their child’s health, so it isn’t like an adult with autism has the right to make that decision (unless the adult happens to be the parent of an autistic child too).

However, this usually isn’t about adults trying to make decisions for other people’s autistic children. I for one recognize parents’ decision-making rights and I have never directly intervened in a parent’s decisions that I did not agree with. However, the parents in this situation often use these words to discredit autistic adults trying to advocate for themselves and their right to remain the best autistic people they can be.

I, in fact, have had people tell me that, unless I agreed that I was nothing like their autistic child, I should get a fad treatment to get cured of my autism. This disrespects adults’ rights to make medical decisions for themselves.

Another aspect in which parents and adults with autism have opposite interests, and in which this statement is often used, is representation of autistic adults in organizations like Autism Speaks and the Autim Society of America. It is a fact that thse and other such organizations have few or no autistic adults on the board of directors. Autism Speaks used to have John Elder Robison as a poster puppet, but that’s about it. In few other disability communities do parents say that adults with said disability cannot represent themselves, but in the autism community, it is a common idea. When Ari Ne’eman was eelect into the National Organization on Disability, parents everywhere protested. Now I for one do not agree with everything Ne’eman says and I do feel he’s a bit too inexperienced to serve on a government advisory board. However, I do not see why, just because he isn’t a parent, he can’t be on the board.

Let’s face it: we are not like your child. We are adults. However, autistic adults at one point were autistic children, and many had the same problems today’s autistic children are facing. Parents could learn from how we coped.

I do not say that there are no autistic children with an intellectual disability or who are non-verbal, but there are autistic adults with these challenges too. Also, if an autistic adult appears to function well now, it doesn’t mean they functioned as well as a child – or even that they function as well in real life now.

I consider myself a moderate mama on many debatable autism issues, but one thing I can’t stand is being silenced for being disabled. This is exactly what the “You are not like my child” crowd do.

Self-Reliance Is Overrated, Self-Determination Is Underrated

In his post on cripple identity, William Peace talks about the fact that non-disabled bodies with their non-disabled functions are seen as the norm, and disabled people never fit in. As Peace gets older, he develops an increasingly carefree attitude regarding these ideas, thereby embracing life and his disabled identity in life.

As I read Peace’s post, several points came to mind with regards to how his reasoning can be applied to those with cognitive disabilities or mental illness. He explicitly writes about walking as an overrated function, but what about such functions as speech, language or cognitive processes such as logical thinking and organizational skills?

I am reminded of a discussion I had with my old psychologist when I had only been in my current institution for a short while. She was discussing the “can” vs. “can’t” attitude as presented by physical rehabilitaiton patients as well as the mentally ill. She tried to explain the importanc eof having a positive attitude towards learning practical skills such as cuttign up my food (which I am physically nable to do) and cleaning my room (which I am unable to do due to executive dysfunction). What she didn’t realize is that my refusal to learn these skills is only partly out of lack of self-efficacy (low self-esteem). It is more out of a feeling that these skills are not as important. I didn’t go hungry when I lived independently, and though my house did go dirty, if I lived with my husband, it wouldn’t be much harder for him to do most cleaning whether I lived there or not. In my opinion, self-regulation skills and self-directedness are much more important. I did, after all, end up in a psychiatric crisis when living on my own.

As disabled people – and as abled people too, but they don’t seem to realize it -, we need to set priorities. I might’ve wanted to learn to cut up my food or clean my room, if I had the energy to do this amongst all the energy that it costs me to manage my anxiety, regulate my fluctuating emotions and basically stay as close as possible to mentally stable.

Let me say this very bluntly: self-reliance is overrated. Self-determination is underrated. Too often, disabled people are trrained in the skills necessary to appear as non-disabled as possible. They are rarely trained in the skills necessariry for being as self-determined as possible. This goes especially for cognitively disabled and mentally ill people, who are still presumed to have a reduced capacity for self-direction.

Even today’s psychiatric rehabilitation movement, with its focus on recovery groups, (ex-)patients as support workers, and the strengths method, still teaches that mentally ill people can live normal lives in spite of their mental illness. It does not teach that it is possible to live a normal live while embracing your mental illness, let alone that the entire idea of “normal” is hugely overrated. The recovery group I participated in in 2010 was groundbreaking in the respect that it consisted of institutionalized patients, some of whom (like myself) weren’t moving into less restrictive environments.

Less restrictive. Boy, need I talk about that? Less restrictive should mean that a person has more choices over how they live their life, not that there is less support. In this respect, the physical disability movement has already paved the road with their independent living centers for example. Unfortunately, the law here in the Netherlands is not in favor of mentally ill and cognitively disabled people in search for self-determination, because, besides needing constant supervision, the only ground for long-term care with 24-hour availability is “severe self-direction problems”.

Sensitivity Is a Good Thing

“You are too sensitive.” I and other people with mental health problems hear it all the time. I was raised with the idea that I should be more laid-back. Now I can see that being laid-back is good, but when it’s used to mean not to react to wrongs in our environment, it’s not so good.

Over at Pride in Madness, there’s a post on being sensitive. Its main point is that sensitivity used to be a positive trait. People who care about the world around them, used to be described as sensitive. Now, it’s used to mean “overreactive”. We easily forget that people who fought for the rights we now have, used to be seen as sensitive and overreactive, too. Women’s rights activists were diagnosed with “hysteria” as a way to silence them. This is a way for the dominantly male, White, heterosexual, non-disabled culture to keep its members in a privileged position. And this is exactly why we need sensitive people.

Everyone is privileged in some way. I remember last year considering the Black people protesting the St. Nicholas celebration in the Netherlands because of its association with Black slaves, overly sensitive. That was a mistake. I don’t promise I will never make this mistake again, and so I can see why men make the mistake of calling women overly sensitive and non0disabled people make the mistake of calling the disabled overly sensitive. This is, however, exactly why we need reminders from people like the author of Pride in Madness that sensitivity is a good thing, and that we need people who are sensitive to the wrongs in the world in order to make them rihgt.

Autistic Pride Day: Everyone Has a Reason to Be Proud

Today is autistic pride day. It’s been celebrated since like 2005 and was controversial from the start. Joel Smith, oen of the editors of Autistics.org, wrote a post explaining why he didn’t want to be associated with the “oh so intelligent” autism stereotype. Neither do I. I may be intelligent, but this is not something I’m proud of, and basing autistic pride on people’s supposed intelligence, is discriminatory towards those with intellectual disabilities.

To be honest, I’m not generally proud to be autistic. I know many autistics and parents of autistic children who do not find pride in autism. Really, why should we be proud of a disability? We should be proud of ourselves, our families, the communities we belong to. This may include the autistic communty. We should be proud of what we contribute – and everyone contributes something. I am proud of my creativity and my perseverance. Whether these are related to autism, is beside the point.

In my opinion, pride in autism derived from positive autistic characteristics, discriminates agianst autistics who do not share these characteritics. Like, not all autistics are good writers (or can write at all), perseverant, or as I said intelligent. You can be proud of these characteristics in yourself, but saying these make up your autistic pride, is ableist.

I want to reach out to all autistics, whether they have the skills necessary to participate in a pride event or not. I also want to reach out to the parents and carers of those who cannot participate in autistic pride day. I’m pretty sure all of them find something in the autistic they care for that they are proud of. After all, everyone has a reason to be proud.

Mental Illness Is Real Illness Too #BADD2014

When I signed up to participate in Blogging Against Disablism Day 2014, I originally intended to write a semi-academic post on what it means ot be disabled and who can identify as such. Then I read Kees Kooman’s Dutch book on chronic fatigue syndrome (ME/CFS), which is aimed at advocating the idea that ME/CFS is a physical rather than psychological illness. Fine with me – there is a lot of evidence that ME/CFS is a physical illness. What bothers me, however, is the idea, propagated throughout the book and in many other places within the chronic illness community, that a physical illness is somehow more real than a mental illness.

I have a mental illness. I also have largely unexplained physical symptoms, which the doctors for now call probable irritable bowel syndrome. IBS, like ME/CFS, is an illness with clear physical symptoms which however have not yet been explained. This doesn’t mean no explanation will be found – many cases of “hysteria” in Freud’s era were later found to be brain tumors, after all.

However, what if IBS and ME/CFS are actually psychological? Does this mean that we don’t want to get better, as Kooman continually suggests. In my experience, living with a diagnosed mental illness, it doesn’t.

I see this kind of ableism towards the mentally ill everywhere. I have met many autistics who resist the idea of autism as a psychiatric diagnosis. While again I am on their side, their arguments discriminate against the mentally ill. It isn’t like mentally ill people always need to be pushed into independence, while autistics and others with neurodevelopmental conditions need lifelong support.

In case you’re wondering why I care, here’s why. The Dutch Long-Term Care Act, which is due to take effect next year, originally excluded those with psychiatric conditions (which I’m assuming includes autism without intellectual disability) from care. People with mental illness needed to get care and treatment through health insurance and locally-funded social support. The mental health platform, supported housing alliance and some other stakeholders fought this exclusion and it seems now that those who’ve been in residential treatment for at least three years on end, will qualify for long-term supported housing. I would qualify under this condition, but the large number of revolving-door patients, who are constantly being admitted, discharged and readmitted, wouldn’t.

The mental illness means not wanting to get better idea also has practical implications for treatment. People with certain mental illnessses, like personality disorders, are already stigmatized for being just a pain in the butt. I have been told many times that I’m manipulative, attention-seeking, and just having behaivor problems that I need to overcome. Of course it is wrong to assume the same of ME/CFS and IBS patients, but why in the world do they need a physical cause for their illness to claim they’re truly suffering?

Let me make it very clear that I’m not saying that ME/CFS is all in your head. I’m saying that if it were, that still didn’t mean you don’t want to get better. Symptoms are real, whether they’re psychological or physical and, if physical, whether a medical cause can be found or not. As a person who has been accused of imagining a mental illness, I want to say that, unless someone is malingering (ie. faking for external gain), it doesn’t matter what the cause of the illness or disability is in terms of whether it is a real illness or disability. Whether you strive for the illness or disability to be cured, by the way, doesn’t determine whether you’re ill or disabled eihter, but that is beyond the scope of this post.