Disabled not disordered: autism and the social model

I’ve often come across Autistic people who say, ‘I don’t see it as a disability.’

And then there are people who say they suffer from autism because they can’t get a job or they’ve been bullied.

In both cases I think the same thing: haven’t they heard of the social model? I don’t think enough people have.

The social model of disability is a way of thinking about disability in which disability results not from an individual’s neurological, physical or mental characteristics but from barriers created by society. The social model distinguishes between impairment, which is when someone has an unusually low ability to do something, and disability, which is when someone is prevented from full participation in society on the basis of an impairment. Society is built to accommodate the needs of the majority and not the needs of people with minority brains, bodies and minds. This is the way I use and understand the word ‘disability’.

In contrast, in the medical model of disability, all the problems a disabled person faces are a result of their impairment. Disability is often used synonymously with impairment or disorder.

An example is when a wheelchair user who can’t walk is unable to enter a public building that has stairs and no ramp. According to the social model, not being able to walk is an impairment, but the problem, the reason they can’t get in the building, is because they are disabled by a lack of wheelchair access. The solution is to make the building accessible. In the medical model, they can’t get in the building because of their mobility impairment and the solution is to do research to find a cure for it.

Autistic people are disabled. Many of us have an impaired ability to process sensory information, and we’re disabled by environments that cause sensory overload. We’re disabled by the way it’s socially acceptable to wear strong perfume that makes us feel ill but it’s not acceptable to cope with stress by rocking. We’re disabled when people don’t say what they mean and we don’t understand them. We’re also disabled when we are able to understand others’ language or function in a noisy environment but it costs us more energy than it costs allistic people. We can end up exhausted.

I don’t think autism should be called a disorder, because to me disorder means an illness or something that’s wrong. Autism isn’t an illness or something wrong with us, it’s the things that Autistic people share, and those things are part of who we are. It’s associated with impairments, and with struggles, but even impairments and struggles don’t make something a disorder. When my cat died my grief was painful and debilitating, but we don’t call grief a disorder because it’s considered normal and reasonable and acceptable. Autism should be considered normal and reasonable and acceptable. (The problems autism causes for me aren’t nearly as bad as losing a loved one.)

And Autism should exist because if it didn’t, Autistic people would not exist. All people should have the right to exist.

Opponents of neurodiversity sometimes describe is as the idea that autism is ‘just a brain difference’. I don’t know if many neurodiversity supporters actually think this, but I think it’s clear that autism isn’t just a difference. Autistic people have impairments, such as in language and sensory processing. We also share things that don’t impair us but are just different, such as stims that don’t harm us, how we don’t make eye contact, and our ways of communicating. We share things we’re good at, like attention to detail, and things that make us happy, like our special interests. But, significantly, we’re disabled.

The social model means that although Autistic people have a harder time than allistic people, and although we suffer, much of this isn’t a direct result of being Autistic, but is caused by external forces. It means the way to make life better for us is not to cure us or train us to act like we’re not autistic but to change the way society treats us.

When I found out about the social model I felt empowered because it means that many of the things I struggle with don’t originate from within me.

The Autistic people who say they’re not disabled frustrate me because they sound like they’re denying the existence of all the social barriers that make life difficult for Autistic people.

And it frustrates me when people blame autism for problems that are not caused by autism. The people who want to eliminate us could use this to justify their stance that autism causes suffering so it would be better if autism, and therefore Autistic people, didn’t exist.

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39 thoughts on “Disabled not disordered: autism and the social model

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  2. Reblogged this on TAG and commented:
    The neurodiversity paradigm (thank you, Nick Walker) doesn’t mean that everything’s always easy, but that problems autistic people face aren’t necessary the result of autism, but may often be the result of social barriers and stigma. Autism isn’t a problem, but that doesn’t mean that being autistic is easy. Our job, as a community, is to try to find (or create!) those accommodations that allows accessibility for all people.

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  3. I do not feel disabled at all, but I know many who do. I truly feel we are simply different in a narrow minded world. If we were disabled would we have areas of superiour ability as well as areas we perhaps to not do so well in? One thing we do exceptionally well is to accept a variety of people from all walks of life, we simply ask for fairness and respect. We are not quick to judge or demean others. I would see some others out there who are unkind and cruel as disabled as they have a flawed empathy and ability to love and accept. I don’t think any of us would feel disabled if we were the majority neurological group.

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    • I think people can still be disabled (in the social model sense) if they have areas of superior ability, when society excludes us based on what we can’t do and doesn’t value what we’re good at.

      But I agree that we probably wouldn’t be disabled if we were the neurological majority.

      Liked by 4 people

  4. the ‘social model of disability’ is where age and disability care is heading it appears (i am currently studying for a qualification in Australia). on a care level, this is easily understood. it is much harder to make true inclusion and the mutual benefits for all something society strides for as a whole. totally agree with you that this is about empowerment. also about acceptance.

    Liked by 1 person

    • The people who support me at university (in the UK) seem to work based on the social model, but I’m often shocked by how little other people know and understand about it. So I can see why getting general society to care about inclusion will be difficult.

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  5. I am writing this from a place of great confusion. And I actually loathe myself a great deal for having these thoughts. But nonetheless, I must share them… because I feel I must, as I do with everything else that runs through my head. Despite that writing this is so painful that I will cry the whole time. I would really appreciate your thoughts on my post. I read your entire blog and Twitter links and everything you have said resounds so closely to my own experience that it’s as if I wrote it myself.

    I would REALLY like to think that autism is not a disease, but that is somehow makes me unique and special. I hate Autism Speaks. I think that parents who kill their autistic children are wrong and are criminals. However, I do sympathize with both of the above. I am hyper-empathetic, so maybe this comes into play here. Maybe it doesn’t. Maybe I am just a horrible, misguided person.

    All three of the children in my family are autistic: myself and my two younger brothers. Both of my brothers are verbal, but A is considered to be a lot ‘lower functioning’ than B, because he will never be able to manage his own life well enough to be independent. While physically capable, he isn’t capable of doing so mentally. B needed more care as a child but as of now is mostly independent. He still ‘looks’ autistic in that his social deficiencies can be quite obvious. Me, being a woman on the spectrum, am quite different, and was not diagnosed until I was almost 30. I do not ‘look’ autistic. By this time especially, I have learned to mimic social behaviour adequately enough that I come across as normal until I am pushed too hard or too long. I also have above average intelligence. However, my executive function, anxiety and sensory problems are much, much worse than L’s, to the point that I don’t know if I will ever be independent. Due to going undiagnosed for so long and the concurrent life-long accusations of just being shy, spoiled and lazy, the lack of attention I received due to the high needs of my brothers, and feeling utterly alone and alien my entire life with no connection to anyone, I was left with many debilitating emotional problems. I developed severe depression by age 14, had suicidal thoughts for many years, and later developed bipolar disorder. I struggle daily with intense guilt, exhaustion, and both mental and physical manifestations of severe stress. I don’t work and can barely manage 3 university classes. When class is in session, I do not have the energy to do basic housework even though I only go to class 3 days a week for a few hours.

    Like many have said before, my parents didn’t anticipate having children of the nature that they did, especially not three of them. And it was NOT easy, even with none of us coming close to what some people have to go through with their non-verbal children who cannot communicate with them at all. (Aside: although I am not anti-vax, I have a severe problem with people who claim that, even if vaccines did cause autism, they should not be refused because ‘autism is not as bad as polio’.) To this day A continues to display extreme defiance and rudeness. He often fixates on things that extremely hurtful, such as telling my cousin REPEATEDLY that she has huge front teeth, or becoming angry at my mother for, for example, requiring my cousin to pay for the screen he wrecked in the suite he rents from my parents. He will go at her, yelling, accusing, insulting, for hours. I cannot begin to tell you how I admire her for what she deals with on a daily basis. And yet, to do so, she must try to interact with him as little as possible. It’s not a fair existence for him or for her. It is so difficult to be around him that she has to pay people to play video games with him.

    Just this year, my mom told me that at times it was so hard for her when we were growing up that she considered killing herself and my brothers multiple times. And although shocked at first, I wasn’t mad at her for that. Because I totally got it. Maybe that’s because I’ve been suicidal and know what it feels like to be at the absolute end if your rope. Maybe it’s because I feel that my own life is just a waste of space. Maybe it’s because I’m a bad person. But I do believe that there is only so much a person can take. I’ve been watching my mother and father stress for years over how they will find my brothers jobs or even volunteer work so that they will have some sort of or any kind of income or small purpose to their lives, and even with help, none is to be found. I’m watching the financial and emotional stress of having three, completely dependent children literally killing my father. He is almost 70 years old and still having to work as a waiter six nights a week in order to have enough for retirement and to support my brothers. I’m lucky enough to have a very loving and supportive boyfriend who pays our rent and provides what I need. But I am completely dependent on him and still demand a lot of my parents’ time. I worry and cry for my father on a daily basis. Sometimes multiple times a day. He literally has no life left in his eyes. It breaks my heart and I wish so, so bad that none of us had ever happened to him. Both my parents deserved so much better. To think that we are not burdens to them is simply impossible to me. It is a fairy tale. It is completely unfounded in any kind of logic. None of the small pieces of joy any of us bring to their lives can possibly make up for the pain they have gone and continue to go through. I truly believe this from the core of my being.

    So, sadly, I sympathize with these parents’ decisions to murder their children, as horrible as it is, and for Autism Speaks to label autism as a disease that must be cured. Because I would not blame my parents for doing the same (for me, I would kill myself before I would ever kill my children, but I know that for my mom, there fact was that there was simply no one else out there who would tolerate A, and not having her would be literal torture to him because no one else could understand him, even my dad). As it stands right now, our lives are not worth living. I am watching my father die because of us. This is my lived experience.

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    • I’m sorry things are so hard. I’m not sure I can say anything that will help much. And obviously I don’t know your family so I could be wrong about any of this.

      The way I think about autism is that it’s the way our brains work so it includes things that are a big part of who we are as well as problems and difficulties. So when people say that autism itself is a disease and that it needs to be cured they say those things about the way we think and perceive. I think we should focus on trying to alleviate the problems using therapy or accommodations without trying to make people not autistic, and that we can be proud of autism itself while knowing that it causes problems, because the problems aren’t the whole of autism. And also, Autistic people often have other disabilities, like mental health conditions, that cause problems, but these things aren’t a part of autism.

      I could sympathise with someone if they just saw the problems autism causes and assumed it must be a disease, but not when Autistic people have told them that in fact Autism is such a significant part of who we are that if we weren’t Autistic it would be as if we didn’t exist. Autism Speaks has been told lots of times that it’s going about things the wrong way.

      You shouldn’t be ashamed of being unable to work (despite what the British government is trying to make people believe at the moment). Our value as people isn’t determined by what we can do but by the fact that we’re all unique and special. There could be ways of finding a purpose in life other than by working, like a hobby or special interest. But I expect there are lots of Autistic people who are able to learn to do a job and do it well but aren’t able to work because we don’t have enough social skills to get through an interview, or because workplaces are inaccessible for people with our sensory issues, or because we’re expected to work full-time when we can only manage a few hours. It sounds like you might be in this category and I’m really worried that I will be too once I leave university.

      I don’t think there really is any such thing as independence, because everyone is interdependent with everyone else – most people don’t grow their own food, make their own clothes, build the roads they use to travel, etc. Disabled people differ from abled people in the ways and extent to which we’re dependent on other people, like needing help with getting dressed or doing housework, but it’s not totally different from needing to hire a plumber because you’re unable to fix pipes.

      I think it is a social-model issue when parents have to give their disabled children more physical or financial support than they can manage without becoming ill, because states ought to provide support for disabled people in the same way they provide things like roads and education that benefit abled people. So I think your parents struggling to support your brothers financially is a social problem and not something caused by you and your brothers. But when someone is extremely emotionally dependent on someone else, like with your brother and mother or to a lesser extent me and my parents, it’s probably more of a medical-model problem, and I don’t know what the solution is. My parents looked after me when I had severe depression and I know it was really hard for them, and I’ve wondered if I was a burden.

      I’ve felt suicidal in the past but I’ve never had someone who’s totally dependent on me, so I don’t know what it’s like to feel hopeless enough to want to die when someone else really needs you. But I don’t understand why people would want to kill their children, or how parts of the autism parent community reached a point where it’s seen as normal to say things like that. Though I think it’s significant that your mother didn’t actually do anything to harm her children.

      Depression can make you believe that there is nothing good about yourself and that everyone would be better off without you, but if your depression got better you could well stop thinking that. I often feel that something terrible is going to happen soon, but I’ve learned that this is caused by my anxiety disorder and isn’t rational, although it always feels very real at the time. So I think some of the things we believe could be caused by our mental health issues and not necessarily caused by something in the external world.

      Things that help me with my depression are medication, counseling, going to a social group for Autistic people, and writing my blog. Though different things help different people, so they might not work for you, and you might have tried them already, but I thought it might be worth mentioning.

      I’m sorry I don’t know how to help. I hope things get better for your family.

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      • I think it is interesting that you consider depression something to get rid of but that autism is part of who you are and that eliminating autism is eliminating you. Is it because you don’t think there is a social problem with depression?

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      • I do see depression as part of who I am, but I feel that it doesn’t go as deep as autism does. I think part of this is because people are born autistic but develop depression at some point later in life. And I feel that autism affects me more than depression does, but I don’t know how to explain it. I think if I was cured of depression I would become very different, but I wouldn’t cease to exist like I would if I was cured of autism. I’m actually not sure whether I think it would be good thing for depression to be totally got rid of, but I do think it’s good to try to minimise and manage its symptoms. Depression can cause extremely unpleasant, life-threatening symptoms, and I think getting better from it can mean reaching a point where you still have depression but have mild and/or infrequent symptoms and are able to enjoy life, not necessarily being completely free from depression. And I think accepting that I have depression is part of accepting myself.

        I think people with depression do face social barriers. An example is an extra year of my university course that I’d like to do but probably can’t because it’s too intensive for me, because depression makes me get tired easily, and it can’t be done part-time – the course is designed with abled people in mind, not people who can’t do intensive study because of their disabilities. I think my depression is an example of a disability where there is a combination of social problems and problems caused directly by the impairment or medical condition.

        (Although I’ve realised the author of the comment I was replying to has bipolar disorder and my depression is monopolar, so I’m not sure how applicable my experience of depression is to that person.)

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      • The fact is that depression is always disabling to some degree, whereas with Autism, the disability tends to be imposed on the individual by outside forces. I say that as an Autistic person who’s suffered from depression in the past.

        Liked by 1 person

  6. The people who want to eliminate us could use this to justify their stance that autism causes suffering so it would be better if autism, and therefore Autistic people, didn’t exist.
    Oh, man! Thanks for this paragraph. It just inspired a T-shirt reading “My Autism is far less disabling than your attitude.” If you like it, you can use it.

    Liked by 3 people

    • I like that slogan! I think it’s important to remember than many people have significant impairments caused directly by autism, but attitudes can be very disabling, like the way it’s essentially not socially acceptable to behave autistically.

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      • That’s the point I want to make with my T-shirt; Autism can be very disabling or only slightly disabling, but it still isn’t as disabling as people’s beliefs that we can’t be helped or are unworthy of help, amongst other things. Such attitudes are what most often lead to Autistic people being unable to live and work independently. The exception is Childhood Disintegrative Disorder, and that’s not even Autism (though it is on the Spectrum).

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  7. I like your slogan, too. It also holds true for many 47,XXY people who often suffer from features like ADHD or autistic behavior but also from infertility, female appearance and high emotional sensitivity. Being infertile is a true disability – one can’t deny that but it does not help to pray a picture to be only accepted when you have a family, besides the fact there are other ways to found a family. Further things like physical appearance or emotions who resemble females while most of XXY are men, are the problem of societal expectations with respect to gender roles. It’s even more about attitude of “how a male or a female has to behave” instead of just let someone develop his own identity. When it comes to ADHD or autism which belong to similar neurologic conditions (mainly about executive functions and sensory issues), one could perceive them as different ways of perception/thinking. If such a way is used where it fits in the best, it could be a great advantage. Unfortunately, economics, politics and society is not really aware of that different thinking could be a gift if put into the right place. They often only see the necessary accommodations preventing them from thinking about advantages.

    Liked by 1 person

    • […] people who often suffer from features like ADHD or autistic behavior […]
      The sentence quoted above is what I referred to. I don’t suffer from my stimming (Autistic behaviour), I suffer only when people force me to stop. And my ADHD? Well managed. So I suffer from very little that stems from myself.

      Liked by 1 person

      • Sorry. I think I expressed it misleading. Many XXY have difficulties with bad short-term memory, inability to concentrate, to follow long verbal instructions and to process verbal instructions when there is strong background noise, e.g. It’s often frustrating to process so slowly, or to become easily upset and say things you regret later when thinking about it also is delayed. A more supporting and understanding environment would help, like people just giving enough time and speak in clear words instead of between the lines, and silent environment which is often a problem in school classes. So at least partly I suffer from my condition when sensory gating is concerned.

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  8. I hate Autism Speaks. I think that parents who kill their autistic children are wrong and are criminals. However, I do sympathize with both of the above. I am hyper-empathetic, so maybe this comes into play here.
    I am truly hyper-empathic, and because of this I can never be sympathetic to the murderers of people of any neurology. Rather, I sympathise with the murdered people, thinking, “Why not just give the person to someone who’s actually willing to care for them? Wouldn’t that have been a much better alternative?”
    After an Autistic person is murdered by a parent (often their mother), you get fools saying, “Look what it’s done for Autism Awareness!” but that type of awareness we can do better without.

    Liked by 1 person

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