Lately, I’ve talked a lot about ableism and the devaluing of autistic peoples lives relative to neurotypicals, however I haven’t had much of a chance to examine why this is the case or where that comes from. For my last blog before I take a quick break over Easter, I would like to look at this idea of being ‘normal’, who decides what the term means and what its for. We tend to see the term normal as interchangeable with usual or expected, without considering who the term benefits and its relationship to not-normal. I hope this article gets you to think and surprises you, just like researching this idea surprised me .
Perhaps you can relate to this ostracism from ideas of normality – if you feel awkward in social situations, obsess over specific interests, or have a short attention span in certain situations, you might have been considered not-normal or even considered yourself in this way, relative to the other people around you. I know I have certainly experienced this when sat in meetings and other formal environments. None of these are uniquely autistic traits by the way, although they might be more present or grouped together in autistic people. That is why the concept of ‘neurodiversity’ is vital. It rejects the idea that people with traits perceived to be outside of the norm are somehow defective or ill and in need of education.
“The sickness is with a society which attaches a stigma to people unless their brains are wired in a way considered “normal” — hence the term “neurotypical.” If you’re neurodivergent, the neurotypical demand to be “normal” can contaminate every aspect of your life”Matthew Rozsa, how the neurodivergent are mocked for being different
That last point about education is one I want to stress. Its common for our neurotypical peers and even friends to treat us like clients. This is usually done in good faith but comments like “your terrible at eye contact” or “your so awkward” or more often than not “get outside of your comfort zone” are usually unhelpful, not to mention detrimental to autistic peoples sense of self-worth. They also have the effect of drawing a line between conceptions of how you should behave, and behaviours that are seen as strange or unnatural.
Normal is seen as the apex of perfection that people strive to achieve. Regardless of whether you have a diagnosis of autism or the like, many people belabor under the descriptions of ‘weird’ or ‘strange’ which force them to strive for a constantly out of reach idea of normality, either by hiding thier traits or doing things to compensate for thier perceived lack of normality. I would argue that this is the wrong approach. We do not owe it to the privileged to change; they owe us thier understanding and empathy.
Attitudes towards disability can be flawed…
Part of the reason why having a child with an impairment or with autism is often seen as such a huge, earth-shattering deal in families is the interruption in the idea of “sameness” that it causes. Disability is often understood as some form of wrongness. No one, except possibly people diagnosed with autism, expects to have an autisitc child, so when they find out they have, that leads to the idea that they’ve got the wrong child – i.e something other than what was anticipated. Of course, with that perception comes the predictions of thinking your child may not experience the same level of achievement in life as a neurotypical person, however grounded in reality those predictions are. In these cases, the autism or the characteristics seen as a disability become salient, overwhelming the child’s other characteristics.
This idea disability being an interruption to sameness, is at the heart at the frequently ableist concept of the existence of “normal” and therefore “abnormal” or “subnomral”. Studies into the families of people labeled with disabilities were quite revealing and surprising to even me. One study found that many parents in the UK were frustrated by medical labels and diagnoses, and felt that ‘disability’ was something that had been thrust upon thier child to alienate them from so called ‘normal’ society. Equally, a US study conducted on parents of children living with disabilities found that most had grown up with the very medicalized view of disability as a personal weakness to be avoided and caused by the mothers poor choices. However this view was strongly challenged by getting to know and living with thier children in reality. What this shows to me is that a lot of perceptions of autism etc. are built of preconcieved ideas of what these conditions might look like. We don’t handle the idea that humans are diverse and that “if you’ve met one person with autism, you’ve met one person with autism” very well, and so we easily fall for scare stories, pity narratives and simple explanations of autism as meaning ‘broken’.
I don’t usually look at this from a parents point of view, mainly because so much of autism literature focuses on parents and children already. That said, it is a useful way of understanding the different ways of looking at disability, from the point of view of the onlooker.
For example, other terms for the ‘medical model’ are the ‘tragedy model’ or the ‘charity model’. At its most core elements, it considers autism to be something that needs to be fixed, either through finding a cure or through forcing that person to try and fit in to normal society, whatever that might be. This leads to the assumption that they are somehow a burden, which in turn increases stigma. With this comes assumptions about how much happiness a disabled person will experience over the course of thier lives. As I pointed out in my blog about Peter Singer, it is not possible to define happiness along strict lines, or predict how much happiness or tragedy someone will experience over the course of thier lives. However, this dosen’t stop people like him advocating for disabled children to be euthanized at birth or others to treat our lives as having considerably less value than that of ‘normal’ people. This might seem very theoretical but this has an impact on the film portrayals of us, the medical decisions that are made about the lives of people with learning disabilities and the jobs autisitc people can get into. This obsession with turning disability into a medical disorder pervades every aspect of our lives, and undermines our ability to experience our humanity, in a way which – ironically – feeds into the pity narratives that are patronizingly pinned on us. Therefore, its time for an alternative approach…
What might an alternative approach to the model of disability we’ve been presented with look like? I think we can say for certain that it should do away with the idea of disability as a tragedy and cease comparing us to our neurotypical or non-disabled peers. A better understanding might be to say that disability exists mainly when barriers are imposed. That would force us to situate our understanding of conditions like autism, downs syndrome and physical impairments within the context of the social, economic and cultural systems which do make people less happy, which stop people who are perceived as being outside of ‘the norm’ from reaching thier full potential and which – in essence – disable people.
At a micro level this might involve making education systems more accessible, creating accommodating working environments and ways of working, creating a benefits system that puts compassion and understanding for the individual at its heart as well as health and support systems that do the same. Creating representative media and making all public and private spaces accessible is also part of this. At a wider level, a more ‘social’ model of disability might involve something as wide as looking to change the economic systems that prioritize an individuals ability to be ‘profitable’ above aspects like thier creativity while shoving aside those who are not considered ‘productive’ members of society.
A major difference between the social and medical models of disability is the separation of impairment from disability. From a social model perspective, disability is imposed upon people with an impairment’, while a medical model holds that disability is caused by or is synonymous with the condition in question, be that a physical or mental one. One criticism of the social model is that it dosent take account of the lived experience of disability and the problems that disability itself causes. From this perspective, its all well and good to say that we should be removing barriers but that does not mean that there are not difficulties intrinsic to being in a wheelchair or being autisitc.
Its a fair criticism in theory but one which dosent acknowledge what neurodiversity campaigners and advocates of the social model of disability actually believe; most advocates prefer to use the social-relational model of disability which says that yeah, there are personal experiences of impairments, of course there are, and in the case of something like autism those personal experiences might be good or bad. In this framework disability is defined by and experienced through impairment effects: barriers that your condition presents to you as a person, barriers to doing: i.e disabling restrictions such as an absence of wheelchair ramps or inaccessible language, and barriers to being: the unequal social relationships and systems that help to draw a distinction between ‘normal’, ‘functioning’ members of society and so called ‘abnormal’ people, who are frequently shut out of society altogether on the basis of its lack of ability to understand or accommodate for them.
Under a social-relational model of disability, people should receive all the help they need to thrive despite thier personal impairments, while we seek to build more accessible and friendly societies, that are welcoming to people of all abilities and ways of looking at the world. More controversially, we should seek to dismantle the attitudes and so-called normal ways of doing society that keep people with disabilities trapped in gated off areas and care settings, that keep us vulnerable to viruses like Covid because of medical negligence and biased judgments about the value of our lives, and which keeps us from being part of work, higher education, or social circles because of preconceptions about how we are and what we are able to do. There is an entire class of disabled people who are suffering under the burden of being told they are ‘not normal’. Ending the stigma and beginning to reshape our ideas about what is and isn’t normal could be the first step in achieving wider, social change.
An Atypical Perspective
To return to the question posed in the introduction, what is ableism? To me, ableism is not one thing but a network of ideas, systems and practices that produces an image of an ideal human – an archetype to strive to and try and become. Autism and disability, in contrast to this vision, is portrayed as less than human, imperfect, flawed. This is created and enforced through the contrasting states of ‘normal’ and ‘abnormal’. This understanding of disability as meaning a person is ‘abnormal’ is consistent with medical model where it is assumed that people who experience disability and their families want to be ‘normal’ and are subjected to many disabling expectations, for example, to be ‘independent’, to ‘adjust’ and ‘accept’ their situation.
Something I haven’t had time to go into today is how categories of ‘normal’ and ‘disabled’ emerged through the rise of capitalism. The suggestion that a social model is not relevant to the everyday reality of families who experience disability is false. In emphasizing an understanding of disability as socially constructed and imposed through prejudice, exclusion and environmental barriers, the model shows us how creating a fairer society for autistic and disabled people is not simply a question of making ‘reasonable adjustments’ but part of a wider social project aimed at reshaping who has value and who gets to be a member of society. ‘normal’ offers some ‘high functioning’ disabled people like myself the opportunity to be operate in the economy. Social theory, grounded in a progressive vision for society as a whole, offers disabled people the opportunity to transform their own lives and in so doing to transform the society in which they live into one in which everyone is valued. As an autistic
person, I know which of those choices I prefer.