“I had the lonely child’s habit of making up stories and holding conversations with imaginary persons, and I think from the very start my literary ambitions were mixed up with the feeling of being isolated and undervalued. I knew that I had a facility with words and a power of facing unpleasant facts, and I felt that this created a sort of private world in which I could get my own back for my failure in everyday life.”
George Orwell, Why I Write
Roughly a year ago I published my first blog post on Atypical Perspectives.
In that blog I talked about ‘making connections’. How as an autistic person I tend to see how seemingly unrelated factors in life like my passion for honesty in journalism, with my aspirations to try and be constantly honest about my abilities. That making connections idea has underpinned all of my work since – even my last blog post was an attempt to draw a comparison between our emotional instincts and our ‘logical’ policy decisions.
Much of my work has focussed on trying to make people understand and care about the politics of disability and show how it effects our day to day lives. The ‘grief’ that comes from a distinctly human response to pandemics and ecological issues, telling us that understanding what our decisions do to people emotionally matters in how we shape our systems and institutions. The obsession with ‘normal’ underpinning the devaluing of disability in aspects of medical policy, and the routine assessment of autistics in order to determine how well we fit into society and how deserving of support as a result. Even my love of music, my confidence, and my issues with mental health are related in the sense that each is influenced by the other.
If you’ve read one of my blog posts you might get a snapshot of me as a person, or of my views on my autism, and even if you read all of them you’ll still only have the vague sketches of me, based on the ‘personal brand’ I’ve cultivated through this blog. I have no qualms with telling people that I started this blog as a means of giving me something to commit to during the pandemic, at a time when my mental health was at a detestably low point. However, over the course of a year its grown into something more than that. A lot of the stuff I’ve written here has been stuff thats been nestling at the back of my mind for a very long time indeed, but that I didn’t know how to articulate. On a base level, talking about my issues with needs assessments, my problem with terms like ‘retard’ or ‘high functioning’ and even my discomfort with the original name of my condition – ‘Asperger Syndrome’, is almost cathartic. I surprised myself with how much I needed to get some of this stuff out of my mind and on to a page.
However, its much more than that – its me trying to get to grips with what the philosophy of ‘normal’ does. Not to sound incredibly cliché, but if you’ve ever been perceived as ‘different’ or ‘weird’ and felt that impact you throughout your life – through applying for a job, through your social interactions, through ways of looking at the world feeling out of sync with ‘the way things are’, I can relate. Indeed, if you have gained greater understanding of how all this stuff is connected and how the use of phrases like ‘abnormal’ of ‘strange’ are indicative of an economic and political reality that rarely welcomes diversity in either identity or in our analysis of social problems, me too. I think its a common misconception that writers have everything in thier head before we start writing: in reality we just have some hastily scrawled observations and an ability to improvise.
I won’t pretend I’m not harsh on myself as a writer – generally, when I’m writing I tend to go through a process of thinking my next blog post is going to be brilliant, thinking its going to be terrible while writing and then realizing at the last minute that its actually okay. Even then, I look back on some articles in an embarrassed way – I stand by a lot of what I said in my blogs on ‘canceling’, the history of autism and ‘the atomic theory of communication’ but theres parts of them that are confused, where I’m not sure what argument I was making or why I’ve put things in the way I have. And while I know that all of my work marks part of my progression as a writer, there’s another side of me that naively believes that perfection is even possible. This is despite the fact that ‘perfection’ is a flawed concept and I know as someone who loves to analyze music and film, that the best pieces have flaws which make up part of thier identity and character. After all, you can’t have a work with the stated intention of relating to people on a human level, and not have that work be as flawed as you and the people your speaking to are.
Like a trap, we’re back to this. The idea that as humans we can have ‘perfect’, we can have ‘normal’ and we can have people and art without any flaws is a toxic one. Whether its in beauty, art or work it creates an artificial standard that’s impossible to achieve, and forces many autistic people to burden themselves with the promise that if they work hard enough they can reach the plain of neurotypical acceptance. At an individual level, if you take one thing from any of my blogs I want it to be that your flaws, your imperfections, aren’t wrong. They are a vital part of being human, of being part of a world that requires all kinds of minds in order to function. That’s not to say you shouldn’t ever try and work over your issues – I have resolved many of the problems with my writing and its all the better for that. However, rather than dread or resent those aspects of us which are called ‘odd’ or ‘different’, we should aim to understand them, so they can be embraced or worked on.
In that sense, I would now like to stop publishing as often as I do. Like I said, I started Atypical Perspectives as a means of coping through lockdown, and so a commitment of one blog every Friday made sense for the circumstances. However, its not a commitment that makes sense anymore and is only going to leave me emotionally drained and burned out. After all, the quality of my work is not going to be determined by how much I do but how I do that work. That’s why I’m not enforcing any set timescale for my blog posts anymore. They won’t become too infrequent but I will not create an ideal vision of what I should be doing and then try and have everything in my life bend to that vision. That would make me almost as bad as the practices I deride.
If you’ve empathized or related to any of my blog posts over the past year, then thank you. I hope they have aided you in finding peace in these difficult times and defying the demands of normality to chart a course that is your own – one that is perfectly and unashamedly ‘atypical’.
Lots of talk lately has focussed on embedding kindness into public services; that is to say, making systems for accessing benefits or work accessible to people, starting your interaction with people in desperate situations through the way you speak to and interact with them. Kindness can be something as simple as taking the process of applying for benefits from being one of long forms and complicated words to being one of disscussion between someone who needs help, and a specialist able to understand what the needs are of the person in front of them, although I would add that larger change is required, not just individual ‘disruption’.
The systems we set up relating to disability are perhaps a prime example of how we approach kindness. No one goes into public policy with the stated intention of being unkind, but this relates to how we measure achievement and results. There’s the ‘rational’ measurement of public policy – the concept that everything can be reduced to a scientific ‘facts and numbers’ approach, which follows very conventional ways of doing things. Then there’s the ’emotional’ measurement – this talks about individual wellbeing, relationships, trust, hope. I’ve talked a lot about the tyranny of standard practice on this blog – the tendency to pathologize autism and treat it as a curable curse, measured in ‘severity’ by vague ideas of independence. Its empathy and compassion for autists that has started to liberate from the tyranny of ‘normal’. However, the so called common sense approach persists in autism-politics and other areas.
Many people living with disabilities in the UK for example have had to go through the process of applying for PIP – an overhall of the old system in which a medical recognition of your condition or impairment entitled you to certain benefits. When I did my PIP form, I found the questions to be weirdly vague asking about topics such as ‘nervousness’ and ‘feeling uncertain’. Remember, I was obviously trying to apply to receive Personal Independence Payment. This had the effect of making me almost obsessively pour every negative detail on to the form in the hope that something I said met the criteria. The interview stage was more conversational than expected but not in a good way. On the issue of getting to uni, I was presented with a lot of hypothetical questions aimed at testing my independence: “what would you do if you couldn’t get a lift to the train station?”, “what would you do if the train was cancelled?”, “what would you do if you got the wrong train?”. These are all things I have encountered and oddly enough, overcome but this is nonsense questioning – just because someone might find some areas of life easy, doesn’t mean they wont find other areas challenging. Honing in on a set few areas to see if a person is entitled to long term support is the logical equivalent of making a judgment about someone’s math skills based on thier reading and writing.
When talking about a topic like this, politics is almost impossible to ignore. Of the PIP decisions appealed in court, about 70% of such appeals go in favour of the people who bring them. The most recent controversy in a seemingly never ending list, circled around the Department For Work and Pensions phoning people appealing the decision to deny them benefits, and asking them to decide on the spot whether they want to accept a sum of money lower than that which they’re entitled to. Despite the scheme being set up specifically to stop money being spent on false claims, this is clearly very costly. I became engaged in politics around 2010 when the prevailing narrative was one of schemers and scroungers, “when you get home from work and see your neighbor with his curtains closed” narratives, used to justify the austerity politics of the Tory government. This happened against a background of my dad being unable to work, living in an apartment with my younger sisters. Talking with local people over the course of a few years meant I quickly learned about the different barriers; poor mental health provision, lack of access to technology, bereavement, childcare. Given my struggles with social interaction and anxiety it was always very easy to see how I could end up in a similar situation; among those looked down on.
I think kindness can be both a positive and negative way of talking about how to reform this; on the one hand if we are to change the way we interact with and talk about people we need inherently kinder systems in place. On the other, we need to go beyond kindness and empower people to shape thier work and personal lives in ways that are in defiance – or, to be technical – unkind to those who are not kind to them. Let’s continue to look at this through the lens of autism and disability.
The Problem of Unkindness….
The reason I started this blog by remarking on my experience with the benefit system and being around people in desperate situations is because I think its a perfect example of how the ‘unkind’, target led, punitive approach to public services has failed. The response to Coronavirus has demonstrated the ability to act differently. In the early days of the pandemic there were efforts to make hotel spaces and bedsits available to get homeless people off the streets, and mutual aid groups sprung up around the country giving people supplies and personal support – unfortunately, these have only really been understood up to this point as short term responses to the crisis. Streets are again filling up with homeless people and mutual aid groups have suffered from lost momentum and lack of long term funding. Rather than simply asking people to be kind, radical kindness demands that we identify specifically what areas of life are unkind; risk of homelessness, benefit systems built on assessments and sanctioning, long waiting list for mental health, and working to reshape our societies and relationships along significantly ‘kinder’ lines.
My needs assessments being unkind does not relate to the attitude of the assessor – for what its worth he was alright – but that it was a tick bock excersise based on a series of indicators aimed at deciding whether I’m ‘autistic enough’ and used to determine how much support I could receive. That, alongside the insidious factor that the system is designed to be punitive. As Charlotte Waite from mental health and social change charity platfform states:
“We have a landscape of services where accountability is prioritized over learning in measuring outcomes. The current system offers an overly simplistic way of assessing the work of people who implement public policy by performance-measuring them against quantitative targets. Naturally, wanting to do well, people are driven to hit their targets. And so begins a dance between service and commissioner, where each knows the data is painting a picture more about justifying the existence of the service than making the difference it was intended to make when it was designed”
Charlotte Waite, Kindness in Public Services
At this point people will likely point to the problem of resources, and how we allocate them, and I won’t attempt to answer those questions here except to say that a ‘kinder’ approach to politics, to services, to public life of course involves assessing things on that massive level of how we allocate resources as a means to make our support systems more tailored and able to meet peoples need. However, I often find the way we talk about resources creates an us and them mentality between the people who ‘have’ the resources and service users, who need to live up to the measurements we set to receive support. My argument is that human relationships and the way we think about the ‘helper/helped’ relationship plays an important role in creating kinder systems of support.
A practical alternative?…
I realise an idea as sentimental as ‘kindness’ might be a tough sell for some people, so lets talk a little about the practicalities of the idea. One of the main arguments for the ‘rational’, numbers based approach to doling out support is that it – in principle – ensures fairness, by making sure everyone is assessed equally and subject to the same criteria. It can be verified and provides for fact checking. On that, one of the criticisms of the emotional metric is that its quite sentimental, populist and can’t be measured. Paul Bloom in the affectionately titled Against Empathy argues that it is precisely the role of the state to rise above the challenges and complexity of individual emotion and to instead be structured through a clear framework of rights and responsibilities.
However, this argument doesn’t work when you consider that not everyone has exactly the same needs. Don’t get me wrong everyone deserves to be afforded equal levels of dignity and respect, and with a financial benefit like PIP theres only so much flexibility you can have. However, wider needs assessments relating to precisely what support people receive demands that individual needs are understood and accounted for. Proper autism support does not come from treating every autistic person as if they are the same – some autistic people suffer with chronic mental health problems, some are born into poorer families than others, some are diagnosed and end up receiving thier assessment earlier or later in life than others. How on earth can you treat all these different situations as requiring the same response or the same type of support? This is precisely the opposite of Bloom’s argument – having a system of inflexible rules and ‘standard practice’ dosen’t make sure things are fair but perpetuates the inequalities that already exist.
Whatsmore, to imply that you’ve got the messiness of emotions as one factor and then the sensible level-headed nature of public policy as another is deeply flawed. So much of our public policy and discourse is based on emotion and ideology. Like I said, the discourse surrounding the reason for introducing systems like PIP was that we as a country were too charitable, and that we needed to punish the undeserving. Many autisitc people live in community housing with a few carers and perhaps five or six other autistic people. This is despite the fact that, for many, moving into a care home is recognized as a distressing transition. It comes about because of the recognition of vulnerability, frequently coincides with the death of a parent, often involves moving from the family home at the same time as becoming used to loss of other sorts – of capability and capacity, of freedom, and of individual autonomy. These examples show how separating emotion and public policy is difficult if not impossible. Rather than trying to sperate them, I argue that we should be trying to understand precisely what emotions motivate our policy decisions and what our decisions do to people on the inside. Not only will that help motivate us to kindness, but will be a kind act in itself.
How precisely do we do that though? You can’t exactly measure kindness, right? Well, this narrative too is quite over simplistic. The argument feels logical – the rational world of measurement cannot fully meet the emotional world of subjective experience, and no one has yet come up with a way of quantifying emotion down to a specific enough level. However, we measure emotion all the time. Social media has practically built an entire industry off understanding and manipulating how people feel.
“Official statistics measure not just the reported crime rate but also the perception of crime in a neighbourhood, the latter having a stronger correlation with individual wellbeing. We measure life satisfaction and put great weight on programmes that have proven impact on participants’ satisfaction with their own lives, despite the fact that objectively we value different things. We measure subjective views on the quality of work, of neighborhoods, of public services, as well as the objective ‘truth’ about these aspects of our lives. So it is not that we cannot measure kindness. It is that we choose not to measure kindness as an official measure of how we are doing as a society”
Kindness, emotions and relationships: The blind spot in public policy
Read the last two sentences again. “It is not that we cannot measure kindness, it is that we choose not to measure kindness as an official measure of how we are doing as a society”. What if we did? If we measured how people feel about thier housing, about thier disability benefit, about thier mental health, what conclusions could we reach? Following that, how would we use that info to enact policy decisions that improve peoples wellbeing and psychological safety? No one is suggesting we abandon statistics and numbers as a useful way of holding the powerful to account, or gauging how society is functioning, or that we allow our emotions to take hold of us and guide our every decision, simply that we stop looking at the two as entirely separate.
An Atypical Perspective
After a year of lockdowns, there is widespread recognition that society needs to change. Ideas like remote working, mutual aid and the protection of vulnerable groups present great opportunities. We also know that huge sections of society feel disenfranchised after losing thier livelihoods, feeling isolated and cut off from society, and not receiving the support they need to get through this crisis in a healthy way. We are tired, we are missing our friends, and we have a hope that we’ll do better in our personal commitments when lockdown ends. Our beliefs and actions are shaped by our emotions – our history, our expectations, our sense of agency – perhaps more than they are by logic and reason. And at times of crisis, our need for a kind response from our politicians and institutions is powerful.
The response needs to be substantial and real. We can’t just rely on individual acts of charity to ensure the wellbeing of our society. Kindness is radical. At its best it demands a change in the relationships between people and those in authority. If those most affected by Covid are not involved in how decisions are made moving forward, yet more trust in the systems we rely on will be lost. We need a new social settlement that realises the importance of emotion and makes sure that decisions, and leadership are rooted in an understanding of how people feel. Only through this, can we inspire people to be better after the pandemic, and achieve lasting change in our communities.
As I write, I am fidgeting with a bracelet. A pair of headphones snakes from my phone to my ears which i cant resist the urge to strech and tie into knots even if that turns listening to music into a more expensive hobby than it already is. Occasionally, I’ll read something interesting that I can use for this blog post, to which I might react with excitable movements or else stare into space if I’m confused by what I’ve found out. I’m also known to rock back and forth when listening to music, or feeling anxious. Anyone watching me in these moments might think I’m acting strange.
What they might not understand is how all those behaviours, to me at least are a reaction to something. They are how I process change and the world around me. I’m not sure exactly why these behaviors help me do that. They just come naturally. Stimming helps me feel grounded when I’m overwhelmed but its also a way I can express my joy, fascination or sadness. The world is louder now, which I like, actually. Having somewhere to go, things to observe, hear and experience on a day to day basis makes me feel intellectually and physically stimulated, even if I do sometimes get overwhelmed. I feel that sometimes people put autisitc people in a box and say that because some of us don’t react well to loud noises or crowds we don’t ever want to be in environments where there is a possibility of loud noises or crowds. On the contrary, if you say you’re an extrovert and say you like to be out and about, your occasional quietness and withdrawn nature might be seen as strange or uncharacteristic. This is despite the fact that humans do not fit neatly into boxes, not least autisitc people.
A shift in the way we see repetitive behaviours as a society is entirely necessary. They contain not only ‘stims’ like rocking back and forth but routines, and special interests like a fixation on music and writing, as is the case with me. Traditionally neuro-scientists like Leo Kanner have viewed them as something to eliminate. However, ideas about repetitive behaviours and what purpose they serve has changed, as ideas about autistic people have progressed.
Leo Kanner and Hans Asperger, who originated modern thought on autism even if thier ideas are incredibly outdated and wrong, both saw ‘stimming’ as attempts by autisitc people to shut out the world around them. In the wake of these ideas sprung up a whole subset of pseudo-therapy aimed at reconditioning autistic people. Tactics used included electric shocks and physical restraint, aimed at stopping autisitc people from behaving in ways that were perceived as disruptive and strange. This still goes on to an extent – human rights law prevents the use of physical torture but there are still ‘therapies’ which some children are made to undergo, aimed at eradicating certain character traits or stopping them from being sensitive to certain sounds, textures and atmospheres. If this sounds like social conditioning its because these practices literally emerged out of academic theories which believed that autisitc people should be cured, or else made to ‘fit in’.
Despite this, as anyone who’s ever had a child or younger sibling should know, erratic body movements and repetition are an important part of development as children learn to interact with the world around them. Now, as people learn to better respond to and understand thier environments, thier actions become more purpose based and goal oriented. While I’m cautious of using comparisons to children as a way of describing autism, what if actions like stimming and routines are autistic peoples attempt to make sense of a world that so often seems overwhelming on both a sensory and emotional level? If, for the sake of argument, we assume this to be true, then the entire argument that these behaviours are a symptom of a larger problem with autistic people, falls apart. You can’t on the one hand say that autisitc people should adjust better to thier environment, and then castigate them for thier attempts to do just that.
In fact, a 2014 study appeared to point in this direction. It found that both autisitc and neurotypical children, continue to engage in repetitive behaviors, such as fiddling with objects, as they grow. People with autism just display more of these behaviors, as well as a greater variety. The aphorism that ‘everyone is a little bit autisitc’ is an annoying one, as well as not being true. However, it is fair to say that we can learn a lot from observing behaviours which appear strange and asking what purpose they serve for the individual, rather than making rash judgements. All this informs how we treat those we perceive as ‘different’.
As well as playing important functions during development, stimming helps autisitc people in a number of ways. Many of us stim as a way of coping with overwhelming sensations or emotions. It can also serve as a way of communicating those thoughts and feelings. Psychologist Steven Kapp who studies self-stimulatory behaviour has said that while something like scratching yourself can represent anxiousness, hand flapping is usually a sign of happiness. He sees stims as an outlet for “uncontainable emotion”, not as something worth repressing. And that’s the other reason for repetitive behaviors like these – they feel really good.
This is a point highlighted excellently by neurodivergent blogger Julia Bascom on her piece on how uniquely autisitc body movements as well as special interests and routines are all part of the autistic attempt to make meaning out of life, and not something to be pitied.
“Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day”
I can personally relate to this -obviously, Bascom is speaking in very general terms. I personally don’t regard the multiples of seven as beautiful (although speaking as someone who has to have thier watch with them at all times, the multiples of five have something going for them) and that’s okay. Personally, I pity anyone who can’t have a song speak to them on such a deep and powerful level that listening in public requires restraint. I pity anyone who can’t pour thier soul so much into a subject that they want to find out everything it be that politics, journalism or philosophy. My emotions are somewhat volatile so a small thing can make me sad, but a small thing can make me happy. Given that I’m ‘always on’, something as tiny as a change in my environment, a smell, a taste, a sound, a word from someone, can alter my mood exponentially. Repetitive behaviours are a key part of the way I regulate that.
Despite this, I have read many comments written by neurotypical parents desperately trying to stop their child from stimming in an attempt tp make them ‘normal’. I quite regularly receive strange looks from people on train platforms for my inability to stop pacing up and down as I’m waiting. While I get that autisitc traits are not widely understood within society, I have tried to adjust my own mindset to be less presumptuous when I see anyone doing anything that could be perceived as ‘strange’. This highlights how empathy is key to understanding repetitious and obsessive behaviours. I might not relate to some autistic people love of maths and not all forms of ‘stimming’ come naturally to me, but that dosent mean I don’t understand these as autisitc peoples ability to make sense of the world and shape it to thier needs.
“It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echoed phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy”
An Atypical perspective….
To me this is about how the world sees happiness, and what happiness is in reality. I think we create images of what happiness looks like that we then try and impose on other people with the assumption that everything that makes us happy, must make other people happy. This is despite the fact that all sorts of happiness exist – the type autisitc people are experiencing when they stim, or listen to thier favourite song even if they know all the notes or read about a subject thier passionate about deep into the night is a sort of reserved, private kind that makes everything else seem insignificant in that moment. Rather than resenting these behaviours or treating them as abnormal or not appropriate to ones age, we as a society should see them as an aspect of individuality that the majority might never quite ‘relate to’, but can emphasise with and understand. By taking a more open minded approach to peoples behaviours, we will improve our understanding and respect for people different from us, as a whole.
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.
I’m sure you’ve all heard by now about the appalling ‘alleged’ murder of Sarah Everard. For those of you reading internationally and perhaps less aware, last week she was attacked by a police officer. A search ensued after her boyfriend alerted the authorities that she was missing. She is now presumed dead after human remains were found in a local woods. The police officer in question is currently standing trial, which is why I’m using the kind of neutral language that I am here. The case remains an extreme but no less serious incident of the kind of thing many women understandably fear about being in public.
Re-enforcing this climate of fear was the police response to the vigil a few days later – an incident that has been the subject of much protest and outcry. In response to people gathering peacefully at clapham common to pay thier respects, all wearing masks and many socially distanced, the police broke up the vigil, pinned mourners to the ground and chucked them into the back of police vans. Many have rightfully pointed out that this is indicative of the climate of fear that exists towards women being out on the streets and excersing thier right to speak out against male violence.
The first part of this blog will give an overview of how I see my responsibility as a male in ending all forms of male violence no matter how subtle. As with everything else, my autism has coloured my way of looking at the issue. The second part of this blog contains a few observations from a friend of mine who is both autistic and female. In situations which are so serious, my words may have limited effect, however if I have the ability to add my voice (and Sofie’s) to the chorus of those calling for a change in how we understand and behave towards issues of safety and respect, then I feel I have a responsibility to do so.
Violence and the problem with ‘not all men’…
Before we go any further, I want to clarify what violence is. Using its broadest definition, violence is anything that directly or indirectly causes physical or emotional harm to other people. In that sense, violence could be anything from directly assulting someone, to using your words and actions in a way which makes people feel unsafe, to refusing to speak out against other, more serious forms of violence. Its not a perfect definition but its one that works when discussing men’s responsibility to stop male violence.
My first reactions to the case of Sarah Everard were emotional and upset. The police response at the vigil a few days later made me angry. I’m lucky in that neither of these incidents made me directly fear for my safety. One of the issues which means that violence against women and sexual harassment are such pervasive issues, is the deeply contradictory messaging surrounding them. A lot of the discourse focuses on what women should be doing, wrongly – in my opinion – shifting the responsibility away from the abuser on to women. As a man, it is my responsibility to make women – and everybody – feel safe, by not engaging in any wrongful behaviours. If I didn’t and followed the ‘Its women’s responsibility’ line, I would’nt have any basis on which to criticise others who verbally mock me for my outwardly autistic traits. Indeed, if it is women’s responsibility to protect themselves, why would’nt that include the right to speak out against abuse when it happens? The message around public safety and bodily autonomy directed towards women seems to be ‘take the necessary precautions so you can defend yourself if your attacked but don’t try and challenge any of the attitudes that lead to assult in the first place’. None of this is to say that people don’t have any responsibility for thier own safety. Everybody takes precautions to feel safe but no should have to feel victimized.
At some point, if you point this out regularly and to enough men, you are likely to hear someone say ‘not all men are like that’. The primal way you want to respond when you hear or see #NotAllMen is “yes, I fucking know. Nobody is suggesting that all men are abusive, simply that it is far too common, and that all men have thier part to play in stopping abuse from happening” . As far as I can see, the phrase ‘not all men’ comes from a primal desire to defend the group that you’re a part of. Its a composition error where men hear others criticisng male violence, and immediately feel under attack. Its the logical equivalent of hearing a story about someone with blue eyes doing something criminal, and immediately becoming offended because you’ve got blue eyes. Of course, in some cases people of a certain identity are made to look bad as a whole – this quite often happens when an autistic person does something bad and media outlets implicate thier autism. However, this is clearly not what is happening here. While many might – rightfully in my view – say that all men are capable of subtle forms of violence, nobody is conflating ‘individual men’ with ‘all men’. To pretend that they are is just absurd.
And yes, in case anyone is in any doubt, the problem is that severe. Evidence indicates that even using the narrower definitions, violence by men in public spaces is disturbingly prevalent. Although the more extreme physical manifestations of violence such as abduction or murder are relatively rare, a large proportion of women report being assulted. And when women are subjected to serious physical violence or murder, it is usually men who perpetrate it. This is often despite extensive safety work from women. Contradictory messaging about being told to protect oneself while simultaneously being told that protesting is unreasonable and overreactive does nothing to keep women or anyone else safe. Fiona Vera Grey has pointed out how women are expected “the right amount of panic” to be viewed as having a reasonable response to the threat of violence. Even then, what they do may not be viewed as enough. All the while the problem of male violence goes overshadowed and overlooked.
A few thoughts from Sofie Bainbridge…
While I as a man have a responsibility to educate myself about sexism and forms of aggression against women to make sure I do not act in subtly discriminatory ways myself, I am actually incapable of claiming to know everything about the experience of being a female. For that reason, my friend Sofie, who is also on the autism spectrum, has provided a few thoughts which I’ve added some of my own notes to.
…”with me being a woman a woman and autistic, I feel more scared when hearing about these things happening“…
This connotes a degree of anxiety arising from news stories of assult and violence. My friend does take care to point out that violence can happen to anyone for a range of reasons. However, that does not mean anyone can specifically relate to this form of sexualised violence which is so common. That’s why I think its important not to shrug off the concerns of women with ‘everyone risks experiencing violence’ – this is true, but not everyone is necessarily at equal risk. Therefore, as this observation summarises, ignoring the different forms violence takes risks ignoring the causes of the problem and oversimplifying acts of aggression as ‘crimes’ with no social significance or relevance. As Sofie goes on:
…“I do believe that there is a threat, especially when I’m frequenting out of society places like bridal paths“…
This points out that while in parts of society or in certain situations, there may be accepted way’s of behaving, in isolated, less formal scenario’s the message to women is clear – ‘the right to feel comfortable in this public space is mine and not yours’. The potential for violence from male members of the public may be particularly pronounced if they see a women ‘stimming’ or acting in ways that are perceived as strange. Of course, everyone should have the right to feel comfortable in all public and private spaces but this is rarely the case.
…”It is really difficult explaining to people that I’m autistic, and they don’t respect boundaries 90% of the time. They think I’m rude or ignorant and can be hostile as a result”…
This is a particularly insipid form of violence that happens to women and autistic people, albeit in different ways. Just looking at autism for a second, when people stand to close to us or touch us in ways we feel uncomfortable with, many of us pull back. Equally, we can be very quiet and reserved when meeting someone for the first time. Both these can be perceived as rude and aggressive. Being a woman introduces a form of sexualised violence into this whereby women who reject men’s advances are met with aggression. The fact that many face the risk of one – or in cases like these, both – of these forms of discrimination proves we need better understanding of boundaries and consent throughout society. As Sofie goes on to say:
…“neurotypical men could take the time to understand more. It appears unless it is told in black and white they don’t understand. I also feel they could be less domineering”…
I think this is something a lot of men could work to understand. Its important to note the issue of microaggressions – subtle behaviours that make women feel less comfortable. This could be something as simple as using sexist language or intentionally and knowingly walking behind a woman for a long period of time. Importantly, if your autisitc you will still notice subtle forms of discrimination. You might not be able to articulate and make sense of what is happening to you in that moment but just because someone struggles to make sense of thier own feelings, does not give anyone the right to abuse that process.
…“sexism effects me, especially when I used to work in a male dominanted industry. I also feel that being a woman on the spectrum, I’m constantly compared to men on the spectrum, as though we are all the same”…
This is another example of the vicious ways sexism and ableism often intersect. Autism was presumed only to effect boys, until quite recently. This has led to many woman going undiagnosed. Think about it, count how many representations of autism are about men, and count how many are about women. It says something when the most prominent representation of autisitc females in the media is Sia’s Music. Whatsmore, the common portrayals of women and autistic people in the media is as weak and timid. The generic preconceptions of ‘all autistic people. behave this way…’ or ‘all women are like this’ or even ‘autistic women should be like this..’ contribute towards the dehumanizing and stigmatization of these identities. What right then has anyone, when faced with the idea that all men do indeed have a responsibility to educate and be honest with themselves about sexism, to claim ‘not all men’?
An Atypical Perspective…
Sofie’s special interest as an autistic person is photography and she see’s her home as her safe space – a place she can find some peace and quiet, from the hectic qualities of everyday life. She says that while her hobby gives her a sense of safety, she dosent feel comfortable taking photographs everywhere. This struck me as a great illustrative point. If you’re a creative person you don’t want your creativity to be restricted in any way. You want, to put it simply, to be free. This is not just a creative impulse but a uniquely human one. Whether its to walk, to see your friends, or to take photographs, everyone has the right to dignity and respect in all areas of life. The case of Sarah Everad and the police response at Clapham common has illustrated how we are a woefully long way from achieving that goal of safety and respect for everyone. Fortunately, creativity and freedom to be oneself, is also the solution. Women and thier allies are lifting thier voices to demand a change in a range of creative, clever and inspirational ways. My hope is that these inspire people, paticulary men, to reflect on and change thier violent and discriminating behaviours in the struggle to achieve a safer world.
One of the scariest things, I find is not remembering how you felt towards something. As an autistic person, emotion acts as something of an anchor, reminding me of times or experiences. If, for instance, you asked me to describe my last gathering with friends before the first lockdown, I could perhaps sketch out the rough details of what happened but at this point I’m just liable to say ‘It felt relieving’. In moments when nothing seems wrong, its very difficult to believe that anything is wrong, even in spite of all the news stories telling us that yes, something was indeed wrong. memories of how I felt upon a specific date or event help me to tether myself to specific memories or experiences.
I can tell you how I felt upon the second lockdown, as that happened after a period of relative stability. To have my once again thrown into uncertainty sent me into a temporary period of burnout and exhaustion. Coupled with the unceasingly bleak media coverage, the anxiety that I—and many other autistic people -live with, had peaked. Still, its for precisely that reason that I don’t remember how I felt upon the first lockdown. Did I feel the same way as I felt upon the second, and just forgot? If thats the case then that’s even more concerning, but my memory associated with particularly strong emotions means I somewhat doubt that. A far more likely reason is that the initial ‘novelty’ of the pandemic meant that I was bewildered by the whole experience. None of us were in control and thus any strong emotions or opinions we could have towards the virus were futile. For something like a lockdown to happen once in the life of an autistic person results in a deep and profound sense of uncertainty. For it to happen more than once results in the anxiety of going backwards after some sense of certainty has been reestablished.
On the emotional toll…
In my blog on the process of “social grief” I tried to present issues which lead to mass death and suffering in terms of an understanding of mental health, but there’s another concept that’s useful here – trauma. I want to refrain from saying that we are necessarily living through the first trauma event in several decades. Looking at events like Grenfell and reports of climate disaster flooding in from across several continents, its understandable that even people not directly affected by these could have some trauma associated with knowing that these kind of disasters could easily reach thier door. That said, Covid-19 is a unique case in that while it doesn’t effect all communities with the same level of severity, as a highly transmissible virus its experienced with a degree of universality.
The UK Trauma council have an interesting definition for the state of trauma, arguing that is should be understood as a disturbance in the process of “meaning making”. So to speak, when an event comes along which overturns the way you see yourself and the world around you, that disturbs your orienting systems which allow you to interpret your experiences. For example, before the pandemic was officially declared many people – including myself – wrongly assigned little meaning or significance to covid, partly because it was difficult to imagine anything fundamental changing in our lives. The UK Trauma council argue that “Through meaning making, individuals restore a sense of the world as meaningful and their own lives as worthwhile”. This might be why elements such as routine have been so important in giving people a sense of stability.
Even the most simple changes to our lives can result in trauma. The identity of lots of people on the spectrum in particular is tied up in our ways of going about things, in our social circles and routines. The first lockdown felt like more of a slow burn, everyone knew it was coming and no one expected it to last as long as it did. Being unexpectedly forced back into not seeing anyone for a few months caused many people significant stress. Unexpected events deplete our mental resilience and if nothing fills the gap to help explain to yourself the usefulness of your life, then that can kick of a cycle of mental ill health, making you less able to adapt to changes.
I appreciate this is all slightly abstract so let’s look at some more concrete, albeit bleak, examples. Most obviously, the reports of death and illness emanating from the news each night are not doing our mental health any favours and can lead to a process known as “vicarious traumatisation”. A survey of psychotherapists who had heard about traumatic pandemic experiences found that 15% had experienced “high levels” of this kind of ‘trauma by absorption’. On top of that, the usual rituals of mourning and reconciliation – meeting with loved ones etc. – which follow traumatic events, have been restricted and made to feel different.
“the evidence is clear that communal gatherings and social networks are essential for adequate recovery. With Covid-19, though, meeting other people is precisely what spreads the virus. The treatment for mass trauma in one case is the problem in ours”
BBC Future, How to heal the ‘mass trauma’ of Covid-19
That the threat is invisible is part of the issue. It means that ordinary environments, even one we have positive memories associated with, get reframed as dangerous places where the virus can spread and mutate. Going back to the anchoring effect I was talking about earlier, whereby people like me can feel a certain sense of stability associated with a specific place, this is especially frightening. Speaking as someone who see’s even small events in quite huge, systemic terms, I’m scared as to how I will view the world in the aftermath of the pandemic. Autistic people especially, could use those narratives built up over the course of the pandemic – “we never know what to expect, the world is unsafe, our leaders aren’t looking after us” – to develop quite a scary view of thier surroundings. Hopefully you can see how all this meets the definition of what we might call “collective trauma”.
Healing and the peril of forgetting…
In psychology, things like everyday ‘rituals’ and shared social spaces are called “the basic tissues of social life”. Of course, the pandemic does present opportunities for us to reform in digital spaces for instance, but also presents the risk of damaging the wellbeing and sense of psychological safety that comes from our communities. However, the fact that we have all experienced the pandemic in one way or another means that it is linked to a group identity, as are the narratives about “when this is all over”. A collectives relationship with trauma, according to psychologists like Gilad Hirschberger, helps people to overcome, transcend and move past what they have been through.
This raises an important issue – perhaps in the aftermath of the pandemic the way we talk about it should focus on celebrating the fact that its over, and mourning for all those we’ve lost, because that implies that we’d be remembering the experience. This might seem like a strange thing to point out but I genuinely think there is danger in putting coronavirus behind us in our memories. Covid is often compared to the 1918 influenza pandemic, but only one country instituted a national memorial process – and that country was New Zealand. I don’t know if there’s any link there between how they reacted to that pandemic, and how they’ve behaved in this one, but the idea that there could be provides us with an interesting thought experiment.
“Initially, AIDS seemed to single out gay men and other so-called ‘at-risk groups’, such as Haitians and heroin users. As churches refused to bury victims and schools barred haemophiliacs infected with the virus through contaminated blood products, it is unsurprising that the shame and grief of friends and family members quickly turned to anger and demands for political change. By contrast, even when the Spanish flu mutated into a virulent killer in the autumn of 1918, most of the deaths were compressed into a short four-week period, with the mortality falling on a wide cross-section of society. Cutting across social, sexual and ethnic lines, it did not become a vehicle for stigma or a motor for outrage”
Mark Honigsbaum, Why the 1918 Spanish flu defied both memory and imagination
Obviously the impact of WWI immediately preceding the 1918 pandemic can’t be ignored, but I don’t think its as simple as that. Why is it you don’t hear anyone talk about the 1957 influenza pandemic or even the 2002 SARS outbreak? Perhaps there’s a lesson here about how we talk about pandemics. As I’ve pointed out, in the sense of wanting to come together after the pandemic, its useful to think about the situation affecting all of us equally. In some senses it has, but in other senses it hasn’t. You just need to take a cursory glance through some of my blogs to see that there’s been outrage about people with learning difficulties not being prioritized by the vaccine despite the significantly higher death rate amongst people in that group. This has been accompanied by multiple other injustices against autisitc and disabled people, which I’m not going to revisit here. Making meaning of pandemic trauma is difficult because disease deaths simply aren’t as “narrativized”. HIV/AIDS was painted in a narrative-based because it initially appeared to effect a specific group, so was siezed upon by different sides in a larger political battle. However, pandemics are rarely framed by the media, in such political terms. Do they have an aim? Who is the enemy? What’s the cautionary tale?
Without answers to these questions, there’s a risk that this pandemic could shrink to the backgrounds of peoples memories like past ones did, and I think its important that we do remember. Outside of the obvious – and highly politicized – idea that not commemorating may affect our preparedness for future crises, it is important we posses those channels for trauma and catharsis. Art, memorials, activism on the issues the virus has highlighted and public gatherings tinged with the memory of the pandemic, will be central in understanding our own emotions and making a difference for the future.
An Atypical Perspective…
Speaking as someone who considers themselves highly emotional and motivated by emotion, Covid-19 is somewhat traumatic for me. I imagine it must be immeasurably traumatic for those who have experienced the pandemic in more adverse ways than I have. In the spirit of meaning making, we will all – autistic or non autistic – have to work hard to rebuild our routines, our relationships with loved ones and our ways of thinking about the world in a positive light. This will end, however it is likely that our ways of thinking about the world have been coloured and changed, probably permanently. I’m sure you’ve seen me say in the past that I will think twice before taking anything for granted ever again. Just because the past year has left an imprint on our minds, dosent mean we can’t use that to safeguard our own wellbeing and to shape a better future, for all of us.
Before I get into the body of this, some clarification; I was not expecting to do a blog on Peter Singer as I thought the controversies surrounding him would be best left alone. Then he did an interview with an independent media outlet that I respect, in which he brought up his utilitarianism and I thought that this was worth exploring.
Coining the term speciesism, his 1975 book Animal Liberation argues that all sentient beings should be regarded as morally equal in the sense that their interests ought to be considered equally. He differs from many vegans in that while he is against animal testing in many cases, his philosophy on life allows him to concede that some testing is necessary if, for example, its the only way to help alleviate human suffering on a grand scale.
He also proposes a theory of effective altruism – the notion that you should be altruistic in the most effective way possible. He recommends people give the majority of thier disposable income to charity, if it will reduce suffering for the most amount of people. Emotional attachment does not factor in to this worldview – even the interests of your own child do not count for more than those of a group of starving individuals.
However, he has attracted controversy for some of his views, and the ones we will be focusing on today are his views on disability. Notably, he has publicly justified the killing of infants with disabilities if doing so increases the happiness of ‘all involved’. Needless to say, I find that disgusting.
Underpinning Singers worldview is the concept of utilitarianism – a philosophy which believes that all actions should aim to maximise happiness and/or welfare for affected beings – in this case animals and humans. Utilitarian’s believe that the consequences of any actions are the only measurement of right and wrong so from an animal-rights, utilitarian perspective, us living in a culture that consumes animal products is immoral in that it sustains the mass suffering of animals. On the one hand, this is a kind philosophy that can encourage generosity. On the other, this can seem quite a cold and calculating idea that prioritizes the ‘greater good’ above other moral values. We will delve into Singer more later but first lets provide some background…
Some thoughts on utilitarianism…
In its original form, the principle of utilitarian moral theory states that the correct action is the one that produces the most happiness for all involved. It has certainly been a useful theory in the past and can result in adherents fighting for a fairer society. John Stuart Mill, who adopted Jeremy Bentham’s original theory fought for women’s rights, against slavery, and for fair labour practices. Aside from that, I think ideas like effective altruism have thier place in encouraging humane acts of charity. I, for instance, would recommend you donate to the Autistic Self Advocacy Network over Autism Speaks any day, because while both of these actions are well intentioned, the former group are likely to spend thier resources on actions that help people on the spectrum, while the later would use those funds in ways that hurt us. As well as that, I completely see the appeal of looking at issues on a macro as opposed to a micro level. I too tend to see things in more systemic terms, tending to observe how specific decisions, particularly ones by individuals in authority, effect the rest of society. Utilitarianism also considers this and is not just focused on the individual.
Still, the theory is terribly flawed in other places. Applying a utilitarian mindset asks us to compare our possible actions based on the benefits and harms they reap. That is to say, assign values to the benefits of each of our actions. However this is not congruent with how people think in real life and relies on subjective, rather than objective judgments. How do we go about assigning a value to life or to art for instance? You could make a piece of art and justify it on the basis that your work brings happiness into other peoples lives, whereas to someone else that time could have been better spent being more ‘productive’. More than that though, no one can be expected to calculate the individual consequences of each and every one of thier actions. Complexity theory exists precisely to chart the individual causes of social problems and how those causes interact with each other, but our cognitive ability to measure and to predict the benefits and harms resulting from a decision is dubious, to say the least.
It’s also arguable that the idea violates the standards of justice in pursuit of finding the greatest good for the greatest number. One example which often gets given is of an innocent man being accused of a crime. There is lots of civil unrest surrounding the case, negatively affecting a lot of peoples wellbeing and happiness. In the spirit of fairness, most would advocate that the innocent man be set free. However, from a utilitarian perspective, wouldn’t the better decision be to sentence him, if that reduces the social unrest overall? A lot of disabled people can relate to this line of thinking – if, for instance, your disability is defined in terms of suffering and difficulty, you might struggle to find work as businesses might view employing someone with a disability to be a net-negative with the risk of reducing how comfortable staff members and customers feel. That’s obviously completely unreasonable, but I hope you can see that making decisions based on what increases overall happiness can be based on subjective value judgments that may not be congruent with equality and progress. It’s wrong to unjustly punish someone, but not if all that matters to you is the net gain of what you see as ‘happiness’. To utilitarians, increasing the happiness of the many can justify making a few miserable.
We can conclude from this that while consequence should be an important guiding factor in our decisions, it should not be the only guiding factor in our decisions. Rights, fairness and even emotion can be equally important. Utilitarianism boils down the deeply layered process of making a decision down to a mathematical calculation of good and bad. For that reason, while it can be a powerful reminder that morality calls us to look beyond the self to the good of all, it can also be harmful. Peter Singer, on disability, is a prime example of this.
So how does this relate to disability?…
At the end of the interview, the interviewer asked about the controversy surrounding his stance on disability. See, Singers views on this subject have made him something of an enemy to the community and the interview made me initially angry that the controversy was addressed in what I saw as a quite a non-challenging way. In Practical Ethics, Singer details how he thinks the interests of beings should be weighted, arguing that:
“When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the hemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.”
Singer, Practical Ethics
This rests on a series of assumptions. What does ‘lead to’ mean? Parents may not have the foresight to know if they will have another child, and why would they necessarily choose not to have another if they kept the disabled child? Why is Singer presuming to know that the ‘hemophiliac’ will lead a less ‘happy’ life than a non-disabled one? The quote furthers the idea that disability is more likely to presuppose unhappiness than being abled, when ‘happiness’ is a subjective measurement that depends on a range of factors. By some ratios – family, where you live, support available to you – some severely disabled people have better lives than that of some abled people. Singer would probably prefer to talk about people who are likely to ‘suffer’ but that’s a word that’s so often used to describe anyone with a disability that the option of euthanasia could apply in practically every case. My autism means that I can struggle with my sensitivity. If we’re comparing, I might not have experienced some of the happiness that I would if I were non-autistic. Should I have been killed? How on earth can parents make a judgement about the ‘total happiness’ that a person will experience? Even if they could, this would still be ableist as it presupposes that abled people can make value judgements about our lives based on subjective concepts about our happiness relative to that of non-disabled people.
In the interview I watched, Singer draws a comparison between this and abortion: ‘many of the same people who criticise what I say about people with disability will defend the right of a pregnant women to end her pregnancy and that will include if the child has a disability’. If abortion were allowed up to the point of birth, he might have a point, but this is rarely the case. I’m from the UK, where there’s a 24 week limit justified in law by the fact that this is when life becomes capable of surviving on its own. Irrespective of your views on this issue, this comparison doesn’t work. I’m not going to delve deep into issues like screening for downs syndrome, except to say that the lives of people with disabilities are worth living. I’m going to recommend you read this article in the Atlantic which gives nuance to the debate.
The article makes clear that if you handed any parent a whole list of every factor that would increase their chances of unhappiness relative to someone else —illnesses etc. then everyone would be too scared. It concludes that we should move away from traditional measures of what counts as happiness. At one point, the author points out that people in the medical profession, or in this case philosophers, base their identity on their intelligence; ‘might the system be biased on the question of whose lives have value?’. You can perhaps see why to some disabled people, Singer might appear to be calling into question the value they add to the world.
I’m bringing value judgements into this discussion because this factors into Singers own thinking. In one interview he posed the question that if most people see the life of a dog or a pig as inferior to that of a human being “On what basis could they hold that the life of an intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being?”. However, intellectual capacity is not calculable to such a specific extent. Again, there’s no consideration of emotion – if you saw a dog and a disabled person drowning, you’d instinctually want to rescue the person, either because they have longer life expectancy, or because there’s more sentimental value attached to the person. Interestingly, in another article, Singer argues for rationing healthcare based on average life expectancy – this seems to contradict his assertion that the value of an intellectually disabled person is potentially worth less than that of a dog. This also relates to a blog post I wrote a couple of weeks ago, where I talked about patients in the UK being hit with do not resuscitate notices because of thier learning disabilities. We don’t know what the rationale for this was but there’s a chance that the shorter lives of many people with learning disabilities, and the fact that they are less likely to be ‘productive members of society’, was part of the decision. However, both of these are largely social phenomena based on the fact that intellectually disabled people often don’t have access to the medical support that they need, and are often shut out of society.
In that sense, shouldn’t a true ethical utilitarian approach to disability be to advocate for making society more fair and safe for marginalized groups? Wouldn’t that be more in line with the concept of creating happiness, than relying on value assessments as to who is deserving of life, the conclusions to which are informed by existing stigma? Don’t get me wrong, Singer would say that he is in favour of that levelling up, but to me its about the precedent set by his views. His is a cold, calculating utilitarianism that asks people to make strong decisions that ignore complexity, based on arbitrary concepts about the ‘utility’ of decisions. There’s a short-sightedness at play that ignores the fact that having less disabled people and treating their birth with disgust, means that we are less likely dismantle the barriers which make their lives unhappy in the first place. Any attempts to create that new world have to be grounded in approach which grants dignity and agency to disabled people, so that they can be an essential part in shaping the society we want to see. Any approach that ignores that, and looks to short-term solutions in the vague hope of long term gains is simply papering over the problems we have with vague platitudes of mercy and reducing suffering. It’s an approach which makes sense to some utilitarian’s but can only be antithetical in the long run.
An Atypical Perspective…
Much as this blog gives the impression of being about Pete Singer and utilitarianism, its moreso about our cultural attitudes to disability and how we assign value based on the assumptions that non-disabled and disabled mean better and worse off respectively. We base our conception of downs syndrome and ASD and hemophilia off sets of assumed truths. “They’re never going to have a job, they’re never going to get married, they’re never going to go to uni”. Indeed the narrative that ‘disabled’ people do attend uni and get married are helpful in pointing out how disability is socially forced upon people. Nothing changed in the biological make-up these conditions to allow these changes to happen. Rather, society shifted focus to better accommodate them.
But what about those that don’t work or get married but like to do art or to be with family. Do we ascribe less value to these people based on a culturally constructed notion that they are somehow “worse off? Singer might answer yes and that families and medical experts should get to decide whether or not that persons life is worth living. One of the reasons he sees it as appropriate to kill babies with disabilities is because their lives are difficult and they are not first in line to be adopted. What this fails to consider is the fact that these difficulties are socially constructed, and that an approach to ensuring ‘more happiness’ should be changing society, not getting rid of the disabled.
Although I try, as a critic and commentator, to remain neutral on a piece of media before the experience, I and many other people in the autisitc community were angry at ‘Music’ and Sia months before release date. The issues started with some autistic people making some very good faith critiques about Sia casting a neurotypical actress, Maddie Ziegler, in the role of a non-verbal autistic character named Music. In the process of responding to those tweets she called autisitc people bad actors, said that she tried to cast a non-verbal autistic actress despite previously saying in 2017 that she wrote the role specifically for Maddie and tacitly acknowledged that she hadn’t tried to make the environment more accessible in the process. When asked later whether she thought she was being ableist she replied “Well, it is ableism but it’s actually nepotism, because I couldn’t do a project without Maddie” – So….hang on….are we saying that ableism is just fine now?
Perhaps that perspective came from working with Autism Speaks – an organization who put the majority of thier resources into finding cures for what they see as an affliction. The popstar turned budding director claims she did three years of research into this subject, and yet she didn’t know that to most people on the spectrum, autism speaks equals bad? Woe to those who press play. Needless to say, I was not looking forward to seeing this. However, I felt that if my review could stop one person from seeing this movie, then it would be worth sitting through. ‘Grrrrrrr. Fuckity fuck why don’t you watch my film before you judge it? FURY’ Sia tweeted early on, in response to critics. Well Sia, I’ve seen your movie. Its terrible.
Indeed, this movie isn’t just terrible. Its offensively, patronizingly, terrible. Its’s the cinematic equivalent of every person who’s ever looked at you pityingly when they say that your autistic. It observes without understanding. This is apparent when in one of the movies many phoney postcard- inspirational attempts to pull on the viewers heartstrings, two of the main characters entrusted to care for Music – Zu and Ebo – walk behind her in the park, and comment on how her autism means she can apparently hear whispering from three rooms away, which…uh….no. If this seems a baffling indictment of the kind of ‘magical thinking’ idea of autism, that guides many of Sia’s directorial decisions, including the sensory-overload inducing dance routines that pepper this film, that’s because this movie is not for autistic people at all.
‘Music’ tells the story of Kazu “Zu” Gamble (Kate Hudson) – the lead characters drug dealing sister, struggling to stay sober. In true rain man form, the autistic girl becomes a cynical plot device to help the protagonist achieve her goals of getting her life together, and be with the kindly neighbor ‘Ebo’ (Leslie Odom Jr.) As well as bein a redemption narrative for a neurotypical characters, its also a vain mercy device for Sia who has a cameo in this movie to talk about a fabricated charity venture named ‘popstars without borders’. What autistic people are supposed to get from any of this, is unclear. The whole piece reeks of a ill-informed attempt to pander to some neurotypicals desire to feel good about themselves, while allowing Sia to give herself a pat on the back for being such a good saviour of the autistic and disabled, who she evidently dosent believe have any agency of thier own. In one particularly revealing interview leading up to this film being released, the interviewer compared non-verbal autisitc people to inanimate objects to which Sia nodded and smiled. Did I mention that Autism Speaks was involved here?
From the moment this film starts, you get an extremely offensive caricature of autisitc people as Ziegler dances through a labyrinth of flashing light while contorting her facial expressions, flailing her arms and making exaggerated movements. I remind you that there are plenty of autistic actors Sia could have picked in making this movie, who may not have so easily slipped into the kind of ableist tropes Ziegler does here. In defending her movie, Sia recalled how Maddie became quite emotional at the possibility that she could be taking the mick out of autistic people. For reference, I am not about to go after an 18 year old actress for doing something that she was told to do, but I can’t say she wasn’t right to be worried. This performance is a caricature of autistic ‘stimming’ and is deeply reminiscent of the exaggerated mannerisms people employ when bullying autistic people for the ways we behave. I find these stim activities deeply comforting, as they lend a sense of stability to my world. However, I have believed in the past that there must be something wrong with the way I move, due to bullying and imitation by neurotypicals. Watching this deeply insensitive, tone deaf embarrassment of a film makes for an infantilizing and dehumanizing experience. I won’t link to the trailer, but here is a tweet from autistic advocacy account, the autisticats:
None of this is helped by the flow of the film. The entire thing feels messy and scattered, like narrative cohesion was an afterthought rather than a guiding principle. Characters fall out and then make up, in fake attempts to inject drama into what is otherwise a lifeless and deeply tedious script. Nearly all of the dialogue is hackneyed, feeling torn from a scrapbook of generic song lyrics, a la – “I used to think I knew what love was, now I’m not so sure”. There’s an odd subplot about a non-speaking neighbor of Music and Zu who’s verbally abused by his parents, and ends up getting killed after stepping into a fierce altercation between his mum and his dad, just after buying a pet dog for Music. Why does this subplot exist? Who is this character? What is this entire section of the movie intended to achieve? In yet another display of pointless mockery, Ziegler’s character makes lots of noise in the hallway of the apartment building where she lives, provoking the ire of a very angry neighbor who responds by calling the police – a movie event that goes absolutely nowhere. Lot’s of debate has been had as to whether the dance sequences or the actual movie are preferable – a conflict I wrestled with, as I found myself wanting one type of scene to end as the other began. Worst of all, I feel the musical breaks could have worked had some serious consideration been put into them beyond the desire to visually wow the viewer, and if they were accompanied by a much more coherent film, to give them context.
This brings me to something I’ve been avoiding thus far. Let’s talk about the restraint scenes. Prone restraint is more often than not, a form of abuse directed against autistic people which can result in injury or death. Here its portrayed twice after ‘Music’ is portrayed having autistic meltdowns and both times, its portrayed as an act of mercy rather than the violent and aggressive action that it is. “aren’t you hurting her” Zu asks when Ebo performs the prone restraint action. “No, I’m crushing her with my love” Ebo replies in a line that would be outright laughable if it weren’t so ridiculously offensive and wrong. For reference, autistic people do sometimes have meltdowns when confronted with sensory overload. They are unlikely to be of harm to anyone in that moment and these states can be stabilized in a range of ways, from letting the autisitc person find a quiet space where they can calm down, to talking to them.
I’d hate to think that from watching this movie, more people came to believe that prone restraint is an acceptable way to deal with this situation. These scenes surfaced before the movie was released meaning they were among the concerns that Sia so ardently dismissed when promoting her film. I also fear for the wellbeing of autisitc people who have experienced prone restraint and are reminded of thier suffering through watching these scenes, after experiencing all the trauma that comes through being violently constrained. If there was ever a reason not to watch this awful movie, these scenes provide that excuse. The below video cuts off before any violence is shown, but is worth bringing to people’s attention:
Although I have supported Sia’s music and art in the past, after watching this film I’m done with her. Her vague apologies and attempts to cover up her huge mistakes are too little too late. Its recently come out that this movie has received a golden globe nomination which is an insult not only to the campaigners speaking out against this movies insipid portrayals and terrible writing, but an insult to all the genuinely talented autistic creators who I want to focus on much more in the future, and who unlike this movie are worth your time. I sincerely hope that Sia never plans to come within an inch of this subject ever again and I ask anyone who wishes to make autism media, not to steal agency away from people on the spectrum, not to rob autisitc actors of badly needed work, and not to shut out all facts and opinions which conflict with your ego in pursuit of making a conceited and self-aggrandizing pity narrative! Under no circumstances should creators put themselves on a pedestal by claiming to be supportive of disability, before silencing and patronizing us. If you can’t at least try and understand us by listening to people and organisations who care, let autisitc people tell thier own stories!
Its rare that I address social issues head on in this blog and I will be doing more than just bringing the news up but I hope you understand that I’ve always tried to emphasize that the lives of autistic or ‘disabled’ individuals is no less important than that of anyone else, no matter how much they are maligned or even discriminated against. I couldn’t stay silent on this…
In the UK, people with learning difficulties have been given do not resuscitate orders during the pandemic. This has continued despite The Care quality Commission warning in December that these notices caused avoidable deaths in people with learning difficulties last year. To clarify, these notices are intended and should only be used on people who are too frail to benefit from CPR, or absolutely cannot be resuscitated. This does not include anyone and everyone with a disability. The charity Mencap even say that they have received correspondence from people with learning difficulties who have been told that they would not be resuscitated if taken ill with Covid-19! Worst of all, the same organization say that these seem to have been issued for some, simply because they have a learning disability.
This underlines the way we see learning difficulties in this country. We see them in terms of ‘frailty’. We think because someone struggles to interact properly, they must therefore struggle with everything. How terrified and angry would you feel if in the middle of a global pandemic you were told that if you succumb to life threatening levels of illness, you will not be revived? Now put yourself in the shoes as someone with a learning difficulty. Even I as an autistic person feel less safe and cared for by my own government, as a result of this news. This news shows criminal failure to look at the nuances – ‘if you’re disabled, that means your too weak to deserve treatment that could save your life’. No questions asked. I wish I could say this was a few bad cases but sadly this has occurred against a background of fatal discriminations against people with learning difficulties throughout the pandemic…
A culture of systemic neglect…
To illuminate the scale of this problem, we just need to look at the statistics. NHS numbers released last week show that since the third lockdown started, the coronavirus accounted for 65% of deaths of people with learning difficulties. Whatsmore, your more likely to die from the disease at a young age if you have a learning disability, with those aged 18 to 34, 30 times more likely to die than others the same age. Looking at disability more broadly, an analysis by the Office for National Statistics estimated that six in ten Covid deaths were of disabled people.
These statistics are of course disgusting, but the causes are all too apparent. First, the way the vaccine has been rolled out. In my end of year review for 2020 I praised the news of the vaccine as ‘amazing’ which of course it still is but I’m slow to praise the rollout as a unique national effort of complete brilliance. Much has been asked in particular about why people with learning disabilities are not on the priority list for the vaccine, when the figures are so staggering. Although some people, such as those with downs syndrome are in the top four groups to receive the vaccine, many are still waiting. This is in spite of the fact that research from the University of Bristol conducted before Covid found that on average, people with learning difficulties were dying 16 years earlier than people in the general population. This gap in the vaccine rollout to me speaks to two elements: a lack of knowledge about learning disability issues – we’ll get to that, and the fact that in focusing solely on the factors of age and severity, other factors like the environments people live in, were presumably not considered. I’m not saying that we shouldn’t have focused on younger people with learning difficulties – however, through simplistic, non complex ideas of how to roll out the vaccine, a vulnerable group of people faded into the background.
‘People with a learning disability have long been forgotten and discriminated against, and never more so than in this crisis…Ultimately the medical approach to the priority list is flawed and fails to consider a host of social, economic and health inequalities.’
Dan Scorcer, Head of Policy at Mencap
One of the inequalities that Scorcer is describing here is how hard it can be to communicate across quite rigid ways of thinking about who deserves the vaccine. This can be something as simple as being high priority from a purely technical point of view, but your GP not having precise details of your condition on record. This is something most disabled people have experienced in some form. There comes a point when your requesting support or benefits when you’ll likely need to phone your doctor and ask for confirmation on exact details on how your condition effects you, only to find that those records have been lost or don’t exist. Imagine that level of bureaucracy applied to a life or death scenario. Equally, if you catch Covid and struggle to communicate your symptoms without the help of a support worker, that might be just as threatening.
On top of that, many individuals with learning difficulties, whether told to isolate or not, have been completely cut off from society since March. Understandably, this has greatly affected thier mental health. I know as someone who is autistic that I rely greatly on my support networks and friends. This isolation mixed with the danger posed to people with learning difficulties by the pandemic, is a particularly toxic combination.
One of the biggest factors causing the higher death rate among people with learning difficulties is the care homes and often very small and crowded facilities disabled people are forced into living in. Psychiatrists like Dr Keri-Michèle Lodge point to the discrepancy in the fact that older people living in care homes were prioritized for vaccination, while people living in a similar settings were ignored. This is a core example of what I mean when I describe systemic neglect; these facilities often act as ‘storage functions’ for individuals who are deemed unable to be part of thier communities, often as a result of resource and support based neglect at a government level. During a pandemic, the level of support available to people living in those settings is cut, isolating and alienating them; Being crowded and small, Covid-19 spreads easily within these settings, creating a crisis that the individuals living within are even denied the vaccine for. If they end up contracting Covid, some of them risk being given do not resuscitate notices, devaluing their life even further.
Where this comes from…
We can’t view any of these problems in isolation. While the figures I’ve mentioned here are deeply unpleasant truths, from my perspective I can’t say that I’m all that surprised. When people talk about ‘Covid recovery’ they tend to think of it purely in terms of ending the pandemic when in meaningful terms it should include solving the issues that have been exacerbated by the current crises. The assertion that you saw in some memes and by some commentators, especially at the start of the pandemic, that only certain ‘vulnerable’ sections of society are affected seriously by the virus, works in practice as a call to “get back to normal” without solving the issues which increased the suffering of these communities.
One of these issues has to be the gap in social care. The vaccine prioritization question has highlighted how disabled people are very much left out of conversations around this issue. To illustrate this, consider the fact that the National Institute for Health and Care Excellence issued a clarification about people with a learning disability only after publishing guidance on using who may is appropriate for critical care. That was a huge mistake. In 2018 to 2019, 293,000 people aged 18-64 received council-funded social care in England, mostly at home, with 70% of them needing it because of learning difficulties. Currently, these younger adults account for around a third of all those receiving social care, and around half of all local authority social care spending. Considering this, its absolutely bizarre that disabled people have become something of an afterthought!
On top of that, we must improve standards of care and make it easier for autistic and disabled people to become part of thier communities. Last year, the CQC pointed to poor standards of care as a problem which exists in some hospitals. This can span from some staff not knowing how to speak to patients to issues stemming from under-resourcing. The shortage of specialist nurses is among the serious gaps in the NHS workforce. In a wider sense, benefits freezes and cuts to local services such as libraries have made it harder for people with additional needs to participate in social life. In 2020, a review of 50 people with a learning disability whose death had been attributed to covid-19 highlighted how many of them had mobility impairments, and/or mental health needs. The author suggested that these factors may lead to an increased risk of covid-19—because of these people’s need for regular and sustained contact for support. The author of this study noted that: “these characteristics underpin prejudicial attitudes towards care, treatment and judgements about ceilings of care”.
The struggles around mental health and grief may be particularly prominent for people with a learning disabilities who now having the little autonomy some of them already have removed. Loss of contact with the outside world, an end to outreach work, struggles with employment. All of these are problems which existed before the pandemic. To neurodiversity activists the message is simple – if its a problem now, it will still be a problem after the virus is gone! On the issue of mental health, rather than trying to set up systems of care and support, individuals with learning disabilities are often inappropriately prescribed medication to control so called “challenging behaviour.” Similarly, people in ‘formal’ inpatient mental health settings are at risk of other restrictive practices, like physical restraint. Still, the pandemic has led to limits on visits by family and friends, heightening risk of abusive environments being created.
It can be said that the isolation and mental challenges that come with Covid are what many people with learning disabilities experience every day. What does getting back to normal mean, for instance, for someone living in an institutionalized environment? In my view, part of the response to the pandemic has to be not only lifting those who are disproportionately affected out of thier situation, but lifting up those who were left out of society to begin with.
An Atypical Perspective…
All of the elements I’ve pointed to across this blog post relate to how we value the lives of people with learning disabilities. In telling them that they won’t be resuscitated, in not prioritizing them for vaccines in spite of the evidence, in cramming them into isolating social care sessions, we are sending out a very clear message: you don’t belong. In that sense, part of all of this has to include combating narratives about who gets to be a member of society. We assume disabled people can’t be part of thier communities or are to frail to receive life saving treatment. With these ignorance’s existing in multiple areas of life, and at multiple layers of governance, we ‘disable’ people, cutting out thier means of support and creating a self-fulfilling image of these individuals: unsociable, constrained, withdrawn. That’s what’s meant by systemic neglect. Covid-19 has highlighted these issues starkly and frighteningly. Now we must respond by breaking the ableist cycle, and doing away with the stigma.
Being autistic you experience the right to work – or even not to work – in different ways. The first is through the application process and the decision whether or not to disclose your autism to your employer. On the one hand, being autistic colours our experiences of everything around us so how we answer questions like ‘How do you perform in social situations?’ might be different from that of neurotypicals.
Disclosing at an interview or on application forms can have pitfalls and can shape the employers perception of you. If you are to disclose, how do you do that? ‘Well, I cope well in some social situations but in others I might need to stand in the corner on my own. By the way I’m autistic’. I know one person who used to work in an independent café and tried to disclose their ASD to their manager, to be met with the response ‘It’s not really bad, right?’. This attitude was reflected on one particularly busy day when they tried to ask for five minutes on their own, only to be told that that any quiet time would be deducted from their lunch break. After asking for ‘reasonable adjustments’ on multiple occasions, they were fired and underpaid.
In preferable, albeit deeply flawed scenarios, scholars and even some autistic charities, preach the virtues of neurodiversity as being good for business. ‘Neurodiversity is a competitive advantage’ proclaim Harvard. These are well intentioned yet stand by the market logic that autistic people ought to be defined in terms of their profit-making abilities. There’s a famous article by Simon Baron Cohen, where – to his credit – he says that the neurodiversity movement “recognizes that genetic or other kinds of biological variation are intrinsic to people’s identity” but argues that the movement ignores the more ‘disabling aspects of autism’. This is a common misunderstanding, so let me clarify: we know that as autistic people we struggle with certain things, but we are not flawed. People with neurological differences are not broken copies of normal people, any more than we are mathematical machines. Often, being disabled is defined more by the conditions which society puts in place which force us to struggle, than by individual weaknesses.
To me, the crucial aspect missing from Cohen’s analysis is autonomy. If you’re an autistic person who instead of working, spends your days going to fitness socials, or volunteering or even just engaging in a hobby, your considered an unproductive member of the community. If you are in a job which you struggle with, well, looks like you chose the wrong career path…better luck next time, kid! All the while data scientists and engineers are touted as the autistic ideal, while Tesla and Google get to tell everyone about their oh so accomplished neurodivergent employees. I argue that we ought to be dismantling the barriers which prevent autistic people from finding meaningful work, while granting them the autonomy to decide how and if they want to be part of the economy.
There is a difference between impairment and disability…
“With impairment comes personal challenges… disability, in contrast, is the political and social repression of impaired people. This is accomplished by making them economically and socially isolated…The disabled community argues that these disadvantages are thus not due to impairment by its nature, but due to a cultural aversion to impairment, a lack of productive opportunity in the current economy for disabled people. Disablement is a political state and not a personal one”
Sunny Taylor, The Right Not to Work: Power and Disability
Taylor goes on to argue for her right not to work. She’s a painter, who due to her disability paints by holding the paintbrush in her mouth. She does sell her paintings but doesn’t support herself with that money. She feels questions about that are a test to see if what she spends her time doing is a ‘legitimate’ hobby or not. She’s not denying her impairments. No neurodiverse or physically disabled people deny that they have tasks which they struggle with. Autism, for example, can come with certain allergies, or sensitivity problems. When we talk about not wanting to pathologize people, we don’t mean denying that autistic people struggle in social situations. However, not wanting to be around others is different from finding socialising difficult. These are both options which autistic people should be allowed to freely choose. Sadly, much of the business world and the psychiatric world treat these as indistinguishable from each other, and in need of remedying.
In his article Baron Cohen cites some autistic peoples struggles to communicate as a problem that the neurodiversity movement are failing to address, but this is nonsense. As stated, autistic people can struggle to communicate. Additionally, many of us prefer to listen than to speak, or only interact with people we feel comfortable around. I still struggle with corporate language and when harshly spoken to; I struggle to focus on the content of the speech. I often need to ask people to repeat things several times occasionally, and you know what? I’m surprised more people don’t! That’s not meant to be accusatory, but to highlight how one of the biggest challenges faced by autistic people is neurotypicals reluctance to interact with those they perceive as ‘different’.
All these are barriers to autistic people finding and enjoying work. Even if you don’t work, the type of language and modes of communication you might face when going to a bank or a job centre, may not be accommodating if you struggle with social anxiety. There’s an idea called the ‘double-empathy problem’ which states that because neurotypical onlookers view autism in terms of how it looks, and not in terms of how people experience their autism, empathy between autistics and non-autistics can break down, especially in tense scenarios. The way people who know I’m autistic behave to me often ranges from oversensitive – ‘let me explain every word I say to you’ – to ignorant – ‘well you should have been listening if you didn’t understand’.
One example that always gets given is pretend play. Thinking in terms of neurodiversity, a child may prefer to observe other kids playing without necessarily joining in themselves. I have always been and continue to be an observant learner. The problem is we track progress on neurotypical developmental timelines and act like its strange when autistic people divert from that. For all the options Covid takes away, I think the new world presents an opportunity to give people -autistic or non-autistic – more choices about how and where they work, as well as giving us a chance as a society to reshape how we interact with people under stress, and how we decide what work is meaningful or not meaningful. This leads me to discuss the issue of independence…
Independence is a flawed measurement of success…
Continuing this idea of how we measure development, I would like to specify that I consider myself relatively privileged. I enjoy my job and feel supported there. This is by no means the case for everyone. In Wales where I’m from, the TUC believe that many autistic workers face “daily discrimination”, saying that their research shows that many employers are unwilling even to make even the smallest of adjustments to their workplaces. They go on to say that fewer than 100 companies have signed up to the positive about working with autism charter. However, while I have a large degree of independence and intend to get more, there are other traditional measurements that I’m quite a while from achieving. Sunny Taylor adds, “Independence is perhaps prized beyond all else in this country, and for disabled people this means that our lives are automatically seen as tragically dependent.”. In my case, while I’m able to go practically anywhere by public transport, I still don’t know if I will ever be able to drive, which many regard as a cornerstone in being ‘independent’.
When I did outreach work for autistic adults I met some people, who were better with directions and talking to people than I am but needed some assistance in cooking their own food. The point of the neurodiversity movement is to question whether being ‘independent’ means being able to perform household chores without assistance or being able to choose your friends. Considering this throws the employment question into a different light. An autistic employee might need help getting around but be great at their work. In so many cases though there’s a bar to entry for valuable professions where traditional measures of independence are used as a judgement on how the individual will perform in the workplace. If you manage to overcome those hurdles, you risk being talked down to by people who treat your perceived lack of ‘mobility’ as an excuse to speak to you in an infantilizing or patronizing way.
As noted, I’ve only seen scratches of this in my current role, and much as intention doesn’t mitigate the problem, it’s nearly always been a case of easily corrected bias rather than anything malicious. On the contrary, overt bias is something which particularly exists in certain media circles. Its an industry more obsessed with mitigating the risk of anything going wrong, than you would expect. Being an autistic person in a newsroom or at certain PR companies very much consisted of being ignored and being given begrudging excuses of how putting me on a story or letting me tail a journalist would be ‘too complicated’. What right then do armchair commentators and media pundits like Toby Young have to label autistic people unproductive members of society if they don’t perform as ‘efficiently’ as some of their neurotypical counterparts, or don’t ‘work’ in the traditional sense?
I bet some of you are thinking ‘Well, I had to make adjustments to get to where I am. You can’t expect everyone to roll over for your personal needs’, but this ignores the fact that as well as there being neurotypical-centred expectations of independence, there are also neurotypical centred timeframes for when these milestones should be reached. Autistic people, like everyone, do try and learn new skills to better themselves. However, while a lot of neurotypicals might learn to drive at 18, some autistic people might not get their license until their late 20s, especially by the time they’ve built up the confidence and passed. I didn’t have any long-term work until the age of 24, and when I was much younger I took a long time to adjust to the sensory environments that encircled me during primary school. There’s a really interesting discussion to be had another time about neurotypical vs. neurodivergent time, yet the timescale on which you progress through stages in your life can effect everything from relationships to career prospects to education. What you can and can’t do at a certain stage in life can have profound impact on what opportunities you are offered and how you are treated.
An Atypical Perspective…
Ultimately, although the theming of this blog has been work and employment its messages apply on a grander scale.
The first thing we need to do is respect the choices of autistic people even when those choices seem inconvenient or not age appropriate. Workplaces in particular can make themselves more receptive to these choices by providing different working options, allowing people to choose their hours, or even democratizing their processes so autistic people don’t feel pressured. Reconciling how autistic people experience the world with the demands of ‘standard development’ means listening to them about what they can and can’t do and providing meaningful alternatives when an autistic person can’t handle certain circumstances or situations. It’s never letting a neurodiverse individual overhear themself described as “hard work” or “far behind,” and remembering that an inability to communicate doesn’t mean inability to understand.
More than that we need to do away with certain ideas of what success is and how to measure it. By certain measurements I’m sure you could consider me a failure. I’m 26 and I don’t drive, I don’t yet live on my own, and I’ve never really been in a proper relationship. And yes, I struggle with those feelings of worthlessness put upon me by a world obsessed with ‘achievement’ but overcome those moments by reminding myself that I’ve got time to achieve all of those and more, if I want to. Often, autistic people have to camouflage in reverse by detailing everything we struggle with and everything we don’t like about ourselves in order to secure access to certain benefits or support opportunities. In other cases, we have to pretend to be as ‘ordinary’ as possible in order for people to respect us as normal. Either we’re not autistic enough, in which case we don’t need support or we’re too autistic, in which case we can’t be respected as adults. This creates a system where ‘success’ is continuously out of reach.
Ultimately, neurodiversity means just that: diversity. Some autistic people will never take an interest in cars or sports. Some will learn to paint but always struggle to communicate through body language. Some will understand emotion far more easily through the medium of song than through speech. Some will defy concepts of gender and sexuality entirely and identify as non-binary or asexual. There are enough resources in this world to accommodate for all of these, and with the help of autistic people there can be even more. The world requires all kinds of minds!