So today I’m talking about my idea that the thing that’s holding back the autistic rights movement is the very institutions of society. The basic building blocks of 21st century Britain is what’s destroying our lives and even the people who seek to do good within the system do more harm despite what they perceive to be their “best intentions”. Yes, I’m going there. Get out your Foucault, strap in. We’re talking about institutional barriers to access our basic rights. It’s not going to be a happy one.
Despite a growing movement to recognise autistic people’s human rights at least in words, the actual administration of those intentions is still widely divergent. The UK has an Autism Act, a Disabilities Act, an Equalities Act and forbids discrimination based on race, gender, ethnicity, sexuality and disability. The US and the Netherlands even state this in their constitutions. Yet. Oh yet.
This blog discusses institutional causes for individual suffering, so TW: discussions of suicide, abuse, mental health, educational failure, bullying, ableism, eugenics, racism and conversion therapy.
Also, when I say neurotypicals I am referring not directly to all neurotypicals being bad people. I am referring to a system that upholds neurotypical supremacy. Just thought I’d clear that up before I start.
We’re not so different, you and I…
One thing that I have always found annoying as a talking point within the discourse of disability, is the question: “well, what even is normal?” The intention here is laudable. The speaker questions the necessity for heirarchies within society between groups of people with different abilities. However, this doesn’t change the fact that these hierarchies still exist for a reason: ideology and structural inequality. Within a capitalist system, inequality isn’t a flaw, it’s the point. Difference between people is exploited to redistribute wealth upward, towards those who already have most.
The worst person to work with an autistic person, or to be their friend, is someone who says: “I know what you’re going through,” or “I’ve been there,” falsely, whether through malice or ignorance. Because they don’t. This was my daily experience at drama school, where I had flaring anxiety and meltdowns because I was diminished, ridiculed and misunderstood, often by the same people who then told me they got what I was going through. This is a clever tactic that people use to feel less culpable for their own actions, since it allows them to salve any sense that they may be abusive or violent in their approach to the person they are abusing, intentionally or not. The carrot with the stick.
The difference between normal and abnormal exists because it is useful to those who benefit from it, whether they say they are inclusive or not.
Pity and contempt aren’t just two sides of the same coin; they are the same coin. They both exist to maintain the self
I really don’t want to be catty towards Francesca Martinez, whose work I’ve always enjoyed and rated. Her book and show What the F*** Is Normal? did a lot of good. But the point that needs to be made is: once you’ve got the audience to question their fear of disabled people, why aren’t they then sharing their wealth more equally? They are willing to stop openly reviling and fearing disability, but are unwilling to give up their superior position over us. Then, it’s a small step for those neurotypicals from pity to contempt.
This week is the start of Autism Awareness Month, which both here and in the US is still highly influenced by Autism Speaks and other ABA-organisations. These are exactly the people who benefit from the disempowerment of autistic people. They make good money off claiming to “treat” or “cure” autism by providing conversion therapies or resources that have conversion to the norm as a goal. Afterwards, these children and adults are scarred and dependent on the very same mental health care services that have let them down in the first place. It’s a great way to keep the private healthcare industry growing and if some die, well, the choice was theirs to make. It’s a small step from pity to contempt. Even better if those who pity or are contemptuous are convinced that they are just.
I am not against mental health services, in fact, I have my life to thank for the individuals who ‘got’ me and adjusted their approach to me rather than demanding me to change. Mental health care is, as Tom Burns writes in Our Necessary Shadow, a vital part of safeguarding the lives of many. On the whole, we don’t like what mental illness tells us about society, or even humanity. Mental illness is the sublime, shifting at high speed between fear and fascination, pity and contempt.
Autism is worse than that, because of an even greater lack of intuitive empathy on the part of the neurotypical. Autism is the human gone wrong which – in the mind of the neurotypical – inspires first pity, then – once their good intentions are unmasked as erasure – rage. Then, finally, apathy at our suffering due to their own actions and inaction. Many of the people legally sanctioned to care for us are unable to do so, because they do not see us as full humans. That is not a problem per se. Much good can be done from a position of equivocation or apathy. The issue is that the systems are set up to privilege one form of being over another, neurotypical over neurodivergent. Normal over weird.
How is institutional neglect not a crime?
One issue I find again and again in discussions with neurotypical connections is the bafflement, bafflement at the lack of progress, the continuing high suicide and early-death rate and the joblessness rate within the autistic community. There should be all these protections available. Within education, healthcare and social care, we have safeguarding regulations and teachers, schools and the NHS are held stringently to them. But autistic people keep on slipping through the net, consistently. This means they end up under-educated, excluded from society and in greater need of health care that is made inaccessible to them.
When I was at the Parliamentary Enquiry on the Autism Strategy, I was struck by Baroness Browning’s rage at the CQC representative for not investing in autistic trainings. The CQC man responded by saying: “Ma’am, we were unable to because of austerity.” She angrily said “Oh!” and sat back down, moving right along. For the rest of the time there, she remained angry at the CQC, without acknowledging that she had signed off on at least some if not all of the unnecessary, vicious and ideological budget cuts made during the Cameron years. Austerity does this. The purpose of economic austerity is to heighten inequality and redistribute wealth from the poor towards the rich. In that, austerity was an absolute triumph.
Repeatedly, consistently, when working with neurotypical members of staff in healthcare, education and social care, there was a hands-off approach. An approach of “if I can make one person’s life a tiny bit better then I’ve succeeded.” No, you haven’t. You’ve not done anything. These people are part of institutions that have been instructed, top-down, to make lives worse. The unnecessary and previously uninvestigated deaths of autistic people in mental health services are indicative of that lack of care, the callousness with which we are already treated in society, from the people who are paid to keep up alive and make us well.
Again, I am not blaming the individual here. They’re not the problem. The problem is wider than that. Ideas and thousands of years of history and power underlie the ways we learn, teach and understand the world. Inequality is baked into gendered language and forms of address. In the sports we play and why we play them. In the very idea of nationhood. The fact is, from the earliest moment they engage with an autistic person, including through intermediary sources and hearsay; neurotypicals are taught that their way of existing is superior to that of autistics.
Most will scoff at that, they say their parents were accepting and kind. And that may be so. But whose kind? Who defined what kindness means? Neurotypicals are the more powerful neurotype and due to the double empathy problem, they cannot intuit autistic minds. That leads them to draw conclusions about us, from within a medical model. When a well-intentioned person growing up in the 20th and 21st centuries becomes a teacher, a doctor, a social worker; they bring these ideas with them. These ideas are hard to remove, especially if their sense of right and wrong are bound up in them.
There are arguments flying around that autistic people should have the choice to end their lives if life becomes unbearable. Detached from its context, that sounds valid: everyone deserves the right to self-determination. But it is ignored that this same conversation was happening about gay people not too long ago. And that’s just those who see themselves as enlightened: the worst bigots simply see disabled people and autistics as wastes of money that will never contribute to society and need to be bred out of existence. Hence the Anti-vax nonsense that started coming out in the late 1990s. It was always eugenicist, it was always from the perspective of: autistic people are non-human and they need to not exist for humanity to be good again.
I mean, sure, but you need to set boundaries…
The next problem is about boundaries. Whether in education, healthcare or social care: safeguarding trainings are all about going the extra mile for students in keeping them safe and to register the concern with those with the power to make changes. Often, for autistic people, our cries for help are ignored. Our health and lives are valued less than neurotypicals’, including by those directly charged with our welfare.
But what if someone does raise a safeguarding concern, but the people in charge don’t make these changes? Safeguarding is about stating a concern and then sitting on your hands while the person in your care suffers. “You have to have boundaries,” is what I always hear when I’ve raised safeguarding concerns, especially repeatedly due to consistent lack of action. There currently is only accountability for the affected person, their carer, their teacher/SENCO/GP/AMHT/CAMHS provider. Even heads of departments can raise issues. But then it often stops. When those people have indicated concern, that does not mean that action is taken. When a young or vulnerable person is in severe distress and requires assistance, that is an indication that previous warnings were not taken seriously.
The boundaries are financial: ‘I can’t fund this,’ or practical: ‘I don’t see how this is possible,’ legal: ”This is not our responsibility and it would be wrong for us to do so,’ or even moral: ‘We shouldn’t overstep our mark.’
These boundaries are never discussed during safeguarding training sessions. Then, it’s all about the person your caring for. They matter and they deserve to be kept safe. In my experience, in healthcare and education, unfortunately, the purpose of safeguarding is to safeguard the institution from liability when things go wrong. The boundaries are set higher-up, with the intention of keeping large private companies and government-run institution safe from legal consequences. It’s about ticking boxes, not providing care. ‘You can’t say we didn’t leave a paper trail,’ they say, because usually, that’s all there is. And even then, I’ve seen complaints of bad behaviour against autistic people be muffled by a lack of paper evidence and, when it’s there, openly dismissive attitudes disguised in jargon.
When an autistic person you work with is in distress, whether that’s sensory overload, meltdown, shutdown or panic attack: you have caused that by not allowing the person to feel safe. You are responsible because of a lack of knowledge and empathy. You have caused that, intentionally or not.
I don’t mean that people shouldn’t safeguard and take the responsibility they need to take. I’m saying the opposite: they should. But these regulations should have the welfare of the person being safeguarded at heart. If any institution neglects care to any person who needs it, they should be held as responsible for their actions as in the case of actual malice. Yes, you could say that this idea could be abused and is unworkable in the current system. I agree. That’s my point. We need to change the system instead.
We live in a culture that is not great at admitting responsibility and learning from mistakes. Sure, the language is there, at least in the UK (“we apologise for any inconvenience caused” is my personal favourite), but the main point is not to learn. Because the person apologising loses something when apologising. They lose the self-proclaimed right to be a good person.
I feel that the need of neurotypicals to be seen as a good person is the most important institutional barrier that autistic people face. Because in order to be good, you can’t be seen to do bad actions that cause others pain. Well, if you work with autistics, you’re going to mess up. And often badly.
You can only do so much…
When faced with the responsibility of what safeguarding really means, the average person ends up not really thinking about it. When things get seriously bad is when they get worried. Primarily for themselves, because even though they raised safeguarding questions repeatedly, there is no action. The vulnerable person is there responsibility. The only way they can pass on that responsibility is to pass on to someone who does have the power to do something. Then nothing happens either way.
This it what kills people. There is never any accountability, because the buck never stops. I believe institutional neglect is the number one killer of disabled people. The support that we need to survive and thrive, though legally mandated, isn’t actually available. Anywhere. There is currently no specialised mental health care for autistic people, even though that was in the Autism Act 2009. That’s because it doesn’t exist. What does exist is ABA and their providers who are still legally advertising conversion therapy and are well-known and well-liked by all concerned. Instead of investing in disproven abuse, the government could have invested in autistic-led research, primarily by people who also experience minority stress in other ways. But they haven’t.
It’s easy to say that we should have self-determination, without then doing anything to change it. It is the same as racial inequality: if you start the race in wealth creation 300 years behind, then there needs to be some kind of redistributive action. Then that doesn’t happen.
I am not saying that all disabled people and all autistics are equally underprivileged. I am saying that race, gender, sexuality, gender identity, ability neurotype and class are all used to advance greater inequality. This is why autistic black young men are even more likely to get shot or imprisoned in the US than neurotypical black men. There are also autistics in positions of great power and influence who are using this to get even richer and hobble any significant change for the better.
I may sound cynical. It’s true, living autistic in a neurotypical society does that to people. I used to be, for years. But I no longer am. Cynicism is a form of accepting defeat. It’s a failure to grasp the possibility of change for the better (Have a look at this recent José video where he explains it a lot better than I can). Structural inequality and the weight of living a marginalised life make it more likely for a young person to be radicalised. If a young person is structurally excluded by society, then it is easy to either fold inward or lash out. Yet we don’t do so, instead punishing young people for being poor, queer, disabled and from non-white backgrounds. We are breeding contempt towards ourselves.
I used to have long discussions with my partner about what the point of it is. Why fight inequality when human beings are racist, abusive, aggressive and violent and find joy in the suffering of others? Why try to make the world better when the climate crisis is out of control and pandemics swoop the earth? What’s the point? Humans are awful.
The point is this: to do the right thing is to do an act that is valuable in and of itself, without regard for personal liability. The right thing comes first. To do the right thing in spite of overwhelming public support for the contrary position is what we autistics are good at. As autistics, we have no need to learn to do “small-talk”. It is a purposeless activity with zero net gain on either side and a huge net loss on ours. We can be together with people in a way that benefits all, without the justification of: “it’s just what you do”. No, we can do better than that. Let’s do so.
Quick update from me: I’m really tired today. I’ve actually gone non-verbal. That is rare for me. I was even unable to cook. I’m using my one spoon for today to write this messy blog and then curl up again. Again, I am not accusing any individuals. Most individuals working in healthcare, education and social care are amazing and get up every day to fight a system directly working against them. Other individuals get very powerful by working the system as it should; to the detriment of those they should be supporting. I’m not talking about those individuals either. We need a system where bad actors have no opportunity to abuse individuals, because the system benefits the person who needs the help, rather than those who have a financial stake in seeing them suffer.
Love to everyone, I’ll see you next week.