Autistic Pride Day and our Drowned-Out Voices

(There is an easy-read version of this post at the end.)

Today is Autistic Pride Day, a day to celebrate autism, Asperger Syndrome and other similar neurodivergence, proposed 11 years ago by Aspies for Freedom.

Disability pride is a theme that is often overlooked by a society that cannot cope with the idea of disability as anything other than a tragedy. Into that environment come transformative approaches like #AutisticPrideDay. Modelled on queer pride, focused on acceptance and celebration (not ‘awareness’) of all who are neurodivergent in an autistic/Aspie direction, the day has inspired some great tweeting and blogging today.

The Silencing of Autistic People, and Amplifying Only Autistic Voices

Many autistic people have spoken of the double-bind where we are rarely listened to on the subjects of autism and neurodiversity. If we can use language, or would otherwise be medically referred to as ‘high functioning’, we are told our voices don’t count because we can’t speak for, or with, those who don’t use language. (As though anyone can speak for anything except their own experience. And as though the voices of non-autistic people who happen to know autistic people are therefore more important than the collective, diverse voices of other autistic and neurodivergent people.) Often, though, so-called ‘high functioning’ autistic people aren’t even listened to on our own behalf. Our voices are drowned out by would-be helpers – who often aren’t saying very helpful things about autism at all.

In a recent example of this: only this week, the excellent Ann Memmott has been reviewing a book on the theology of autism, in preparation for writing her own book on the subject (which I’m very excited about). This has inspired her to tweet and blog about autism-related issues that the book got wrong, often horribly wrong, including empathy in autistic people. (Fair advance warning: this sounds like a damaging and dangerous book.) My heart often drops when I hear about books written on autism by non-autistic people, and especially theologies. There are some terrible theologies out there about disabled people of all kinds – but perhaps especially about neurodivergent and autistic people. I’m excited that Ann, who is autistic herself, is writing a book (with another theologian) on the theology of autism. There is a serious need for more of the voices of autistic Christians to be shared — drowned out as they often are by family, ‘experts’ and others whose experience of autism is not first-hand, and is sometimes based on damaging stereotypes and mythologies.

So, to do my small part in addressing that silencing of disabled people, here are resources that have been shared today, only by #ActuallyAutistic people.

Blog Posts for Autistic Pride Day

Blog posts both new and old have been shared in celebration of today.

One of my favourite informal disability academic networks, #AutisticsInAcademia, put together a blog post about the exciting things many of us are doing in research, and our autism pride. (Includes a bit by me, on my own research and being autistic in academia.)

“So why have I chosen to disclose now? I have begun to realise that non-disclosure can serve to perpetuate the autism myths I so want to dispel. If those autistic individuals, like myself, who can ‘choose’ to, stay hidden – because we are able to mask our difficulties – then there will continue to be less information available to challenge the assumptions people hold about what autism actually ‘is’. Without highlighting the full breadth of the diverse spectrum, autism will continue to be understood as a deficit based diagnosis, rather than a skills-based identity.”
– Julia Leatherland

Andrew Hickey wrote about what he wants from society as an autistic person:

“I don’t want acceptance. I want respect as a minimum, and ideally celebration… things will only change with massive efforts on the part of a society that is completely unwilling to do anything about them (but which is entirely fine with torturing autistic children in the name of modifying their behaviour to “help them” by making them fit in, and with trying to find a “cure” that will erase our individuality and replace us with people who can fit in better — and indeed which pats itself on the back for its efforts to do these things).”

Rebecca Burgess’s wonderful reinterpretation of the ‘spectrum’ of autism as a wheel is a must-read, and is in an easy comic-strip format. Imagining the spectrum not as a line, but as a wheel, helps with understanding why autistic people vary in the things we can and can’t do. It also clarifies why labels like ‘high functioning’ and ‘low functioning’ can be very misleading.

“Sometimes, if someone is diagnosed as being ‘on the spectrum’ and informs another person of this, it’s so that they can get some understanding and respect for the things they are unable to do. But, it is also so they can cooperate with the world around them – so they can be the best in the things they can do.”

Julia Bascom’s ‘Quiet Hands’, about the mistreatment of autistic people who want to use their hands instead of their voice to communicate, is a tough read emotionally. But it’s not long and very accessible. Content warning: this is about routine abuse of autistic people, especially children, presented as ‘therapy’.

“Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.

We threw the straps away. His old school district used them.

He was seven.”

There was an excellent blog post on the churches and the need for them to listen to autistic people in their pews, but it was by a family member rather than an autistic person, so I won’t share it here, but I’ve put it on twitter. I’ll put together a separate post over at naomijacobs.wordpress.com on posts shared today on religion and autism.

Twitter Posts for Autistic Pride Day

And twitter was full of wonderful autistic pride posts today. Here is a selection of the tweets that were shared:

Owen R. Broadhurst said “This #AutisticPrideDay, know you’re not a disease, a burden, an epidemic, something to be cured or fixed. You’re you, and you’re wonderful.”
Brooke Winters said “Happy #AutisticPrideDay to all the queer autistics!” (Research is beginning to show that significantly more autistic people than non-autistics are LGBTQ+.)
The Aspizilla wrote “Fight the media narrative that we’re all dangerous. Donate 2 orgs educating businesses about our value.”
– Celebrating both #AutisticPrideDay & Father’s Day, Hayley Morgan said “My autistic husband is the best Dad. He will be rewarded in beef burgers and WarHammer goodies ” (We are often stereotyped as being unable to be good parents, unable to be good at many ordinary things. Lovely to see autistic dads celebrated on Father’s Day.)
James Cusack said “I’m proud to be autistic and I’m proud to work with so many talented, inspiring, and innovative autistic people.”
Sam wrote: said “It’s #AutisticPrideDay and anyone who doesn’t buy me a coffee today is ableist. /jk” and I am completely behind this sentiment and where is my celebratory pot of tea from you all.
– And Anarkoautist reminds us of the unjust truth: “Today is #AutisticPrideDay. There are so many queer autistic people but events like pride marches may not be accessible to us.”
– It was also nice to see a few non-autistic people do a lot of retweeting and reblogging of autistic people’s own thoughts and opinions today. Amplifying autistic voices.

But even Autistic Pride Day, created specifically for neurodivergent people ourselves as it was, is not left alone by those who want to be the voices of autism without allowing us to speak. There was some understandable frustration, on twitter and in blogs, about the hijacking of today’s celebration by those who are not autistic and not working to amplify autistic voices. Several news/media outlets, for example, had recruited the parents of autistic people to write about autism today. Even Autism Speaks attempted to get involved – oh dear. (You can look up the problems with them if you’re interested, or see Andrew Hickey’s post above.)

The struggle for autistic people to get our own voices heard by society continues. If you want to join in, you can help by helping to amplify our voices, not the voices of organisations and individuals that do not have our empowerment at heart.

Happy Autistic Pride Day! I’m off to share burgers with my partner. They thought of me and bought my favourite flavour of everything: plain.

Easy-Read Version:

Autistic Pride Day:
  • Disability pride can be hard for people to understand. Sometimes people only want to see disability as a sad thing. Autistic Pride Day is a day of celebration:
Autistic People’s Voices:
  • There were lots of good twitter and blog posts about autism today.
  • Sometimes people don’t want to hear the ideas of autistic people. They sometimes only listen to parents or doctors instead. This sometimes happens to autistic people who can speak. We are told that we are not like autistic people who cannot speak.
  • Ann Memmott has been reading a book about theology and autism. It was not written by an autistic person. Ann said that the book made many mistakes about autism. Ann wrote blog posts on empathy and how autistic people are sometimes treated as different from other people. Ann is writing her own book on theology and autism.
  • Here I have only shared blog and twitter posts written by autistic people ourselves. This is my small way of trying to help the voices of autistic people get heard.
Blog Posts and Tweets:
  • Andrew Hickey has written about the sad situation for many autistic people today. He writes about the things he wants for autistic people in society. He wants us to have better health. He wants us people to treat us well and not abuse us. He wants people to stop trying to cure us.
  • Rebecca Burgess drew a comic about the autism spectrum. The comic explains that this spectrum is more like a wheel. Things like social skills and sensory experience are written on the wheel. Some people find some things on the wheel difficult. They may find other things on the wheel much easier. This helps explain that all autistic people are different.
  • Julia Bascom wrote a post about the way some autistic people are mistreated when they want to use their hands to speak. Some autistic people have been told not to use their hands. This has stopped them from communicating in their own ways. It is an emotional post and might be upsetting. But it is easy to read.
  • There was also a good blog post asking churches to let autistic people speak for ourselves. This was not written by an autistic person. It was by a family member of autistic people. I will put blog posts about religion and autism on my other blog.
  • There were lots of tweets celebrating autism today. They are all linked in the blog post above.
More about Voices:
  • Even on Autistic Pride Day, not everyone allowed us to speak for ourselves. People can help by sharing things written and said by autistic people ourselves.
  • Happy Autistic Pride Day. My partner bought me my favourite kind of burger and salad, which is plain!
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Reblog: An extremely perceptive post on normalcy, the pathologisation of autistic people… and the ‘fidget spinners’ fad

The ‘fidget spinner’ fad may look like just another silly craze to you, but don’t be fooled: it shows up some incredible truths about normalcy, and the pathologising of things autistic people (and other disabled people) do…

Content warning: refers to the emotional and physical abuse of autistic people (in the form of ‘treatment’ that many are subjected to).

“This is important. Really important, so read this next sentence twice: Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people. This should make you stop and think, especially if you are someone who works with, educates, or researches people with diagnoses like autism.”

http://www.thinkingautismguide.com/2017/05/what-fidget-spinners-fad-reveals-about.html?m=1

Why We Have to Fight for Access to Theory: Judith Butler and the UCL Lecture

This post could also be called: Know what you’re letting yourself in for when you start an a campaign for disability access

UCL and the Inaccessible Lecture Hall: The Story of a Week

I was delighted when I heard that Judith Butler was coming to speak at UCL. Professor Butler, a prominent feminist and gender theorist, is based in Berkeley, California. Like many disabled people facing travel barriers, I don’t get to go to international conferences to hear major academic speakers very often. This was on my doorstep.

On Monday, I realised that there was no disability access information on the ticket website for Thursday’s lecture. I politely emailed the UCL Classics department to ask how a wheelchair user would access this event.

On Tuesday, I got a brief reply. “I’m very sorry but the Logan Hall where the event is happening is not wheelchair accessible,” was the full text of their email.

Rather abrupt, for an admission of potentially-illegal exclusion and discrimination, don’t you think?

On Tuesday and into Wednesday, after some persuading by friends, I organised a letter protesting the inaccessibility of the lecture to wheelchair users. 66 academics and activists, disabled and non-disabled people, co-signed it.

screenshot-2017-02-10-12-26-44

Late on Wednesday, I sent the letter to UCL, and asked if people would email the university themselves. They were sent on from one email address to the next, with no clarity as to who was responsible for the situation.

On Thursday, a colleague offered to alert Judith Butler herself to the access situation at the lecture. This was a matter of hours before her lecture. She was appalled, and offered to meet with disabled signatories of the letter later in the week. She said she spent part of an afternoon reading the Equality Act. She raised the issue with the department that had invited her to speak.

On Thursday, finally, apologies (of a sort) started coming through to some supporters. We had no choice, the university representative said. We moved the venue from an accessible one when we realised we needed a bigger venue. Our largest venue is currently not wheelchair-accessible, for health and safety reasons. 

UCL refused to move the venue.

At this point, I received a brief not our fault email from the department hosting the event. They pitted disabled people with different needs against each other: a blind person was coming, they said, suggesting that this somehow made the venue acceptable. (There was no logic to this statement, just an attempt to make me feel bad for protesting, I think.)

I was then informally told (via UCL’s twitter account) that it was all OK because I could watch the lecture online via a live stream. At home, alone.

I suggested a boycott by non-disabled people who were able to attend. After all, I said, if a live stream at home is good enough for disabled people, maybe we should show UCL that it’s good enough for everyone, and fail to turn up en masse!

The only people who took me up on the boycott challenge were a group of other disabled people and their friends. (Thank you to them!) As far as I know, no one else boycotted the event. This is worth thinking about. Non-disabled people, you were willing to email, but not to boycott. We were reduced to watching the event on the internet. Next time, would you consider putting your values into action, in solidarity with us?

On Thursday evening, Judith Butler opened her lecture by acknowledging publicly that the event was not accessible to some disabled people, and was in contravention of the Equality Act 2010.

In an informal twitter contact with me on Thursday, despite not apologising, UCL did manage to ask if I would like to help them to make their events more accessible. They did not say whether they would pay me for this. Usually, this is a voluntary thing. I’m a professional equality trainer, but like many disabled people, I’m often asked for my expertise and labour to ‘help’ institutions discriminate less, without pay.

It’s the final slap in the face that often follows this kind of experience.

Meeting Judith Butler

On Friday, a group of us met with Judith Butler.

The irony of all this is, of course, that Judith Butler writes about bodies. In her book ‘Bodies That Matter’ she talks about “the norm in bodily function” that society promotes, and what happens to those who cannot achieve that norm. In fact, those norms are dependent, she suggests, on those of us who don’t meet them. As we are subjugated (brought under domination), others become powerful – become the hegemony.[1] Disabled people need access to this kind of thinking, this kind of theory.

Unlike UCL, Professor Butler was gracious and supportive throughout these events, and publicly resisted exclusion and disablism. 

It was problematic that she asked us to meet just days after the situation emerged (though this was because she was only in London for a short time). Many disabled people find it exceptionally difficult to do things at short notice, because of social barriers. And there was no time for me to spread the word about the meeting very far. But a group of us managed to get there.

We’re going to blog elsewhere about what happened at that meeting. But for now, a few key things.

Prof Butler committed not to speak at an inaccessible venue again. She will now always ask what the access situation is before she speaks at any institution, she said.

We spoke about our experiences of academic (dis)ableism, and the culture of normalcy that pervades higher education. Prof Butler was keen to learn about this, and very angry on our behalf. “It’s clear you’ve developed an ironic sense of humour to deal with this, but everything you’ve told me about is appalling,” she said. We all spoke from weary, defeated experience, as we discussed how we are oppressed, trapped and abused by the academic system, and by the rest of society beyond that.

I think Prof Butler left us with two messages: that networking is important, and that non-disabled allies need to stand with us. We’re limited in the first by being very busy – being disabled, and fighting disablism and barriers, are full-time jobs in themselves, on top of our other work. But we’re working on expanding our current networks: watch this space, disabled academics and students. As for the second: it was positive that non-disabled people wanted to support us this time. This was probably because of who Judith Butler is. I don’t for a minute believe that all those non-disabled colleagues will find time to support disabled academics and students with every other access battle we face. That’s never been our experience. (Remember: they wouldn’t boycott.) But maybe a few of them have had their consciousness raised, and will remember.

Perhaps feminism could start by working on being truly intersectional and not ignoring disability any longer. @trialia on twitter was talking today about yet another interesting article on intersectionality in feminism, that completely fails to mention disability. (Ironic, since it also uses a picture with a token wheelchair user in it.) This is very common for disabled people. We are used to being the ‘etc’ in every list of diversity issues (as Mike Oliver puts it). We have been at serious risk in the UK for at least ten years. The UN has accused the UK of grave disability rights violations. Disabled people are dying every day because of government policy. But we are still rarely talked about or offered solidarity by/in feminism. But, as we discussed at this meeting, non-disabled allies have a responsibility to do something about that.

I can’t speak for the others at the meeting – but for me, it was extremely helpful to be listened to. No one in academia ever actually listens to the experiences of disabled people. If they did, they would create change. Instead, they mostly pretend to listen, politely, and go back to being part of oppressive systems. It was very encouraging to have a senior academic listen, want to learn, be appalled by the situation, and commit to taking action.

There were voices on twitter yesterday arguing that Prof Butler should not have spoken at UCL last week. Do they have a point? Maybe. At the same time, she was in a difficult position, with a matter of hours between finding out about the issue and the beginning of the lecture, and with the inviting department telling her that they had not known about the inaccessibility. She has committed not to speak in a venue again without confirmation that it is accessible. She’ll find this a complex thing, of course, as accessibility is important for people with many kinds of impairment, not just for wheelchair users. But I’ve never heard a prominent non-disabled academic make this commitment before. If all non-disabled academics refused to speak in venues that exclude disabled people, institutions like UCL would not be able to repeat this unacceptable, illegal situation.

One of the people at the meeting wrote this set of reflections on structures of disability discrimination in higher education. It’s an important read. She calls on allies working in HE to support us, in very practical ways, in making change. And to prevent exclusion like this from happening again.

Battles for Access, Exclusion from Knowledge

I spent a week doing almost nothing but organising this single fight for access to theory and knowledge.

Now imagine: disabled people face these kinds of battles every day. This is the kind of work we have to do to be included in society. Labour, when we are already disabled and many of us are very tired – including emotional labour (although it’s also often physical for us, and damaging to our bodies!)

And most of the time, these access battles fail. It was very responsible and considerate of Judith Butler to meet with us. It was a good experience to have hundreds of people support the campaign. But the lecture remained inaccessible, and UCL have taken very little responsibility for their potentially-illegal discrimination against wheelchair users.

Theory and knowledge must be accessible to all.

It’s 2017. How is it that wheelchair users still can’t get into lecture halls to hear the same interesting speakers that everyone else has access to?

#MakeTheoryAccessible #AccessToKnowledge

P.S. Finally, An Apology

I came home from the discussion with Judith Butler to find an email, finally, from UCL’s ‘Senior Management Team Disability Champion,’ apologising. I’ve shared that email here. It is the same claim repeated: that they had to move the event to an inaccessible venue because it was popular.

UCL’s excuses do not stand. They did not have to release more tickets – they chose to. They could have done many other things to accommodate disabled ticket-holders, when they realised the problem. They have a responsibility, when holding a public lecture, to make reasonable adjustments for disabled people. And ‘health and safety’ is rarely considered an excuse to get out of equality law. UCL have acknowledged none of this.

It’s not good enough, UCL. Until you commit to never doing this again, I’m not interested in your excuses. And, I suspect, neither are the many disabled students you exclude every day, whose struggles I’ve been hearing about this week.

[1] How does that materialization of the norm in bodily formation produce a domain of abjected bodies, a field of deformation, which in failing to qualify as the fully human, fortifies those regulatory norms? What challenge does that excluded and abjected realm produce to a symbolic hegemony that might force a radical rearticulation of what qualifies as bodies that matter, ways of living that count as “life,” lives worth protecting, lives worth saving, lives worth grieving?

-Judith Butler (Bodies That Matter, 1997, 15)