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)