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.

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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)

Disability Theory Belongs to Disabled People

A note: this post is long, and I’ll break it up later. But it all needs to be said now, before I start this blog. Feel free to skip to the parts you’re interested in (see titles). This post is archived as a ‘page’, in the menu above.

So here we are. The post-Brexit, post-Trump, austerity society. Welcome to the future we never saw coming…

This is a deeply dangerous time for disabled people. Social care is being taken away from us, on a massive scale – the social care that used to allow us to work, or raise a family, or simply get out of bed. Benefits that we fought for, for years, are being cut – many of us losing our tiny, basic lifelines. The NHS is slowly being unfunded, meaning that disabled people (who often live in poverty) are increasingly being asked to meet the costs of our own health needs. If we can work, we are finding that Access to Work will no longer help us meet the extra costs we face in a disablist workplace. Hate crime is rising, leaving some of us scared to leave our homes. And disability discrimination legislation is still as toothless and useless as ever. Disabled people are among the poorest people in every society, including in the UK. The less of a welfare state we have, the worse our situation will become.1

We are seeing our opportunities shrinking. Many of us are facing deeply uncertain futures. And I mean uncertain on the level of ‘Will we ever be able to work again and even leave our houses again?’

And most non-disabled people have no idea that any of this is happening.

Doing Something with my Privilege

I’m disabled. (I have a chronic illness that leads to mobility difficulties, I’m neurodivergent, and I experience mental distress.) But I’m a very privileged disabled person. I don’t have to work full-time and I can pursue a PhD that’s only partly funded. Which means I’ve had the incredible privilege and luxury, for the past few years, of being able to learn about disability studies and social theory.

I want to share some of this theory with the disabled community, and with any other marginalised people who might find it interesting and useful.

Why Theory?

Because theory is powerful. When we understand why something might be happening, and how it might be operating, we can sometimes do more about it.

Because disability theory belongs to disabled people.

Disability theory in the UK began with some disabled people people living in a care home, and the user-led group they formed that created the social model of disability. (I’ll write more about that history another time.)

In 2017, I see disability theory mostly being shaped by non-disabled people.

One example is the field I do my research in (disability and religion). There, I see a ridiculous number of non-disabled people telling disabled people of faith what to think about their own experiences. That’s an extreme example, but it happens everywhere. I find that incredible.

In disability theory today, there’s a growing gulf between the experiences of disabled people, and the writing of people who make a living from theorising those experiences. There are a few possible reasons for that – I’ll talk about those another time.

But I believe that disability theory belongs to disabled people. And I want to do my small part in making it more accessible to them. That’s what this blog is going to be about.

Will this be a big contribution to our struggle? Not really. Many are taking to the streets, or doing very practical things, and I am in awe of them. Look up Sisters of Frida or DPAC to find people making change on a big level. I’m doing what I can on a practical level. But, like many disabled people, I can’t do much traditional activism.

But it’s easy to forget that there are other ways to help bring about change. Social theory and disability theory have changed my life. You might find nuggets here that are significant for you too. Or you might just find parts of this stuff interesting. I hope it’s useful to you in some way.

Because Our Experience is Powerful: Situated Knowledge

I’m tired of my life and everything I’ve learnt and experienced being dismissed, by the powerful, as ‘identity politics’. Belittled as being relevant only to me.

So here’s the first bit of theory for this blog:

The ‘insider’ perspective of disabled people (and other oppressed groups) is important. It’s what feminist theorist Harding calls ‘situated knowledge’.2 Disabled people have a ‘standpoint,’ a position that arises from our experience of oppression. If anything is going to change for marginalised people in society, our situated knowledge is incredibly important. Our voices matter – and not just to us.

The idea that there is unbiased ‘objective’ knowledge is rubbish. What usually passes for ‘objectivity’ is the perspective of the hegemony – the people who run society. Who are overwhelmingly white, male, straight, cis-gendered — and non-disabled.

The disability rights struggle is not just ‘identity politics’. It is the fight to change society for the better – for all of us, but with a focus on the needs of the large group of people who can be considered disabled (up to 20% of society according to some estimates). Our experience, our situated knowledge, matters. And it’s ours.

How To Use This Blog

Who Is This Blog For?

This blog is aimed at disabled people and other marginalised people from oppressed groups FIRST. I hope that other people will feel welcome to read too. I hope the ideas here help them to be better allies. But I’m not going to modify my writing to make it more palatable for any readers with privilege. (I will also be putting up a Hospitality Code, making it clear that abusive comments will be deleted, and that I get to decide what I find abusive.)

Some of What I Hope to Write About Here

Some of the ideas I’ll write about here will come from ‘published’ academic theory. Some will come out of activism and from the community. Some of the what I want to talk about:

  • More on situated knowledge, and why our first-hand disability perspective is important.
  • What even is disability, and who can benefit from disability theory? Who is ‘disabled’? Do you have to call yourself ‘disabled’ to be part of the disability rights-focused community? (Hint: I won’t be saying that disability is all about wheelchairs. I will be saying that people who use wheelchairs matter too.)
  • What is an ally? How can you be a good ally?
  • Identity politics and why they are a good thing. Where the concept came from. Why I believe we need this, if any social change is going to be real change, rather than simply continuing to benefit more people with privilege.
  • Talking of which… What is privilege and how is the idea useful?

Principles

  1. I want this blog to be about real, useful things. I’m also not sure what that will look like yet.
  2. I want this blog to be as accessible as possible. That might be tricky at times, when concepts get complicated – but I’m going to try. Please keep me accountable. If I use jargon where I haven’t explained or linked to an explanation, I will try to fix.
  3. I want this blog to be useful to lots of people’s situations. I want to highlight intersectionality – the idea that we are all many things. We might be black disabled people, Muslim disabled people, disabled women, or trans disabled people…
  4. Disability can mean many things. You might be someone who doesn’t define as disabled, but still faces disability oppression in society. (Maybe you have mental health problems, or are neurodivergent, or have chronic illnesses, for example.) Disability theory can also be relevant to people who aren’t sure if they fit the disability category, or who choose not to define as disabled.
  5. I would love guest posts, from anyone with something relevant to say from their perspective as an oppressed person working from a place of situated knowledge. Do shout at me if you’re interested!
  6. I can’t promise this experiment will work. I am a terrible blogger – I can’t keep a schedule. But I’m going to try.

Hedgehogs and Bonfires

Some friends and I have this phrase. “Check for hedgehogs before burning down the patriarchy.” My friend even made an image that goes with it:

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Image: bonfire with hedgehog inset. Caption: “Please check your bonfires for sleeping hedgehogs before lighting burning down the patriarchy. Credit: Ferdiad McGowan.

In a post-Brexit, post-Trump world, here are two of the worrying things that I’m observing happening for disabled people, at the hands of radicals:

1. Little acknowledgment, if any, that disabled people are at serious risk and facing major oppression in our societies. Disablism is a tricky thing: almost no one recognises it as oppression. Even many activists take a paternalistic approach to us, rather than seeing us as fellow oppressed people. Lists of those at risk under Trump almost never include us. We’re often excluded even from protests. I want to see disabled people’s issues being understood as women’s issues, as people of colour’s issues, as everyone’s issues.

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Image: tweet by Emily Ladau, with picture of a wheelchair symbol modified to include a ‘woman’ symbol, with text “Disability rights are women’s rights are human rights.”

2. A narrative that says that there will always be casualties in a revolution (major change in the way society works). Nonsense. Disabled people are not your ‘acceptable casualties’. We are not your canaries in the coal mine. We matter.

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Image: Two people, one seated in a wheelchair, both holding signs that say “The revolution is wheelchair accessible.” Photo by Stephy Hamrick.

We can check for hedgehogs before burning down the patriarchy. The revolution can be wheelchair-accessible.

We can arm ourselves with different ways to understand what’s happening to us, in this confusing, complex, overwhelming world. That understanding can be a weapon in the fight for change.

See you in the accessible trenches, friends.

.

[1] These examples are from British society. You could substitute many facts from American society, other European societies, lots of places in the minority world (what we used to call the ‘first world’). In the majority world (what we used to call the ‘third world’, where the majority of people live), the social situation for disabled people is often even more difficult.

[2] Foucault talked about ‘subjugated [oppressed] knowledge’ in a similar way.