Listen to Our Experience: On Epistemic Invalidation

[Content warning: Discussion of the ways disabled people’s experiences are invalidated and disbelieved in society. References to pain ignored by doctors. Brief description of a fictional person with suicidal ideation.]

Disabled readers. (And those with chronic illnesses, learning difficulties, and neurodivergences of all kinds.) Have you ever experienced any of the following?

  • Having your experience of disability or chronic illness dismissed or ignored.
  • Being treated like a child, or like you don’t/can’t know your own mind about something.
  • Having your experience minimised – being told it’s ‘not really that bad’, or being told that something ‘happens to everyone’ when you explain a symptom of your impairment (“everyone has trouble communicating now and then!”)
  • Being told that something that you know happened to you, didn’t happen, or that it didn’t happen in the way you remember it. This is sometimes called gaslighting. It can be subtle, as well direct.
  • Being told you don’t look disabled/that you don’t seem neurodivergent/that you’re so much easier to ‘handle’ than other people with mental health problems… (“Not that I’m prejudiced of course but there’s this woman at work who just keeps talking about her condition – I think she does it for attention…”)
  • Being repeatedly talked over, interrupted, encouraged not to speak, or otherwise actively not listened to. (Sometimes a whole environment or institution can encourage you not to speak, through the way it works.) This is silencing.
  • Being told that something isn’t good for you and that you should avoid it, when it is something that you want to do. This could be infantalisation.
  • Having inappropriate medical treatments regularly recommended, whether by lay people (“have you tried aloe vera?”), or by medical professionals who don’t take your opinion/experience into consideration.
  • Being denied medical treatment that you need, or which would make your life much easier, because your experience of pain or illness is not believed.

All of these could be considered epistemic invalidation.

Silencing. Ignoring. Dismissing. Minimising. Gaslighting. Infantalising. And many more things that I haven’t covered above.

Epistemic invalidation is anything that invalidates your experience as a disabled person. Your first-hand, lived experience of disability/long-term illness/neurodiversity. Experience that you know is true, but that sometimes you can’t get others to believe is true.

This is one of those social justice theory things that has a complicated name, but is actually pretty simple. And, like most disability theory, it can be really useful for us to know about.

Epistemic Invalidation: The Theory

Susan Wendell was the first person to talk about the invalidation of disabled people’s thoughts, feelings and experiences, and how this affects us. She was particularly talking about medical settings, and how our experiences are dismissed and invalidated there. But the idea is relevant to lots of other settings. She says that the medicine “has a tendency to ignore, minimise the importance of, or deny outright any of my bodily experiences that it cannot explain” (1996:122).

Wendell gives a distressing example: people with MS were once told that they could not possibly be experiencing pain in their bones, muscles and skin, because medicine had not discovered what might cause this pain. Years later, medical trials confirmed that this pain was real, and finally people got treatment for it – after years of being disbelieved. (To read more about this, see Deborah Marks’ exploration of Wendell’s ideas.)

Many of us disabled people who use medical services — and many other marginalised people too — can tell stories of times that medicine has dismissed our experience, our first-hand knowledge, our lived experience. For some disabled people, this has been a direct cause of their deaths. For others it has repeatedly put their life in danger. (It is possible to be grateful for life-saving and health-improving treatment and the people who provide it, and for this still to be true.)

But medicine is not the only institution that invalidates our first-hand knowledge of ourselves and our lives. We get this from lots of people, throughout our daily lives.

Examples based on real people

As examples of epistemic invalidation, let’s look at five fictional people. They are all partly based on people who I know personally/have met, who have told me about how their experiences have been invalidated and undermined.*

1. Jane is an adult with significant learning difficulties (sometimes called intellectual disability). When Jane falls in love with Rob, who also has learning difficulties, they are denied the right to have a relationship, because how could they possibly even know what a relationship is, and they definitely shouldn’t be having sex, and oh goodness what if they reproduce — they couldn’t possibly care for children!** Jane has been given the message all her life that she couldn’t possibly know what she needs, or even what she wants, because of her learning difficulties. Here, the source of the epistemic invalidation might involve social workers, care workers, and non-professionals such as parents and other family.

2. Elle is autistic. Elle is also trans — she was ‘assigned male at birth’, but she knows she is a woman. She can’t get a referral to a gender clinic, which means she cannot start transitioning. This is because her doctor is concerned that, as an autistic person, she may not fully understand what she is agreeing to. But Elle says that she knows her own mind and body, and knows what she wants. Facing the possible prospect of life without the option of transitioning, Elle starts to feel suicidal. Here, the epistemic invalidation takes place in the medical system.

3. Lou finds it easier to communicate on the internet than in person, as a result of their mental health problems. As an activist for disability rights and mental health awareness, they often express anger online about the social oppression of these people. It is not unusual for them to receive messages from well-meaning friends who say they are worried about Lou, and suggesting that Lou should take more breaks from activism. One day, Lou tells their counsellor about some anxiety that they are experiencing . Their counsellor says they shouldn’t be doing things that make them anxious, which (the counsellor believes) includes Lou’s activism. Here, the epistemic invalidation comes from friends, as well as from professionals.

4. Pete has a chronic illness that affects his mobility, which first started to affect him a few years ago. When his mobility starts to cause him particular difficulties, he begins using a wheelchair. His friends express concern that this is a drastic step. They say that they worry that he will lose all his mobility if he doesn’t force himself to keep walking. Out in the world, Pete notices that strangers often stare at him when he stands up, e.g. to reach something on a high shelf in the supermarket. Some of these strangers have called Pete a ‘faker’. The epistemic invalidation that Pete faces comes from his friends, but also from wider society. (He goes on to meet it also from medical professionals and from the DWP.)

5. Toby is blind. People regularly grab him in the street to ‘help’ him get around, against his will. When he tells non-disabled people about this, they say things like “But I’m sure they’re only trying to help!” and “It surely doesn’t happen as often as you think it does” and “But people get nervous around blind people and don’t know what to do, and you can’t expect them to know how to act around you all the time.” This epistemic invalidation comes from friends and wider society.

All these people are experiencing epistemic invalidation. Their own knowledge, of themselves and their experiences, is being dismissed. Disregarded. Invalidated.

Why does this happen to disabled people?

Disabled people, as a group, have a history of being cared for by others. There are lots of historical reasons for this, which I could talk about all day. The charity model of disability is one explanation of how disabled people have, through history, been treated as tragic wasted lives, and in need of the charity of others. The phrase ‘rights not charity’ developed in the disabled people’s movement, in response to the charity model.

Today, we still get treated like tragic charity cases, who can’t possibly think for ourselves or look after ourselves. And that leads to a lot of invalidation of our experiences. We’re supposed to be grateful for what we get. We’re not supposed to think for ourselves. We’re supposed to leave that to the ‘experts’. We definitely aren’t supposed to identify the disablism or mistreatment or abuse that develops from the charity and care and ‘expertise’ that we get.

To society, our experiences are not our own, and our opinions don’t matter.

This history also means that other, related things happen to disabled people. Infantalisation of disabled people is one example. Disabled people are often treated like children, especially people with learning difficulties or neurodivergence (but it happens to other disabled people too). You can see a lot of infantalisation in the above examples. Jane and Rob may be being seen as children by their carers and family. Lou’s friends could be infantalising them. I’ve known people to talk to me in that high, fake voice that’s often inappropriately used for children, on multiple occasions. Another example of this is patting on the head, which some disabled people have said happens to them regularly.

(There’s so much more I could say about disability history and how it creates invalidation, but there isn’t space here. But if you’re interested, I could write another post about the role of the Christian church and the medical services, through the ages, in developing this charity, care and ‘expert-based’ approach to disabled people.)

Some ways this post itself might be invalidated…

Here’s a hint. If you are about to head to the comment box and start to do some invalidation… maybe don’t do that. Please don’t tell me how this all happens to non-disabled people too. Please don’t invalidate the people in the above examples. Maybe consider that you, too, might sometimes be engaging in epistemic invalidation. (And disabled people are quite capable of doing this to other disabled people.)

Example: I can predict right up front that there will be people who want to tell me that Jane and Rob’s social workers are only trying to protect them from abuse. Yes, that is certainly one issue that complicates the example above. But it doesn’t invalidate Jane and Rob’s experience.

I also predict that people will want to tell me that Lou’s friends are only trying to look after her because maybe she isn’t good at looking after herself. And that Pete’s friends are just trying to make sure his mobility doesn’t get ‘worse’. And there are probably people reading who think that Elle needs to be protected from having ‘unnecessary’ gender reassignment surgery that she might ‘regret’. (But seriously don’t get me started on that particular intersection, or I will just start throwing things. I have heard so much invalidation of disabled trans people that comes from misguided ideas of ‘protecting’ them from ‘unnecessary procedures’. Something not dissimilar happens in the debate about young trans people. Young people, too, face a lot of epistemic invalidation.)

We’ve already heard your ideas, because your voices are the ones that get heard

Here’s the thing. Disabled people have, almost certainly, already heard the invalidation you’re about to engage in. We know the invalidating ‘argument’ you’re going to produce. Yes, we have already thought about trying positive thinking/prayer/aloe vera to treat our conditions. Yes, we know about the consent issue. Yes, we know that sometimes non-disabled people feel uncomfortable around us. None of these ideas should be used to invalidate people’s experiences.

The fact that I can predict that someone will say these things — that the possibility makes me anxious enough to reconsider posting this at all — says buckets about how common invalidation of this kind is. It’s everywhere. It gets incredibly exhausting. Don’t do it.

How you can use this bit of theory

If you are someone who finds that your experience is invalidated a lot, you might find it interesting to read about epistemic invalidation of disabled people. There isn’t as much written about it as I wish there was… but I’ve put a short references list below.

Once you know that epistemic invalidation happens to a lot of disabled people, it can be very helpful. I know that this concept helps me to speak back to those who invalidate me. The theory has given me a kind of ‘permission’ to delete invalidating comments online, and to ignore people who say something is ‘not good’ for me. It even sometimes helps me respond to people who invalidate me in person.

I once sat through an unbelievable disablist rant from a senior colleague. Because she had all the power and I didn’t, I had to sit there and listen to her terrible prejudice towards disabled people, expressed through all kinds of slurs and nastiness. She invalidated every single thing I said in reply.

I wheeled away from this person’s office, appalled, but with my activist determination intact. I know what epistemic invalidation is, and I know not to let it destroy my confidence anymore.

It’s still hard, because I still see the comments coming and can’t stop them. They still hurt. But, together we rise. I learn to speak out, and to speak back, imagining that I do this with my wider community of disabled people.

We are worth more than invalidation. We deserve to be heard. Listen to us.

(I hope this post might be useful to point people towards as part of your ‘don’t do it’ message to people who invalidate your experience.)

– – – – – – – – – – – – – – – – – – – – –

*To ensure people can’t be identified, these accounts are anonymised and fictionalised. Multiple people have been combined into some examples, and I’ve changed details for others.

** I’m not even going to begin to get into eugenics and forced sterilisation right now, but you can probably see how that might follow from the example of Jane and Bob.

References

Marks, Deborah (2014). Disability: Controversial Debates and Psychosocial Perspectives. Hoboken: Taylor and Francis.

Wendell, Susan (1996) The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge.

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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!

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)

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.

screen-shot-2017-01-24-at-14-36-05
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.

img_0157
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.