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.

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.