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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Author: Naomi Jacobs

Disabled PhD researcher, theorist and equality activist. Researching for a PhD in disability studies at SOAS, University of London.

7 thoughts on “Listen to Our Experience: On Epistemic Invalidation”

  1. So much of this is so familiar. And don’t get me started on being lectured about needing to work around my impairments, especially when it comes from people whose jobs wouldn’t strain me like mine does.

    Liked by 1 person

  2. I can relate to so much of this. For starters if one more person suggests that avocados or yoga will cure me, they are going to feel my wrath. I have to bring videotaped proof to doctors or they pat me on the head and tell me I’m fine (because I look fine). Or the Neurologist who wanted to hug me and tell me I “Look like a rose.” Creep.

    Liked by 1 person

  3. Aaaaaaaaaahhhhhhggg!!! I’ve just come home from a festival. If I had a £ for every time someone asked if they could have a ride on my scooter/everyone should have a scooter/ I want one of them (to which my stock answer is Why? Don’t your legs work, either?) I’d be rich. One person said they were going to get a Blue Badge so they could have a scooter. Like I have a choice. Makes me so angry.
    The other thing is when people tell me that they get tired, too, and that their legs hurt a bit. They have no idea.
    Or, What’s wrong with you? Or Get better, soon, like I’ve just broken my leg.
    Or, when people see me coming and step in front of my scooter. (Hint; I will run you over).

    Liked by 1 person

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