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:

img_0156
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.

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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.

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