I’ve been thinking a lot recently about my first experiences of “becoming disabled” (those words are in quotation marks to reflect the fact that although the genetic, physical, psycho-social causes of my impairments have been with me since before I was born, the social “becoming” part was triggered and shaped at various points, predominantly in my teens, and is strongly related to moments of diagnosis. and interaction with medical/educational/psychological/psychiatric and disability-specific employment services.)
I’ve been thinking about this, and how it has been connected with my positioning myself as “disabled” politically, and in terms of advocacy/activism – and some of the things I’ve done as a result of this (NGO research jobs, advocacy/volunteering, event organizing, training and awareness-raising, “support” groups, protests, petitions, angry letters, social media activism).
I don’t really know why I headed in this direction when other disabled people don’t identify in this way, and don’t take this route (I’m not criticizing others who think/act differently in relation to their identities – they’re as entitled to shape and define themselves as I am – I hate it when people criticize how I position myself, and there are other areas of my life that I choose not to politicize because they’re too painful, or because they’re not only my story to tell, so I’m not about to start criticizing others.) I suppose for me though, my way of seeing/doing/being is influenced by the ways in which others fought for me as a child/teenager, as well as having a strong and interesting political and Christian family background (although reconciling my disability politics with my other politics isn’t always easy – others have written on intersectionality and leftwing activism, and they make some good points about ableism in these physical spaces and discourses.)
One of the things I’ve been thinking about though, is how easy it is for us to be influenced (and limited) by the very things (arguments, systems, policies) we’re fighting against.
I’ve spent a large proportion of my life being concerned with disability rights, mostly as the only disabled-identifying person surrounded by allies who care about rights but are not themselves disabled. The thing is though, that in my experience, when we actually have that disabled identity, we generally also have battle scars and war stories about how we’ve had to fight for our own rights (or had others do that for/with us). And in those situations, we tend to hear and be exposed to a lot of arguments about why (seemingly very well-meaning) people just can’t “meet our needs” or “enforce our rights” – Why it might not be fair, but what can we expect? That’s just how it is.
A few of the things I’ve experienced/heard/internalised in relation to myself are:
- “She can’t do that course, she wouldn’t be up to it”
- “She can’t have the equipment she needs – You’re just asking because it’s trendy”
- “Need evidence … need to prove your case”
- “She can’t have support, there’s no budget”
- “She’ll pass anyway, can’t expect support just to get higher grades”
- “Too old for support, but we can possibly bend the rules if we’re lucky”
- “Not sure if we can accommodate you here”
- “You have to meet us halfway – be realistic”
- “It’s like that for everyone. You’ll be fine if you keep trying”
- “She’ll grow out of it”
- “You won’t get this amount of help in sixth form/university/ the “real world”
- “You had adjustments when you took your exams. Your qualifications don’t count the same.”
- “Disability law is different from other discrimination law because disabled people need reasonable adjustments.”
- “It’s a shame you can’t access the event where you’ve been invited to give a talk about your work in disability, but unfortunately this is the room that has been booked.” (a local authority)
- “If the conference is too much for you, don’t come.” (a line manager)
- “We want you on this committee but can’t change the meeting format to meet your individual needs” (a disability organization).
- “…medical report to set out what we have to do to meet our basic legal obligations” (a disability charity employer)
- “That’s because you have autism”
- “I can’t do a PhD. Autistic people can’t do PhDs”
- “I can’t have relationships, I’ll never get married. Autistic people can’t/don’t do that.”
- “Yes, community support might keep people out of hospital, but if they go into hospital they’re funded by the NHS, which saves our local authority funding” (a local authority service manager)
- “People with chronic anxiety don’t belong in teaching jobs”
- “Students’ needs come first”
- “You need to provide medical evidence of your fitness to teach”
- “Can’t expect everyone to care about something so niche. What’s the universal appeal?” (a university)
- “You won’t be taken seriously if you act like a single-issue lobbyist.”
- “Policy is more than just activism”
(N.B. I know these are little things, they’re the ones I feel comfortable disclosing here. I have limits. But also, I’m not trying to play Oppression Olympics or Tyranny Top Trumps – these little experiences drive me to care about the big experiences. It’s not a competition.)
And I think this is something tough to fight against if our hopes and dreams for disability politics are centred on a vision of liberation and equality that takes into account (and, dare I say it, celebrates) our differences – while not using them as an excuse for our oppression. If we’re not careful, we end up actually believing that we’re “lesser” – that people are well-meaning, but society is just organized as it is, and we can’t possibly expect it to change just for us. We can end up arguing from a really weak, instrumentalised position for “better services” and “therapy” – and limiting what we “ask for” because deep down we know that we’re not proper people and we’re just not worth it. Too difficult. Too expensive.
Internalised ableism is something we need to be aware of if we’re acting politically as disabled people. In my opinion, it should NEVER stop us from campaigning, protesting, organizing and telling our stories in whatever ways are available and safe for us (we don’t need to wait to be “fixed” and liberated from our internalized oppression before we try to fight it) but we need to be aware of it, and see it for what it is. When things are done to us, and said to us, and done and said about us, this has an effect. It becomes part of us – it’s bound to. But if we want to work politically I think we can be aware of it without caving in – in the same way that we’re aware of, and respond to physical pain as a symptom – and maybe work WITH it for change.
There will be compromises. We won’t always get what we want. And we won’t be universally agreed with (if everyone agreed, there’d probably be no need for the social change we believe in). But if we begin by framing our activism from a position of compromise we’ve lost before we begin (I’m looking at national disability charities here.)
If we aim for the stars, we might just make it to the moon.
- I still feel I’m not a proper person (certainly not a proper woman).
- I still feel like I’m just an individual failure who shouldn’t expect the world to change just for her.
- I still feel like I don’t belong, and that I shouldn’t expect to.
- I still feel like a fraud.
- I still think/feel/know deep down that there are things I’ll never be able to do.
- I still worry in case my politics are part of a delusional pathology – or an excuse for my own personal failings.
- I still worry about costing money if I need adjustments, or when I need to access medical services because of my disabilities.
- I know that I challenge institutional and societal expectations, and sometimes put others in difficult positions because of this.
- I still feel like a problem.
Those feelings, that I guess many of us share, don’t go away. No amount of personal therapy is going to fix an unjust world.
But they should never be allowed to dictate and control our activism and our advocacy.
I can’t pretend to have all the answers. I don’t know what we’re heading for.
I just can’t imagine not feeling on some level “less than” – but I don’t think I have to. I don’t think I have to have the “bigger picture” – in fact, I think the expectation of having all the answers is another thing that’s used to keep us quiet (I don’t think those who control the systems against which we struggle have all the answers – they just have power, by which here I mean less of a requirement to account for, and explain themselves.)
It’s one battle at a time, one day at a time. Not having all the answers isn’t going to make me stay quiet.
“If you don’t ask, you don’t get” and, not that I think I should have to “ask” to be equal, I’m going to keep on keeping on even if I don’t really, fully believe that I deserve it – because it’s precisely that feeling of not deserving that I want to stop others like me feeling in the future.
Funny really – it’s totally about me, and it’s not about me at all!