Nothing About Us Without Us – some are more equal than others.

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I recently had a correspondence that meant something to me. I asked the other side if they would mind me sharing it here and they were fine with it.  I present it with no edits or further opinion. I sent the following email to James Charlton, who wrote the iconic Nothing About Us Without Us: Disability Oppression and Empowerment, which popularised the slogan within the disability activism.

Sorry for the unsolicited email.   I wanted to ask you something about your book.  “Nothing About Us Without Us: Disability Oppression and Empowerment”.

My little brother has severe cognitive difficulties. We give him all the choices we can about life, circumstances and daily planning, but we know he will never be independent, never speak, and would never in a million years be able to represent the views of people like him.

Recently I’ve seen a lot of the ‘Nothing About us without Us’ slogan used.  I was at a disability meeting declared that they only be accepting officers that were themselves disabled.  There has just been quite a lot of controversy in the UK because an equality watchdog has appointed two non-disabled people to its disability committee for the first time. ( for your interest)

This terrifies me.  I fear that when all the disability services are run by people who are physically disabled then people like my little brother are going to get it in the neck.  I worry that when I stand up to defend him against cuts and injustice, nobody will stand with me because I “don’t have a right”

Is this what you meant when you wrote the book? I’m just looking for some reassurance.

James very kindly took the time to reply.

Thank you for your email comments–
I believe it is wrong to interpret `nothing about us without us’ from the point of view of only disabled persons w physical disabilities– it must include `all of us’ even though all of us are different; I think this illuminates the big paradox within the politics that the slogan promotes — self-determination, voice, democracy etc and asks `how can/ do oppressed people speak [and get heard]’?  obviously `we’ need everyone we can find to be `inside’ a social movement that promotes these cardinal principles [of which I would argue you are one — on the inside]; its not an obvious inside/ outside of course. There will always be doctrinaire advocates who claim exclusive insider status [I do not agree] but you should persevere.
Also, I do believe most people w cognitive disabilities can `voice’ their needs/ their demands/ their questions although the way that `voice’ is presented may be both more difficult and more unique.
So it goes. No easy answers

Might be useful for some of you…


One thought on “Nothing About Us Without Us – some are more equal than others.

  1. I believe that having a voice – possibly even the final vote – is important. However, and that’s the biggie, all of us have to live in the same world. You don’t magically get to go live on ‘Disability World’ when something happens to you, or you grow up knowing you have limitations.

    So there have to be representatives of the healthy (healthier?) people who will have to contribute to the solutions disabled people of all disabilities will need – and there are many. To make sure ALL voices are heard. If ___ people could fix their problems all by themselves, there would be no discussion.

    I need my university to make it easier for me to get to the chapel (I sing in the choir on Sundays) – but if I had to undertake the needed accomodations myself, they would never happen, and demanding them – or even suggesting them – hasn’t been enough. I am part of the problem as well as part of the solution. I am all of neither.

    If your brother has trouble communicating, why shouldn’t you be able to help him – unless you are substituting your convenience for his needs?

    None of this is going to ever be ‘solved’ permanently – it’s just necessary not to let the pendulum swing too far in either direction (and ‘too far’ itself will always be subject to interpretation).

    Two steps forward, one back is both progress – and dancing.

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