I forwarded Clare's email to Jane Campbell and she responded with this
attachment which is her speech in the House of Lords Debate on user-led
organisations, where she refers to the origins of the phrase.
-----Original Message-----
From: The Disability-Research Discussion List
[mailto:[log in to unmask]] On Behalf Of Deborah Chinn
Sent: 29 June 2011 12:09
To: [log in to unmask]
Subject: Re: A request for source of phrase
I find it more than mildly disturbing that Andrew Lansley, our health
minister, has re-invented the phrase as "nothing about me without me"
thus removing any implication that there is a requirement to involve
disabled people as a collective force, rather than just emphasising
individual "choice". He claims to be quoting the phrase used by
disabled activists, ignoring the fact he has perverted it.
On a personal note - I've worked in learning disability services for
20 years now (gawd!) and have not seen any real cultural shift towards
really focusing on what learning disabled people want in their lives in
most services, though there are examples of really good practice which
shine out. I fear that further deregulation and the expansion of the
private sector in care provision will only further sideline the
aspirations and preferences of learning disabled service users.
Deborah
----Original Message----
From: [log in to unmask]
Date: Jun 29, 2011 11:39
To: <[log in to unmask]>
Subject: A request for source of phrase
I had always understood the phrase "nothing about us without us" was a
long-held maxim of the disability movement from early days, although I
realise now I had never noted the source. When I attended a local NHS
day with presentations from the CEO of the Primary Care Trust, he used
in his Powerpoint the phrase "No decisions about us without us" and
claimed it came from Learning Disability Services in the 80s. I wonder
if someone can clarify where the original phrase comes from and if the
latter phrase was also documented from LD Services, or there has been a
distortion, as often, of those in power appropriating our language &
philosophy. Once I have more evidence I can challenge his statement if
necessary. Many thanks.
Regards
Clare
Clare Evans MBE
Disability Equality and Social Care Consultant
Email: [log in to unmask]
Tel: 01249 815170
Mobile: 07866 451737
For further information go to www.clareevans.org.uk
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