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Thanks for sharing this Harvey.
I think it's a elephant in the room for DPOs, and something that needs much more discussion, in order to ensure there is both the authentic voice of disabled people controlling our organisations, and the skills needed for effective governance of them. There is of course also a role for non disabled allies who support the struggle against disablism to be part of this, but not in a majority.
While I want for my colleagues on my DPO board to be 'out, loud and proud' about their impairments and experience of disablism, I also want us to collectively make effective decisions about running the organisation. Sometimes this happens, sometimes not. As the point Larry makes repeated, disclosure and ownership of impairment is not a straightforward thing and so you never can be completely unified because sometimes disability is relevant, sometimes not.
One way of getting round it is to ensure when you recruit to a board, people have to disclose but that this will be treated sensitively and with respect. Then as part of the board practise their has to be some leadership and positive culture of disability on the board, so it becomes OK to be 'out, loud and proud'. Equally, those non disabled people involved in the organisation need to have some leadership and positive culture so that the understand their roles as allies and face the struggle together with us. After all disabled people and their allies both want inclusion, period!
How you do the leadership and positive culture will vary from place to place, but whats crucial to this is to know what the common ground within the group is, and then as you grow long in the tooth together, be sure to remember what that is. So if you fall out, you will know what connects you. If you have nothing in common, you are unfortunately in the wrong group, I think. That's not to say you shouldn't embrace your differences, indeed through diversity is strength, but unless you know what binds you, you cant know how to overcome what it is you face.
Would be keen to discuss more, on or off list.
Stephen
-----Original Message-----
From: The Disability-Research Discussion List [mailto:[log in to unmask]] On Behalf Of Harvey Cowe
Sent: 23 February 2010 19:05
To: [log in to unmask]
Subject: User led organisations of disabled people and people with hidden impairments
Dear All,
I am a trustee of my local user led organisation of disabled people and have
become increasingly aware of how most of the decisions are being made by the
chief officer, who is nondisabled and other waged members of staff who I
assumed were also nondisabled. When I mentioned the fact that as a user led
organisation, the trustees, all of whom have visible impairments, should be
making decisions and not following decisions made by non-disabled people, I
have been accused of failing in my duty as an employer, making assumptions,
being a hypocrite, an angry man, trouble-maker and a barrage of other
personal insults.
They are right, I have made assumptions about who is and is not disabled
within the organisation, but what else can I do if the people choose to hide
their impairments.
I understand that a person does not have to disclose impairment to employers
and I can totally understand why someone would hide their impairment from
the general public -in order to avoid being subjected to prejudice and
discrimination. I can also understand that a person might deny their
impairment to themselves as a way of defence mechanism, "I'm not one of
them" kind of thing. But I find it difficult to understand why someone
would want to hide their impairment from other disabled people within an
organisation of disabled people.
I thought that peer support was one of the reasons we had organisations of
disabled people, to help negate the emotional effects of disablism, to help
take away the shame etc. More importantly, how does this logic pan out
when a user-led organisation stipulates that a certain percentage of the
board have to be disabled? If a person does not have to disclose whether or
not they are a disabled person or have impairments then how would they know
how many disabled people are on the board? This means that such
organisations can only be sure by taking on people whose obvious impairments
can be displayed rather than disabled people with hidden impairments
otherwise people looking from outside might begin to make assumptions.
I would be interested in any other people's thoughts on the issue.
Thank you,
Harvey Cowe
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