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Early morning thoughts...
Debate often rages about representation of, by and for people with #learningdisabilities
Perhaps one thing to consider is a baseline "nothing about us without us" value
Debate often rages about representation of, by and for people with #learningdisabilities
Perhaps one thing to consider is a baseline "nothing about us without us" value
Many of us would recognise that we have insight, knowledge and relevant information to share, but as a person who does not have a #learningdisability I am not qualified to speak about how it feels, what the day-to-day experience is
My mum has Alzheimers and I am aware of the issues she faces, and I would feel I could speak with some confidence about the barriers she faces in remaining part of community life, in managing daily and the difficulties. But I do not know how it feels, merely how I think it feels
And that is an important distinction and I would need to qualify my input as being from that position - relevant, yes; well-informed, yes; but lacking the first-hand experience of living as an person with Alzheimer's
In #learningdisability world the chances to take part, speak up and represent are often taken up by people who do not have first-hand experience of learning disability.
That does not make them irrelevant. That does not mean their input is without value.
That does not make them irrelevant. That does not mean their input is without value.
However every space taken by someone without a #learningdisability is in danger of eclipsing the need to hear directly from people with first-hand experience, even if only partially.
If the models espoused by self advocacy organisations (nothing about us without us) were adopted by everyone "yes I can take part ALONGSIDE someone with a learning disability but never in place of" then some representation opportunities would be lost. I dont doubt that.
Why? Because it takes longer to support someone to understand, prep, attend. Oh and it has a cost too...supporters, travel, debrief.
But until we all push for those bits to be included then someone without a learning disability will always be the quicker, easier option
But until we all push for those bits to be included then someone without a learning disability will always be the quicker, easier option
Why does this matter?
Well because each time we speak up for rather than alongside, however well we do that as friends, allies, workers...whatever l, we risk contributing to the disempowerment and disenfranchisement of people with learning disabilities
Well because each time we speak up for rather than alongside, however well we do that as friends, allies, workers...whatever l, we risk contributing to the disempowerment and disenfranchisement of people with learning disabilities
If we could truly work together, with "voice" organisations using their power, influence and wealth to push the agenda by insisting on co-operative representation at all times, by supporting a network of self advocacy organisations who can share and respond to requests
(I dont mean by running that, I mean by providing a funding pot, for organisations to recover one-off support costs to enable people with #learningdisabilities to take part, supported by someone they know and trust) and by sharing opportunities
then perhaps we can move things forward. And this matters...family carers' voices are crucial - they offer a chronology an insight into failures & successes of services and systems across a lifetime
professionals and workers have valid input and insights. But these insights need to sit alongside first-hand accounts.
To share the space those of us without a #learningdidability may have to take a deep breath...
To share the space those of us without a #learningdidability may have to take a deep breath...
and respond to requests with "absolutely I can take part and speak up...but the caveat is I will NOT take the whole space, I will only sit alongside, because I do not have a #learningdisability
and if the opportunity is lost because the extra adjustments of time, support and accessibility cannot/will not be met then that is a fight we all take up, together with people with #learningdisabilities front and centre
And...to the dead air (as no-one is going to make it to the end of this rambly, incoherent, doubtless typo-laden thread) thank you for coming to my Ted-talk
