Why have we called this post ‘How loud to shout before you ‘Hear My Voice’?

I’ve just been reading this challenging and thought provoking blog by 107 Days of Action about Mencap’s Learning Disability Week campaign (incidentally I hate the use of the acronym ‘LD’ – I think we dehumanise people with learning disabilities enough without reducing them to a 2 letter acronym). It seems that many people with learning disabilities, and their families and people who support them have been trying to get their voices heard for decades. And so it’s with utter frustration that we still have to ask ‘How loud to shout before you ‘Hear My Voice’?

It’s made me think about what we’ve done as a charity in trying to address the issues that we’re hearing are important to people with learning disabilities. As a charity we started on a single issue, the right to be able to Stay Up Late. It was a simple enough aim and really at the heart of this is the right for people to be able to make real choices about their lives. As the work of the charity grows we’re still committed to that simple idea that people with learning disabilities should be able to lead the lives they choose and try and make this happen through our Gig Buddies project and in the way we run our organisation.

In a rather strange episode for our charity we found ourselves in the garden of the British High Commissioner of Malta (we had be invited incidentally) along with around 120 people with learning disabilities from 7 countries celebrating 800 years of Magna Carta.

(We were in Malta as part of the ART-is project we’ve been working on and this was an extra activity we’d managed to arrange). I was asked to give a short speech before Tilly and Del from Heart N Soul properly launched the proceedings. In my speech I reflected on those freedoms which people with learning disabilities have told us they want if they are to truly have the lives they want. These are:

• We need to be able to choose our support staff
• We need to have happy staff
• We need to be able to choose our friends and have a social life
• We need to be able to choose where we live
• We should have the right to have relationships and a sex life
• We should be able to choose what time we go to bed at night
• We should be able to choose how we spend our time
• We should be welcome and active in our communities
• We should not be referred to in negative ways in the media
• We should have proper paid work

Now I don’t think it’s fair that we take the blame for this but so far as a charity we’ve failed. Since 2006 people with learning disabilities have been telling us that they want to Stay Up Late (and do all these other fairly standard things that most people have the right to) and the fact is that things seem to be going backwards. If you go to a typical learning disability club night everyone leaves by 9pm. However, we didn’t start Stay Up Late because we thought it would be easy, we know it won’t be but we think there’s enough good people out there to actually transform things, there’s just an awful lot of support staff and managers out there who’ve lost their way and can’t see that the kind of support they’re providing is simply wrong.

There’s a malaise in the social care system where we seem to think its acceptable to treat people as less than human (An ‘LD’ maybe??) and deny them basic human rights.

So it’s good that Mencap’s campaign this year is ‘Hear My Voice’ – my problem with it is how hard to people with learning disabilities have to shout before anyone listens. Because not a lot of people appear to be bloody listening right now!

You can read more about the ART-is project here and see shared resources from the project here.

PaulR

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