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Doing It

November 6, 2016

You either do it or you talk about it (passionately).

The NAS have launched their Christmas 2016 campaign. Here is the launch photo:

nas3

Anyone got any idea what the message is? Autistic people and their families have shit Christmases? Sibling’s lives are ruined? I haven’t a clue what the message is.

But let’s make a donation anyway.

In the meantime, I (amongst several other campaigners) am still blocked by Jan Tregelles, the CEO of Mencap. It’s no big deal. The corporate Mencap world is about as far away from my world as it is possible to be. If I am passionate, it must be a very different kind of passion:

mencap1

As long as the big national charities continue their idea that their role is to give learning disabled people a voice, we’re fucked. Always on the outside looking in. Always the victim.

Two stories of people having a voice:

This morning, Steven has been doing his Sunday morning disco. He’s been working through the alphabet and today he was up to “J”. A smorgasbord of The Jam, Joan Armatrading and Just Jack. At one point, overcome with joy, he started to channel James Blunt – “Dad – my life is brilliant”.

And finally, the fabulous Justice for LB crew have just returned from their epic CaminoLB walk. Here’s just one of the snaps. And I challenge anyone to spot the LD people in the photo, being given a voice.

camino1

Sometimes, you just get on and do it.

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From → Social Care

11 Comments
  1. It’s so unhelpful and damaging when people are presented as objects of pity or problem. Many many years ago Mencap ran an advert showing I think he might have been called Simon as a pitiable picture – but they did see sense and change this. We do see so much better pictures of achievement these days. So much more powerful are the results of the right support – with help people’s talents can thrive, their contributions can be made and they (and their families) can develop good lives. Noone would deny the amount of effort that is needed for some people’s lives to change nor the amazing contribution of families to make this happen – far and beyond anything we might expect. However, surely we should be telling people what helps make it happen – not have people feeling they must contribute as it’s so awful. It’s the damage this does to all people with labels to make things so much harder due to the prejudices this feeds on. We should be presenting what’s possible with help not the worst moments of some. We also fail to help people understand what we might be like did we have some if the experiences people have had simply because of the lack of help and understanding. No wonder we get so little urgency to get people him from ATUs – we will make people imagine the worst unless shown the real picture. AND some of us might find ourselves locked up had we the same weight of prejudicial attitudes on us, the lack of understanding and with less resources and no power to change things.

  2. Reblogged this on rosemarytrustam and commented:
    rosemarytrustam permalink

    It’s so unhelpful and damaging when people are presented as objects of pity or problem. Many many years ago Mencap ran an advert showing I think he might have been called Simon as a pitiable picture – but they did see sense and change this. We do see so much better pictures of achievement these days. So much more powerful are the results of the right support – with help people’s talents can thrive, their contributions can be made and they (and their families) can develop good lives. Noone would deny the amount of effort that is needed for some people’s lives to change nor the amazing contribution of families to make this happen – far and beyond anything we might expect. However, surely we should be telling people what helps make it happen – not have people feeling they must contribute as it’s so awful. It’s the damage this does to all people with labels to make things so much harder due to the prejudices this feeds on. We should be presenting what’s possible with help not the worst moments of some. We also fail to help people understand what we might be like did we have some if the experiences people have had simply because of the lack of help and understanding. No wonder we get so little urgency to get people him from ATUs – we will make people imagine the worst unless shown the real picture. AND some of us might find ourselves locked up had we the same weight of prejudicial attitudes on us, the lack of understanding and with less resources and no power to change things.

  3. Cathy permalink

    Little Steven I think Rosemary. Funny just this morning I was recalling this example of mencap misjudgment with a fellow dog walker

  4. simone aspis permalink

    Why not see the benefit of supporting disabled peoples lead organisations instead such as People 1st – People 1st (self-advocacy) were the organisation that a) secured disabled people with LDs rights under the Disability Discrimination Act b) disabled people with LDs entitlement to direct payments under the Community Care Act – yep that is the support that your sons and daughters get – we had a big battle on around that guidance called “willing and able”, moved the presumption of incapacity to capacity with some principles and a right to advocacy under the Mental Capacity Act, challenged the Charity commission that refused to allow people with LDs to become trustees and run their own organisations. Whilst not perfect, People 1st made the civil rights bill in an accessible format as a campaign stunt to force the Gov to make their laws and policies available in easy read and as a consequence there is a Equality Act 2010 duty around public bodies providing information in accessible formats. I am unsure why there is a such a resistance towards supporting orgs ruin by disabled people – Why not put your egneries where there is potential for common ground – What would be better – to be blocked by Mencap’s CEO or to be welcomed by People 1st (self-advocacy) CEO – you decide

  5. Pauline Thomas permalink

    Yes Mark does anyone know how NAS plan to help this family?

  6. Lisa permalink

    That is an interesting question Pauline.
    The NAS kick people out of their services for being ‘challenging’.

  7. The NAS was set up by parent and psychiatrist Lorna Wing (and two others) as the best way to help her daughter probably, which is amazing, and she wrote excellent self-help books. Now, apart from conferences and training which raise funds, what do they do? Why only advise? Only train expensively? Where is advocacy? Where are handouts of funds as charities should do? New activity centres nationwide?
    Mencap should rename themselves as ‘Mental handicap’ as ‘handicap’ is insulting, it’s not positive or even accepted as modern language. The voice of learning disability they are not, ‘a voice’ perhaps, as many voices exist. And are voices acted on, or just listened to, recorded, and not acted on?

  8. weary mother permalink

    Doing it..is what we do,

    Every family like ours, had an additional bag of coal (figuratively speaking) hung round our neck every year for last ten years …,

    At the time some bright spark came up with the idea of re-abling people with learning disability by rejigging access fto any support at all. And people hired on short contract – given a pen and told to draw a line through lives.

    Sold as helping ‘them’ (the unproductive) to job centre – and for learning disability. LA’s could sell the no longer needed services..to themselves.. Families could ‘chose to ‘access re- opened day services at huge financial cost. A win win. And another bag of coal.

    Then came the cutest wheeze – give care and support money directly to families. In process pass the role of admin and finance department to families..Win win.

    Meanwhile drowning families who can clue up on law and disability rights – access solicitors and legal aid – taking more time and more energy (while doing all caring) – to claw back some support – through the law. And LA’s got more fully competent at bending it.

    LA hire cut social worker numbers – hire people to do Social Work job for less money. Bonus to LA these people would have no status and no power – and they don’t talk back….or they leave.

    Same staff go sick with stress. Stressed families have no access to any one at all for months. For coal face crises firefighting. And carrying the blame for all…for always the poor bloody LA foot soldier. Families have just about enough left to complain – and brutal wheel screws the family, r disabled son or daughter – and the LA foot soldier.

    Mangers, invisible or behave like potentates – demand months of subservience for a tightly time tabled conversation. If lucky – in their office – but always – at their convenience – no matter the distance to travel. More bags of coal.

    And who is the CE of your LA ?

    All these clever wheezes have our sons and daughters – shut away in misery far away from mum and dad – (some die there) – or unwashed and unhappy are trudging freezing cold high streets shackled by shared neglect to the one in front.

    At same time – wealthy charities – are selling our sons and daughters as the destroyers of siblings happiness ..and are coining it in with pictures of our Downs babies and toddlers. -….knowing where their bread is being buttered – ensuring cap always doffed to the paying…customer..

    And Kings Fund etc say only this morning that LA’s are in crises…

    Really?

  9. weary mother permalink

    Sorry typos include …”.to job centre …and cure for learning disabilities” Probably many more typos as doing this flat out in bed..

  10. simone aspis permalink

    Why the focus on non user lead organisations again – why not focus on supporting orgs run by people with LDs –

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