Monday, 2 January 2017

Autism and Disability - Charities pretending to enable us

Nearly everyone loves a story that makes them feel good, yes?  The pictures of a noble carer, selflessly devoting their life to caring for 'people like that'. 

I'm a carer.  And I'm disabled.  I've been a carer since age 10.  It's never, ever been about me needing to be honoured or rewarded for that,.  Caring isn't about me 'doing things' to someone else.  It's a relationship of love and respect, in which both people learn from one another.  It's really hard work, for sure.  With little support, little funding, little training or information.  But it's a partnership, always, between me and the other person.

Any idea how it feels to be thought of, or pictured, as just an object of care by some superhero?  Not good, my friends.  Not good at all.  It is disabling, disempowering, humiliating.  Trust me, even the most uncommunicative person knows when they are being treated with disrespect.

When I'm looking for a disability charity to support, with training, with skills, or with finances, I look beyond the 'feelgood' stuff.  The glitz, glamour, awards, presentations.

I ask three questions.

1) Who is leading this group?  Can I see leaders who are disabled, rather than token people put in front of a camera?  Or is it a group of people 'doing good to those poor disabled people'?  Beware of groups of Trustees with no biography information, no clue why they are in this role.  I like groups to be open and honest about their leadership and motives, with clear ways to get in contact with senior people.  And senior people who respond, politely, openly and honestly, to questions from disabled individuals.  I'm always fascinated by the ones who claim to want to change our lives, but won't speak to us.  Why would that be, eh?

2) Who is speaking for this group?  In the media article, is the article about the disabled person and using their own words, pictures, actions, etc?  Or it is about the heroism of someone who cares for that person?  Whose story is it really?  Does the disabled person just get to be a prop, so we learn about the heroic actions of someone else? Or a prop in the story of the carer?  That's nothing to do with respecting disabled people.  Watch out for narcissistic non-disabled leaders who want to be the story, and want everyone to watch them being marvellous.  That's not what it is about.  Watch out for their token disabled person who is allowed into a space, in order to sit there and smile, or read out the leader's choice of words.   That's not leadership or power, and it's not respect.

3) Is the message about enabling the individual to have their own voice, their own way of communicating?  Do the disabled people decide for themselves what they would like in their future?  Or is it about a group deciding what they will do to disabled people?  Who gets to decide?  Why do they get to decide that?    Who got to decide that 'outcome A' was the outcome required and desired?  Why?  Is that the only option?  Ask.  Really ask.  Whilst you're asking, ask how many disabled people are on the staff.  Ask how many are paid, and at what level.  "We have 4% disabled staff" sounds fantastic, apparently.  Except 16% of the population is disabled, and often people mean, "...well, they're like staff, but we don't pay them. They're more like volunteers really.  Oh, there's Mary, she's paid £5 a week to clean the toilet. And Jas, he's paid £5 to clean the cars.  If we put those down as 'disabled staff' it makes our fundraising report look really good."   That's not what we mean by staff.  Ask what they mean by the term.

Any good group will want to make sure that disabled people have an equal voice, an equal chance at leadership. With proper support and training to enable that to happen, not just landing them in a situation without support, and watching them fail.  "See, the poor dears can't do it".  Been there.  It wasn't pleasant. That's how some groups undermine disabled people.  Not clever. 

A good charity or group will want to ensure that disabled people have the ability to decide their own life choices.  To decide for themselves if they want a 'cure' or not.  To decide for themselves whether their actions are wise, or not (as much as is practical of course). To choose their own right response to an unfair or painful situation, and not have that described as a 'challenging behaviour'.

Who has control of the money?  Who has control of the media?  Who gets to decide who is hired, and who isn't?  Look for how many disabled people in that group have the ability to make those decisions.

"Oh but they're disabled.  They can't do that.  They can't even speak".

This is 2017.  There is technology.  We can all 'speak'.  Some speak in words.  Some speak in music, in arts, in movement, in emotion.  We all speak, in our different ways.

We need groups who listen.

Ask.  Explore.  You'll see a lot of things you didn't want to see.  But there's some good ones out there.  Find them, and enable them to thrive.