It’s straightforward….not easy, but straightforward. At great risk of repeating myself, which I know I am, please ask yourself the following questions:
• How many staff does the organisation you work in employ?
• What is the annual turnover of your organisation?
• How many of the staff employed in your organisation are people with learning disabilities and what jobs do they do?
• Why so few?
It’s hard. At CHANGE we’re always asking ourselves…..which post is more important, an administrator or a trainer with learning disabilities? An illustrator or a development worker with learning disabilities? It is always easier to justify a post for a person who doesn’t have a learning disability. It’s easier to think we need that post more. It’s complicated employing a person with a learning disability. They need support, there are challenges around power and responsibility. What expectations should we have? What’s too much pressure? We can all fall into being a certain way in the world as women, as men, fulfilling the expectations that society might put on us, finding it hard to be aware of and challenge those assumptions and expectations. It’s no different for people with learning disabilities who are generally not used to having high expectations and responsibility placed on them. They are used to being patronised and infantilised. As non learning disabled people we are often used to working at a fast pace, speaking in an overly complicated way, not being challenged by the very people whose lives we are employed to improve.
Employing people with learning disabilities is risky,edgy,gritty and challenging in ways that often makes me feel uncomfortable. I cannot hide from the power I have. An hours meeting with a CEO from another organisation and its so easy for me to dominate,go too fast,silence the staff with a learning disability from CHANGE……and I have. But when I do, there is always a challenge. How can I support people’s rights if I’m not listening? Someone saying they want to talk to me, someone is cross with me that I spoke too much. Every single day I am learning, challenged, bowled over by the aliveness and vibrancy of the organisation.
I feel humbled being witness to people taking their power and finding their voice, then using their voice to fight on behalf of other people with learning disabilities. Life is hard for so many people with learning disabilities who face a daily experience of being called names, stared at, not being understood, hurried and yet so many people’s courage, persistence and strength is absolutely breathtaking.
And it has an impact. Because CHANGE feels so vibrant and alive, I feel alive. I feel connected. It makes absolute sense that employed and empowered people with learning disabilities know things I don’t know, about the fabric of their lives. They also know what it feels like to be disconnected because you are so different, and how it feels to be put in such a harsh isolating hostile dehumanising environment as an assessment and treatment unit or indeed any type of institution. This is in their history the history of their ancestors as well as in their present, its in peoples blood. When we’ve visited institutions its always the staff with learning disabilities who say,’ this could be me’. I am always drawn to imagining how it might feel to work there, what lives some of the staff might have had to be so disconnected from the people in their care.
Institutions are disconnected from society. They are extreme in their utter lack of connection. I visited a baby institution in Eastern Europe. A ward with 30 babies, each in their own cot. 30 babies in 30 cots. Babies put there because of poverty and or disability.The ward was totally silent. I cannot describe the pain I felt when we saw those babies, the pain of the silence. The 30 babies had learnt that no amount of crying would bring the love and comfort babies desperately need. They had learnt to soothe themselves.
If like me you believe that in our own lives connection is fundamental to our emotional well being, then how can we have a different rule for people with learning disabilities? Are they really so other? And for many people with learning disabilities who are not living in institutions are they really connected in communities? So many people with learning disabilities talk of loneliness, isolation, feeling left out.
Communities are made up of role models, people we aspire to, young people and elders. How many children with learning disabilities see adults with learning disabilities teaching in their schools, working in their youth groups, waiting in the playground for their own kids? How many adults with learning disabilities see other people with learning disabilities employed as health workers, commissioners, advocates? If we believe that living in communities is important and having peers who can speak with us as mothers, fathers, lesbians, gay men, Black people, people from minority communities, which ever community we are from, then why is it any different for people with learning disabilities?
Why is it acceptable that so few people with learning disabilities are employed as leaders and influencers in their own communities delivering their own services? We cannot see shutting institutions in isolation, it is part of the whole and we have to look at the whole of people’s lives or history will truly repeat itself.
And really, trust me, people with learning disabilities really can do it. They really can be leaders and influencers with so much to teach other people with learning disabilities and to teach us. It might be in a different way,a challenging way,but maybe it will be in a better way. After all, who can honestly say hand on heart that we’ve got it right so far?
As Shaun Webster said to me recently:
‘When I take MY power I feel nothing will stop me. I feel fired up and brilliant. When I take MY power, my co-worker is free to take hers’.
Please click on this link and read our draft Statement of Rights.