When I take MY power, my co-worker is free to take hers

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.

People with learning disabilities co-working

People with learning disabilities co-working

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.

Shaun looking round a childrens institution in Moldova

Shaun looking round a childrens institution in Moldova

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.

Our Power to change things…For the better.

This week Shaun Webster, European Project Co-ordinator is a guest blogger, reflecting on his experience of the Voices Choices Summit meeting:

Last week at the Voices Choices Summit meeting that Norman Lamb hosted, I felt very proud. We were taking the Proposals from our Voices Choices Event that we co-hosted with Lumos, to the meeting.

It felt that the Summit meeting was a really good mix of high powered people. This was good because high powered people can make a difference. People with learning disabilities are tired of too much talking. We want high powered people to take notice and get things done. We want ACTION.

Before people with learning disabilities from CHANGE went to the meeting we talked about power and responsibility, peer to peer support, how we can work together to have power in the meeting. We all felt a bit nervous, we were worried we might make a fool of ourselves and say the wrong questions by accident. The meeting was in a huge room which was a bit nerve wracking at first!

The people I was working with made me feel more confident, we supported each other as we were all in the same boat. We didn’t know how the meeting would go. In the meeting we talked about what we know about, our lives and the lives of other people with learning disabilities. This made us feel powerful.

I was an equal with everyone there, all the people with learning disabilities from CHANGE felt the same. I felt people respected me as a professional person with a learning disability. If just Philipa had gone to the Summit meeting on her own and talked about the Proposals on our behalf it would have been just the same old story. Professionals who don’t have a learning disability really don’t know what we go through. It’s real and people without learning disabilities get a better understanding because its coming from us. We live it every day and we know what happens. Professionals are often guessing what happens to people with learning disabilities, you don’t have the real understanding of it.

If we have the space to talk we also come up with different solutions. As true equals we have ideas of our own on how to make things better for other people with learning disabilities.

When Kenneth was talking at the Summit meeting about his experiences of living in a care home, people really took notice because it had happened to him. This means he also has ideas of how to make things better.

We are not victims. I am a fighter and I make things better for other people with learning disabilities. I used to be a victim in the past but I have used my bad experiences and turned them into good.  I am using my experiences to help other people with learning disabilities have better lives and get their rights. My victim days are over. Other people with learning disabilities working at CHANGE are professionals too.

A lot of the time people like myself with learning disabilities are volunteering or service users. It feel like we’ve got no power and they pity us. I think that a lot of organisations are scared to take the next step. They are scared they’ll lose their power. Sometimes professionals who don’t have a learning disability need us to always be services users because then they can feel good about helping us. They can feel important. This makes us feel pitied and we think that often professionals don’t realize they’re even doing it.

The professionals who don’t have learning disabilities often think that we don’t know how to work properly. They are scared to let go of their power. They think we’re not able to understand things properly. These are very deep attitudes. They get these attitudes from their parents and other professionals. They are not used to seeing us as paid leaders. They see us a volunteers and it scares people to see things differently.

We are changing the attitudes of other people with learning disabilities, getting them to believe in themselves. We are supporting them to questions things like we do…Why? Why are we not getting properly paid? How can we move up the Ladder of Power? People tell them they can’t do things but I don’t believe that people have limitations, we all need to believe. In my job working with young people with learning disabilities I get them to believe in themselves. Seeing them take their power and speaking out makes me feel just so proud. It’s amazing.

The people with learning disabilities at CHANGE, we are trailblazers. We are all role models. We are being the change we want to see in the world.

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