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.

Is This Abuse?

One of the many things that people with learning disabilities who are employed and volunteer at CHANGE say is that by working in an organisation where people with learning disabilities have equal economic power and where power and rights are integral to all that we do, they feel deeply respected and listened to. We support people to become more resilient and to use their intuition. This may sound surprising but I think that both of these qualities are often taken away from people with learning disabilities – along with their voice and their access to information.

It is within this context that one of the volunteers came to me the other day asking if the following situation in her residential home was ok because intiuitively she felt that it wasn’t:

‘A male agency support worker undressed me, then left me on my bed undressed while he went out of the room. As I use a wheelchair I was stuck there’. She felt degraded, vulnerable and powerless. What I understood that she was asking me was  – Did she have a right to feel what she did?


I felt completely shocked. I too felt powerless and angry. I have no doubt that this is not an isolated incident in one care home. We as a society allow this to happen.

In many ways I hate the term ‘vulnerable adult’, it concerns me that we need to have a ‘vulnerable’ group. It can make us feel good because we can then ‘help’ this group of people and surely this in turn means that we are good people. What and who are ‘vulnerable’ adults? Why are they so vulnerable? What makes us vulnerable economically, in our families and in our communities? Would I like to be called ‘vulnerable’? How would it affect my decisions and life choices if society saw me in this way?

How can we work together to change this? Should we?

I think that this incident raises a number of questions….is this abusive practice? Should men ever be allowed to deliver personal care to women? If women in our society are sexualised by the media and the pornography industry are we allowing women who least have a voice to be in the most disempowering of situations? I know that for me to have my personal care delivered by a male member of staff would make me feel very different than if my carer was a woman. I would feel more vulnerable – would you too? Are the issues the same for men with learning disabilities?

And what does this mean for women with learning disabilities who are put in these situations daily. How courageous and strong that they can then come to CHANGE and work together for the human rights of other people with learning disabilities, that they can get on with their lives. Or can they really?

What are we doing so that people with learning disabilities are no longer ’vulnerable’ but are empowered, strong and have economic power, role models, real hope? If people with learning disabilities were employed in that care home as advocates, peer mentors and rights workers, could we change the balance of power?

I had a fantastic discussion this week with a Healthcare Trust who are thinking about the possibility of employing adults with learning disabilities as co-workers to work in schools. They would support the young people to ensure that they are getting their needs and rights met, ensure personalisation works and understand and support the young person to talk about how they are feeling. This is a role currently done by a senior manager. We really did have tears in our eyes, both of us deeply moved by the real possibility of an immense shift in power for ‘vulnerable’ adults.

empowered woman