Barriers, breaking them down and creating equality.

Over four thousand people have seen and shared on Twitter the horrifically degrading and abusive photo of the support worker employed by Mencap talking on the phone while smoking a cigarette and standing by the Disabled Person they are supposed to be supporting who is covered in their shopping bags balanced humiliatingly across them and their wheelchair.

When we see practice like this or like we saw on the Panorama programme of Winterbourne View, we collectively feel appalled and ashamed of how society can and does treat people with learning disabilities. Speaking with people with learning disabilities employed at CHANGE hearing the story made them feel angry and demeaned. What is perhaps the hardest thing to bear is that we also know that this is not a one off ‘bad’support worker. This is not just something that happens to be caught (luckily) on camera one day in a service run by Mencap. We know that people with learning disabilities are denied their basic human rights every day in many care homes run by many different organisations across the country, and across the world.

At CHANGE, we often hear of people with learning disabilities being treated badly within the services they are using. We see people’s fear to speak out and their pain and frustration at what they and their peers are living through.

Recently a woman with learning disabilities told me that she is not allowed to stay the night with her boyfriend (they are both in their 30’s) because sleeping together is not in his care plan and if it was, the staff said they would then need to do a risk assessment.

A woman at CHANGE recently said how an agency staff ” put me upside down in my hoist into the bath. I felt humiliated and embarrassed”. The staff member was suspended and then sacked. How could this happen in the first place though? How come the woman with learning disabilities was not offered counselling after such a humiliating and traumatic experience? Why wasn’t she offered the chance to be involved in making sure this doesn’t happen again when agency staff are employed, or even offered compensation? We know of people with learning disabilities who are shouted at by staff and who have no control over their own money.  We know that when people with learning disabilities live in 6, 8 10, 12 bedded units, it is simply impossible for them to make choices about their basic rights including what they eat, when they go out, when they have a bath, what time they go to bed, what time they get up, who comes in their bedroom, which staff are on shift, having privacy. These are not rights based models of housing support where people’s basic rights are respected, however good and aware the staff may be.

We live in a society that assesses people with learning disabilities as soon as they get pregnant to see if they would be good enough parents rather that support people to become good enough parents. We make judgements about capacity and use our prejudices to keep people disempowered,  even when we don’t intend to.  We live in a society that sends people with learning disabilities into assessment and treatment units far from their loved ones because there is not enough support in the community, a society where organisations supporting people with learning disabilities rarely actually employ people with learning disabilities to support themselves. We use our deep seated prejudices about what people with learning disabilities can and cannot do to frame the services that we provide and to drive forward the changes that we think are best for people.

Mencap calling people with learning disabilities who use their services ‘beneficiaries’ reflects Mencaps attitudes,  but also my guess is that it reflects the attitudes of many more care providers than just Mencap. People with learning disabilities rarely receive rights based respectful services. At CHANGE we meet and work with hundreds of people with learning disabilities across the country and they tell us their stories of services that are trying to save money, that employ too few staff to support too many people with learning disabilities. They tell us of bad practice and their fear to speak out incase they get into trouble or their care home closes down and they have nowhere to live.

We know there are controlling, abusive staff who will be attracted to become support workers because of the power they will have over another human being, but there are also many good empowering empathetic staff trying their best in very challenging circumstances.

I believe that if the service run by Mencap that the person with learning disabilities in the photo lives in, were to employ staff with learning disabilities as support staff alongside non learning disabled staff, if the care home truly respected the people with learning disabilities paying for their service and if they really worked within a rights based model that role modelled a rights based service this would get much nearer to stamping out abusive practice. In services that already don’t respect people’s rights, where people with learning disabilities are seen as passive recipients of care, it becomes so easy for boundaries of respect and rights to get broken even more and abuse to insidiously and dangerously seep in and become acceptable practice.

Surely it’s the system that needs to change. Going forward, we all need to share our power with Disabled People including people with learning disabilities, we need to look at where good practise exists ,understand what good practise looks like and support care providers to find ways of becoming transparent empowering rights based respectful role models of good services. We need to ensure that every single person with a learning disability who wants is in receipt of their own Direct Payment so they can choose their own services based on service providers needing to evidence and prove their worth and show models of good practice. If we look towards a better future for people with learning disabilities we have to address issues of power,  which means sharing our power, which means employing people with learning disabilities from top to bottom in services and organisations that they use, which means making information accessible, which means asking, genuinely listening, learning from and collaborating with our colleagues and our employers with learning disabilities, and not our “beneficiaries”.

As Shaun Webster MBE says: The word ‘beneficiaries makes me feel physically sick. It’s like going back to old institutions and we don’t want to go back to those days. Often the best people to support us, are other people with learning disabilities. We have more patience and understanding of each other because we know how to look after ourselves and therefore each other. Peer to peer support is what we need. We should be paid for this. We need better ways and more opportunities to become independent in the community. If the support worker in the photo was themselves a person with a learning disability I believe that they would have empathy and understanding and would support the person with a learning disability in an empowering way. If we are employed as support workers and Peer to Peer workers we become role models and this changes what other people with learning disabilities believe they can do. Employing us as support workers and Peer to Peer workers, breaks down barriers and changes attitudes. This changes the culture from the top down to one of respect, inclusion and equality.