Civil Society and people with learning disabilities

 

From a keynote address at the Annual Conference of Learning Disability England,13/2/2020 Manchester.

The Civil Society Futures Inquiry was a listening exercise. It was a hugely ambitious exercise to find out what people within civil society were worried about, and what their hopes and fears were for the future. In shaping the inquiry  we wanted to hear from all parts of civil society – from the small community groups  running allotments or choirs, developing Park Run or the local bowls  club, the big charities  providing services and all the others that make up this rich web of activity and engagement that we call civil society.

And we found a number of things.

  • We found that people really want to belong to something, and that it matters very much indeed to most of us to be part of something which is not our family or our work.
  • We found that people really mind about the place they live. That they really care about their place.
  • We found that people feel incredibly insecure – about their work, their homes, the climate and what’s going to happen next.

And we found that within civil society people felt that none of us were as good as we could be. That people recognised that too often we had become so worried about where the money was going to come from, that we had not always been as focused on the people we exist to serve. That sometimes we had got tied up with developing our own organisations and not always working well with others. And that there wasn’t a great deal of trust between the different parts of civil society.

But we also heard that people think it really matters that within civil society we get so much better at what we do well. That people know we are facing into a bumpy decade- one in which we are at risk of becoming ever more divided, ever more untrusting, and likely to be thrown off course by economic shocks, and by the impacts of climate change. We also recognised that mistrust in politics, and real anxiety about the state of our society was profoundly damaging.

We can be so much better than this.

The civil society which people with learning disabilities encounter shows us some of the risks, and many of the opportunities.

I identify four parts of civil society that really matter.

  • Local community organisations – like Park Run, walking groups, choirs and litter picking groups, cinema clubs and line dancing. All of these voluntary activities need to be genuinely inclusive for people with learning disabilities, alongside everyone else. If they’re not involving people with learning disabilities, they’re not doing their job at bringing people together.
  • Provider organisations – those amazing organisations formed over the last century of so. Many of them changing and developing and growing and learning. And increasingly knowing that their need to be serving the real needs and desires of people with learning disabilities and doing it differently.
  • The organisations of people with learning disabilities – from the early courageous and pioneering days of People First, of course, but in so many other ways people are coming together to assert their needs and their right to be heard.
  • Campaigning organisations, and groups of people – frequently parents – fighting for justice to be done, challenging bad practice, (and there is so much bad practice,) and arguing always for a better more just society.

Just think what could be achieved if all these groups came together.

But just like the whole of civil society there is sometimes mistrust and antagonism between the different groups.  And they all face challenges.

The community groups can become inward looking and frightened and fixed and fail to invite in people with learning disabilities. They can end up being exclusive, even with the best intentions.

The providers can become overwhelmed by the needs of commissioners and regulators and fail to meet the needs of those they exist to serve. They can and do make dreadful mistakes and can sometime struggle to adjust and improve what they are doing. And they can be so fixated on providing services and forget their vital role in making sure that the people with learning disabilities can become full active members of their communities, not ‘service users.’

And groups of people with learning disabilities- those groups that have worked so hard to change the face of learning disability, the map makers who helped us all to navigate to better, but still not good enough. They too can get stuck in their time. They can feel exclusive to younger people and people with different attitudes and experience.

And of course, campaigning organisations can be fuelled by completely righteous anger and grief – and can themselves burn out and suffer terribly. What if we could all come together?

What could we achieve if community organisations were genuinely sites of social solidarity? Places where all of us worked alongside, played alongside people with learning disabilities. What if those same community groups were welcomed into the residential care homes and supported living schemes? What if the walls between people living in communities and   others could really be breached? What if providers of service were really listening acutely, and intently to the voices of people who used their services, and the views of their many friends and allies? What if people with learning disabilities were shaping our stories about the places we live in and were contributing and helping us all to grow.

What if …. what if the ways in which we meet the challenges in the next decade were really in our grasp? What if we recognised that it is only by truly inclusive communities that we will build the strength and the voice to change things. What if provider organisations knew that they were getting the best and most precious feedback from the people popping in and out of their services, and that those people had friends and neighbours who used their services.

The road to justice can seem very long and windy. We have made huge changes in the lives of people with learning disabilities, and that is to the credit of all those people who fought, argued and protested. But the job is not done, and the gains can always be taken away. Strong resilient civil society, fully involving people with learning disabilities, firmly rooted in place, is, I believe, the best possible way of navigating the challenging times ahead. But the path to justice does require us to work together, to recognise all that we have in common and ensure that progress continues.

 

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