How do we find a solution to keep self-advocacy thriving?

Self-Advocacy is the most important form of advocacy and in my opinion the ultimate preventative service.

If people with learning disabilities are empowered to speak for themselves, they are more likely to live more fulfilled lives and change societies attitudes towards them. I have always been confident about that. In principle I still am. However, the sands have shifted. It seems to me that self-advocacy is under a real threat. And, in difficult political times, voice, choice and control and our human rights are clearly not a priority in the United Kingdom.

Let me explain.

Wales leading the way in self-advocacy

Wales is proud of its groundbreaking All Wales Strategy of 1983. The All Wales Strategy was the first strategy to recognise that a learning disability is not a health condition and therefore should not be treated in hospitals. People with learning disabilities should live ‘normal patterns of life in their local communities.’

It led the way across Europe in bringing about the closure of the long stay hospitals and integrating people with learning disabilities into their local communities.

The strategy also recognised the importance of the voices of parent/carers and gave them more agency in influencing policy around learning disability.

However, as innovative as it was, the idea of people with learning disabilities speaking for themselves was not something that was considered back then. That came much later when activists such as Gary Bourlet introduced ‘People First’ to the United Kingdom. The People First movement championed the fact that people with learning disabilities could and should speak for themselves and not be subservient to those supporting or caring for them.

Over the years, All Wales People First worked hard with the Welsh government to ensure that the voices of people with learning disabilities were central to groups such as the Learning Disability Ministerial Advisory Group in Wales.

Nobody believed this could be achieved but we did it and we changed many people’s perceptions in doing so. That coupled with the Advocacy Grant Scheme (pump prime funding from the Welsh government into advocacy services) saw a really strong network of self-advocacy groups develop across Wales. Wales led the way in self-advocacy thanks to the faith the Welsh government had in people with learning disabilities being able to speak up for themselves.

In 2012, when I was appointed as the Chief Executive of All Wales People First, with lived experience of living in learning disability care services, I hoped to be part of a new movement that would build on the brilliant things we achieved in Wales.

I brought my own experiences of:

• fighting to leave care,
• having an individual budget, and
• living the independent life I now live.

I hoped I could be that ‘poster boy’ for what could be achieved by thinking a little differently about the way we do things.

A different picture in 2024

Fast forward to 2024:

• the Advocacy Grant scheme is gone,
• self-advocacy groups are merely existing, and
• I find myself protesting with other disabled people’s organisations and charities in support of the Homes not Hospitals campaign led by Stolen Lives.

Together we work to prevent the institutionalisation of people with learning disabilities from being placed into inappropriate mental health facilities because the services they need cannot be provided.

Far from building on what we had achieved in Wales we are regressing. It’s a similar picture across the rest of the UK too.

Indeed, the general picture is very interesting for people with learning disabilities across the UK. Most still struggle to secure meaningful employment, many struggle to maintain friendships and relationships and to be accepted as equal citizens. In that sense nothing much has changed.

But now there is an additional challenge. Many people with learning disabilities are under enormous pressure to find work and face the potential of being hit with benefit sanctions if they can’t secure work. Ironically, no one wanted to work more than people with learning disabilities. But society rejected them. Many of our members struggled to even be accepted for voluntary positions. They were rejected by the very society that now blames them for not playing a more active role.

In the past I used to complain that people with learning disabilities were limited to a life on benefits and attending day services. Now they aren’t even guaranteed the very day services I used to criticise. The Covid 19 lockdown saw many day centres for people with learning disabilities close and are still not open.

The general decline in self-advocacy seemed to come about after the financial crash in 2008. It seemed that once society became sick, concepts such as social justice and human rights became politically toxic and associated with fiscal irresponsibility. Incidents of hate crime towards disabled people increased and government opposition stayed very quiet.

Added to that the cuts in local authority budgets, further impacted by the financial consequences of the Covid 19 pandemic has forced local authorities to re-think priorities. Across the UK self-advocacy organisations seem to be deemed desirable but not essential.

To add further insult to injury the proposed ‘British Bill of Rights’, proposed by the previous government, nearly passed right under our noses. A Bill that organisations such as the British Institute of Human Rights called a ‘rights removal bill’.

A bill that if passed would have made it much harder for people to challenge a breech to their Human Rights. Again. the opposition parties in Westminster said very little about it despite being made aware of it by human rights and disabled people’s organisations.

The general public still remain largely oblivious to the fact that such a Bill was being debated let alone its consequences on their lives

The purpose of self-advocacy

Self-advocacy has many purposes. It doesn’t just equip people with learning disabilities to speak for themselves. Self-advocacy also equips people to:

• Speak collectively about important issues that affect their lives.
• To make their case when tough choices are being made.
• To be present and visible in society and thus challenge the barriers that exclude them from employment and active citizenship.

If ever we need our voice, it is now.

Wales has done comparatively very well in terms of self-advocacy compared to the rest of the UK but we still face overwhelming challenges.

I compare the self-advocacy situation in Wales to that of osteoporosis. It looks solid and intact on the outside but on the inside, it is brittle and frail and could crumble at any moment.

Finding solutions

The local groups do a great job despite the challenges. And, I have no doubt that between us the voices of people with learning disabilities are always heard by the important decision makers. But what good are the voices if those making the decisions are working with limited funds? And, worst case scenario, working in local authorities who are either facing or have become bankrupt and are powerless to make the changes our members need?

So why is this happening and what is the solution?

I believe that the UK is fundamentally a capitalist nation. Whatever the colour of the party that forms the UK government, they think in terms of social justice being a luxury to be afforded according to how prosperous the country is at any given time. That businesses are the biggest priority in growing the economy and creating prosperity for all. The so-called trickle-down economics. Cruelly, disabled people are labelled as being ‘economically inactive’ and are tarred with the same brush as those who can work and choose not to in the media.

Whatever colour party forms the UK government, bastions such as Human Rights should be held as sacrosanct. Governments must do all they can to ensure that disabled people are not demonised for a situation that society has fostered onto them.

It must not feed into or encourage an inaccurate right-wing narrative that disabled people are partly to blame for the economic mess the country is in. This false narrative only serves to exacerbate and conceal serious social injustices on the most vulnerable people in society. It also deflects away society’s responsibility to remove the barriers to inclusion that disabled people have championed for many years, years before the post 2008 financial crisis under the Social Model of Disability.

Responsible government should not just be focused on financial responsibility but moral responsibility too. Part of that moral responsibility is to make sure that all citizens have their voice.

In short, we need to rethink our political priorities, especially during austere times. If we lose our voice as well as our human rights, then people with learning disabilities essentially cannot live as active and equal citizens in our society. And if we let this happen it confirms that concepts such as ‘voice, choice and control’ are mere political rhetoric with little significance in the real world.

Find out more about All Wales People First.