We must save initiative that gives adults with learning disabilities a voice

We must save initiative that gives adults with learning disabilities a voice
Lewisham Speaking Up supporters at a People's Parliament event

People’s Parliament unites and empowers people with learning disabilities to fight for change – we must ensure its survival

Article originally published in The Independent, 29 November 2022.

Here is a chilling statistic. During the pandemic adults with learning disabilities were at least four times more likely to die from Covid-related conditions than the general population. It is a shocking differential, one that begs an important question about how such a blatant inequality can be eradicated.

In south east London one local advocacy group is dedicated to ensuring the lives of people with learning disabilities are as valued and meaningful as anyone else’s and taken seriously at all levels of public policy. Since it was set up in 2005 Lewisham Speaking Up (LSUP), a grassroots self-advocacy charity, has been a forum in which people with learning disabilities can speak for themselves on a whole gamut of issues that matter to them.

Through their innovative “People’s Parliament” events it regularly brings together scores of people to discuss issues ranging from health care, benefits and job opportunities to housing, abuse within residential care homes and disability hate crime.

This experience of airing their views among peers has turned many attendees into confident activists who have taken on officialdom on behalf of their LSUP community, working hard on big issues that are difficult to change, alongside staff from the charity providing support and representation.

Along the way there have been plenty of successes – persuading the local authority to take digital exclusion more seriously, propelling representatives with learning disabilities and autism themselves on to the local Disability Right’s Commission, sharing information about health services and vaccines, and raising awareness in schools as part of their work to stamp out disability hate crime.

The most striking dividend can be seen when participants talk about their experience of the People’s Parliaments – “It’s where I can get my voice heard”, “I don’t feel swept under the carpet any longer”, and “it’s where we can make a difference”, are all powerful comments made in a new short video to accompany a crowdfunder that launched this month.

They are the voices of a group that has worked hard together to represent themselves to the wider world. Positivity and collectivism doesn’t stop an infectious disease in its tracks, of course, but it empowers and better equips people to navigate the hurdles an experience like the pandemic has created. And this is a charity that numbers people with learning disabilities on its trustee board – precisely in order to ensure its work is properly reflective of the priorities of those it serves.

So you might imagine that policy makers seeking the lessons of the pandemic would alight upon initiatives of this kind as a first step towards righting the shocking inequalities highlighted by the Covid death figures, one that could help create a more level playing field. Tragically, the opposite is true.

Funding cuts from the National Lottery, greater competition amongst charities that support groups in this space, and a local authority facing its own challenges in the face of the cost of living crisis all create a perfect storm that risks the very existence of a charity for whom this is core work. 

Lewisham Speaking Up urgently needs funding to continue the project and have launched a Crowdfunder Appeal to raise money to save People’s Parliament.

I will donate some money to try and keep the charity going and am encouraging friends and neighbours to do the same. Perhaps by doing so, we might root the work more deeply in our community and ensure people with learning disabilities in Lewisham and beyond are properly supported and empowered. 

I can’t help feeling, however, that a far better response for us as a society, would be to focus more public policy attention and funding on grass roots work of this kind. There is nothing like working face-to-face with those who a programme is intended to help to keep it rooted in reality.

Indeed, if Matt Hancock really is seeking redemption, as opposed to facile celebrity, he could well emerge from the jungle and devote himself to groups of this kind, ones that are engaging where past policy failures that he was party to have had the most devastating impact. 

If Hancock did that with the same vigour to which he applied himself to Bushtucker trials, he might yet win a more meaningful competition. In the meantime, the self-advocate army of LSUP are taking matters in to their own hands, and have launched a crowdfunding appeal and video explaining how you can help make a real difference to their vital work.