In this issue, several articles focus on profound and multiple learning disability (PMLD). Melanie Nind and Iva Strnadová (pages 20-21) ask whether we realistically include people with the most complex disabilities in our vision of a society in which everyone
belongs. Jo Grace (page 22) reports from the Raising the Bar conference, a national event that aims to develop and apply good practice for this group. And Jan Walmsley (page 23) asks whether, despite the undoubted achievements of the self-advocacy movement, those who are most profoundly disabled have ever had a space within it.
These articles raise important questions that all of us – professionals, campaigners, policymakers, self-advocates and advocates – must attempt to answer honestly.
Dreenagh Lyle’s book (review, page 27) about those who occupy the most complex end of the range of conditions we call learning disability raises some of these questions.
Does the widely accepted social model of disability – which argues that the problems of living with disability are caused by society and its barriers rather than any organic condition – fall short when it comes to PMLD? Does the social model ignore the lifelong, intensive medical and care needs of this group?
When we say everyone can be independent, work, make their own decisions and choices and be active participants in their communities, are we unconsciously excluding complex needs from our category of “everybody”? To use Lyle’s language, have we created a spurious “as if” world, where we try to minimise people’s needs to make them to belong and, in the process, make belonging impossible?
There is a growing movement to challenge this “as if” thinking and to promote belonging in more sophisticated ways, attuned to the complexities of this group and including parents and family networks. The very people who often dedicate their lives to ensuring their sons and daughters belong in some way have too often been seen as an obstacle to independence rather than a critical cog in the wheel of belonging.
A rethink is needed, and the work of academics in alliance with carers and the dynamic parent/professional partnership of the Raising the Bar movement are good starting points.
‘Enough is enough’ – motto for the new year
We could all be forgiven for ending 2019 in a state of profound gloom, and looking ahead to 2020 with equally deep trepidation.
The last year has been characterised by scandal after scandal emerging from assessment and treatment units, hospitals and specialist residential homes. The shocking and utterly tragic cycle of preventable deaths and ruined lives continues unabated. The Transforming Care programme, which was designed to bring all this to an end, has been proved hopelessly unequal to its task.
As young people have their lives destroyed, some kept in solitary confinement, fed through hatches, straitjacketed and chemically coshed, it is difficult to see a way ahead that is in any way good. The gains of the last two decades can seem to be in full-scale retreat.
But, as we have shown repeatedly over the past year, a fightback has begun, led by an alliance of formidable, courageous parents who have endured the suffering, ill-treatment and sometimes even deaths of their sons and daughters under appalling regimes.
Our interview with Leo Andrade, one of these parents (pages 12-13), shows just why this alliance will, in the end, win. Demonstrations outside the Department of Health and Social Care, shocking publicity in national newspapers and on television, powerful movements like #HumanToo and Rightful Lives (covered in our summer 2019 issue) are shaming authorities into facing up at last to their responsibility to end this abuse.
Community Living will be right behind these campaigns in 2020 – enough is enough.
Simon Jarrett
Editor
