Community Living Jan 2020
Community Living editor Simon Jarrett previews our 2020 issue – have we been getting it wrong about profound and multiple learning disability, and should we look forward to the New Year with gloom or optimism?
Profound and multiple disability – can we raise the bar?
In our January 2020 issue several of our articles focus on profound and multiple learning disability (PMLD). Melanie Nind and Iva Strnadova (Read more) ask whether we include in a realistic way people with the most complex disabilities in our vision of a society in which everyone belongs. Jo Grace (Read more) reports from the Raising the Bar conference, a national event which aims to develop and apply good practice for this group. And Jan Walmsley (Read more) 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 which all of us – professionals, campaigners, policy makers, self-advocates and advocates – must look in the mirror and attempt to answer honestly. Dreenagh Lyle’s new book (Read more) about this group of people, who occupy the most complex end of the range of conditions we call learning disability, asks 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 that this group has? When we say that everybody can be independent, work, make their own decisions and choices and be active participants in their communities, are we unconsciously excluding people with the most 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 belong as we would wish them to belong, and in the process make it impossible for them to belong?
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 in particular their parents and wider families. They have too often been seen as an obstacle to independence rather than a critical cog in the wheel of belonging, people who often dedicate their whole lives to ensuring that their sons and daughters belong in some way. A re-think is needed, and the important work of academics such as Nind and Strnadova in alliance with carers, and the dynamic parent/ professional partnership of the Raising the Bar movement, are a good starting point.
2020 – any room for optimism?
We could all be forgiven for ending 2019 in a state of profound gloom, and looking forward into 2020 with equally profound 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, 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 and courageous parents all of whom have had to endure the suffering and ill-treatment, and sometimes even the deaths, of their sons and daughters, under these appalling regimes. Our interview with Leo Andrade, one of these parents, (Read more) shows just why this alliance will, in the end, win. Demonstrations outside the Department of Health, shocking publicity in national newspapers and on television, powerful movements like #humantoo and Rightful Lives 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.
