Dan Goodley (University of Sheffield), Katherine Runswick Cole (Manchester Metropolitan University) and Rebecca Lawthom (Manchester Metropolitan University)
The news last Friday that an NHS Trust has failed its patients raises huge questions about the quality of health services for people with learning disabilities. But it also highlights how we – as a society – continue to devalue the lives of people with learning disabilities. There is an urgent need to build a wide collective that fights injustice in the lives of people so-labelled.
On Thursday 4th July 2013, 18 year old Connor Sparrowhawk had an epileptic seizure and drowned in a bath at Slade House in Oxford, an Assessment and Treatment centre run by Southern Health NHS Trust. Connor had learning disabilities. He was, of course, much more than this. His nickname was Laughing Boy, he loved London buses, music, cakes and was a much loved member of his family. An external investigation found that Connor’s death was preventable [1]. The Care Quality Commission inspected the unit at Slade house and said that it did not meet the required standards. The unit is now closed to new patients. Connor’s family – including his mother Dr Sara Ryan – set up the @JusticeforLB campaign to seek answers around his death and accountability. Their activism led to a number of independent inquiries and reports: details of which you can find on the campaign website [1]. These investigations revealed hundreds of unexplained deaths of people with learning disabilities who were under the care of Southern Health. We now learn today, over two and half years since Connor’s death, that Southern Health continues to put patients at risk [2]. The report, again by the Care Quality Commission [3], reveals systemic failings and neglectful services. Clearly, Southern Health will have to respond to this damning review of their services. And of course there are huge concerns raised about the responsiveness of services, the style of governance and quality of leadership. But, this report should act as a catalyst for wider soul searching and self-critique in our wider communities in relation to the ways in which we all do – or do not – value the lives of people with learning disabilities.
Disabled people and their representative organisations have long argued that our society is marked by the stains of disablism: the exclusion of people with impairments from wider society. Disablism is endemic. People with learning disabilities are more likely to be exposed to common social determinants of poor ill health and low psychological well-being including poverty, poor housing conditions, unemployment or poor employment support, social disconnectedness and overt discrimination. A brief forage around the internet reveals some some harrowing data. Here are some headline figures. People with learning disabilities:
Die on average 24 years younger than their non-disabled peers;
Are 2.5 times more likely to have health problems than other people;
Experience higher rates of hospital admission (76 per 1000 adults) compared with non-disabled people (15 in 1000);
Are prescribed anti-psychotic medication in absence of psychiatric illness (13% of all people with learning disabilities);
Are subjected to systematic abuse, dangerous restraint methods and needless suffering in the care of the NHS.
These facts and figures constitute a national scandal. We need to act now to challenge these injustices in our communities. The case of Connor Sparrowhawk highlights the fact that the search for justice and accountability tends to only happen when people with learning disabilities and their families fight for their human rights. Too often, though, this is a fight for recognition: that people with learning disabilities are full human beings just like anyone else. And people with learning disabilities and their families risk being dismissed as unreasonable and vindictive agitators [4]. Disablism is not simply something that disabled people and their families should fight alone. We need to broaden the fight against the dehumanisation of people with learning disabilities. Unless we as a wider society start to share the struggle then individuals and families – such as Connor and his loved ones – will remain marginalised from our communities. Competing against disablism is one that we all must share – across health, social care and education – and in the daily mundane, everyday encounters that we have with one another. Many years ago people with learning disabilities came together – across the globe – under the banner of self-advocacy: to individually and collectively speak up about their aspirations and ambitions. And the label that many chose for their self-advocacy groups was this: People First [5]. We are all people first. We should not forget this.
[1] http://justiceforlb.org/
[2] http://www.bbc.co.uk/news/uk-england-36160553
[3] http://www.cqc.org.uk/content/southern-health-nhs-foundation-trust-still-not-doing-enough-protect-people-its-care
[4] http://justiceforlb.org/a-culture-of-candour-justiceforlb/
[5] http://peoplefirstltd.com/
Big Society, Disability and Civil Society Research 