‘Lies, damned lies and statistics’

People with learning disabilities experience far poorer health than their non-disabled peers. Now is the time for us to recognise this disparity and address these health inequalities. Whilst mindful of the warning of the British Prime Minister Benjamin Disraeli who coined the phrase ‘Lies, damned lies and statistics’, what do we actually know about the lives of people with learning disabilities when it comes to the hard facts and numbers?

People so-labelled 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 damning data. People with learning disabilities die on average 24 years younger than their non-disabled peers; men die on average 13 years and women 20 years sooner than those without learning disabilities.

The Equality and Human Rights Commission and FPLD found that people with learning disabilities:

  • Are 2.5 times more likely to have health problems than other people;
  • Have a much greater propensity to develop physical and mental health problems compared with the general population;
  • Experience higher rates of hospital admission (76 per 1000 adults) compared with non-disabled people (15 in 1000);
  • Are more likely to find it more difficult than others to describe their symptoms leaving some problems undetected;
  • Have reduced access to generic preventative screening and health promotion procedures, such as breast or cervical screening;
  • Only 44.2% of those eligible received an annual health check;
  • Are let down by a lack of collaboration between GPs, primary health care teams and specialist services;
  • Are prescribed anti-psychotic medication in absence of psychiatric illness (13% of all people so-labelled);
  • Are subjected to systematic abuse, dangerous restraint methods and needless suffering in the care of the NHS.

We need to act now to challenge these injustices and promote enabling forms of support such as self-advocacy, supported employment, and community living.

In a time of Brexit

In a dramatic week for Britain, an important report about the rights of marginalized groups, including disabled people, has gone largely unnoticed by the mainstream media, Katherine Runswick-Cole explains what the report is and why it is important for disabled people.

It has been a tumultuous week in British politics in which Brexit has dominated the headlines. And so the publication of a report by The United Nations Committee on Economic, Social and Cultural Rights barely got any airtime, despite the fact that the authors of the report expressed “serious concern” about the impact of regressive policies on the enjoyment of economic and social rights

This was a damning report that should have hit the headlines. The committee found that since 2010 the austerity measures have had a disproportionate adverse impact on the most marginalized and disadvantaged citizens including women, children, low-income families, those with two or more children and disabled people.

The committee recommends that the UK reverse the cuts in social security benefits and use of sanctions.

In uncertain times, a breach economic and social rights of those most marginalized in society has been hidden, we need to pull this report out of the long shadow cast by Brexit.

Please help us by sharing the report: http://tbinternet.ohchr.org/_layouts/treatybodyexternal/SessionDetails1.aspx?SessionID=1059&Lang=en

We must ALL join the fight against disablism

The news on the 29th April 2016 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. 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. 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 . The report, again by the Care Quality Commission, 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. 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. We are all people first. We should not forget this.

This piece was originally posted on on the 4th May 2016 and is written by Dan Goodley, Rebecca Lawthom and Katherine Runswick Cole

What's happening to people with learning disabilities in Australia?

Here at Humanactivism we are keen to find out about the lives of people with learning disabilities in other countries. We know that services are being cut around the world. In this free event we have invited Professor Leanne Dowse from the University of New South Wales to tell us more about the state of play in Australia.

Australia is currently undertaking the biggest change in a generation to the way disability support services are delivered. The Australian National Disability Insurance Scheme (NDIS) promises a new world of personalised funding and the development of a ‘market’ for disability services. This shift, similar to those that have taken place in the UK over the last decade, moves away from block funding to service providers, and promises to make choice and control over their supports a reality for Australian disabled people.

What’s New Down Under for People with Learning Disabilities? A workshop on Australia’s National Disability Insurance Scheme
Presented by Associate Professor Leanne Dowse, University of New South Wales, Australia
Friday September 30th, 2016, 1.00pm – 4.00pm, BRG.78, Lecture Theatre 1,
Brooks Building, Birley Campus

Manchester Metropolitan University
Travel details: https://www2.mmu.ac.uk/hpsc/contact-us/travel-and-parking/
Book your ticket here: https://www.eventbrite.co.uk/e/whats-new-down-under-for-people-with-learning-disabilities-ndis-tickets-27348830087
For more information and for any access requirements, please contact:
k.runswick-cole@mmu.ac.uk
Presented by Leanne Dowse and including video messages from Australian Self-advocates, this workshop will explore what this change means for people with learning disabilities in Australia, including:

  • The kinds of changes the NDIS will bring
  • What is good about the changes,
  • What is not so good about the changes
  • How having a say has been important for people with learning disabilities and their families and for the NDIS.

The workshop will include discussion about how the experiences of self-advocates, their families and their organisations in the UK can help those in Australia make sure that the NDIS is right for people with learning disabilities.