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:
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.
Save Self-Advocacy!! #NoVoice
The Department of Health has signalled that it is likely to end funding for the National Forum of People with Learning Disabilities and the National Valuing Families Forum from March 2017. This announcement has prompted very real fears that the voices of people with learning disabilities will not be heard.
As it stands, it looks as if just two years after the publication of “No Voice Unheard, No Rights Ignored”, the voices of people with learning disabilities will effectively be silenced at the national level. Cuts to self-advocacy come at a time when our research found that self-advocacy offers vital support to people with learning disabilities, particularly in a time of austerity.
As part of our research, people with learning disabilities told us why self-advocacy matters to them:
- ‘Campaigning for things that we are passionate about fighting for our rights’;
- ‘Provides help and advice for people who are having problems with their life’;
- ‘Helping other people with learning disabilities to speak up’.
- ‘Being a self advocate has given me more confidence at
- meeting new people and helped me get a job and also live on my own’;
- ‘Coming to my advocacy group has helped be to have more confidence in my ability to live on my own, and be a part of the community’
We found that:
- Often people with learning disabilities are the people best placed to support decision making in the lives of other people with learning disabilities;
- Relatives, friends and supporters of people with learning disabilities felt equally supported by self-advocacy groups;
- Self-advocacy groups take many forms. Some are based in services, others in residential homes and many others in the community;
- Self-advocacy promotes resilience of people with learning disabilities and their families;
- The cuts have led to the closure of numerous local self-advocacy groups which leaves many people with learning disabilities and their families isolated and lonely in the community;
- Many self-advocacy groups have expertise around person centred planning, community living and employment that service providers and policy makers are learning from.
Self-advocacy groups play a crucial role in the lives of people with learning disabilities and that funding to self-advocacy services should not be cut.
Follow the campaign to save self-advocacy #novoice.
The government has published its long awaited Green Paper on work health and disability, and as one Twitter user commented with deep irony, ‘try to contain your enthusiasm’. But what are the implications for people with learning disabilities?
This reaction to the publication of the green paper is hardly surprising when you know that the UK’s disability employment gap stands at about 32% with less than half of disabled people in work - 48%. This compares with 80% of their non-disabled peers who are in work. If you are a person with a learning disability, your chances of being in paid work are woefully low – about 5.8%. This figure has changed little over the last twenty years, but shockingly, in realm terms, it is currently falling.
Successive governments have failed to address the disability employment gap. The hope, then, is that the publication of the consultation paper will re-ignite the debate about disability, health and employment. There is a desperate need to talk about work in the lives of disabled people. Many people with learning disabilities can work and want to work. An employment rate of 5.8% represents a scandal – it represents the exclusion of people with learning disabilities from the many benefits of working life: financial wellbeing, health and community inclusion. But not all disabled people are able to work and so access to work can never be the only route for people to feel secure, financially and emotionally, and included in society.
At the same time as the government hails work as the route out of poverty and marginlisation for disabled people, the support available for them to find work is under threat.
But it shouldn’t be.
We know that, with the right support, many people with learning disabilities can work. We also know that this support needs to start early and that young people with learning disabilities and their families and allies need good support to make aspirations around employment a reality.
Take for example, Charlie’s story. Charlie was in his late forties when he got his first job, but he has been happily working in that job for the last ten years.
Case Study: Charlie’s Story
Charlie is in his fifties and lives with his wife in a city in the south of England. He enjoys local amateur dramatics, runs and dances. Charlie works for the city council in their meal’s service. The meals service provides hot lunches for people in the city who are in need of their support. Charlie works every day and does a range of tasks during the week including re-cycling, shredding, scanning, filing, cleaning and making teas and coffees. When Charlie applied for the job he was offered a ‘working interview’ where he tried out tasks in order to secure the post. He also had the support of a job coach when he started work. The job coach worked with Charlie to make a checklist for daily and weekly tasks that Charlie uses on a day-to-day basis.
So following our research, our message to government is to do what works:
- The Department for Education should strengthen employment as a strand within the transition review for young people with Special Educational Need and Disability (SEND) aged 14 - with a requirement to engage with supported employment providers which continues at every subsequent review of the Education, Health and Care Plans (EHC);
- The Department for Education should allow for the continuation of EHC plans for young people to twenty-five in employment, but not in education;
- The government should promote the principles and processes of Supported Employment as the key to getting more people with a learning disability into work
- The government should promote a national register of job coaches backed by emerging quality standards to support training and development;
- Each local authority should be required to provide opportunities for supported internships linked to good quality job coaching for people with learning disabilities in their area;
- Each local authority should be required to develop pathways to employment for people with learning disabilities linked to outcomes based commissioning;
- Employment support should be included as an outcome in personal budget planning.
Written by members of the Humanactivism.org team Katherine Runswick-Cole*, Dan Goodley ** & Keith Bates***
* Manchester Metropolitan University, **The University of Sheffield, ***Mutually Inclusive Partnerships