GUEST BLOG 4

Today we have another guest blog from Amanda. This is a topic that is very close to my heart and I will be writing more about this soon.

Take care everyone and keep hoping forward!

Hope for a Fairer Society

My background working in social care has led me to see the impact of the welfare state of people’s lives and the need for its reform. There are some hidden and scandalous truths about life in this country that most people will not know about apart from the news headlines.

Today I was asked by a colleague of mine who is very politically active: “In your opinion what are the biggest crises or injustices we should focus on?” He listed them under 3 key areas: Justice and Poverty; Environment and Climate and Democratic Crisis and Corruption. My answer related to my experiences in adult social care, but they are just the tip of the iceberg. Under the heading‘Injustice’I replied:

“People with a learning disability or autism who may experience mental health issues or communicate using behaviour that is seen by others as ‘challenging’ are incarcerated in hospitals with poor quality, sometimes abusive care, sometimes in seclusion for years, away from their families with seemingly no rights or powerful advocacy nor hope of getting home despite the legally required reviews and the Mental Health Act legislation. People in this situation experience less rights than convicted murderers who at least know when they are getting out of prison.”

Just one of the scandals linked to this and the extent of the abuse people suffered hit the press in 2012 through a BBC Panorama programme[1]. Another recent scandal to explode onto the headlines was in Durham at Whorlton Hall[2]. The scenes recorded are shocking and an indictment on a society which believes itself to be ‘civilised’. Sadly, there are more cases; the story of Bethany, a young woman and her dad’s fight to get her home and out of St Andrew’s Hospital, an assessment and treatment unit in Northampton where she was kept in seclusion for 21 months from age 15. Her father reported her food was slid across the floor “like feeding a vicious dog”[3] and she was in a windowless furniture-less locked ‘cell’[4] with barely any human contact. These real-life stories are heart-breaking and make me cry.

Another discrimination or injustice people with learning disabilities face is dying much younger than the rest of the population, with men dying 13 years younger and women 20 years younger than the rest of the population as demonstrated in the Bristol research from 2013[5]. This comes in tandem with massive health inequalities and unnecessary deaths as defined by a government department NHS England in their LeDeR Programme which looks into unexpected deaths of children and adults with learning disabilities[6]. The fact there is a government funded programme to investigate what is happening demonstrates there is a massive problem. Prejudice is sadly apparent in the NHS where during the initial Covid 19 crisis Do Not Resuscitate orders were placed upon people with learning disabilities just because they had a learning disability, without a health complaint to justify it and without being consulted, which is believed to be illegal[7]. This makes me literally feel sick. Some of my best friends have a learning disability. This news will not be popular to those who believe in the much-loved institution of the NHS. But these are the stories of the marginalised and often forgotten few, who amount to 2% of our population or approximately 1.5million people. It may shock you that many members of our society are treated this way by our government institutions.

The recent scandal regarding the slow government reaction to supporting older people in care homes during Lockdown One[8], was eclipsed by an even slower response for adults with learning disabilities living is residential settings or shared living arrangements. Kate Lee the Chief Executive of the Alzheimer’s Society said about the population of older people in residential care homes “it feels like they are being written off.”[9] While the lack of support to keyworkers supporting citizens classed by the government as ‘vulnerable’ adults in the community,including guidelines and protection (PPE) for them and the people they were supporting, was appalling and appears to have been a epic oversight with the focus for the majority of the initial lockdown period being on the NHS and hospitals.

This all seems rather grim but there is hope as people, including my colleague, fight for a more just society and modernisation of the welfare state to ensure that the welfare state primarily helps us to ‘live together as equals, in particular, as equal citizens.’[10] This fight includes exploring Universal Basic Income as a way to radically transform the way we live.[11]

Quotes like this help me understand the massive shift I believe we need to make as a societyin our thinking about the welfare state from one where the headlines are “Welfare to Work policy ‘casts the disabled as cheats’”[12]to one where we believe that eradicating poverty is essential because ‘poverty means you lack what you need to live as an equal with others.’[13] As Duffy states;

‘In fact the man who named the welfare state the ‘welfare state’ was Archbishop William Temple and he had a very different vision of the kind of welfare state we really need. Temple’s vision put love at the centre of welfare’[14]

He envisioned a welfare state where,as John O’Brien promulgates, we ‘…discover the ways that love… can generate a way of living together that embodies justice, humanity, spirit, equality and community.’[15]For me a new understanding of equality is needed. A new level of connection between members of society to understand how alike we are and as a colleague who has Down’s syndrome recently said to me “We are more alike than different!” This young woman and other colleagues give me hope. Hope for a society free from poverty, free from prejudice and free to give and receive, respecting all the difference we represent, including all our different skills, abilities and gifts to each other. I want to finish with this amazing quote of hope from another man of hope Martin Luther King:

‘Justice is love correcting that which revolts against love.’[16]

The recipe of hope today is, think about what you hope will change in society.Is there something you can change or do to make it a fairer, more kind and just world to live in?

This could be as simple as talking to a stranger or a neighbour you’ve never met or reading about political parties’ views on welfare benefits or joining with others voices to call for peace, justice and equality.


[1]www.bbc.co.uk/news/uk-england-bristol-20078999

[2]https://www.bbc.co.uk/news/health-48367071

[3]https://news.sky.com/story/autistic-teen-girl-locked-up-24-hours-a-day-shes-not-an-animal-says-father-11849347

[4]https://www.bbc.co.uk/news/uk-england-birmingham-50661612

[5]https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf

[6]http://www.bristol.ac.uk/sps/leder/

[7]www.independent.co.uk/news/health/coronavirus-do-not-resuscitate-dnr-learning-disabilities-turning-point-a9561201.html

[8]www.alzheimers.org.uk/news/2020-05-13/care-homes-left-fend-themselves-against-coronavirus

[9] Ibid

[10]www.centreforwelfarereform.org/uploads/attachment/487/citizenship-and-the-welfare-state.pdf p22

[11]https://www.centreforwelfarereform.org/uploads/attachment/739/an-introduction-to-basic-income-plus.pdf

[12]www.theguardian.com/society/2011/jul/24/welfare-policy-incites-hatred-disabled

[13]From talk to the Urban Theology Unit in Sheffield by Simon Duffy in 2019

[14]www.centreforwelfarereform.org/library/love-and-welfare.html

[15]www.centreforwelfarereform.org/uploads/attachment/530/love-and-welfare.pdf p7

[16] Martin Luther King in his Address to the Montgomery Improvement Association, 1959 in Love and Welfare, Duffy S, 2016, Sheffield, Centre for Welfare Reform, p6

Published by hope2020exchangingdisappointmentforhope

I am a qualified social worker and run a community project for vulnerable adults. I am passionate about social justice. I feel that every life matters. No-one is insignificant or invaluable. I also believe that everyone has the power to change, although some may not wish to. Essentially, I believe in hope. Hope Wells is my writing name.

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