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Disability History Month

UK Disability History Month

16th November to 16th December 2023

This year, UK Disability History Month (UKDHM) focuses on the experience of disablement amongst children and young people in the past, now and what is needed for the future to reduce the stigma, stereotypes, negative attitudes and socially created barriers in the environment and the way things are organised.

Dr Sarah Wigham, Senior Research Associate

To mark UK disability history month, we caught up with colleagues Sarah Wigham (Senior RA) and Simon Hackett (Clinical Senior Lecturer) to find out more about their research about improving access to healthcare for people with Learning Disabilities.

Dr Simon Hackett, Clinical Senior Lecturer

What is the focus of your research?

Our research projects focus on the health care and health needs of people with a learning disability. People with a learning disability experience high levels of inequality in their health and marginalisation in access to health care services compared with the general population. Our research aims to develop resources that may help to reduce some of these barriers and inequalities.

One area of our work focused on how barriers that people with a learning disability face accessing primary care could be removed. We worked with people with a learning disability to create ten recommendations to make accessing the doctor’s surgery easier for people with a learning disability.

Why do you think this research is important?

Research has shown that people with a learning disability die much younger than the general population. The average age of death for people with a learning disability is 61 years compared with 81 years in the general population (LeDeR, 2018). They have more mental and physical health problems and more problems accessing health services.

Many people with a learning disability are prescribed medication. A key aim of the UK Government NHS Long Term Plan is to improve understanding the health needs of people with a learning disability and reduce use of medication for people with learning disabilities.

What are the main challenges?

Primary healthcare systems may not be accessible for people with a learning disability. For example, people with a learning disability may have problems using the telephone appointment system. Annual health checks which are carried out by general practitioners (GPs) and nurses can help to identify health problems and address health inequalities experienced by people with a learning disability. However, our research shows that primary care systems are organised in ways that can create barriers and make it difficult for people with a learning disability to access.

We also found that there are barriers to the identification of mental health conditions among people with a learning disability in primary care.

What are the biggest opportunities to reduce the stigma around disabilities?

We published our findings from a recent study in the British Medical Journal Open and we hope that lots of nurses and doctors working in primary care will read the article and that it will help improve access to primary care for people with a learning disability. You can find out more about our work on improving access to primary care for people with a learning disability in recent outputs:

Improving access to primary care and annual health checks for people who have a learning disability: a multistakeholder qualitative study 

Factors associated with the identification of mental health conditions among people with learning disabilities in primary care: A scoping review

Reference

(LeDeR) (2018) The Learning Disability Mortality Review Programme Annual report 2020

Categories
Book Club Disability History Month

Book Club: Disability History Month

18th November – 20th December

Recommendations from the Lit & Phil https://www.litandphil.org.uk

So Lucky

Mara Tagarelli is on top of her world. She’s the head of a multimillion-dollar AIDS foundation, an accomplished martial artist, and happily married. She has never met a problem she can’t solve — until suddenly she can’t solve any of them. In a single week her wife leaves her, she is diagnosed with multiple sclerosis, and she loses her job.

Now everything begins to feel like a threat. At first, she thinks it’s just her newfound sense of vulnerability. Then she realises the threat of violence is real, deadly, and heading straight for her.

Nicola Griffith’s So Lucky is fiction from the front lines, incandescent and urgent, a narrative juggernaut that rips through sentiment to expose the savagery of the experience of becoming disabled and dismissed.

Neurotribes: The Legacy of Autism and How to Think Smarter About People
Who Think Differently

What is autism: a devastating developmental condition, a lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more – and the future of our society depends on our understanding it.

Following on from his groundbreaking article ‘The Geek Syndrome’, Wired reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years.

Going back to the earliest autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long- sought solutions to the autism puzzle while casting light on the growing movement of ‘neurodiversity’ and mapping out a path towards a more humane world for people with learning differences.

Wonder

‘My name is August . I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.’

Auggie wants to be an ordinary ten-year-old. He does ordinary things – eating ice cream, playing on his Xbox. He feels ordinary -inside. But ordinary kids don’t make other ordinary kids run away screaming in playgrounds. Ordinary kids aren’t stared at wherever they go.

Born with a terrible facial abnormality, Auggie has been home-schooled by his parents his whole life. Now, for the first time, he’s being sent to a real school – and he’s dreading it. All he wants is to be accepted – but can he convince his new classmates that he’s just like them, underneath it all?

Disability Visibility: First-Person Stories from the Twenty-First Century

According to the last Census, one in five people in the United States lives with a disability. Some are visible, some are hidden but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together an urgent, galvanising collection of personal essays by disabled people in the 21st century.

From Harriet McBryde Johnson’s account of her famous debate with Princeton philosopher Peter Singer over her own personhood, to original pieces by up-and-coming authors like Keah Brown and Haben Girma; from blog posts, manifestos, eulogies, testimonies to Congress, and beyond: this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings. It celebrates and documents disability culture in the now. It looks to the future and past with hope and love.