Planet Rachael: we must unite to protect the lives of people with learning disabilities

Black Lives Matter has shown how powerful a social movement for change can be

The horrific death of George Floyd has led to positive social change

You, like me, will have been horrified at the death of George Floyd.

And, like me, you will also have been impressed by the social movement for change that it has created on both sides of the Atlantic.

White leaders are being held to account, statues of people linked to the slave trade are being torn down, and white celebrities are publicly apologising for programmes where they wore black make-up and found humour in prejudice and difference.

• RELATED: Specialist training is essential to meet the needs of people with learning disabilities

There have been similar deaths of people with learning disabilities on both sides of the Atlantic. Ethan Saylor, a man with Down's syndrome, was killed while being arrested after refusing to leave his cinema seat after the film he was watching had ended. His cause of death was recorded as homicide by asphyxiation. Evidence suggests Ethan would not leave his seat as his carer had told him to stay there while she went to get the car.  

Institutional failures have led to avoidable deaths

The UK has not been immune to scandals – albeit our context is different – and they involve gross failures in care, such as the case of Richard Handley – also with Down’s syndrome – who died in an NHS hospital following complications of constipation, or Connor Sparrowhawk, a teenager diagnosed with autism, learning disabilities and epilepsy, who drowned in a bath at an NHS residential care unit.

• RELATED: Trust fined £2 million after admitting neglect in 'completely avoidable' deaths of two vulnerable patients

However, what is striking is that whether the scandal involves individual or systemic concerns, none have galvanised thousands of people to march on the Houses of Parliament or Times Square – and no actors have apologised for past representations of people with learning disabilities. The inconvenient truth, highlighted by the Black Lives Matter protest, is that it does not appear that all lives matter.  

People with learning disabilities need to be more visible

While one can never truly walk in another’s shoes, most of us will have experienced some sort of discrimination in our lives, just not in the context of cognitive impairment. Rachael most certainly has.

Stories about learning disabilities that make the media rarely include the nicer life events, it is mainly those that involve tragedy, consequently people with learning disabilities are invisible to the larger population. Until this changes and people connect more to the non-neurotypical world, the lives of people with learning disabilities will be hidden and the advocacy of a wider social movement will be absent.

We must stand together – albeit two metres apart during the pandemic – and march for all.

Wendy Johnson is head of safeguarding adults at risk, head of mental health and nursing lead for learning disabilities at Great Western Hospital NHS Foundation Trust, Swindon. She writes about life with her daughter Rachael who has autism

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