This week is Learning Disability Awareness Week.
Throughout my childhood, I was struck so often by other people’s definitions of ‘normal’ and how they had to understand where my brother fit in. People loved to ask me, ‘What’s wrong with him?’ I was taken aback. There wasn’t anything wrong with him - He was my big brother, and he was annoying, but there was nothing wrong with him.
My brother is the inventor of the ‘Blue Velvet Cake’ (why stick with red when your favourite colour is blue?), an expert at the video game ‘Assassins Creed’, and would describe himself to you as a ‘food monster’ and ‘the funniest Runswick-Cole.’ (If you’re curious, in his ranking I am the 3rd funniest of the 4 of us, a crushing blow to my self-esteem).
My brother has a diagnosis of autism and a learning disability.
Life with a learning disability has not been made easy. There are many inequalities facing the 1.5 million people on the Learning Disability Register in the UK (note: not everybody with a Learning Disability will make it onto this register), almost all of which have been exacerbated by the pandemic. The Coronavirus Act (March, 2020) threatened legal rights to support, such as direct payments and care plans, that are outlined in the Care Act (2014).
If you have a learning disability, you are statistically 6 times more likely to die from Covid-19 than someone without a learning disability; and if you’re aged 18-34 with a learning disability you are 30 times more likely to die from Covid-19 than your peers. There was also widespread inappropriate use of ‘Do Not Resuscitate’ orders for people with a learning disability You can hear about what the experience was like in the early stages of the pandemic in this interview by Jon Snow with Disability Campaigner Doug Paulley and my mum, Professor Katherine Runswick-Cole.
As we move forward, into the Covid Recovery space we need to reflect on the inequalities experienced by people with learning disabilities before, during and after the pandemic. Even before Covid-19, people with learning disabilities and/or autism were already among the most disadvantaged members of society with a life expectancy 20-30 years less than their non-disabled peers. This was never acceptable, but the pandemic has shone a light on this inequality and we cannot turn away from the need for change.
For if we are to truly ‘Build Back Better’, we have to take everybody with us.
P.S I hasten to add that everything I write about comes out of my experience knowing and loving one person, with a learning disability. William’s life is not a representation of all people’s lives with a learning disability, and my experience is fundamentally that of being his little sister. To learn more from self-advocates I encourage you to check out The Rightful Lives Exhibition and the Self-Advocacy map.
Bio
Imogen is an Oxford Graduate and Civil Servant, currently working on Covid-19 response.
