For many years now I’ve been campaigning for the learning disability community to have a voice and be heard by the people who make decisions that affect them. As someone with lived experience who has defied the odds to marry, have a family and a career, I’m highly conscious that I’m the exception to the rule.
Societal attitudes are such that the majority of people like me are simply not encouraged – and therefore not supported – to live ambitious lives. So what keeps me awake at night is my determination to change societal attitudes towards people with learning disabilities.
Late last year, a Public Health England report identified that people with learning disabilities died of COVID19 at more than 6 times the rate of the general population during the first wave of the pandemic. The report also found there was even greater mortality rates among younger adults, with people with learning disabilities aged between 18 and 34 being 30 times more likely to die with the virus than their counterparts in the general population.
I find these facts hard to come to terms with – but alongside the harsh reality of how people with learning disabilities were physically effected by the pandemic I’m equally astonished at how little thought was given to what I call ‘the simple stuff’ – accessible information for example.
It was incredibly difficult to understand some of the rules and restrictions (which changed rapidly), as there was little if any accessible information available. In the period from mid-September to the beginning of November 2020, coronavirus regulations in England were changed six times, yet the Government rarely published easy read or simplified versions of their coronavirus guidance. This means one of the most vulnerable groups in society, at the highest risk of death from COVID-19, could not access information about how to stay safe, or about what they could and could not do. I find this incredibly worrying.
I must say though, that I consider myself one of the lucky ones. My personal experience was made more bearable because of the tremendous support I received from colleagues at SeeAbility, HEE and Learning Disability England. Like many others, I was able to continue working virtually and they helped me to stay focused so that I could I also support my own team. My being at work also had a positive effect on my family – as a key worker my daughter was able to attend school and this has helped both her and my wife.
So, how can the views of people with lived experience be used to shape services going forward into the post covid era?
SeeAbility’s Chief Executive Lisa Hopkins, recently made the point that social care urgently needs a ‘Marcus Rashford moment’ or a ‘Me Too’ movement too – so that people can bring their own lived experiences into the public eye and thereby influence policy and system-wide change for a better social care future.
In my role as Head of Engagement at SeeAbility, I lead a team of Associates, people with lived experience of learning disabilities who are committed to making life better for others with learning disabilities, autism and sight loss. They are passionate about making society more inclusive and are learning new skills in campaigning, public speaking and leadership so they can help change society for the better. As Emily, a former Associate, who now has a paid role as SeeAbility’s first influencer says: “We don’t want to be spoken for, we have our own voice and want to be heard.”
One of Emily’s first significant pieces of work is to lead the process for SeeAbility feeding into the Government’s consultation on the national strategy for disabled people. This and further projects in the coming months are giving Emily the opportunity to raise people’s voices who otherwise might not be heard.
Emily’s Influencer role and the passion of our Associates team is co-production at its best. We all have things to share which we hope will make life better for others with learning disabilities, autism and sight loss and we’re keen to let MPs know how they can support SeeAbility’s work too. Creating a more inclusive society is what drives me.