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In the last in our series of blogs marking Learning Disabilities Week 2015, Sarah Marsay, Public Engagement Account Manager in NHS England’s Patient and Public Participation and Insight Group, reflects on her experiences as a co-worker to ‘Joanne’, and the lessons she learned which can be applied to how health and care professionals provide support to people with learning disabilities.
Earlier this year I spent two weeks in Japan as the co-worker of Joanne, a woman with learning disabilities. As this week is Learning Disability Week, I have been reflecting on what I learned during that fortnight. You can read more about the time that Joanne and I spent in Japan in the four blogs we wrote together. This blog is just written by me, as it’s about what I learned from working with Joanne. I am not a person with learning disabilities, and I do not consider myself a ‘learning disabilities expert’, but I want to share how this experience has shaped and changed my outlook.
I learned, firstly, that Joanne and I have a lot in common. We both value our independence and the ability to make our own choices. We both want to work and to contribute to society. We both care deeply about our friends and our families. Equality and fairness are really important to us both. We both have ideas and hopes for things we want to see, do and experience in the future.
We also have a lot of differences. Most of these are about our different skills and personalities, and should therefore be embraced. But many of these are about the life chances and opportunities which I have had but Joanne has not.
I learned first-hand, as well as from listening to Joanne’s experiences, about the assumptions people make, and have made, about Joanne – and about everyone who has a learning disability – which limit or restrict what is ‘possible’.
I learned about prejudice, which makes achieving even modest ambitions very difficult for people with learning disabilities. It did, and continues to, make me angry that people routinely define Joanne by her learning disability; that they immediately make assumptions – and place limits – on what they think she can do, and the life they think she could or should lead.
‘Valuing diversity’ and ‘striving for equality’ have become almost clichéd statements, certainly in the public sector. It follows, then, that it is accepted that people with a learning disability have no less right to lead the life they want to lead than people without a learning disability. On paper this seems obvious. In fact, and based on the real life experiences of people with a learning disability, the reality rarely matches the rhetoric.
As I work within the NHS, I wonder how different it would be if every time a health or care professional considered a patient or service user with a learning disability, they considered the individual. If they asked the questions: “if this was my brother, my sister, my daughter or my son, is this what I would want for them?”; “If this person did not have a learning disability, would I consider this good care, would I consider this a good outcome?”.
I believe empowering and enabling people with learning disabilities to live independently and to take on real jobs, for real wages, is essential if we are to challenge the outdated views which persist – which is why Wednesday’s announcement that the NHS intends to lead the way in this area is so welcome.
It is vital that people, especially young people, with a learning disability, see others in work and living the lives they want to lead. Aspiration and ambition are important to us all.
It must be possible for more people with learning disabilities to enjoy rewarding and rewarded careers, and for others with learning disabilities to see that paid employment is a realistic ambition for them. Work is important to our identities – consider how often you introduce yourself with your job title and who you work for – and it is important to our sense of self-worth.
We all have a role to play in challenging prejudice and in enabling people with learning disabilities to have the same life chances as people without learning disabilities. As part of Learning Disability Week, I commit to doing my best to see and treat every person with a learning disability I meet as an individual, with hopes and dreams no less valid than my own, and to working by the principle of “no decision about me, without me”.
I hope that many more professionals will do the same.