At the All Wales Participation Network this year, Joe Powell set the tone with a powerful opening speech about the importance of full participation in society for people with learning disabilities. Joe was diagnosed with Asperger’s Syndrome in 1996 and has spent 11 years in social care. He is now National Director of All Wales People First; a group uniting the voices of self-advocacy groups in Wales. Joe drew on his first hand experience of fighting to leave a system that was determined to see him purely as a service-user, someone needing assistance, and not as someone who also had a lot to offer to his community.
Joe began his talk by outlining ‘The good life model’; values that are important to the people with learning disabilities Joe has spoken to. These values included ‘loving and caring relationships’, the choice that is derived from having some wealth (implicitly this includes control over one’s financial assets), a ‘contributing place in the World’ and ‘a home of my own’. The first thing that struck me was how similar they are to what a non-learning disabled person wants from their own life – these values seemed universal, as opposed to learning-disability specific. All of the values were, to my mind, underpinned by a balance between personal safety and security on one hand and on the other a sense of being able to take agency over one’s own life and further, contribute something to the lives of others. Isn’t this what everyone wants form their lives?
Many people with learning disabilities also have a visual impairment and some of these people were not taught to read at school. Simple measures such as offering easy-read information and audio format can make it possible for people with learning disabilities to access information without having to rely on a friend or carer to read it to them. This allows people to maintain a sense of independence and dignity, rather than become institutionalised, especially where the information concerned is of a private nature.
Given that what people with learning disabilities want is so similar to what the wider population aspire to, one could be forgiven for assuming that these desires are readily accommodated in learning-disability care and are empathised with by society. However, Joe explained that in reality people with learning disabilities are effectively ‘retired at the age of eighteen years’; rarely in employment and often even excluded from volunteering. The mentality behind such sidelining appears to be that anyone with a learning disability is a ‘service user’ and therefore in need of assistance. Whilst many people with learning disabilities are indeed users of services, this does not mean that they are not capable and eager to give assistance in their communities and contribute meaningfully not only to their own lives, but also to the lives of others.
This restriction in participation is not only a massive loss in terms of potential volunteering and employment opportunities but also completely contrary to the principles of the All Wales Strategy 1983. The strategy stipulates that people with learning disabilities have the right to choose their own patterns of life within their communities and to access to professional services where additional help is necessary for them to achieve this.
People with learning disabilities largely DO want to work and to volunteer, said Joe, and we need to make more of an effort to accommodate their needs in theses capacities. Prejudice stems from ignorance and when people with learning disabilities are visible in useful roles, this will make it harder to stereotype them as a burden and give credibility to their voices.
Joe’s closing remark, before inviting questions from the floor, was that participation for people with learning disabilities must be realistic and never tokenistic. We must make it possible for people with learning disabilities to enter the workforce with reasonable adjustments made if necessary only when they are capable of fulfilling that role.
If you would like to hear more from Joe Powell, you can keep up with Joe’s Soapbox.
The ‘Storify’ for the day, including Joe’s presentation, other resources from the event as well as delegate’s contributions via social media is available here.