The title of this blog was a question posed to me which took me aback. I was in a web chat with activist, trainer and consultant Simon Stevens who also has cerebral palsy “which affects my speech, mobility, hand control, balance and continence to a significant degree and has provided me with a very good sense of humour.” Simon is a Direct Payment user who employs personal assistants (and gives them “a p45” if they try to impose their wishes over his). He is radical in his views (including seeing non-disabled charity industry workers such as myself, however well-meaning, as almost inevitably part of the problem, rather than the solution), not someone who conforms or lets others take decisions for him, but instead celebrates the power of “freakism”. So it was surprising to hear him say that choice was over-rated. As we explored this further, we touched on a problem I’ve
blogged about before here, which is that personal budgets are an attempt to introduce a wider range of outcomes, but can instead leave everyone focused on the money. Simon said:
“When it’s government money [being spent on me], I need to demonstrate value for money. If we focus on outcomes, [rather than on a budget allocation], the decision making process is transparent. Working aged
adults can’t be entitled to money as a right, as this enhances dependency and has made choice a right without responsibility.”
This is an interesting point. Simon earns a living as a consultant, running a business in a competitive environment. I am attracted to the idea of a system more focused on creating responsibilities as well as
rights – the ethos of NAAPS is that we are all inter-dependent and that we all have something to contribute – but I immediately started to think about how this would apply to people who currently have limited employment opportunities, particularly people with profound learning disabilities.
It seems a failing of our current system that we have got as far as building up a rights agenda for people with disabilities, but are some way short of a responsibilities agenda, particularly for people with learning disabilities. One of the driving forces of many of the micro-enterprises which are developed and run by people with learning disabilities is the desire to contribute to their community and also to earn a wage. But this is dangerous territory: in these times of financial hardship and budget cuts, it’s easy to see responsibilities as being just about money and move from there to a world in which people with learning disabilities are warehoused in job-creation schemes in order to address the “benefits scrounger” story so beloved of a big section of our press.
One of the definitions of adulthood – and citizenship – is that you have responsibilities. When we decide that a group of adults have no responsibilities, we may protect them from poverty, but we also take risks with their personhood and citizenship. So, alongside the European and UN charters of rights, do we need a clearer sense of those responsibilities which everyone should have the opportunity to experience, a charter we would need to ensure was accessible to everyone and which valued much more than just our monetary contributions?
Escaping the invisible asylum 
I enjoyed reading this post. A quick comment on the point about people with profound learning disabilities. I think the kind of consultancy work which Simon Stevens does is precisely the kind of work which people with severe or profound learning disabilities may be able to earn money from. They have something unique to offer – their experience of living with severe or profound learning disabilities. I recently co-facilitated a workshop on relationships for local authority social workers with a young man with severe learning disabilities who does not use words, his father and his personal assistant. In terms of the level of participant engagement, it was probably one of the most successful workshops I have been involved in, and it certainly changed my view on the possibility of people with severe or profound learning disabilities working and earning money. Of course, as you say, perhaps we get too focused on the earning money bit…
Hi Alex, I agree that we need some sort of charter of citizenship responsibilities for people with disabilities, including severe learning disabilities. I really believe that Amartya Sen’s Capability Approach is helpful in this area to begin thinking about ‘how can a person have a life that they (and others) value?’ even within circumstances of adversity and also, how that person can contribute to the good life of those around him/her. The responsibility of every person to contribute in whatever way is deemed valuable or helpful to all concerned is something that should be central in planning how to live a good life. It is certainly central to all of the work at PLAN, as you know.
Warm regards from Canada! Donna
good to hear from you Donna. You make a good point, as Rachel does below. I enjoyed Sen’s Nobel Lecture on Social Choice (http://www.nobelprize.org/nobel_prizes/economics/laureates/1998/sen-lecture.pdf) and I was also trying to find some work that Al Etmanski mentioned to me by philospoher and mistic Simone Weil on a charter of responsibilities…