Independent Living & Independent Protest
Last year, I was invited by Claudia Megele, Principal Social Worker at Hertfordshire County Council, to write an article on a complex social work practice experience and what it taught me about myself and social work, and how I use that knowledge today "as someone who is a practice leader". Claudia went on to say it would be great if my practice experience could be focused on working with disability or difference.
The last part of Claudia's request took me right back to my very first experience of social care, in the autumn of 1983, when I arrived in Liverpool to be a Community Service Volunteer, equipped with a mathematics degree and bags of enthusiasm.
Writing the article was a rewarding experience, from which I learned a lot. It showed me a thread running through my professional career, from its very start, of the importance of accountability to the people I work with and serve. It also led to me being in indirect contact with Curtis (not his real name), who is still living independently, in the same flat where I met him all those years ago. I was delighted that he read the article, shared in some of its memories, and agreed to its publication.
It was published in Complexity, Reflection and Learning from Practice: Celebrating Social Work Practice & Values, a collection of practice narratives by social workers published on World Social Work Day, 17th March 2020, edited by Claudia.
I have placed the article, Independent Living and Independent Protest, on my Resources page, and it is also reproduced below.
26th May 2020
The practice experience I am going to describe could hardly have been a more important or formative one for me, as it was my very first. It contained elements of the macro as well as the micro of social work practice, and gave me a glimmer of what true independent living might actually mean. In the early autumn of 1983, aged 21 and with a mathematics degree behind me, I travelled to a northern city and to the beginning of my social work career, preparation for the beginning perhaps, an experience that would help me towards my “point of entry to training", in the contemporary language of the Professional Capabilities Framework. I had applied to be a Community Service Volunteer (CSV), and was assigned to their recently developed Independent Living Scheme (ILS). Together with another volunteer, I would be enabling a man, whom I shall call Curtis, to live independently in his own flat in the community. Most CSV placements lasted six months, whereas the ILS was for four months only, due to the perceived intensity of the role and volunteer-disabled person relationship.
It is interesting to consider, 36 years later, what I learned from this experience, and difficult to distinguish this from all I have learned since. I must have been conscious that I was learning a lot, as I was so new to social care and working with people, but I could not have known that I was in the midst of what has since been called an “independent living revolution” (Ryan, 2018), or that the pioneer of disability studies had just published the book in which he mentioned the “social model of disability" perhaps for the first time (Oliver, 1983). The way in which we provided day-to-day support was very much influenced by these developments, as we were encouraged to do so as enablers, countering social and environmental barriers to Curtis living independently, rather than as carers seeing “disability as a ‘personal tragedy’ and disabled people as in need of ‘care’” (Barnes & Mercer, 2004, p2). I shall focus here on one specific experience that crystallised these issues in a memorable way.
After less than two months, I travelled with Curtis to London, on a trip organised by what was still then called the Spastics Society. We were to take part in a lobby of Parliament occasioned by a Private Member’s Bill brought by the Labour MP, Bob Wareing, aimed at tackling discrimination against disabled people. As well as meeting our MP in the lobby, two other events took place in both of which Curtis’s full participation was compromised. First, we attended a meeting chaired by Tim Yeo, a Conservative MP who had been the Chief Executive of the Spastics Society. I cannot now recall the details of the meeting, but I do remember that at one point, Curtis wished to speak. One of my roles was to act as ‘interpreter’, as Curtis’s speech was initially difficult to understand, and Curtis asked me to make a particular point on his behalf. It seemed to me, however, that Curtis had misunderstood something, and that his point would not make sense in the discussion, and I said this. We talked in quiet voices as we were in the middle of a packed meeting and Curtis reiterated he wanted his point to be made. I write here with shame and regret that I did not put my hand up in an attempt to speak on behalf of Curtis, for by not doing so I was depriving him of his voice.
After the meeting, we took part in an impromptu demonstration on Parliament Square. A small group, including Curtis, wanted to make more of an impact by walking back and forth across a zebra crossing between Parliament Square and Parliament, thus holding up traffic (I have been intrigued to come across an account that said the “earliest national demo in support of an anti-discrimination bill, introduced by the Labour MP Bob Wareing in November 1983, was a flop; plenty of deaf people appeared in Parliament Square but only five wheelchair users” (Wilkinson, 2009, p68), and another (Oliver (1984, p27) that described it as “the biggest demonstration ever staged in support of legislation by disabled people”). The police arrived and asked us to go onto the pavement. At his request, I was pushing Curtis in his wheelchair across the zebra crossing. A police officer then stood next to me and told me to return to the pavement. Curtis asked me to keep pushing him and, perhaps fuelled by a lingering sense of shame, and aware that my role was to be Curtis’s arms and legs and not decision-maker, I continued to do so. The officer then told me that if I did not return to the pavement I would be arrested. I said that he should be talking to Curtis and not to me, and tried to explain my role, but the policeman continued to warn me and not look at Curtis at all. At this point, Curtis said to me that we should return to the pavement.
We then went into Parliament to observe the debate. The bill was not successful, and it was one of 19 such attempts that were made before the Disability Discrimination Act (DDA) was passed in 1995 (Slorach, 2016, p148).
To the two quotes above about this particular demo, we can add the following observation of such demos in general, in a searing critique of the DDA by academic and Disabled People Against Cuts member, Bob Williams Findlay (2015), as “the ritualised farce of the big disability charities shipping in bus loads of disabled people to parade around Parliament Square before sending them home again”. There is so much packed into this that there is not the space to uncover here, but it speaks to the problematic relationship between disabled people and the big charities, of which The Spastics Society, now called Scope, is one, and to resistance to such paternalism by disabled people, who demand to be in charge of their own campaigns for change. At the same time, shipped in or not, at that particular moment in 1983, Curtis wished to be at that lobby and in that demo. He wanted to have his say too, and I would dearly love to be able to turn the clock back now and raise my hand.
It is only really through writing this piece that I have realised a thread has run through my social work career since this seminal experience. Despite some of the drawbacks of CSV’s Independent Living Scheme - disabled people could not choose their volunteers, and the scheme was designed and set up by non-disabled people (Evans, 2003) - for a number of disabled people, volunteer assistance was a route out of residential care. I worked next in a mental health day centre - run by another large charity, MIND - and came to see that moving out of an institution was not in itself a guarantor of living a life integrated into the community (Shennan, 1989). Language is important, as was clear in the change of name from the Spastics Society to Scope. My first social work job on qualifying in 1989 was in Ripley, Derbyshire, where I was fortunate enough to meet Ken Davis, who with his wife Maggie Davis had established the Derbyshire Centre of Independent Living. They later changed its name to the Centre for Integrated Living. As I continue to grasp the complexity of the idea of independence, I understand more the importance of resisting any individualising and atomising tendency it has, and of embracing an “ethics of solidarity” (Krumer-Nevo, 2016) that will assist us all in living meaningful and satisfying lives.
Barnes, C. & Mercer, G. (eds.) (2004). Implementing the Social Model of Disability: Theory and Research. Leeds: The Disability Press.
Evans, J. (2003). The Independent Living Movement in the UK. Independent Living Institute, www.independentliving.org/docs6/evans2003.html.
Krumer-Nevo, M. (2016). Poverty-aware social work: A paradigm for social work practice with people in poverty, British Journal of Social Work, 46, 1793–1808.
Oliver, M. (1983). Social work with disabled people. London: Macmillan.
Oliver, M. (1984). The politics of disability, Critical Social Policy, 4, 11, 21-32.
Ryan, F. (2018). ‘I could be taken from my home': why disabled people once again fear being ‘warehoused’, The Guardian, https://www.theguardian.com/society/2018/mar/27/disabled-people-independent-living-care-homes
Shennan, G. (1989). Out of the day centre, into the community, Unpublished Masters dissertation, Sheffield: University of Sheffield.
Slorach, R. (2016). A very capitalist condition: A history and politics of disability. London: Bookmarks.
Wilkinson, M. (2009). Defying disability: The lives and legacies of nine disabled leaders. London: Jessica Kingsley.
Williams Findlay, B. (2015). The falsification of history: The twenty year burial of the Civil Rights Bill, Disabled People Against Cuts, https://dpac.uk.net/2015/11/the-falsification-of-history-the-twenty-year-burial-of-the-civil-rights-bill/