CGDC and Disability Rights in the later 20th century

The story of disability rights in the second half of the twentieth century can be told in terms of landmark parliamentary acts such as the 1995 Disability Discrimination Act, brought about through thirty years’ campaigning on the part of organisations including the Disablement Income Group, the Disability Alliance, and Scope. However, historians of disability caution against such ‘teleological’ accounts; they argue that ample available archival material enables more nuanced histories.¹ Gareth Millward, for example, uses archives from disability rights organisations to reconstruct the relationships between disabled people, civil society groups and policy makers which illuminates both the successes and failures of disability rights activism.²

Whilst disability history is becoming a well-established strand of modern British historiography, the nuanced picture historians advocate can be enhanced by supplementing ‘traditional’ archival sources, created by processes of institutional administration, with more diverse, bottom-up, reflective and retrospective material increasingly made available digitally by community groups. This ‘community generated digital content’ (CGDC) can shift focus from national to local dimensions of the disability rights movement, as well as offering insights into how veterans review, assess and contextualise the significance of their activism. 

The CGDC available is as diverse as the disability rights movement itself: the Disabled People’s Archive holds activist magazines, flyers and protest songs;³ the National Disability Arts Collection and Archive includes films of artists discussing their own protest work;⁴ a variety of digital archives document the recent history of campaigning on the part of those with a diverse range disabilities.⁵ In this short blog, I will concentrate on oral history memories of disability rights activism contained in two digital archives: Kingston Heritage Service’s ‘Fighting for Our Rights: Kingston’s Role in the Disability Rights Movement 1960s to 1990s’ (http://www.kingstonfightingforourrights.co.uk), and Scope’s ‘Speaking for ourselves: an oral history of people with cerebral palsy’(https://sounds.bl.uk/Oral-history/Disability-Voices).

The 23 interviews and transcripts available on the Kingston Heritage Service website with activists and local authority administrators help counterbalance historiographical focus on the national scale by highlighting the importance of grassroots activity and local coalitions in improving conditions for people living with disabilities.⁶ In the 1980s and ‘90s, disability groups argued that instead of paying for residential care, local authorities should give money directly to individuals who could then employ carers and remain living independently in their own homes. Though illegal, 40% of local authorities in Britain circumvented the rules and made direct payments.⁷ The 23 interviews here tell the story of how local action secured ‘Independent Living Payments’ in the London Borough of Kingston. In the late 1980s, two women living with disabilities, Jane Campbell and Ann Macfarlane, approached the local authority with a proposal for direct payments (to be ‘laundered’ through the Kingston Centre for Independent Living).⁸ Jenny Webb, Assistant Director of Social Services for Kingston, heard their proposal and was sympathetic. She initiated a pilot scheme before rolling out direct payments to the wider community. Jenny notes that the culture of the local council – Kingston was ‘officer-lead’, rather than ‘councillor-lead’ – gave her freedom to develop and implement Independent Living Payments. Other interviewees recall the transformative effects of these payments.⁹ Jane Young was diagnosed with ankylosing spondylitis in 1995. She received direct payments to employ a Personal Assistant to help her with her young children, which allowed a great deal of flexibility and enabled Jane to pursue a career as a Disability, Equality and Access Officer at Kingston Council and as a campaigner for disabled parents: ‘None of that would have happened if I hadn’t started my life as a disabled person in a borough where independent living was understood as an important concept, a borough full of disabled people who have been in the vanguard of persuading local authorities to completely change the way they provide support.’¹⁰

Although historians contrast their own nuanced and detached approach with ‘teleological’ versions of disability history espoused by committed amateur historians, the oral history interviews do not present teleological history. They are instead complex narratives which acknowledge dissonance, failure, and regression as well as togetherness and progress. Any notion of a single ‘disability rights movement’ is quickly dispelled. A number of interviewees across the two collections distinguish their own mode of activism, involving the careful framing of arguments and engagement with policy makers at local and national levels, from more militant disability rights activities. Jane Lawrence was not comfortable with militant protest methods such as ‘lying down in the street’: ‘I find that degrading’.¹¹ Valerie Lang, interviewed as part of Scope’s ‘Speaking for ourselves…’ project, disagreed strongly with those who frame disability rights as a ‘battle against oppression’: ‘I feel I’ve got enough to cope with, without feeling people oppress me.’¹² If the ‘movement’ was divided, it was also not a simple story of progress, and interviewees were open about failure as well as success. Jane Young recalled that years of campaigning over Personal Independence Payments (PIP) did not influence government policy: ‘it was a fairly thankless task because they didn’t listen to any of it’.¹³ Linear progress towards ever increasing freedom for people with disabilities was also called into question by recent reversals. Ali Kashmiri lamented that advances gained during a heroic period of organising (1960s through to the 1990s) have subsequently been threatened or overturned: ‘I feel we’ve lost that momentum, that drive…unless you keep the pressure up things do start to slide… now that we haven’t got places like day centres and other kinds of community facilities where disabled people historically would have congregated, they’re just hiding away at home, apparently receiving a personalised service, but actually are they getting the service?’¹⁴

Historians have shown that there is a wealth of ‘traditional’ archival material available for studying disability history in the later twentieth century. However, the material in archival institutions tends to reflect the administrative processes of government and organisations. CGDC collections, on the other hand, are put together by people with disabilities and by disability rights campaigners, and therefore reveal their interests, understandings and commitments in ways that professionally curated institutional archives often do not. Through CGDC we learn how people remember and evaluate their involvement in disability rights movements, and about the impacts of legislation and welfare changes on ordinary lives. This material can also refocus our attention on historical change at the local scale. From the Kingston material, for example, we learn much about the intricate, everyday details of campaigning on the ground in a particular borough, and how chance meetings, as well as local networks and structures, enabled or frustrated the efforts of campaigners. Given the breadth of the material, CGDC could be used to address questions about the diversity of traditions within the disability rights movement and how these interacted and came into conflict. Furthermore, the struggle to improve conditions did not only occur in the political sphere – the rich oral history material provided in collections of CGDC allows investigation into how disability inflected everyday experiences of work, leisure, family and sociability. 

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References and endnotes

1. Andrew Mark Holroyde ‘Sheltered Employment and Disability in the Classic Welfare State: Remploy c.1944-1979.’ PhD thesis, Uni of Huddersfield, 2019, p.51. ↩︎
2. Gareth Millward, ‘Social Security Policy and the Early Disability Movement—Expertise, Disability, and the Government, 1965–77’, Twentieth Century British History, Volume 26, Issue 2, 2015, pp. 274–297. ↩︎
3. Disabled People’s Archive (website) available at https://disabledpeoplesarchive.com [accessed 9 January, 2023]. ↩︎
4. National Disability Arts Collection and Archive, (website) available at: https://the-ndaca.org [accessed 9 January 2023]. ↩︎
5. For example: Grace Ayre “Sharing Our Voices (website), available at https://sharingourvoices.org/ [accessed 9 January 2023); National Paralympic Heritage Trust (website), available at  https://www.paralympicheritage.org.uk/oral-history [accessed 9 January 2023); Lancashire Learning Disability Institutions. A People’s History of Institutional Life, (website). https://www.lancslearningdisabilityinstitutions.org.uk/ [accessed 9 January 2023); Changing Our Lives (website), available at https://changingourlives.org/  [accessed 9 January 2023); SHARE: The Deaf Visual Archive – British Deaf Association, (website), https://bda.org.uk/share-deaf-visual-archive/  [accessed 9 January 2023]. ↩︎
6. Kingston Heritage Service ‘Fighting for Our Rights: Kingston’s Role in the Disability Rights Movement 1960s to 1990s’, (website), available at http://www.kingstonfightingforourrights.co.uk [accessed 9 January 2023]; the material on Kingston Heritage Service’s website available for reuse for non-commercial purposes under Creative Commons licence. ↩︎
7. Simon Millar ‘Disability’ in Pat Thane, (ed) Unequal Britain: Equalities in Britain since 1945, London: Continuum, 2010, pp.163-88, p.170. ↩︎
8. Kingston Heritage Service, Jane Campbell interview, available at:  https://kcil.org.uk/FFOR/interviews/jane-campbell-2/[accessed: 21 August 2023]. ↩︎
9. Kingston Heritage Service, Jenny Webb interview, available at: https://kcil.org.uk/FFOR/interviews/jenny-webb-2/ [accessed: 21 August 2023]. ↩︎
10. Kingston Heritage Service, Jane Young interview, available at: https://kcil.org.uk/FFOR/interviews/jane-young-2/ [accessed: 21 August 2023]. ↩︎
11. Kingston Heritage Service, Jane Lawrence interview, available at: https://kcil.org.uk/FFOR/interviews/jane-lawrence-2/ [accessed: 21 August 2023]. ↩︎
12. Scope, ‘Speaking for Ourselves, an oral history of people with cerebral palsy’ interview with Valerie Lang, available at British Library ‘Disability Voices’, (website), tape 19 side A, [digitised as part 32] https://sounds.bl.uk/sounds/valerie-lang-interviewed-by-philip-mann-1001368488750×000048 [accessed: 21 August 2023]; there is also a transcript pdf available here: https://www.yumpu.com/en/document/read/36585651/speaking-for-ourselves-an-oral-history-of-people-with-scope/25 (p.190). ↩︎
13. Kingston Heritage Service, Jane Young. ↩︎
14. Kingston Heritage Service, Ali Kashmiri interview, available at https://kcil.org.uk/FFOR/interviews/ali-kashmiri-2/ [accessed: 21 August 2023]. ↩︎