June 25, 2011

UK: She campaigned for disabled people

LONDON, England / The Guardian / Society / Disability / June 22, 2011

Nasa Begum obituary

She campaigned for disabled people

Nasa Begum taught colleagues and the public that disabled people do not need help but equal opportunities. Photograph: Social Care Institute For Excellence
Nasa Begum, who has died aged 47 of a chest infection following a long illness, made an important contribution to the understanding of the experiences of disabled people, and campaigned tirelessly for the right to independent living. Her work had a significant impact on the way that the health service consults and learns from patients. Begum was perhaps the only senior policy adviser to the Department of Health who was a service user herself, having received support for mental ill-health as well as her physical disability.

Born in Birmingham, to a factory-worker father and housewife mother, both Pakistani migrants, Begum was diagnosed with a neurological condition that resulted in spine curvature and muscle degeneration. Between school and university, she attended Hereward College in Coventry, at the time a college for disabled students, which she said compromised her quest for independent living. In 1989 she was awarded an MA at Warwick University in applied social studies.

Her career began at Northampton Welfare Rights Centre, progressing through to senior policy and research positions in disability rights. She held research and development posts at Warwick University, the King's Fund, the Policy Studies Institute and the mental health charity Mind. She joined the Social Care Institute for Excellence (SCIE) in 2003 as a principal adviser, and helped to set up its first participation strategy with the aim of putting service users and their carers at the heart of service delivery. She also led work on the needs of disabled refugees and asylum seekers.

During her time at SCIE, Begum was seconded for two years to the Department of Health, where she played an important part in developing a user-led organisation for disabled people in every health authority. She also joined the board of the National Centre for Independent Living and was a member of the Care Quality Commission's mental health improvement board and the Joseph Rowntree Foundation's empowerment strategy group.

One of Begum's early papers, Burden of Gratitude (1990), focused on women with disabilities receiving personal care. Something to Be Proud Of (1992) was a study of the lives of Asian disabled people and carers. Jointly with colleagues, she also wrote Beyond Samosas and Reggae: A Guide to Developing Services for Black Disabled People (1995), and Developing User Involvement: Working Towards User-Centred Practice in Voluntary Organisations (2003).

In her paper I'm Not Asking to Live Like the Queen (2005, published by SCIE), Begum outlined the wishes of service users on the future of social care for adults in England. Later that year, she presented the Lord Pitt memorial lecture on her joint report with the Race Equality Unit, Doing It for Themselves: Participation and Black and Minority Ethnic Service Users (2006). Begum fought all her life for inclusion for people with disabilities. She taught colleagues and the wider public that disabled people do not need "help", but equal opportunities.

In 2008 Begum featured on the BBC TV programme Don't Get Mad, Get Dom, with Dominic Littlewood, which showed British Airways refusing to allow her on a flight from India because she was unaccompanied. She fought successfully for BA to recognise her right to travel independently. She is survived by her mother, Farzan, and her sisters, Qamar, Rabina and Taira.

• Nasa Begum, rights campaigner, born 23 July 1963; died 24 May 2011

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