Her father, Ron, was a heating engineer and her mother, Jesse, was a window dresser in a gown shop.

As a child she was prone to getting severe chest infections, which occurred two or three times per year, sometimes requiring hospitalisation.

[8][2][3] In 1996 there was a spin-out organisation from BCODP - the National Centre for Independent Living[9] (NCIL) - which she co-founded and co-directed with Frances Hassler.

[4][11] On 3 April 2007, after it was announced by the House of Lords Appointments Commission she became a life peer and would sit as a crossbencher.

[12] In her campaigning record, items of public note include the creation and later closure of the Independent Living Fund (ILF),[5][10] the creation of the Community Care (Direct Payments) Act 1996,[10][13] the loss of some disabled people's welfare benefits,[14] the disproportionate impact of the COVID-19 pandemic on disabled people's lives,[11] and attempts in Parliament and the appeal courts to change the law on assisted dying as it impacts on disabled people.

He was a haemophiliac, and six weeks before the wedding they discovered that he had contracted HIV from a blood transfusion following a car accident in 1985, from which he later died in December 1993.

As of 2009, she received a direct payment from the local authority for her care needs, which enabled her to employ five female carers to help her with the routine activities of daily living.