In the quarter century that Liz Sayce, 63, has been an advocate for disability rights, she has witnessed momentous changes. But the former chief executive of Disability Rights UK (DRUK), who stepped down from the role earlier this summer, believes that the movement has reached a critical moment.

'A human right, not a bonus': readers on campaigning for disability rights Read more

Next week a delegation from DRUK and other organisations is travelling to Geneva – and is expected to highlight concerns about the government’s response to a UN committee’s investigation into the upholding of the UN Convention on the Rights of Persons with Disabilities. Last year, the committee concluded that the government was guilty of “grave and systematic” violations of disabled people’s rights under the convention, and made 11 recommendations for improvements. All were rejected by ministers. Sayce says this “unfortunate response” is discouraging.

She believes it is crucial that protecting and securing rights is a priority, during a time when people with disabilities have borne the brunt of austerity policies and disabled people’s organisations have had to vociferously resist a vast array of cuts to benefits and social care. Initiatives such as the Work Programme, policies like the bedroom tax and benefits sanctions, moves to alter social care criteria so it is harder for people to access support, and the abolition of the Independent Living Fund for severely disabled people have made resistance essential, she adds.

A damning 2013 DRUK report called for the Work Programme to be scrapped for unemployed disabled people. “The culture of pressurising people to take up ineffective, one-size-fits-all programmes has failed disabled people,” she says. She asserts that the wider goal of the disability rights movement, pushing for “equal participation” in society, needs to underpin actions. “We’re not just saying [individual policies] are important. We’re saying that belonging and participating in society are critical. They are human rights and they are crucial to human wellbeing.” Sayce believes that being an organisation led largely by people with disability or long-term health conditions is central to DRUK achieving its objectives, including lobbying and influencing.

Earlier this year, the Equality and Human Rights Commission (EHRC) concluded that despite progress over the years, disabled people are still not treated as equal citizens. Its report outlined a litany of “missed opportunities and failures” across six key areas of life. These included gaps in educational attainment between disabled children and their non-disabled peers, and high rates of unemployment and poverty. This analysis came just months after the UN investigation.

Facebook Twitter Pinterest In 2011, Sayce headed a government review into disability employment – and described Remploy sheltered factories as “ghettos” that reinforced stigma. Photograph: Don McPhee/The Guardian

All of this means “extreme inequalities” are exacerbated, says Sayce. It feeds into an unacceptable “othering” of disabled people, which in turn hinders further progress and contributes to a pattern of disability being couched in terms of vulnerability, rather than rights and “equal citizenship”.

Having worked early on in psychiatric hospitals, Sayce says she “witnessed the way that institutionalisation and discrimination drastically curtailed people’s rights to participate” and was always motivated to do something about it. Highlighting “burning social justice issues” affecting disabled people became the hallmark of her long career. Despite the low points – “seeing the clock turned back by successive governments” (she singles out the “erosion of independent living”) – she is also keen to acknowledge advances along the way.

As policy director at Mind, she was on the frontline of lobbying in the lead up to the landmark Disability Discrimination Act (DDA) in 1995. “Remember that before that point it was completely legal to refuse somebody [entry] into a cafe because they were disabled, or to refuse somebody a job overtly. No law against it whatsoever.”

Sayce stresses that proactive moves in the 1990s and 2000s helped to shift and shape the rights agenda. She cites the introduction of public sector equality duties in 2005 as one example. Absolutely pivotal, she says, is the degree to which progressive policies were, and continue to be, conceived and shaped by disabled people. Referring to developments such as personal budgets for social care, Sayce says: “It happened with independent living in the 90s and that’s exactly how it should work.”

Among the highlights of her career, she says, was being a director at the Disability Rights Commission (DRC) in the 2000s: “A time when disabled people and allies set and secured a new agenda; new rights … and new enforcement”, for example the recent supreme court case on access to public transport.

Her career has not been without controversy. In 2011 she headed a highly charged government review into disability employment, and described Remploy sheltered factories as “ghettos” that reinforced stigmas and were obstacles to inclusion in mainstream workplaces. Despite the government accepting all of her recommendations, and extending the access to work initiative to apprenticeships, she says there has been real backsliding.

“Government has continued to focus on influencing individuals to change their behaviour, rather than influencing the behaviour of employers to open up employment opportunities [to disabled people]. You can’t just keep putting pressure on the individuals. You have to change the way employment works and the way [we] support individuals into work. What we want is policy across government – whether it is transport, social care, education or employment policy – that is all working to an agenda of full participation and independent living.”

Sayce is not leaving the disability rights arena entirely (she’s a member of the Healthwatch England Committee and the Social Security Advisory Committee and will continue to mentor) and eagerly awaits the outcome of the UN assessment later this year. She welcomes new disabled MPs including Marsha de Cordova and Jared O’Mara to parliament, and believes it will be critical for the government to demonstrate it can build trust with disabled people through an action plan (in response to the UN committee) with short- and long-term policies to achieve rights to full participation. “The UK has often thought of itself as a world leader in disability rights,” she says. “Well, to earn that title it needs to be ahead of the game. It’s got some way to go to demonstrate that.”

Curriculum vitae

Age 63.

Lives Tooting, south London.

Family Civil partnership.

Education Oxford high school; University of Kent, English and French; University of London, MSc social work and social policy.

Career 2012-2017: chief executive, Disability Rights UK [following merger of Radar, National Centre for Independent Living and Disability Alliance]; 2007-12: chief executive, Radar; 2000-07: director, policy and communications, Disability Rights Commission; 1998-2000: director, Lambeth Southwark and Lewisham Health Action Zone; 1990-98: policy director, Mind; 1987-90: programme coordinator, research and development for Psychiatry (now Centre for Mental Health); 1985-87: good practices in mental health project worker, which included visiting Bexley hospital in south London and visiting people coming out of both Bexley and Cane Hill hospitals.

Public life Member, Healthwatch England Committee; member, Social Security Advisory Committee; OBE in 2008; honorary doctorate, University of Kent, 2014.

Interests Long evenings with friends, long-distance walking, social history – of movements for change, and London.