Project offers new bridge between chronic illness community and disability movement

A disabled researcher has suggested a way to bring the hundreds of thousands of people with chronic illness under the umbrella of the disabled people’s movement.

Catherine Hale (pictured), who has lived with a diagnosis of ME for nearly 30 years, hopes that her new discussion paper will build bridges between the disabled people’s movement and the chronic illness community.

She is keen for her paper to “stimulate reaction and debate” from members of the movement, disability studies academics and policy-makers.

Hale suggests in the paper that people with chronic illness can be viewed as having a “stamina impairment” which restricts their activities – despite any treatment regimes they undergo – and that such people could make up the second-largest impairment group of disabled people in the UK.

She says that people with such impairments can and do experience socially-constructed disabling barriers, such as their marginalisation by society, the lack of medical understanding of their conditions, and the discrimination they face from those who doubt their ill-health.

She hopes that this will provide a way to explain their oppression through the social model of disability and bring them under the umbrella of the disabled people’s movement.

The publication of the discussion paper by The Centre for Welfare Reform is the latest stage of the three-year Chronic Illness Inclusion Project, which is receiving £40,000 lottery funding through the pioneering user-led DRILL (Disability Research into Independent Living and Learning) programme.

The project’s aim is to explore the experience of chronic illness within the social model of disability, co-produce an agenda for social, political and cultural change, and “forge a collective voice” for the online chronic illness community under the umbrella of the wider disability movement.

Hale says she believes that the only way that people with chronic illness can have their voices heard is for them to adopt a social model approach, which she believes will “strengthen and enrich” the disabled people’s movement.

She argues in the discussion paper that “there are restrictions to our lives, activities and wellbeing that are entirely created by social and political responses to chronic illness”, an approach that would allow a social model explanation for the barriers faced by people with conditions such as ME, fibromyalgia, Crohn’s disease and Ehlers-Danlos syndrome (EDS).

But she says these are forms of oppression that have “rarely been articulated or addressed” by the disabled people’s movement or academics working in the field of disability studies.

Hale is part of a “new generation of disability activists” who live with chronic illness – many of whom were involved in the Spartacus Network – and who “emerged in response to attacks on social security for those too ill to work”.

Their focus on impairment and their need for social security prompted some criticism from parts of the disabled people’s movement, she says, because this was seen as a return to the medical model of disability.

But Hale says in her discussion paper that the aim of the project is to overcome any divisions, “without threatening the integrity” of the disabled people’s movement.

She told Disability News Service that since writing the paper there had been extensive focus group discussions with people with a range of energy-limiting chronic illnesses, including lung disease, fibromyalgia, ME, EDS, multiple sclerosis and liver disease.

Although all of them met the Equality Act definition of disability, nearly all said a key reason they did not identify as “disabled” was that they “didn’t feel entitled to and they feared negative and hostile responses” if they did.

Nearly all said that fatigue was “the most debilitating and restricting aspect of their health condition, yet the one that was not understood, believed or accounted for, by society in general, by government agencies, and sometimes by their nearest and dearest.”

Hale said: “‘Fatigue is not a real disability’ seems to be the most common negative attitude they encountered that had the most restricting consequences for them.

“It was psychologically restricting because they internalised judgements that they were just lazy, attention-seeking, exaggerating or faking, sometimes to the point of doubting themselves profoundly.

“It was also restricting because it meant they didn’t claim or couldn’t access support to live more fully, either from fear of a hostile response or because they weren’t considered to have a proper disability.

“People in the focus group wanted to get together and challenge these attitudes, educate people about the lived experience of energy-limiting chronic illness and how it can restrict the most basic [aspects] of daily living, as well as exclude from society.”

The focus group members said that certain adjustments can help them participate in society, but nearly all stressed that “adaptations and adjustments only enabled participation to a limited extent” and that it was their illnesses that had a bigger impact on their lives than society.

Hales said she hoped that broadening the conversation “to include different experiences of impairment, ones that aren’t obvious or even medically legitimated”, and different experiences of disability and disablism, would allow people with chronic illness to be included in the disabled people’s movement and “embrace the social model and its empowering philosophy more fully than they currently do”.

To comment on Catherine Hale’s discussion paper, use the comments box on this page of the project’s website