“When it came to disability inclusion, I found that our disability wasn’t included. There was no word or concept to describe my experience, because I didn’t have a straightforward label such as mobility impairment or sensory impairment.”
These were Catherine Hale’s opening remarks when she delivered a lunchtime talk on chronic illness and disability inclusion to Sightsavers staff. Catherine and her co-presenter, Anna Ruddock, Sightsavers’ research uptake and learning adviser, are founding members of Chronic Illness Inclusion, an organisation of people with disabilities which is leading social change for those with energy-limiting chronic illness (ELCI), energy impairment and chronic pain.
During the talk we learned that disability is generally understood through the following categories: autism or neurodivergence; cognitive, intellectual, physical or sensory impairment; and mental health condition. The term ‘long-term health condition’, often used to describe a condition that falls outside these categories, does not adequately describe a person’s specific experience. Catherine had long felt that there was no ‘tick box’ that reflected her experience of chronic illness.
Energy-limiting chronic illness and how it affects people
To address this gap, Catherine founded Chronic Illness Inclusion, which began as a three-year, disabled person-led research programme, funded by the National Lottery. The programme set out to research the lived experience of chronic illness and found that of 2,000 people surveyed, 43 per cent reported that energy fatigue or limited energy was the most restricting feature of their condition, while pain was rated second at 27 per cent.
Catherine described four common features associated with ELCI: cognitive fatigue, energy impairment, payback, and fluctuation.
Energy impairment means a person has “a very limited reserve of energy that gets depleted by the slightest activity”, rather like having a mobile phone that never charges beyond 20 per cent. For every activity, someone with ELCI must calculate the ‘cost’ in terms of the amount of energy needed, and balance this with the energy needed to carry out other tasks. It means “constantly rationing the energy used, according to the task”.
Cognitive fatigue (or brain fog) and restricted mobility are common aspects of energy impairment. Payback is the idea that if you exceed the energy that is available to you, then you’ll suffer increased impairment. This usually means that a person with ELCI will need longer periods of time to rest and recharge, but they may have less time available to do so. Many people with ECLI experience fluctuation in their energy levels, so they may have periods of relatively good health, interspersed with acute bouts of ill-health.
How we can support people with ELCI at work
Anna explained the things that we can do to help address the issues experienced by people with ELCI. In our external work, it’s about drawing attention to the stigma and discrimination around ELCI, listening to and believing those who talk about the issues they face, and ensuring that people have access to compassionate health care. These actions can all help to break down attitudinal barriers and systemic disbelief.
Internally, it’s about recognizing ELCI in our inclusion work, and supporting colleagues to be authentic if they are experiencing ELCI. We are currently working towards including topics like chronic illness, energy impairment and dynamic disability in our disability awareness training. We also need to consider the impact of other factors, such as environmental challenges, which can reduce a person’s available energy. For example, commuting, time spent at work, and a noisy office environment.
As Catherine explained: “the key reasonable adjustments for ECLI are about the time, the pace and place of work”. So what does this mean? A report by Chronic Illness Inclusion suggests that it may be necessary for employers to develop niche roles with reduced hours, so that staff who are unable to work standard part-time hours can continue contributing their invaluable skills and expertise.
By the pace of work, it means having the authority to adjust working hours in response to fluctuations, along with a workplace that can accommodate rest breaks in a quiet space. By place of work, it means having the option to work from home, which saves valuable energy that would otherwise be drained by commuting and coping with the sensory overload of an office environment.
During the COVID-19 pandemic, many of these measures have become the norm. It’s now critical that these options remain in place as we establish post-pandemic ways of working. The Disability Inclusion Working Group will be seeking to take forward more recommendations from Chronic Illness Inclusion.
Catherine Hale, director of Chronic Illness Inclusion, and Anna Ruddock led the lunchtime talk on chronic illness and disability inclusion, on behalf of the Disability Inclusion Working group, in September 2021.