The National Disability Strategy Ignores Those With Energy Limiting Chronic Illnesses

Like many other disabled and chronically ill people, reading the new National Disability Strategy released by the government yesterday left me feeling a little underwhelmed. 

I live with Hypermobility Spectrum Disorder, a connective tissue disorder that is also classified as an Energy Limiting Chronic Illness (ELCI). The Chronic Illness Inclusion Project says that an illness is considered an ELCI if it “[has] energy impairment as a key feature”. 

Those of us with these illnesses have to ration our energy to get through the day, often sacrificing fun things and socialising, to work or go to school. Things that are easy for non-disabled people, like commuting, cooking, or even just having a shower, can be an absolute battle when you have an ELCI.

As someone who has just finished their A levels and will soon be going to university, access to education is a huge passion of mine. I felt it very acutely during the pandemic – I did both of my years in sixth form with significant disruption, but it actually made learning much easier for me. I wasn’t shoe-horned into the two-hour-long double periods on my timetable.

If I was particularly fatigued or in a lot of pain, I just put the work down and came back to it later. On bad days, I did my work, including entire essays, from my bed. Lots of my lessons were pre-recorded videos, which I paused when I stopped taking it in; in a classroom, I’d have to piece it together afterwards based on my (often dubious, because of brain fog) notes. Also, I didn’t have to contend with the many aspects of the built environment that caused me pain, like lab stools, heavy textbooks, and stairs.

While those things may seem small, they very quickly added up. I produced better quality work, I felt better overall, and I had more energy for other things. For a brief few months, the days of coming home from school and being so exhausted I could hardly think for hours were a thing of the past.

This access was essentially revoked when we returned to school in March, and with only two months left, I didn’t have the energy to fight to keep it. However, I am lucky that I could still just about manage full-time education, even if I got through exam season on adrenaline alone. 

I have many friends who can’t attend school full-time due to illness. Lots of them have been fighting for flexible learning and the ability to work from home for a long time, with little success. This access was put in place overnight during the pandemic, yet there is no trace of it in the National Disability Strategy, so individual students will have no choice but to fight for it on their own. 

I was disappointed to see that people with ELCI, and how our needs differ from other disabled people, had not been considered by the government.

A similar picture is reflected in work, as most jobs had to move online very quickly in early 2020. This gave people far more flexibility to pace their own days, take breaks when they needed to, and work in a more comfortable environment – workers had far more autonomy. It also removed things like the commute and sensory stimulation, which can be very draining for people with ELCI. 

These are things that those with ELCIs had been fighting to get for a very long time, many resorting to being self-employed due to it being the only feasible option. Work isn’t possible for everyone with an ELCI, as some people only have enough energy to look after their basic needs, but those who can work often sacrifice a lot to do so. 

In a survey by disability employment charity Astriid, 66% of respondents who were in work said that their work-life balance was “poor”. Those who felt their work-life balance was good typically had reasonable adjustments like working from home, rest breaks, and shorter hours in place. This shows the enormous impact that reasonable adjustments, many of which are small, have on not only a person’s work, but also their entire life.

The employment section of the National Disability Strategy touches on flexible working briefly, stating that “We are committed, subject to consultation, to make flexible working the default, unless employers have good reasons not to.” 

I would like to point out that the section on disabled people in Defence and Security is longer, which feels a bit absurd, given how many people have ELCIs. Leaving that aside, the above phrase doesn’t fill me with very much confidence. Why? It says employers can opt-out if they have “good reasons”. 

This has a similar problem to “reasonable adjustments” in the Equality Act 2010 – who decides what is “reasonable” has always been contentious, so who decides what these “good reasons” are? Due to the Government’s track record with disabled people, I don’t have much faith that this will be done well, unfortunately.

Both the work and education sections of the strategy heavily focus on pushing disabled people into traditional institutions, rather than making these institutions work for us. While this can work for some, it is less effective for those of us with ELCIs. 

Changes to the built environment, like more comfortable chairs, reduce the amount of pain and fatigue I experience, but do very little to acknowledge that I just can’t sit or work comfortably for as long as non-disabled people. More systematic changes – altered working patterns, flexibility and rest breaks – are needed for me to perform my best, but there is far less acknowledgement of this in the strategy.

As such, I feel very much thrown to the wolves.