Sally Callow is the founder of campaigning social enterprise ME Foggy Dog which raises funds for a chronic illness. Currently, she is on a mission about the Paralympic Games. This is because, believe it or not, the British Paralympic Association (Paralympics GB) has made one of its own campaigns inaccessible to over four million disabled people.
Callow has penned an open letter to the Paralympics GB. You can sign it here. Part of it says:
I wish to address a matter of significant concern regarding your #EveryBodyMoves campaign, which I believe warrants urgent attention and rectification.
But what is #EveryBodyMoves?
#EveryBodyMoves for the Paralympics
has teamed up with ParalympicsGB to launch a major, on-air campaign to encourage disabled people across the UK to take up a sport… [that] will drive viewers to the Every Body Moves initiative – a project run by ParalympicsGB to match disabled people with a local sports club.
[Channel 4 will] highlight the initiative through an onscreen QR code that, when scanned on a smartphone links directly to sports clubs in a viewer’s local area. As the QR code appears, there will also be studio discussions about the project and features profiling the work and participants.
On the Every Body Moves portal, users can tap in their postcode and the site will show a range of inclusive sports and activities.
I thought I’d tap the QR code to see if I could match my disabled partner Nicola with a “local sports club”. I tapped the “physical impairment” option (as that was the nearest one to what Nicola lives with) and everything was physical sport. Broaden the search away from just “physical impairment”, and seated exercise classes came up, over one mile from where we live.
Sadly, even this wouldn’t be suitable for Nicola. And she certainly couldn’t compete in anything at the Paralympics. Why?
As Callow wrote:
While the campaign’s intention to encourage physical activity and promote inclusivity is commendable, it unfortunately overlooks a critical reality: there are a large number of disabled people who are physically unable to engage in exercise or physical activity due to the nature of their disabilities.
For these individuals, the campaign’s message can be both exclusionary and inadvertently stigmatising.
Callow is right, and this applies to Nicola – because she lives with several chronic illnesses which would be classes as ELCs.
Energy-limiting conditions
Energy-limiting conditions (ELCs) refer to a group of chronic illnesses that significantly reduce a person’s ability to carry out daily activities due to overwhelming and persistent fatigue. This fatigue is not merely tiredness that can be remedied by rest; it is profound, disabling, and can be exacerbated by physical or mental exertion. Unlike the normal fatigue that everyone experiences after a long day or a strenuous workout, the fatigue associated with ELCs does not improve with rest and can worsen after even minor activities.
For many with ELCs, the physical limitations are among the most challenging aspects. Simple activities such as showering, cooking, or walking can become physically debilitating tasks. The unpredictability of energy levels from day to day makes it difficult for individuals to plan or engage in regular activities, contributing to a loss of independence.
Several chronic illnesses are categorized as ELCs, with myalgic encephalomyelitis (ME/CFS) being one of the most well-known. It is a very severe condition, that in some cases can kill, and often leaves people house-or bedbound. Energy limitation is not the most major symptom in ME/CFS, though. This is post-exertional malaise (PEM) – which is a severe worsening of many/all of the person’s other symptoms after any kind of exertion – be that physical, mental, or emotional.
Other ELCs are the Ehlers-Danlos syndromes (EDS) – genetic, hereditary connective tissue disorders, which again in some cases can kill. Multiple sclerosis is another, and so is long Covid. Overall, over four million people (if not more) live with ELCs in the UK. They’d be highly unlikely to say that #EveryBodyMoves. Yet the British Paralympic Association seems to believe that’s true.
Chronically ill people excluded from the disabled community
As Callow wrote of Paralympics GB:
The slogan #EveryBodyMoves, though well-meaning, implies a universality that simply does not exist. It risks reinforcing harmful stereotypes by suggesting that everyone, regardless of their physical condition, should be able to move or exercise. For those whose disabilities prevent them from doing so, this can lead to feelings of inadequacy, frustration, and a sense of being misunderstood or overlooked by the very community that is supposed to represent and support them.
Of course, chronically ill people being misunderstood or overlooked in the wider disabled community is hardly new.
Just this year for example, there have been numerous Disabled People’s Organisation (DPO)-led protests and events. However, organisers have often given little or no consideration to accessibility for chronically ill disabled people.
Livestreaming disabled people’s protests is one such example. It would allow chronically ill, housebound or bedbound people to get involved online. However, this is often not done or even considered – despite chronically ill people bringing the matter up themselves with DPOs.
Little wonder that this lack of inclusion in the disabled community then extends to the British Paralympic Association.
Paralympics GB needs to step up (metaphorically)
Some of it is probably lack of thought from organisers of the event; the exact same problem that disabled people with physical impairments campaigned hard to stop via the Equality Act 2010.
Part of the problem is probably also that old adage that ‘Oh! Well, you don’t look ill!”. Chronically ill people have historically been excluded from DPOs, sometimes with prejudice, because they’re ‘not disabled enough’.
However, ultimately it’s an issue of representation. Because there are probably few, if no chronically ill disabled people involved in the British Paralympic Association, then organisers would not even realise they being ableist with #EveryBodyMoves.
Equality and inclusion for some
Callow said she wants the British Paralympic Association to include:
a caveat in your partnership promotional material… acknowledging that while physical activity is beneficial for many, there are individuals with disabilities who are physically unable to engage in such activities.
It is past time that chronically ill people were given the same accessibility as disabled people with physical impairments. They are one of the most marginalised groups in the UK, and also one of the most stigmatised against.
It’s telling that the organisation charged with the UK contribution to one of the biggest disabled people’s events on the planet can’t even get its inclusivity right – and it sums up the societal-level problem we have more broadly.
You can sign Sally Callow’s letter here.
Featured image via the Canary
