Open Letter to the British Paralympic Association About the Need for a Caveat

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Amw66

Senior Member (Voting Rights)
From X

https://twitter.com/user/status/1832481080240189505




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.

To address this issue, I respectfully request that you consider including a caveat in your partnership promotional material (in the UK this is on Channel 4 with Toyota but includes other content with Nestle, Adidas, Aldi, British Gas, Dreams, and Bupa amongst others) 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 important to emphasise that the Paralympic movement values and supports all disabled people, regardless of their ability to participate in sports or physical exercise.
 
Honestly wasn't aware of this ad campaign but it's sickening. It's not only pwME that can't exercise/move their bodies. Using disabled athletes as inpiration porn and examples to chide and shame other disabled people who aren't fortunate enough to be able to move as freely is disgusting.
 
I feel a bit hesitant about this campaign against the #EveryBodyMoves idea. Yes, of course there is a big element of inspiration porn and yes, it is likely to make many people with ME/CFS feel sad about what they have lost, what they cannot now do. But, I'm not sure that we should campaign against exercise or against the idea that movement is good. I mean, that is what we want to do, to be able to move as we did before becoming ill. I think there is the risk that others will just go 'there goes those ME/CFS people with their fear of being active'.

I think the letter nearly strikes the right tone, but, virtually everyone does benefit from moving. Even people who are bed-bound should ideally move. Exercise and 'moving' are different things.

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.
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I don't think it is true that there are large numbers of people physically unable to engage in physical activity. I think the number of people whose bodies don't or can't move at all is actually very small.

To address this issue, I respectfully request that you consider including 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 important to emphasise that the Paralympic movement values and supports all disabled people, regardless of their ability to participate in sports or physical exercise.
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And here, 'physical activity' is mentioned, when I think what is really meant is exercise.

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.
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and here 'should be able to move'. Most people with ME/CFS can and do move, just not nearly as much as we want to. We do want people who are bedbound to have the option of getting passive exercise therapy to maintain range of function. We do want people with ME/CFS, well everybody really, to have sufficient support that they can choose to spend some of their energy on things that give them joy. For some people with ME/CFS, that may be getting out into nature in a motorised wheelchair, for some people it might mean lifting weights, for others it might be kicking a ball with their child in the park.

One risk of the campaign is that it may confuse things even further. If someone with ME/CFS does have support and is able to do a physical activity, then the campaign may result in people getting the idea that they don't really have ME/CFS.

I could be wrong about this. But I hope that the campaign organisers are aware of the risks and tread carefully.
 
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There is a paralympic document, defining what and what is not a disability for the purposes of one of the sports (maybe tennis? cant remember).... I saw this in the last few days, some pwme have written letters to the paralympic board about it, cannot atm find it again, still looking - BUT - the document defined 'Chronic Fatigue Syndrome' as 'Fatigue' only and deemed therefore it was not a disability.

The definition appeared to be exceptionally ignorant and dismissive.

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Lou B Lou said:
There is a paralympic document, defining what and what is not a disability for the purposes of one of the sports (maybe tennis? cant remember).... I saw this in the last few days, some pwme have written letters to the paralympic board about it, cannot atm find it again, still looking - BUT - the document defined 'Chronic Fatigue Syndrome' as 'Fatigue' only and deemed therefore it was not a disability.
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I think the one people were objecting to is the one containing the list of "Eligible Impairments" (p8):

https://www.paralympic.org/sites/de...al Standard for Eligible Impairments_2016.pdf
s4.1 - A number of Health Conditions do not lead to an Eligible Impairment and are not Underlying Health Conditions. If an Athlete has both a Health Condition that will not lead to an Eligible Impairment and an Underlying Health Condition the Athlete may be eligible to compete in Para sports.
...
4.3 Health Conditions that: 4.3.1 primarily cause pain; 4.3.2 primarily cause fatigue; 4.3.3 primarily cause joint hypermobility or hypotonia; or 4.3.4 are primarily psychological or psychosomatic in nature, do not lead to an Eligible Impairment.
...
4.4 Examples of Health Conditions that primarily cause pain include myofacial paindysfunction syndrome, fibromyalgia or complex regional pain syndrome. 4.5 An example of a Health Condition that primarily causes fatigue is chronic fatigue syndrome. 4.6 An example of a Health Condition that primarily causes hypermobility or hypotonia is Ehlers-Danlos syndrome. 4.7 Examples of Health Conditions that are primarily psychological or psychosomatic in nature include conversion disorders or post-traumatic stress disorder.
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Yeah, I think eligible impairments and disabilities might be different things.

There's always been confusion because it's so dependent on context. For instance, when my friend was undergoing cancer treatment she was automatically regarded legally as disabled, even though she had no impairment at all for quite a lot of the time (she did a lot of fundraising runs outside of the periods when she was having infusions). 20-odd years later she's much more impaired due to post-treatment osteoporosis, but would not have the same automatic status. However, someone with osteoporosis might be eligible for the Paralympics.
 
How 'CFS', and therefore 'ME' sufferers have been excluded from being considered as disabled (Having 'Eligible Impairments') for the purposes of Paralympic Sports:


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'International Standard for Eligible Impairments September 2016':


4. 'Health Conditions that are not Underlying Health Conditions:

'4.2 - 'An Athlete who has a health condition (included but not limited to the health conditions below) but who does not have an Underlying Health Condition will not be eligible to compete in Para Sport:

'4.5
An example of a Health Condition that primarily causes Fatigue is chronic fatigue syndrome'


chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.paralympic.org/sites/default/files/2024-04/International Standard for Eligible Impairments_2016.pdf?fbclid=IwY2xjawFK8lxleHRuA2FlbQIxMAABHSd10vR0WxiiJiX5wpM7NixthulvMNFOja2YCifEiWmRWZajj__Xs6H6ow_aem_F-TpLUsV7OWH3sOGUIzteA


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I think there is a world of difference between disability and disabling illness. I tend to say I have the latter, not the former. Many people with disabilities are very healthy, I'm not. I'm not making any judgement about which is harder to live with, but they are just different situations.

I am happy for people with disabilities who are able to excel in sports and enjoy competing to have their paralympic competitions, and to enjoy playing sports as leisure activities. I don't see them as anything to do with disabling illnesses, though of course some people may experience both.
 
Trish said:
I think there is a world of difference between disability and disabling illness.
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Yep, and 'disability' is such a vague and misunderstood term that it's often not very useful. In formal settings I use impairment instead, although I'm impaired (my body doesn't work as well as it might) and disabled (I'm excluded because of my impairments). Some people with significant impairments don't consider themselves disabled, though.


PS: It was definitely disability today, when we turned up to play at a small festival—having had a whole discussion with the organiser about wheelchair access—and nobody could find the key for the stairlift or knew how to operate it. :rofl: The first thing you learn when you get wheeled up is that there's lots of access equipment out there, but the chances of it actually working are never better than 50:50. (The poor onsite staff, who were very embarrassed, did get me on in the end with about 30 seconds to spare.)
 
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In the UK Disability IS Defined In Law - according to the original Disability Discrimination Act of 1995 as:

'A person has a disability for the purposes of this Act [F2and Part III of the 2005 Order] if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities'




The updated UK Equality Act of 2010 (which brings together all the previous UK Equality and Discrimination Acts) defines Disability as:



'Definition of disability under the UK Equality Act 2010

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.'

https://www.gov.uk/definition-of-disability-under-equality-act-2010




The act covers a range of conditions, including:
  • Fluctuating or recurring conditions such as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression, and epilepsy'



The Org Rethink states (for example):

'The word “disability” has a wide meaning under the Equality Act. Even if you do not call yourself “disabled” in everyday life, the Act may still protect you. The Equality Act does not specify that you to have a diagnosis in order to be covered. It says you have a disability if you have a:

physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities.'


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V.R.T. said:
Honestly wasn't aware of this ad campaign but it's sickening. It's not only pwME that can't exercise/move their bodies. Using disabled athletes as inpiration porn and examples to chide and shame other disabled people who aren't fortunate enough to be able to move as freely is disgusting.
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thanks for the info

I'm not on the ball enough to day to read this through for the exact nuance that it very much deserves.

I absolutely agree with this. There could have been a bit more effort to take the creativity to the next level where they were able to make disabled athletes inspiration porn whilst also instilling respect for those who their own tiny version of their daily lives is their own fight and achievement to keep going and not sink

even though I get that powerful straplines aren't long and complicated and don't come with caveats.

A bit of oversight vs those 'doing' the ads/brief could have reminded those who were doing that of their own inadvertent blindspots. Is it people who are selling products that the ad relates to too? and do we know which org did the campaign, and if it was a few clubbing together to use it who they were?

It's certainly a useful input for the next big competition that comes up.


Particularly if it relates to that theme, which I still feel is going on, from when phrases like 'there is no illness that doesn't benefit from exercise' being said by some official around the time of the pandemic. Which whilst it might have been said to sound like an old adage was 'new' and invented (I doubt he/they even realised it wasn't accurate, which is so scary how brainwashing someone through repetition and playing to their wishful thinking because it would make the world simple works)


HOWEVER, I do think that with the broader issue we need to be careful simply because of those who might not want to react well (we all think we will be better when someone points something out wrong but there is always an instinct to defend yourself a bit initially even in the best of us) , and others who are our anti-allies would perhaps enjoy putting a wedge between us and others with disabilities.

I can imagine the line (which would be twisting things) such as 'not wanting to celebrate others' etc so worth having a careful reply ready for that sort of thing. And making sure given this is the 4yr celebration for those who are involved it doesn't take away from their moment.



As a separate one I'm sure it wouldn't be a good thing to encourage pwme to do even if they did let us in, or they were competing on another basis and 'got' ME/CFS (or more likely long covid version). I saw a bit of the olympics where there were competitors who raced whilst they had covid, which is a different situation but perhaps even then is a bit of an awkward message even if the individual was happy to take the risk for themselves.

There is an interesting and separate discussion to be had carefully perhaps on the wider topic, particularly now we are knowing more about ME/CFS and PEM and 2 day cpets about how we can find a way to be 'part' of the movement it represents, even if I think it would be even worse if they were encouraging pwme to join the paralympics (so careful what we wish for there). Even if it is 'just' for the sake of helping with talking out how we understand these discussions and our interactions with different categories to understand what terms we might want to use and things might crop up.
 
Hutan said:
I feel a bit hesitant about this campaign against the #EveryBodyMoves idea. Yes, of course there is a big element of inspiration porn and yes, it is likely to make many people with ME/CFS feel sad about what they have lost, what they cannot now do. But, I'm not sure that we should campaign against exercise or against the idea that movement is good. I mean, that is what we want to do, to be able to move as we did before becoming ill. I think there is the risk that others will just go 'there goes those ME/CFS people with their fear of being active'.

I think the letter nearly strikes the right tone, but, virtually everyone does benefit from moving. Even people who are bed-bound should ideally move. Exercise and 'moving' are different things.


I don't think it is true that there are large numbers of people physically unable to engage in physical activity. I think the number of people whose bodies don't or can't move at all is actually very small.


And here, 'physical activity' is mentioned, when I think what is really meant is exercise.


and here 'should be able to move'. Most people with ME/CFS can and do move, just not nearly as much as we want to. We do want people who are bedbound to have the option of getting passive exercise therapy to maintain range of function. We do want people with ME/CFS, well everybody really, to have sufficient support that they can choose to spend some of their energy on things that give them joy. For some people with ME/CFS, that may be getting out into nature in a motorised wheelchair, for some people it might mean lifting weights, for others it might be kicking a ball with their child in the park.

One risk of the campaign is that it may confuse things even further. If someone with ME/CFS does have support and is able to do a physical activity, then the campaign may result in people getting the idea that they don't really have ME/CFS.

I could be wrong about this. But I hope that the campaign organisers are aware of the risks and tread carefully.
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I agree that it could be walking into a trap if those in charge are not sufficiently prepared from all angles. Even if they get the nuance spot on, I'm unsure whether the timing would be better after the athletes have had their moment to shine. Because there will be a lot of people who aren't our friends looking to twist things and create a wedge.

And we really do need to get both the nuance, and the follow-up of something that would be just as good for the paralympics/athletes whilst also covering and articulate what the specific blindspot is 'at the ready'. That makes it the difference between being twisted into being 'a whinge' vs 'a moment of enlightenment' where people think we actually have a point.

I'm not at my biggest moment of genius here but given I assume we'd like this change to soemthing that just drops any insinuation 'every illness is made better with exercise' whilst inputting ideally respect and acceptance for those to still feel part of it.

Then cliched and naff as it is - and not such a slick campaign, just a few frames of people like us 'pushing ourselves' to dress to support them or try and watch a race on TV or just waving them off even if it is a carer having to type the good wishes for them on their social media feed. Because we know how superhuman it is probably more than healthy people, as we can relate to them having added things to plan around just in the day to day due to disability.

But that would still be sneaking in on their moment (otherwise known as stealing thunder, and might be seen as whataboutme type thing)



There are some horrible cynics around who might say if you do it when the buzz is high, that it is a cynical attempt to just 'get press' by capitalising on saying something about something in the papers etc. Hence why it might be more powerful done after that has died down (even though I know it feels like it takes from the transparency etc if you can get eyes watching it, and people saying 'who cares it's an old campaign'). There is a theme here, because we had inaccurate things said during the pandemic from official sources and so I think taking that angle of it being recurrent could provide for the why it is being brought up - as a misunderstanding that needs to be set right before it beds in etc.
 
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Lou B Lou said:
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In the UK Disability IS Defined In Law - according to the original Disability Discrimination Act of 1995 as:

'A person has a disability for the purposes of this Act [F2and Part III of the 2005 Order] if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities'




The updated UK Equality Act of 2010 (which brings together all the previous UK Equality and Discrimination Acts) defines Disability as:



'Definition of disability under the UK Equality Act 2010

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.'

https://www.gov.uk/definition-of-disability-under-equality-act-2010




The act covers a range of conditions, including:
  • Fluctuating or recurring conditions such as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression, and epilepsy'



The Org Rethink states (for example):

'The word “disability” has a wide meaning under the Equality Act. Even if you do not call yourself “disabled” in everyday life, the Act may still protect you. The Equality Act does not specify that you to have a diagnosis in order to be covered. It says you have a disability if you have a:

physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities.'


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This is where the complication arises. There is disability and paralympics.

I have to be really careful here but I think the point is that these are athletes and it is an extension of the olympics defining equivalent categories to compete in like you might have male and female sections, and indeed there is a junior olympics too isn't there - plus in most sports there will be different age groups sections where there are then various levels of competition people make their way through.

So the focus is actually more perhaps about the athlete bit, and the level playing field part than it is really 'disability'?

PLEASE: I feel like we need to be so careful here, and am talking layperson not knowing for sure on this, so anyone do tell me if I've worded any of this in a way where it could sound a bit wrong, or if you know the history is different etc.

For a start I don't think pwme aren't able to be in the paralympics it just isn't something in itself that maps over to a defined category that would work for these purposes.

Are there any categories that are just one illness, or something similar as a concept?

And we could argue the theoreticals about how we could create a category but the issue is probably that until we actually get an example of someone who does something that would be a good thing to include we'd be spending a lot of time thinking up stuff that noone wants to do. And because of PEM it would be unavoidable to compete without causing deterioration to yourself whatever it is, so you'd really have to want that mission and then people might reasonably argue that is it a bit of a double-edged message encouraging as inspiration someone getting a gold medal but risking making themselves bed-bound in a dark room etc..

which would bring up other complications, but I'm all for autonomy being a massive issue for us to fight for. So as long as that person was making their own decisions and not speaking for others I'd be behind their right to be autonomous above all.

I'm not sure we need to until that day would be my answer because I don't think there are categories for other illnesses, just quite specific disability groups and it seems very scientifically done. And our illness doesn't map to that? It would need to be 'level 4 light sensitivity', or even if 2-day CPET was there, 30% threshold drop. But you probably couldn't then have the other long list of other adjustments.

PS I do understand the issue of rights to access and that for many of those in the paralympics they do talk of it being others participating that helped them through things or inspired. So the old chicken-and-egg of having a category might get people involved. SO am sympathetic to it and aware I'm ducking that slightly and not trying to argue against it as I agree, but it's an 'in theory'.

There's probably a whole other conversation of how on earth we could grade each other and on what to make level playing field categories within different sports (which all might affect different symptoms).
 
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Trish said:
I think there is a world of difference between disability and disabling illness. I tend to say I have the latter, not the former. Many people with disabilities are very healthy, I'm not. I'm not making any judgement about which is harder to live with, but they are just different situations.
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I would say that disabling illness is a subset of disability.

I also think that chronic illness presents additional challenges, which can be much harder to endure. You can be philosophical about and adapt to most physical disabilities in a way that is not possible with illness. Feeling unwell means suffering by definition, which disability alone does not.

I use a wheelchair indoors every day. If I didn’t feel so unwell, the quality of my life would be vastly improved, even if I was similarly disabled. To be well enough to my brain properly or to exercise be like heaven.

I remember once listening to Ben Elton on the radio talking about his psoriasis. He said he sometimes asked himself what he would sacrifice to be cured. From memory, I think he said that when it was bad he sometimes thought he would be prepared to have a finger chopped off, which I thought was quite a good way of explaining the limited extent to which it impacted his life. I’ve often asked myself the same question and concluded that there aren’t many bits of me that I wouldn’t trade to be rid of this illness.
 
Robert 1973 said:
I remember once listening to Ben Elton on the radio talking about his psoriasis. He said he sometimes asked himself what he would sacrifice to be cured. From memory, I think he said that when it was bad he sometimes thought he would be prepared to have a finger chopped off, which I thought was quite a good way of explaining the limited extent to which it impacted his life. I’ve often asked myself the same question and concluded that there aren’t many bits of me that I wouldn’t trade to be rid of this illness.
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A relative was very ill over a couple of years. The doctors thought he had some sort of infection in his leg but it did not respond to antibiotics. He was confused and needed significant levels of nursing care. His daughter had to make a decision for him about amputating the leg which was very hard. However within weeks he was back to managing his own affairs and after a couple of months he was able to attend my mother’s funeral some two hours car journey away on a prosthetic leg.

I must admit part of me thought, well I would be willing to give up a limb in exchange for such a dramatic improvement in health. There is a real difference between being/feeling very ill continuously and having a physical limitation, though the two often go together.

However it should not be a competition between different forms of disability and health issues, ideally we would find a way to be aware of the interests/needs of all. Unfortunately, though for most activity and exercise are a good thing, chronic illnesses are often overlooked in our society’s fetishisation of exercise. I watched the coverage of the Great North Run (a half marathon in the NE of England) in which my nephew was competing and which takes place near where I grew up, and the message was unequivocally anyone should be able to participate. I was very aware that I could not have participated in anyway even if some one pushed me in a wheel chair without suffering adverse consequences that training would only worsen, not ease.

[edited to add final paragraph]
 
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I think it’s a marketing phrase and it’s used inappropriately by the Paralympics Organisation.
It’s true that every body moves, to some degree, starting with breathing in and out.

However there are a large number of people who are unable to take part in the Paralympics because of their disability. It’s not an “inclusive” event as it is being promoted. The participants have primarily physical disabilities. They don’t have mental impairment, or pain and fatigue issues or learning difficulties.

I think as a slogan it’s either thoughtless, or actually very sly as it makes them “seem” more inclusive than they are.

IDK if ME FoggyDog has tried tweeting The Last Leg but I’dbe communicating with them and channel 4 to try and leverage them to speak to the Paralympics Association about it.
 
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Lou B Lou said:
The definition appeared to be exceptionally ignorant and dismissive.
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Trish said:
I am happy for people with disabilities who are able to excel in sports and enjoy competing to have their paralympic competitions, and to enjoy playing sports as leisure activities. I don't see them as anything to do with disabling illnesses, though of course some people may experience both.
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I don't think anyone thinks pwME could safely be taking part in the Paralympics. It's troubling though that such a high profile organisation, which probably has an influence on policy, should show such ignorance in its definitions.

There just doesn't seem room for nuance about disability/long-term illness, even though that affects almost a quarter of the population of the UK. There's poor things/tragedy, inspiration or malingering burden on society. Often there's extrapolation from one disabled person to everyone else

I could see that when the Paralympics became high profile in 2012, although a good thing in itself, it would also have negative consequences because of this lack of nuance. The "if they can do it, you should be able to too" argument is ridiculous, nobody thinks the average able-bodied person should be able to run like Mo Farah, but it's so prevalent.
 
In 2012 George Osbourne was booed when he entered the stadium and there was outrage that some Paralympians lost their benefits. I am worried that by coming second in the Paralympics (which is, of course, a tremendous achievement) the UK will be seen as supportive towards disabled and long-term sick people, rather than a country strongly criticised for its behaviour by the UN.

I hope some of the athletes will speak out on issues other than sport.
 
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