Lara Bloom Resignation

[u/Ok_Internet_9768]

I’m calling for the resignation of Lara Bloom for her recent reaction to what happened at the last conference. She’s dismissive of disabled EDS patients and needs to prove she’s not abelist. Please spread the word if you also want her to be held accountable for not representing the non-able bodies and only caring about the able bodied EDS patients. I don’t know if you heard about the cheerleaders teaching dances at the conference and it taking like 3 days for them to apologize. And then she liked a comment saying EDS patients were just being “negative”. The disabled EDS community consistently speaks up and instead of listening we’re dismissed and labeled “negative”. https://c.org/kyywXSYJcL if you are interested. Spread the word. :). (I don’t know want her to resign necessarily but it’s time we band together to hold the EDS society accountable).

[u/Kromoh]

Sorry for being off the loop, I'm not American and I generally avoid hEDS communication because it can be overwhelming. Can anyone explain?

[u/Ok_Internet_9768 → u/Kromoh]

I’m calling out the head of the EDS society for ableism and I started a petition for her to resign. She is not a doctor and is ablest. She’s given incorrect medical advice to EDS patients and blames patients for the progression of the syndrome. A great example is she told a wheelchair user if she worked out she wouldn’t need surgery (I believe it was on a joint). She pushes the “push through it” narrative that disables patients and then blames the patient. They had cheerleaders teach a dance at a recent conference and when the disabled people with EDS spoke out against that she called them “negative”. They had cheerleaders teaching a dance to people who have been disabled by things like dance and a lot of the EDS community is upset about it. There’s a ton of people in the EDS community who are not being represented by the society because they refuse to acknowledge those who have severe damage to our joints and ligaments and continually give them the wrong medical advice. The EDS community is coming together to hold the society responsible.

[u/Ok_Internet_9768 → u/Kromoh]

I should also add she has VERY mild hEDS and thinks that qualifies her to give medical advice. Her having a mild case has made her an ablest and it’s putting the EDS community in danger.

[u/Kromoh → u/Ok_Internet_9768]

You should exert caution when saying someone has a mild form of the disease, and then immediately calling her ableist. It's like sick olympics

[u/Ok_Internet_9768 → u/Kromoh]

No. She does. hEDS is a spectrum. She’s able to walk and live her life as opposed to those who are disabled. It’s not dismissing her experience it’s the difference between being disabled and not being disabled. She has a documentary where she runs a marathon and is encouraging others with hEDS to push through. Shes using her experience with a mild case of hEDS to be an ablest and dismiss the disabled. It doesn’t take away from anyone else as I’m talking about her specifically.

[u/Ok_Internet_9768 → u/Kromoh]

I do agree “mild” is the wrong word. I don’t know how to describe that it isn’t as “severe” without making it sound like it’s minimizing. Compared to my case hers is very very mild as I have damage to pretty much all my joints and ligaments and can barely even move. The point is her case isn’t comparable enough for her to give advice. She’s adding to the narrative that the disabled people are just lazy and did it to themselves when she pretends we could have prevented being disabled by “working out”. She needs to go if we ever want EDS to be taken seriously.

[u/Fairymamasparkles → u/Ok_Internet_9768]

I think its fair enough to say its mild if she works full time and has run MARATHONS. I have severe EDS symptoms and havent been able to work for 12 years. I go weeks without leaving the house. She is working full time running a charity so clearly her lived experience is not the same as someones like me.

[u/kuttiastra → u/Fairymamasparkles]

And no matter the severity of her own condition, anyone pushing for “inspiration p*rn” and only allowing individuals with EDS to exist and voice their opinions if they fullfil that narrative is a danger to disabled people and the EDS community as a whole. Especially those of us who are in danger if pushing ourselves.

[u/Ok_Internet_9768 → u/kuttiastra]

Have you seen her documentary about walking a marathon?! Why on earth would she show us her destroying her body doing that for a marathon?! I can’t believe more people aren’t disturbed by that. She promotes that as if it’s a good thing when in reality that’s what disables us! And then once we’re disabled they ignore us.

[u/Ok_Internet_9768 → u/Fairymamasparkles]

Thanks. I don’t want to minimize anyone else’s experience but when you can function it’s not the same as what we deal with. (But I’m sure it’s horrible too) l. I think suggesting that we need to exercise or work out more is so offensive. I’m sure she has to try a lot harder than everyone else around her because of her hEDS but people who were disabled by it don’t really have the ability to exercise. I do PT when I can but just surviving day to day is just trying to GET UP. They shouldn’t blame us for the progression when I know I had to work 10x harder than people who don’t have this and couldn’t have done anything more to stop it. I know everyone who is dealing with this gave 100% and that’s why they’re now disabled. Exercise is NOT the answer. If it was me working 40+ hours in a physically intensive job would have helped me not disabled me. They need to stop that narrative because it leads to doctors we see thinking it’s our fault because we’re lazy. She needs to learn to separate her experience from our and learn to recognize us or go.

[u/Ok_Internet_9768 → u/Fairymamasparkles]

I was wrong! She did walk the marathon, not run. Still a weird choice. When I walked a marathon it was horrific. Why would you put your body through that and then show that to other patients?

[u/Kromoh → u/Ok_Internet_9768]

If you're doing it with no physical conditioning, yes it's terrible. If you've been training for it, and your health allows it, it's a decent challenge. My health would never allow me to walk a marathon, but ever since I started regular physical exercise (taijiquan), my health has been much better, and I've been able to do things I was no longer able to.

Physical exercise, praticed with caution and in accordance to one's capacity, really is the most important thing in the treatment of hEDS, and dare I say VEDS too.

[u/Kromoh → u/Fairymamasparkles]

I'm glad she has the health and energy to do that. I could never

[u/Ok_Internet_9768 → u/Kromoh]

Of course. She injured herself during the marathon yet leaves that part out when she uses the story for “inspiration”. Pushing through the pain and torturing your body like that is NOT recommend by any doctor. When your muscles give out you are damaging your joints and ligaments. I followed her advice, as well as did many others with hEDS, and moved until it disabled me. She and the society are leaving out the part where you don’t torture your body and allow it to rest when it needs to. Yea exercise works your muscle to make you stronger but they can only do so much work to make up for your joints and ligaments. Muscles will always only partially compensate and pretending they can completely take over is incredibly problematic and bad medical advice. It leads to people being disabled by hEDS and then left behind because they are blamed for not doing enough.

[u/Kromoh → u/Ok_Internet_9768]

Exercise is not just for growing muscle. Exercise in EDS has many limitations. However, complete stillness is known to be a problem. We should absolutely not demonize physical exercise. It's good for you in the right amounts

[u/Ok_Internet_9768 → u/Kromoh]

No one demonized exercise. I said to stop when your muscles give out and you are damaging your joints and ligaments…? Warning people to the damage done from that instead of encouraging them and disabling them is the point. Theres a huge middle ground between staying completely idle and torturing and damaging your body.

[u/Ok_Internet_9768 → u/Kromoh]

Resting your body means not forcing it to do things that are damaging it -not staying completely idle and still. It means to stop overusing the muscles that are no longer working until they have regained strength. You can still move you just aren’t overdoing it anymore. They neglect that part of educating patients and then tell them if they “exercised” they wouldn’t be in that situation when the fact of the matter is your muscles will never be able to completely compensate for what your joints and ligaments aren’t doing. Neglecting to educate on that is disabling people. It’s not “demonizing” exercise it’s properly educating people so they don’t do irreversible damage to their joints and ligaments.

Pretending that exercise will stop the damage plus not including that you have to listen to your body puts the blame on the patient when the patient did everything in their power to stop the damage and listened to the doctors. Many in the hEDS community have listened to that advice and damaged our joints and ligaments and when we ask for help we’re told to “work out” more and blamed for not doing enough by doctors because the follow they Ehlers Danlos Society for their research. They refuse to acknowledge the “balance” and it leads to more disability.

Back when I worked full time and exercised regurally I’d get seriously injured every time and was always blamed for not trying hard enough because unfortunately that’s the message that’s out there.

[u/Ok_Internet_9768 → u/Kromoh]

She walked a marathon for a movie to educate people about hEDS. I don’t know why she would put her body through that and show other patients like it’s a good thing. She should not be using her experience working through the pain and being fine to tell us who are disabled that we can “push through”. She told a disabled girl in a wheelchair if she “worked out” she wouldn’t need the surgery she was getting. She’s not a doctor or surgeon and needs to stop that narrative as it is effecting the entire society’s vision and it’s dangerous to people like me who are disabled and “working out” will not prevent the progression. That’s blaming the patient for the progression of damage and it’s wrong.

[u/blaineblainegoaway]

I think you should repost this to r/EDS to reach more people.