SHE'S NOT DISABLED ENOUGH FOR PARALYMPICS?!

Abby Sams is an Adaptive Athlete with Ehlers Danlos Syndrome and dreams of Paralympic Gold. However, the Paralympics say she's not disabled enough to compete.

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[TbirdAnni]

doesn't surprise me that she's "not disabled enough" EDS and HSD aren't recognised as a disability for most parasports. it makes me furious. There is this crazy notion that if we just did enough physio we would all be fine, I do 3 hours physio a day, I can tell you, I am not fine....

[Marjolein]

I'm a professional wheelchair tennis player since 10 years. I have hEDS too. Because the classification rules have changed I'll be kicked out of my sport next year, after the Tokyo Paralympics.
Step 1 of the classification system is check if you've got an "eligable disability". If you do, you move forward to step 2. If you don't, you're out. EDS is not on the list so I'm out. But if I would go to step 2, they would check my functional abilities. For example "can do x amount single leg high heel raises". I can't do those because of the joint instability. So I do not say "I'm not disabled enough". That implies I have more function then other players. I am disabled enough, I just don't have the right label.
It sucks. I'm forced to give up my career. They take away my source of income. It's discrimination for sure.
Thank you for making this item.

[purplestripes]

I'm so happy you did a colab with a zebra, you just made every zebra who watches you cautiously jump for joy lol

[hannahrobin]

I also have hEDS - not strong enough for wheelchair racing as my wrists, elbows and shoulders are flaming piles of shit. I play powerchair football instead which I love.

[erinmalone]

On a similar note... A friend who is a fully state certified guide dog trainer at the biggest training facility had to FIGHT for her accommodations at work. She is severely dyslexic and even disability organizations can be ignorant over "hidden disabilities."

[nathanmoore]

not in a wheelchair myself but I think it's so unfortunate that people who are can be criticized for "not being disabled enough". great video and well done for spreading awareness 😁👍🏼

[MagicLuver]

I have heds and am waiting on delivery of my first custom wheelchair. After three different insurance companies denied me getting one I decided to go and pay for one out of pocket. All of my denials were because I'm "not disabled" it doesn't matter to them that I can't leave my house. I appreciate you covering someone with EDS.

[sixmercer]

I have hEDS and I must say, Abby described it perfectly regarding the physical limitations. I would add one thing she briefly touched on. We have "good" days and bad days....and absolutely horrible days. We also have flares that can put us down like she said, when she could barely get to the bathroom and back. Those flares can last many many months or just a few days.
She mentioned comorbidities. We Zebras suffer a lot with illness. The main trifecta are Gastroparesis which is stomach paralysis but it typically also means our intestines are also very sluggish or paralyzed as well. We don't have the strength in our gut to push food through and it just backs up, we have horrible constipation and some of us need feeding tubes that either go into the stomach or into the jejunum which is the entrance to the small intestines. And some of us even need IV nutrition called TPN (total parenteral nutrition) *I might have spelled that wrong)
The next very common one we have is Dysautanomia and POTS. Our autonomic nervous system is the fight or flight response as well as how out body adjusts to changes that happen with things like movement, where we are in accordance to the space around us etc. It's complicated. The biggest problem we get is POTS (postural orthostatic hypotension) which is another reason a lot of us use a wheelchair. We have episodes of loss of consciousness when we go from sitting to standing or lying down to sitting, even bending over. If you have ever had to steady yourself because you stood up too fast, we go all the way out and down. It just means out blood vessels aren't strong enough (because like almost everything else they're made up of collagen which is what we are lacking and/or is defective and it IS degenerative so this all gets worse with age. I'm 46 and in bed almost all the time mostly due to pain and severe fatigue). Our vessels can't regulate the change in position to push the blood up to our brain fast enough. We also lack blood volume. We have less blood than the average person. We are extremely prone to severe chronic dehydration and like myself, we need daily (or whatever works for whoever) IV hydration which requires a central IV line typically in the chest that is threaded into a large vein in the neck and into the entrance of the atrium of the heart. We do our IV infusions ourselves at home and some have a nurse who comes to change the dressing or if we have a port (a long term little box under the skin that is accessed by a special needle that can either stay in or be removed).
Last but most definitely not least is the most exciting part (sarcasm). Mast Cell Activation Syndrome/Disorder. Very complicated. Mast cells are allergy cells and they just go crazy over random things that are either airborne, ingested, used topically or even a cold or change in the body like pain or the heat or cold, literally anything can set off an allergic reaction that can be mild to deadly. We are the ones who wear masks no matter what while in public places around people or outside our house. Maybe today I have a reaction to strawberries that I don't have a reaction to next week. Or the other way around. They haven't figured out the exact reason why this happens to some Zebras but they think it's because the mast cells are made in the bone marrow and then they reside in the connective tissue, collagen. EDS is a connective tissue disease so it would make sense that defective collagen or connective tissue can cause problems with the abnormal release of mast cells to random triggers.
Connective tissue is the glue that holds everything in the body together and makes things strong enough to hold joints together and make blood vessels function properly and digestion go smoothly. Since it's degenerative, defective, and we don't have enough....well it wreaks havoc on the all functions within the body. It's extremely painful and causes severe chronic fatigue. It's also a spectrum disorder. Like Abby explained some of us Zebras do just fine and it can be very debilitating for others.
My wheelchair has battery powered wheels that assist my pushing without me needing a power chair. I have a portacath in my chest for constant IV access and I give myself saline infusions every day. I have to stay inside in the summer because of severe heat intolerance and geez, I could go on and on.
I'm happy to answer questions if people have them. As long as you're not just being mean. If you read my entire comment, thank you. We definitely need more awareness so that people like Abby can be included and this genetic illness is not looked at as less disabling than say Cerebral Palsy or a spinal cord injury.
Thank you to Abby for being so informative about EDS. I hope one day more people will actually listen. And I hope you are welcomed into the Paralympic Games. Take care my fellow Zebras!❤

[isabelhicks]

I have hEDS too! Also a part time wheelchair user and retired Army vet.

[Pela_patate]

The International Federation of Sport Climbing (IFSC) organizes paraclimbing competitions and world cups for disabled climbers and they made a category called "Limited range, power or stability" and it's very wide, it includes a lot of different disabilities and I know that there are a lot of EDS diagnosed climbers. I hope that in Paralimpics, now that climbing is an Olympic sport, they will still include this category.

[blitz-o-byte]

everyone who says "you're not disabled enough", if faced with the same pain as you, would quickly change their minds and probably not even have the willpower to stand up and TRY to be active
Heck i got a muscle injury once (VERY MILD ONE) and i had a lot of freaking pain angling my leg or putting my body weight onto my leg muscles and THAT was enough to make me extremely frustrated that i couldnt move like the rest of people- i cant imagine how it would be to live years with that since i was only injured for a month... That didnt like, show me how it would be like to be disabled but it showed me a TINY portion of the damage it does to your mind

[JennaGetsCreative]

This is making me think of a story I read a few years back about a blind dressage rider who wasn't allowed to compete in the Paralympics unless she agreed to wear a blindfold because she had light/shadow perception and that wasn't "blind enough."

[clairbby]

i recently went on vacation and i have severe fatigue and a tachycardia disorder, and i don’t have my own wheelchair — i don’t have a diagnosis yet so we aren’t sure if it’s gonna be a long term thing — so i borrowed my great grandmother’s for vacation, as she doesn’t use it often. i have 100% ability to walk and while we were at a restaurant a family saw me stand up to adjust my position in the chair, because i was sitting on something. they began to give me dirty looks and whisper to each other (loud enough for me to hear most of what they were saying). it really got to me that they thought i wasn’t disabled enough to be in a wheelchair, because if i would have walked further than a few feet that day, i probably would have passed out, therefore i needed the aid of a wheelchair. it kind of makes me happy to see more ambulatory wheelchair users :)

[LloydisLearning]

EDS representation. Whoo
Really appreciate how you included the struggles of being diagnosed. Been looking for answers since I was 14 and finally got some at 21. It's a slow process.

[dystoniacdiaries]

"Fat boy wheezing" 😂😂 Reminds me of Chowder running up the hill "Fat kid running. Fat kid running."

[weirdoneontheblock]

I can empathized with parts of how she was treated by doctors. Why is it always that the reason for invisible illnesses is that the patient must be lying? Her diagnosis process with the doctors telling her that she's lying and the personal self doubt reminds me SO much of how it was for me to be diagnosed with Celiac Disease. It took me ten years to be diagnosed, and only after having a few times of being in so much pain after eating that it hurt to cry and other worrying symptoms.

[virginiagill]

Watching this made me cry. Two years ago I was diagnosed with myasthenia gravis. A year ago my doctors recommended I start using a wheelchair because I fall so often. Insurance said no, that it’s not a medical necessity for someone with MG. I miss being active, doing things with friends, feeling safe. It’s hard not to give up hope.

[mehuggy]

Yep I agree with her there is a lot of 'not disabled enough' out there. I myself am Secondary Progressive Multiple Sclerosis and I can stand and walk for a few meters till the pain gets too much. I had to fight for 2 years to get a decent wheelchair to meet my needs. When I try to get help with things it's like sorry you don't have X we can't help you.

[sunnylady]

I totally get the whole ''not looking disabled enough''. I have chronic back pain due to a burst fracture of my L4 and L5 which almost left me paralysed. And because I broke both my heel bones, I can walk a maximum of 6 km or 1.5 hours during the span of a whole day, the rest of the time I can't walk more distance due to pain in my feet. So I often use a mobility scooter and I can also use my bike. But nobody would ever know I had a handicap unless I tell them.

[thekoo]

This is sooo educational. Thank you Richard and Abby. I sure hope the Paralympic committee sees this. Keep rollin!