Why I Don't Look Disabled

Oof! This video was just what happened when I sat down and talked into the camera for a bit 😂I barely scratched the surface. I didn't even mention that "but you don't look disabled" or even "you're too pretty to be disabled" aren't the compliments people sometimes think they are... maybe that's going to be a whole different video xD

This is such a great video, I’m in High School and I’ve been in constant pain for the last few years and it’s so hard to explain to people that just because you can’t see it, does not mean that it doesn’t exist. We’re trying to figure out what I have but they think it may be Ehlers Danlos Syndrome but we can’t get into genetics to confirm it so I’m just being treated as such (physical therapy at the moment). I have to wear a knee brace sometimes especially lately with the weather but I also have major pain in both of my feet so I’m always extremely scared that someone’s going to see the brace and see me unintentionally limping on the other side than what would be ‘expected’ and think I’m faking it or something stupid like that. It’s frustrating to try to explain to people at all, I’ve been told by my own sister that I complain too much because I was trying to tell my parents about the constant pain. I’m sorry this is very long but thank you for this video, you explained it amazingly!

I had issues with my old neighbour as she didn't believe I was disabled, you've hit the nail on the head! I get torn between wanting to educate people and explain myself, and not wanting to explain at all, as people (especially rude nosey ones) aren't entitled to our medical details, and we don't owe them anything. It's tricky, I wish more people understood the things you talked about!

Thank you for sharing your experience and clarifying this point: that disability doesn't look a certain way. I always learn something from your videos. A joy as always to see your work, Robin!

I have multiple chronic illnesses, the most debilitating of which is very embarrassing, meaning I can't even explain myself when fully functional people challenge me on for my shortcomings. I recently had a coworker (and obsessive micromanaging bully) get after me about how I should be able to complete a certain task in 5 minutes, because that's what SHE is capable of. When I replied that I am doing my best and have physical limitations, she replied "well what could I have that would make (doing that task in her gloriously perfect way) difficult?" I told her it was none of her business, and she slammed the door loudly and stalked off. I got my schedule changed so I never have to work with her anymore, but I had to move to the only free day left that I would have had to go out with my husband, while she gets to continue working all of the other days of the week, as her entitled little heart desires. I hope she gets to experience invisible illness someday and have the same grace bestowed on her.

Thank you for being open and sharing! I have chronic migraine and a joint syndrome. I don't look it, but its there! You are awesome Robin!

I get that look. I am audhd, Dysautonomia, hsd, asthma,allergy, chronic high liver enzymes. I hate those ableist. That is why I also have ptsd.

Thank you so much for this video! Really well worded, I'm going to save this to send to people when I start to get interesting questions, its worded way better than I could put it!

This is so, so well explained. I found your channel from an old comment on one of Jessica Kellgren-Fozard’s and instantly fell in love. Amazing video, instant sub from me :) PS - i thought I was the only one who did the rocking back on forth when having to stand still!!

Great video. It's my first time watching one of yours, subbed. Turns out I've picked up yet another fellow zebra with hEDS and dysautonomia. I'm in the long process to get my first wheelchair (manual active user rigid frame with Smart Drive power assist), because standing sucks. Since you're a singer, there's a Kiwi bird kids song that I keep thinking of "I got two wings, but I just can't fly, 'cause I get dizzy when I go too high". (I'm half Kiwi/New Zealander).

I have a bunch of rare, life-threatening medical problems, including needing an organ transplant, yet have an otherwise normal outward appearance. Unfortunately, not looking disabled has made me continue to fight the social security administration since my 20's - now, over 15 years to get disability benefits. The fact is that I want to work, but frequent hypoglycemic seizures prevent this and I am a licensed nurse // emt with multiple college degrees. Fortunately, my state expanded medicaid coverage and at least I don't have to worry about going broke over my life support drugs.

Hi Robin, I just found your channel and I love your videos. You have such great energy!! I wish you success on your career path! Thank you so much for sharing your personal story.

On a related topic, I'm so glad that some awesome people created Canada's first fully disability-led and run opera company, and that it's based right here in the city where I live!

A lot of disabilities are invisible to the human eyes!! You CANNOT see Epilepsy, not unless you see the person have a seizure. I have EDS and Epilepsy, I use a cane or a Rollator. And braces, but it’s only if I’m in extreme pain! I mostly just rely on my back brace.

yea, I get this all the time, people can't see my disability, so they are really clueless.

Oh man, people hitting me with "but you don't look autistic!" Like, it's literally a brain thing, it's not supposed to be visible (thanks, media representation). Also, I don't consider that a compliment, with the whole "masking" thing (which can actually be really painful). I personally tend to struggle with stress management and certain sensory things (such as certain textures for food and clothes, for example) and I'm sometimes prone to meltdowns depending on the situation, but overall my family and people around me have been nothing but respectful towards my condition.

I already have autism and will be examined for a connective tissue disorder that is most likey EDS or HSD As it hurts a lot to walk (and even more to just stand so I can relate to that) so I start limping after like 10 minutes give or take so I guess I look disabled when people can see that I am struggling with walking and not when I am sitting down, to illustrate how stupid it is to say that that you don't look disabled

Thank you so much for making this video! It's very informative and I hope you get plenty of engagement. Also, love your ring splints! 💜

To me as a severely disabled MS patient....even if they are the minority that fakes a disability they are likely mentally handicapped in some way to want to do such a thing.... I would feel sad for someone wanting to pretend to be like this because that is harming them more than me. I hope they grow to be less sad.

Thank you SO MUCH. I have many invisible disabilities and get issues with ppl often. I finally got a "perminate" (perminate= 5 years i think) handicap pass after over a decade of getting 6 month handicap passes every 6 months at a cost And bigger issue having to go to the dmv in person to get the pass anytime soon rather than wait on it being mailed to me who knows when - maybe a month into my 6 months or more. Sending you spoons!