Hello, Jessica! Hello, Hannah! Gracious! There was a lot to talk about on your videos. whew! How about I share what it means to be legally disabled in America? Ok, first of all, you can have a mental or physical disability, or both. Basically, you apply and then you are turned down. So, you either a. give up or b. file an appeal. If you go with plan B, then you should have an attorney. And by "should" I mean, "you better have" an attorney. All of the ones I know take on the case and only get any money if they win. They get a percentage of what is awarded to you. So, nothing out-of-pocket. The government then decides how much money you will get each month based on the income you were making at the time you became disabled. Any disabled person can get disability. Your income does not matter. So, you could be unemployed or be a millionaire. Once you are granted disability, you will be eligible for Medicare, which is the government's insurance, after several years, and I don't remember how long, so I won't even put in a number. I have Part A and B which means I can use it for doctor's visits and for hospitalizations. In my case, it is secondary to my husband's insurance from work. The fun part is if you are mentally disabled. You get to go in every five years to "prove it". I don't know what is involved with "proving it" for physical disabilities, but if it is similar, then it would involve, say, a person who is a parapalegic being required to stand and walk. No, even that is not a good comparison. The proof for continued mental illness is hell. You may go in to the office feeling ok, but by the time you leave, you will be shaking, crying and in need of every anti-anxiety med you are on!
Haha I always think about if I was born in a less advanced time where I would need to work hard for survival, I wouldn't make it. I like your version about the apocalypse! 😂
In the start of the year I got really ill and now I have a diagnosis that makes me disabled for a time and my legs don't have the same strength as they used to
This reminds me of an incident when I injured my ankle and got on a train with an ankle brace. The only seat available was disabled seating, so I sat there. A deaf lady came on the train and started wildly signing at me. I just blanked. She types something out on her phone and shoves it into my face, the gist of it being "this is disabled seating, not temporarily injured seating." I was too exhausted to argue, so got up as she shoved past me and sat down. Next thing, guy sitting next to her stood up and told me to take his seat. I looked down and he was an amputee with an artificial limb, so I was all "no, no please, I'm fine" to which he says "I've been standing on one good leg for twenty years. I'm used to it, you're not." I accepted his generosity and sat down super confused about what disability is.
That's terrible! I don't know about where you live, but in North America and Japan, "disabled seating" signage on busses/train usually are shared with pregnant women and the elderly... pregnancy is more or less a "temporary" physical limitation as well but everyone accepts that they should sit down so I don't see how an injury is any different; Of course if you have a brace on you shouldn't be standing too much, and that should be obvious to any reasonable person. Also, how is a stranger supposed to know if your injury is temporary or not? It could be a recurring injury due to a chronic issue but they don't know that without asking. I'm sorry this happened to you :(
The Truth my wife clearly confused folks by making sure I’m if not a disabled seat on the bus/train sitting down and has been known to suggest that people might want to give there seats up! But I look fine, it’s just one part of the balance system is foobar. But do get some odd looks!
That was so rude of her yes she may be like Jessica and have a physical issue as well as her deafness but you had an obvious brace on your foot and for all she knows you have to wear that brace all the time!
Bathroom thing is weird - I'm in a wheelchair, but I did once have this person (looked like...60s, maybe late 50s) get mad at me for waiting to use the disabled toilet. And it was so surreal? Like...although I otherwise look healthy, I was in a wheelchair! A bright yellow one! You'd think they'd pick up on my disability. My theory remains that it was because I'm young.
I've noticed that some people lash out with anger when they're embarrassed or feel "caught". I'm not defending her because it is ridiculous to be upset that someone in a wheel chair needs to use the only stall that is equipped for them, but thats just where my mind went to when reading your comment.
I have CP (very mild) and I relate. I use to if I could sit and sometimes I couldn't and fell of the floor of the bus because it went too fast and people just always give me weird look especially in my twenties (because my CP doesnt show). It's also weird all the comments of well you dont do this or you dont have a walker... It's akward really.
I remember seeing a post/graphic recently with the quote, "The disabled population is the world's largest minority of which anyone can become a part of at any time." And this really stuck with me and has kind of helped me get over the stigma behind whether or not I can really classify myself as disabled along with some other comments I'm seeing here about disability being a spectrum. I'm not entirely sure why this one in particular has helped me, but it has!
8:46 when you mentioned hearing aids "fixing deafness", i thought, "oh! like glasses!" because a near-sighted person wears glasses, it doesn't mean that they're no longer near-sighted, for example
Disability is on a spectrum, and sometimes disabilities aren't always visible. Psychological disorders, can make it very difficult to get through daily life as well.
So much this! I suffer from ADHD which is *still* so misunderstood by the general population. The worst is having people tell you there is no such thing! I often wish people c could experience it for one day so in 24 hours I can pop the question; still don't think it's a thing? Something Hannah said really resonated too. Legally, I am classed as disabled but I struggle to think of myself as such. While I don't "identify" as disabled because I don't think of myself through the lens of disability. I just think of myself as me and I try not to think of myself in terms of labels. Which is tough, especially in this day and age but I soldier on!. Really enjoy your content Jessica, it is nice to be introduced to Hannah too! Stay beautiful ladies!
I was on both physical and mental disability. I had cancer at age 15 and was diagnosed with schizoaffective in between. Im legally considered disabled but i dont look like i am and i get bs all the time. Especially now since i have a 6 month old and ive been asked "how are you a mother? Your disabled?"
Totally agree. For the longest time, my depression kept me in inpatient psychiatric care (a psych ward) so I often missed classes and wasn't really allowed much freedom. I found it hard to take care of myself most days, yet I never considered myself disabled until very recently.
very true. i have OCD and i'm pretty much house bound from it- and there are even parts of my house i cant go to because of it. i also have physical illness (still getting a diagnosis on that, it's been 6 months of doctors and tests), but i personally find my mental illness much more disabling. physical illness? i just need to sit down a lot or use a cane. mental illness? i can't do basic things like go to the grocery store, restaurants, places to get jobs, i can't always do school, etc.
wittypseudx I’m so glad someone else relates to this! I have bipolar disorder which is classed as a disability and narcolepsy which isn’t. But I find my narcolepsy to be much more debilitating (my bipolar disorder is stabilized with meds). There’s days when I can’t get out of bed because I’m so tired and I don’t feel it’s safe to drive. Some people can’t drive at all because of it. I just wish it were taken more seriously.
Many people with several diagnoses feel not disabled/mentally-ill/chronically-ill enough, even when they get called ableist slurs and can't function normally. Of course, it's also an issue when you have problems that haven't been diagnosed yet. I think that I've been called lazy, a hypochondriac, and different slurs so often even as a child, that I constantly doubt everything and feel guilty.
I tend to forget my mental illness quite often and then compare myself with others or think that it isn’t an excuse since it was or could be way worse...
@@inken201213 That's the thing, we shouldn't compare ourselves to others. It's a thing I do all the time, no matter how many times people tell me and I try to remind myself not to do it.
I feel ya. I have EDS and it only affects my life in ways that I can manage. I walk in pain and I get used to it so other people don't hear me complaining. Not understanding what people say to me when in a noisy environment + discomfort from sensory overload happens. I ask people to repeat what they said, they say "you deaf or what ?! " + tons of other mild to moderate symptoms that people don't notice or dismiss. Do I feel disabled ? When pain keeps me from doing things the normal way or if I'm a bit slower than other people YES. Other than that no. I'm not "normal" enough to be able-bodied and I'm too healthy to be disabled...
Child of God this just blew my mind. I’ve been diagnosed with Joint Hypermobility because in NZ none of the doctors knew what EDS was but I didn’t realise me not being able to hear in crowds was another symptom! 😳
rorisansan yuuup that is a symptom of EDS ! what is weird is that when I’m in class and there are a lot of people talking I can usually hear the teacher just fine but when I’m somewhere where there is a lot of ambiant noise (cars or stuff ) that’s when it gets hard ! (If ya wanna talk more I’m on Twitter @sweetbeehaseds or instagram @loonaginga 😊)
I also got EDS only difference is that I have a lot of comorbidities and use a spectrum of mobility aids, anywhere from a walker to a wheelchair. I get a lot of stares...
I have EDS too! But it’s all pretty much internal pain and it isn’t really visible to others, so it can be hard to try and get people to understand and know that it’s a constant (even though i might look alright on the outside).
This kinda goes along with the what not to say to disabled people as well, but as someone on the autism spectrum, Ive had people tell me "if you just tried harder, you wouldn't be struggling" or (wait for it) "Oh that's not a real disability" OMG can you not....
As woman with autism I cannot tell you how many times I've been told (by medical doctors and other mental health professionals ) that I don't have any obvious characteristics and I am very articulate so I must be doing well as if you can 'recover' from autism. I'm like do you want to see the official paper that states my diagnosis lol. People are just so uneducated.
Yes, if I try really hard I can just change my brain, just forgot to do it. :P Like, WTAF? Like, hey, have you tried regrowing your hand? Not my story, but my friend's. He had lost his arm so he qualified for assistance in the form of adaptations in his home and car etc. He was then checked a while after if he still needed an adapted car (steering wheel and shift). Yeah, the hand hasn't grown back so far...
@@Lytah84 I get that too, the whole "you don't have the characteristics" bit. Yeah, its because I've had to work REAALLLY hard to develop the social skills that everyone else has naturally. It's because I've had to operate in a non autistic world that I don't "look like I have the characteristics."
@Anne-Lou Exactly. With time (and a lot of help and support from various speech language pathologists and therapists) I was able to learn the skills that I naturally did not have. I can't just make it go away if I "try hard enough"
When I was struggling to get to school with my ME/CFS I or my parents asked if I could go and lie down in the PD department between lessons and they so said “No, that’s only for the disabled pupils” which at the time I totally accepted. Now I wander how much more school I would have been able to get to if I had been considered as having a disability instead of “just” an illness!
I was lucky enough to have a supportive school in the sense they allowed me to go part-time, but I often had to argue with the receptionist and produce new doctor's and school letters to sign out. But at the time I considered it an illness not a disability as I was constantly told it's a chronic illness, not a disability, and many of my friends decided I was making it up as I wasn't as severely affected as someone else they might have known or heard of who was bedbound.
Ambers Accent is it?? It which country? I might feel more entitled to the disabled label, if a diagnosis is enough to label me so. I can’t get approved for disability benefits just because it’s impossible to do so here in Australia, even people with ten times more worse things on top of what I’ve got can’t get it but so few of us can work because of the condition. So I’ve never been able to consider myself disabled and feel guilty sitting in the disabled spot on public transport even though I need to sit down, I don’t have a card I can use to prove it if someone gets salty at me :/
So, SO many people with the more hidden illness, like ME/CFS, mental illness, pretty much all the autoimmune disorders, struggle with this. That whole "But you don't look sick" thing. Sigh. It's one of the reasons I love Jessica - it's not clearly obvious all the time, and she says "Doesn't matter - I know what this does to me". Abled-people still have this idea in their mind of what a disabled person looks like, and that's a myth that's hard to break. I mean, in the US, the literal symbol for "handicapped" or "disabled" is a person in a wheelchair. What's funny though, is that 4/7 criteria for a handicapped placard (for parking) are invisible illnesses. ME/CFS can be so disabling, and it seems like when you need to lay down between lessons to go to school, that's moved from chronic illness to disability. It's all on a spectrum.
@@ClarityEmerald That sucks. It's that way in the US, too - where it's incredibly difficult to get on our federal program for disability benefits. 66% of people are denied their first application, and the rest have to move through a process that usually involves a lawyer, an Administrative Law Judge, and 2 years wait time. That's disheartening that Aussies deal with that, too. And honestly? It's easier when outside forces kinda validate it, when other people validate that. You need that spot on public transport, therefore, you deserve that spot. The closest thing we have to a "card" here is handicapped placards for parking spaces. Sometimes, I just want to whip that out to say "See? My doctor and state agree that I need this. If you have a problem with me using this bathroom, take it up with them".
I think one of the biggest issues I have is that my anxiety causes loads of visible symptoms but if I can keep a handle on it, I'm okay. I saw a doctor a lot for a while who was very 'oh it doesn't seem to affect you' and only when she could document actual physical symptoms that were disabling was she like oh right okay so you do have a problem. This whole thing about having to humiliate yourself to get the help you need is ridiculous.
Fun fact: Coeliac disease 'counts' as a disability in Slovakia (where I was born) but doesn't in the UK where I moved to in my twenties. Talk about finding it difficult to define one's identity.
It also doesn't count in the US because if I went to a college in a different state they wouldn't be required to make accommodations in my food and nutrition labs. Thank you California
Actually, it’s a digestive disorder, so in America, under the ADA, Americans with Disabilities Act, accommodations have to be made for you! Especially a school/college! Check with your lawyer!!
Oooh I have ceoliac (as well as type 1 diabetes -ai diseases woop woop) but believe me like if I even come into contact with gluten I feel horrible for two weeks straight and I don't think people understand the severity of it
I thought that the UK definition of disability is any condition that has a substantial long-term impairment which limits one's day to day activities. By this definition Coeliac would count. Edit: www.gov.uk/definition-of-disability-under-equality-act-2010
Both me and my partner are disabled. I have an "invisible" disability while his is visible. He didn't identify as disabled until we started going out and I think it has do with the stigma and expectations of able bodied people. His sister literally said once that he was not disabled (it was in attempt to be positive and encouraging). There is such an expectation to "overcome" your disability, instead of acknowledging your limitations. Even though my disability is less visible, I've always been open about it because my health and well-being is much more important than whether or not someone thinks my disability is valid enough.
I'm in a similar situation! My partner and I are also both disabled, but it's pretty invisible in both of us. Our families are like "hmmm...disabled??? REALLY"
@@Flareontoast Luckily, my mom has always been supportive. My older brother has ADHD, and my mom has always made sure the school gave us proper accommodations.
I’m in a deep depression over it all (RA, Sarcoidosis, Asthmatic, Anxiety, Major Depressive Disorder) future ex is an alcoholic that ALWAYS said it wasn’t a disability and I was lazy. You are BLESSED to have a partner they GETS IT...😥❤️🙏🏾
This! I feel so much pressure to just push through and overcome things, to the point where I question whether I'm actually just lazy/useless/not hardworking and using my illnesses as an excuse for things...especially since they're invisible. I only got diagnosed about 2 years ago, and not many people know how it affects me (especially not my parents, who are always chiding me and telling me to do more). I'm trying to work to that point of valuing my own wellbeing and limitations over other people's perceptions and comments, as well as not feeling like my illnesses are my fault.
So many disabilities are invisible - and the public continually need to be educated on this. I have neurological disabilities which mean I am constantly fatigued (even after 10 hours of sleep at night!) and have frequent migraines and other headaches. Of course I don't "look disabled." Also, here in the US it is very difficult to get the government to decide you're disabled. Two years into the process and I've been turned down twice. I'm told to expect another two years before my appeal gets seen to. I like to joke that if I were in a persistent vegetative state then *maybe* I'd get declared disabled, but only maybe.
I relate to the part about checking the disabled box on a form. Seven months ago when I started the job I have now, I wrestled with that for longer than I care to admit while filling out paperwork for human resources. And it's so weird, because prior to getting this job, I had gone back to school to get training and that training was literally paid for by my states' government specifically because I do have a disability. And so I knew that legally, yes I was disabled. The government had specifically classified me as such, and thought it was severe enough to pay for me to get training in a different field that I could work in. And yet I still hesitated to check that box on the form because I wasn't sure if I was "disabled enough". I eventually did check it, but I hate that I even asked myself that question.
I have accommodations for school and I always wonder if that means I can check the disabled box. I tend to not check it if it’s for accommodations that need a doctor confirmation. I don’t have the time to get an assessment written up every time I want to do something.
I work for an internationally renowned Museum in London. The application was beautiful and made me really happy as it made a distinction between declaring your disability and then asked in a separate question if you would like to be considered under the two-ticks guaranteed interview scheme. I said yes to the disability and didn't tick the second box. I really liked this format.
Once I was at a music festival and tried to use the disabled seating section AND THEY WOULDN’T LET ME IN! Because I didn’t look disabled enough. One of the folks actually told me that I needed to have a disabled card and didn’t believe me that such a thing didn’t exist. I tried and TRIED to find someone there with the authority to overrule that but no one wanted to take responsibility. A big problem is that I didn’t have my Dx yet (was FINALLY Dx’ed at 38!) and so I didn’t feel like I was allowed to need mobility aids. Now that I know better I always take my cane to big events like that, whether I really need it or not, because sometimes OTHER people need a signal that I need accessible accommodations. I mean all that was not going to stop me from seeing Beck, and so I stood the whole night and then barely made it back to the car, and had to stay in bed for two or three days afterward. Worth it I guess but so unnecessary. The disabled seating section wasn’t even close to full.
On a happier note, not too long ago I had a superb experience at another local music venue while using my cane. The staff were all just the right amount of accommodating without being condescending or making me feel like I was a burden. When I ordered food and a drink at concessions I mentioned that I was going to have to come back for one of them, and one of the staff just casually said, “Oh, when this finishes cooking I’ll just follow you out with it,” like, NBD. It was great.
Elena Christian indeed! I think it’s also important to share stories about people who get it right. Like the time an older woman chased me down to (I thought) chastise me for using a disabled parking space, when in reality she just wanted to tell me how beautiful I looked. 😳 Then she got into the van in the disabled spot next to me. That interaction did NOT go how I thought it would!!
You can order Stickman Cards in the UK, though you have to pay a little for them as they are made by a private company. I have 3 of them for my invisible illnesses/disabilities and they put them across in laymen terms that ablies can understand. They explain why I may need to sit down at times or when it _isn't_ necessary for crowds of people to gather around with their expert amateur doctoring skills, panic hysterically or call an ambulance. You can wear them on a lanyard underneath clothing etc so you aren't like some walking advertisement for every disease known to humanity and people don't fear your limbs are going to shoot off at any moment.
It’s really weird when you aren’t legally disabled, but you’re school acknowledges your disability. Especially in high school when, for example, I had an IEP which is a legal document that means the school has to provide certain accommodations or else we could sue them, but I’m not legally disabled.
You are legally disabled or you’d have no need for an IEP! Read the Americans with Disabilities Act. Things such as infertility, diabetes, digestive disorders, cognitive disorders, etc. are all covered by the ADA...
I had an IEP too and had to be in learning classes since i was in 2nd grade. Mostly cuz of the ADHD, but for unable to complete schoolwork because of depression and other things.
I have PTSD, social anxiety, anxiety, depression, among other things. I often feel that I am not disabled enough, even though I am on many different medications and use a service dog. I often don't even tell anyone what my service dog is for because the people I have told don't believe me.
Emily, don’t worry about explaining yourself to anyone! I have PTSD, chronic pain, migraines, narcolepsy, high blood pressure, anxiety, depression, and diabetes...to name a few. All of these are listed in the ADA (Americans with Disabilities Act), so I am technically disabled, however I look perfectly healthy. I know my personal limits and do my best not to push me limits!
I don't know where you're located but in the USA, they're not even allowed to ask what a service dog is for only "Is that a service dog". Don't feel like you owe anyone an explanation of your disabilities or your need for a service dog
There's not such a thing as "mild autism". That's ableist language. And precisely because of what you are saying, we are just disabled. I didn't get my autism diagnosis until last year, at the age of 19. My diagnosis doesn't even say "autism" but "ASD (Asperger's Syndrome)". I don't look visibly autistic, I'm verbal and even quite eloquent. I'd therefore be considered "high-functioning". However, my executive dysfunctioning (which is a trait people with ADHD and ASD usually have, depressed, bipolar and schizophrenic people among other can also have it) is so bad I'm unable to do even the most basic tasks. That's not "mild". That's not "high-functioning". It's just a disability.
@@mikelmontoya2965 I'm very sorry if I offended you or anyone else in any way, this was just a quick comment I wrote while watching a youtube video so obviously didn't think for very long about my wording, my story is that I have been told since I was very young that I am on the autistic spectrum but I am awaiting an assessment, I am very aware that many people experience the symptoms a lot worse than I do so when commenting I didn't want to pretend I had any idea what people such as yourself go through. I apologise again and hope you understand my mistake
@@jennyholloway8192 oh I'm not offended, don't worry! I even liked your comment before leaving mine. I just wanted to give my opinion on why I disagreed with the terminology you were using.
why hello this whole topic is A WILD RIDE and also A VERY STRESSFUL THING that i think about a lot with my own shitty body but this video was SO GOODDDD you absolute blooming angels xxx
The amount of times I’ve been told “oh that doesn’t count” when filling out disability sections of health and safety forms. Like no, sorry but if I’m going to be doing lab or field work, you do definitely need to be aware of these things in order to keep me safe
I find the concept of the world around you being a disabling factor really interesting. With my immune condition, I don't consider myself disabled because as an adult, I've found a job where my chronic exhaustion and frequent illness don't really get in the way of my daily life but in school, it was a completely different story. I had a 504 plan, no one knew what to do with me, I required special accommodations, and I spent most of the time miserable because the environment I was put in was not built for my needs. If you asked me five years ago if I had a disability, I'd say yes. Today, my condition is more of just a fun fact about my that causes me to live only slightly different than people that don't have what I have. I don't identify as disabled. These conversations about disability could honestly go on forever because it really isn't possible to pin down something with such nuance.
I am deaf and wear hearing aids, and I typically identify as disabled because of that. I think if that was all I could probably survive the apocalypse, buuuut I also have severe contamination OCD, and because of that i would definitely not be able to survive. It’s interesting that the thing I consider my disability is not the thing which would make it most difficult to survive the apocalypse. Anyways, very cool video, love you both!!
Nina I’ve never really considered my OCD to be a disability. No one (doctors/therapists) ever told me that I should or could consider it as such. Perhaps because I can already consider myself disabled because of deafness I don’t need to look for that feeling elsewhere. Although, I’m kinda realizing maybe I should be thinking about whether or not my OCD “counts” as a disability. Thanks for your comment, it’s making me think a bit harder about all this.
@@emmachisholm8718 Thanks for answering 😊 i hope i didnt cause too much trouble with you thinking about it, it just thought that perhaps something that debiliates you mentally should count as a disability since it causes you to function in a different way.
Cw: mention of dying. I really wish anaphylaxis was legally considered as a disability, because it would offer those of us with it a lot of protection. We are often dismissed as being over dramatic and fussy eaters (food triggered anaphylaxis at least). As anaphylaxis is a type of allergic reaction it’s often dismissed as not being as severe as it is, but you can literally die from it. In a reaction you can feel your body killing itself because it didn’t like the allergen you’re sensitive to. I’ve been hospitalised with it 10 times last year alone, on my friends 18th birthday I was lucky the ambulance arrived when it did to give me emergency back up meds as I took 2 epipens and they weren’t working. I was dying in front of my mothers eyes and there was nothing she could do except be on the phone to the ambulance. Those of us with anaphylaxis often find we lead a very limited life because of the ana. It can be incredibly disabling and it is not currently recognised as such!
I also find it really tricky as a high functioning depressed person. Basically, I can mostly function as a sort of regular person when I'm depressed, but it's such a huge difference from when I am not that I consider it a disability. Also I tend to get really suicidal and go about my day until the moment I plan to commit suicide which tends to really confuse people. However, since my disabled state is still somewhat functional, most people don't consider me at all disabled.
I kind of feel the same way with my social anxiety. I can manage most things, at least ones I HAVE to do (like shopping by myself or making an appointment with a GP), but it still does affect my life. specially on bad days when it just becomes crushing. But people don't see my struggle. They don't see that I'm standing absolutely terrified at a till because there's someone else in the line behind me and I don't have a trusted person with me. I look fine on the outside. And while I have learnt to basically 'suck it up', my ability to deal with it does not take away from the fact that the situation will still terrify me. I have to deal with it. People that don't know what it's like would break down crying if they had to spend a day in constant fight or flight mode, it's exhausting and difficult. I don't feel like I get to call myself disabled though because I don't feel like anyone would understand how much it can affect my life and my ability to do things. Especially when I am actually doing well and not freaking out 24/7. which is basically when I simply do not leave my house because doing so puts me into panic mode.
I have been there and still am. I've found when I get suicidal if I do some circular breathing exercises it helps to distract me. Circular breathing is when you, for example, breathe in for a count of 4, hold your breath for a count of 4, breathe out for a count of 4, hold for a count of 4 and repeat.
This is what I do through every day. Some of my friends would get pretty surprised when out of the sudden my "good" mood would suddenly turn into me shaking, having a full on panic attack, on the verge of wanting to end it all. Most would understand, but some would label me as overacting, and not depressed because most times I seem happy. It sucks, but oh well, it's life.
Oliver Thorn of the PhilosophyTube channel has a video on here titled "The Cosmonaut" where he talks about having high functioning depression in a similar way to what you go through. It's invisible, but that doesn't make it not a real problem. Your problems are valid, you count. From one depressed person to another, I hope your brain isn't too hard on you, and staying alive keeps happening and gets easier on you.
I have a connective tissue condition called Loeys-Dietz Syndrome, for so many years I didn’t realize that my discomfort was not ‘normal’ so for 28 years I didn’t know I had cervical instability meaning my vertebrae in my neck moved in abnormal ways. Essentially when I looked up my second vertebrae would slide forward causing the first and third to grind against each other and after 28 years of this grinding I had about 18% of two vertebrae missing and nerve damage which required a neck fusion from the skull to C-5. Due to poor insurance in the US, I didn’t receive adequate physical therapy following my neck fusion and the accompanying pelvic bone harvest so I suffered numerous subluxations of my right hip and now use a cane. Due to being ‘younger’ I’ve frequently gotten reactions like Jessica shared after leaving the accessible restroom. Love this video and both of your honesty.
One of the most frustrating parts of my illness, is the whack-a-mole feeling of my ableness. I am not disabled, usually. I have psoriasis and psoriatic arthritis, and take biologics (injections). The arthritis can be crippling. I had a period without medication (insurance issues) where I couldn't get out of bed. My partner had to help me stand up, I couldntwalk without crutches, and for some reason my left shoulder was stuck in 1 position. My skin was destroyed in huge patches and I bled through everything. With my medication however, I am almost normal. I am still in pain, but I have joint mobility, and my skin has cleard up for the most part. However, the medication side effects can have a whole host of their own issues. So when medicated I am abled, but the disability is always looming. However it isn't as visible ( I don't typically show my skin) and if I don't vocalise my pain no-one else knows. It also isn't really recognized as disabling, so it makes me feel invalid somehow.
I watched this video when it was published, and now 4 years later I've got long-term joint mobility and pain issues in my knees/hips caused by a deformity in my legs that was dismissed as being purely aesthetic when I was younger. I've been in physio for a year (a referral for which I waited nearly 6 months), but because it's the NHS they're reluctant to even consider sending me for x-rays or a consult with orthopaedics. I wear supports and can barely walk 1,000 steps a day without a pain hangover, but still I've been reluctant to even ask for mobility aids, let alone call myself disabled - but last week, a friend who's had several lifelong disabilities told me something that really motivated me to claim the term. She said that "disabled" isn't a list of conditions, or a set of criteria; it's a state of being that can be temporary, long-term or permanent. If something involuntary about yourself, whether a physical or psychological issue, is stopping you from living life the way you have, or want to, then it is a disability. It motivated me so much that I bought myself a walking stick, and jfc I could have saved myself so much pain if I'd had that perspective sooner.
The situational disability thing is something I relate to a lot. Generally I think the word that fits my situation best is "life altering". I don't have a "normal" life and what I do is based on my health and abilities, but there are not a lot of situations in which my conditions are properly disabling. I spend a lot of my time sat on the soaf watching TV. I can do that just fine (I might be in pain or tired or whatever, but I'm still able to do that thing) so I'm not disabled then. I go on outings, get the bus and I can sit on a bus (I might be on the bus then cos I'm feeling unwell and I've cut my outing short, but I'm able to do that thing) so I'm not disabled then. If all the seats were full though that's where I become disabled because I am not able to stand (well not without it impacting me significantly). If I'm visiting a cinema and there's a line to get tickets I'm not disabled cos I'm able to stand in a short line. If it's a 2 hour long line at a theme park though I am disabled cos I'm not able to wait in a line for that long. I fit the "criteria" of disabled, but it's my choice when I apply it. It's my word to use when I think is appropriate for me. Likewise how I and people I know use it is my choice. I don't mind much about all this "person" stuff as long as there's the right intent and my partner and I will even use joke-ie words for my situation. That works for me and that's my choice, but I would always try to respect other's choices too and use the most polite terms I could think of when talking to others. It took me a while to feelcomfortable owning that word though. I wasn't really sure I had the right to before. Same with being a wheelchair user (I use a chair but only occasionaly, so am I really allowed to call myself that? Do I really have a legitimate reason to use one? Am I faking? Will other people think I'm faking? etc). I've honestly found there's a whole lot of self doubt with chronic illness and the like. I guess especially when things aren't visible or aren't consistent. It's really awesome to see others talking about this stuff cos it helps show that it's normal to have those doubts and it's fine not to be the cliche image of disability. :)
I alternate between "disabled person" and "person with a disability" depending on the situation and the severity of my symptoms at the time. I have UCTD and related neuropathies that are waxing waning. If I'm having a flare up and I need my crutches/walker, or I need the disabled toilet, if I'm having to give up certain activities or ask for help/support with certain activities then I identify as a "disabled person", I'm asking for help because my disability comes first, it's something that I'm hyper-conscious of. But day to day, if I'm not struggling with anything, if I'm not requiring any special access or accommodations, then I'm not thinking about my disability, I'm just a person "oh, but I also just happen to have this illness that gives me disabilities". I work in community services so I have to remember to use person first language because in Australia it's considered the most politically correct and it's a sign of an empathetic and inclusive employee. But I'm one of the few people at my job who asks clients "how do you identify?" and then I try to remember what language makes that individual most comfortable. Some people even like to use terms like "handicapped" which personally I don't like but it's not up to me, if that's how they identify it's my responsibility to respect that. My brother has ASD and he likes the term "differently abled", he's explained why this term appeals to him and his condition, I personally don't use that term unless I'm talking to him or about him, because that's his personal identity. I think that's the most important thing for anyone, able bodied or disabled to keep in mind - it's about how the individual identifies that matters, just because you think person first language is better doesn't automatically mean that's the language that the person you're talking to feels the most comfortable with. Ask their preferences and respect their preferences.
I honestly love everything about this video. I have 3 “invisible” disabilities (CP, anxiety, depression) and people often don’t notice it until I’m having a severe pain/bad mental day. I used to wear a brace and had casts from surgeries several times, and able-bodied people had the weirdest reactions to it as if I was an alien...it’s so weird. The “legally disabled” thing is also super weird... can we not do that...? Being disabled is nothing to do with what able-bodied people think of us. Just b/c I look “normal” doesn’t mean I’m not disabled, y’all.
This video was really eye opening for me, because I struggle with ADHD, anxiety and depression and my whole life I've always thought I was just lazy or "a product of bad parenting", because that's what people told me. Even after my ADHD diagnosis, when I was like "Oh, so I do have an actual thing that makes me like that, and I'm not just lazy?", even then I still didn't consider myself disabled because I can technically do things by myself. For example, physically I'm completely able to just stand up, go to the bathroom and shower, technically I can just wake up at 6:30am, go to school, arrive there at 7:00am, stay on a desk for six hours, come home write my homework, study and then repeat the cycle again. But the question is, do I do all of those things? And the genuine answer is no, I don't do them, because first of all, my executive dysfunction is so bad that I never just "stand up and go shower", It's always a big struggle to convince myself to do a task that I don't want to, It can take days for me to actually do it, and sometimes I just completely forget about it and remember when It's either too late (if the task has a deadline) or I have too little energy. Second of all my time management is so poor that I am late for school pretty much almost every single day, because maybe I thought dressing up would take just about 5 minutes, but in reality it was more like 20, or packing my bag would for sure not be more than 10 minutes, but in fact I spent 30 just trying to find my biology notebook. And third of all, I have a really hard time paying attention to subjects I don't like, like Math, so I end up just not listening the whole lesson and therefore not understanding anything of what the teacher said. So having a disability doesn't just mean being physically disabled or in a wheelchair, it can also mean not being able to perform a task, because your brain doesn't allow you to, and a lot more things that can be just as hard.
@@etoilesvivesah a follower adhd-er! I feel this. most of the time, I understood the material we were learning in school, but I just *couldn't* do homework. I tried so many ADHD meds before finally finding the right one...my last semester of high school
I love the apocalypse example she gives at the end! I was talking about this with my mother one day how I live a completely able bodied life, but if I were to be put in a situation where I didn't have my glasses, or even just did not have updated lenses when I needed them, I wouldn't be able to care for myself, I can't even walk safely without them. It would be suddenly very clear that I am, in fact, disabled. Things like prosthetics, mobility aids, cochlear implants, even glasses all make life less "disabling" but if the apocalypse hit we'd all be screwed so there's really no need to decide now who is and isn't disabled "enough". That all being said I don't personally ID as disabled because we're all taught not to see glasses as an aid for a disability. People tend to be genuinely shocked that i use them for more than just a small correction and that I need them to function. But that's a whole other rant.
Love seeing you guys chat together! I feel like the whole PIP thing is a major issue and a big reason that many UK people think they're "not disabled enough". Most disabled people I'm friends with have been turned down for PIP, even wheelchair users and some with lifelong physical disabilities (I have a variable chronic illness and I've just kind of come to expect people viewing me as not disabled - I thought they would at least get more understanding but apparently not). Several people I know had DLA for life but are told they can't have PIP. It's so ridiculous and horrible I don't even know where to start!
In terms of the Equality Act, the definition of disability is a "physical or mental impairment that has a substantial, long term negative effect on your ability to do daily activities." As definitions go, it's not bad. It's broad enough that any and all disabled people are covered. I don't think I've seen a better definition anywhere.
I've watched you and Hanna for years now. I am always wanting to learn more about how to interact better with people who have disabilities. Also, I like you vintage videos. I figure even at this retirement age, I want to learn more and be a good friend to others. Please keep making more videos on both of these topics and I do like your history videos too.
i first watched this video in 2019 (i found my original comment) and i didn't know then if i could claim disability as an identity for myself. i have hypermobile eds, probably pots, adhd, severe social anxiety, depression, pcos, some chronic fatigue, and i was also growth hormone deficient as a kid. and that's just what i know i have. i decided over quarantine when my symptoms got worse that i'm allowed to call myself disabled since my conditions affect every area of my life and i would be a completely different and more functional person without them. i was so scared to use the word for myself since i never look injured or disabled except the occasional joint brace or limping walk, but i was scared for nothing. i haven't encountered any truly malicious ableism from anybody in my life yet. my friends and classmates have never questioned me, my professors have been understanding, and my employers have never pushed me to do more than i could handle. it's been so liberating. if anybody is reading this and looking for a sign that they're allowed to call themselves disabled, this is it. if you're spending more than 60 seconds thinking really hard about whether your condition affects you enough to be called a disability, it's probably a disability.
One thing I have always been wondering. What the heck is the deal with WEIGHTED doors on accessible restrooms? How are you supposed to wrestle through one of those doors when you're in a wheelchair or on crutches, for example? The door is made to close itself and there you are. WHERE'S THE LOGIC??
RickyKnives Nowhere. My school sucks and turns off the accessible doors for ‘safety reasons’ and they are SO SO HEAVY. I can’t go through them, they’re just too heavy
The worst I've had was at a pub, on way to restroom a gent held the door open for me, but on way out I could not push door and hadto pound on it for someone to open it for me :(
I loved the description about disability and the apocalypse. Great way to help people understand what it is like and what it feels like to have a disability or even just an illness. This was a great video and both of you are lovely and funny.
'Person with a disability' users often say we would use that term because it's humanising but that implies that disability us inherently dehumanising and they can't see us as people without that reminder. I'm autistic and have mental health problems but I also broke my knee (hit by a car on a zebra crossing) and it's really interesting seeing how my autism, mental health problems and broken knee disable me in similar but different ways. Example: taxis are hard for me because I can't talk on the phone (thankfully they now have an app) and the driver's freak me out, but now I also struggle to get into them with my leg brace and crutches.
It's so interesting to learn about what you prefer to be called, meaning 'disabled person' or 'person who is disabled'. I live in Canada, and I work with children. In school, like actually in class, we were told that you should never say 'disabled child' and it was always 'child with a disability' because it was incredibly limiting. Like... we were tested on this, this was on my exam. So hearing that that's not the case is sort of jarring but I'm so glad you talked about that. I imagine it depends on the person, and will definitely ask in the future what the person's preference is if it comes up!
I love the would I survive an apocalypse definition. I feel guilt if I were to ever say I was disabled. But having coworkers who aren't made me realize lately just how much different from them I am... I'm not able to explain it in short but I do have invisible struggles.
I actually think I’d do okay in the apocalypse (well as ‘okay’ as you can be) because I have autism so I’m really good at problem solving. I still do count myself as disabled though
Yes. I think that there are various disabilities that would thrive during the apocalypse that suffer in the confined judgement of "normal civilised society".
I have PTSD, something that UK law struggles with quite a bit. Essentially it can be classed as a disability, but a PTSD diagnosis doesn't automatically make a person disabled in the eyes of the law. I find that it can be like depression in that it varies in severity over time, so some months I think of myself as 99% able and other months it's more like 30%. I really struggle with the whole 'disabled enough' mindset and often beat myself up over not being able to do things that, a month down the line, I might be able to do. Every day is a battle, but your videos make it easier. Thank you for your kind, insightful words Jessica. You're truly amazing.
I think it's because you can get PTSD from any kind of trauma, so it's such a broad spectrum that it can't be generalized. I have it but it doesn't immediately affect my ability to study or work for example. It only gets triggered very specifically. It does affect my ability to go to the cinema, watch movies or series at home, read headlines, listen to people talk or joke about the subject, and it has affected my romantic relationship a hell of a lot. And it costs a fortune in therapy lol. Well tbh it has actually affected my studying at some point because of the subject being talked about in a documentaries in psychology class.. Had a complete meltdown but was hiding it from everyone (I had no idea what ptsd was at that time).. So if it gets triggered at school or work I will struggle of course. Sometimes for days. So maybe that even counts as a disability. But in my case I "just" need to finish therapy and then I shouldn't suffer that severely from it anymore. Then I should be able to be confronted with it without having a panic attack, and it that case it won't be a disability anymore. For others, PTSD could be caused by maybe much longer periods of trauma, much worse trauma, much more complex trauma, something they're confronted with much more places and scenarios etc., so they'll suffer from it much much more often than me for example, and it will affect their ability to go to work or school several times a week, maybe every day. And therapy will be longer and more difficult and time consuming.
Another problem with knowing if you should or shouldn't call yourself disabled is that you don't know how others people's bodies feel. I know that my heart condition doesn't usually affect my daily life unless I need to run, but I know that it could affect my ability to work and it could put me in the hospital. I wouldn't call myself disabled, personally, but I'm also like 'am I really able-bodied though?' It's definitely a strange thing to try and navigate.
I really appreciate you guys for including mental illnesses in this. I'm bipolar, which severely affects my life, including limiting the kinds of jobs I can have and where I can go. I'm barely capable of functioning on my own. But even though my doctor, therapist, and med tech all tell me it's a disability, I feel like I'm not allowed to call it that.
I have fibromyalgia and arthritis. I am chronically ill and that causes mobility problems, which disable me. People don't see disability when they look at me. I want to share this video to everyone who looks at me funny when I can barely get out of a chair.
Girl me too! I’m really struggling to identify if I am disabled as a person with fibromyalgia and cfs - I need the disabled seats or toilets sometimes, I can’t stand for long at all and need to sit, can’t walk far and don’t look sick so I have bad anxiety about being told I can’t sit there, especially when there are Able bodies people sitting there Until a disabled person gets on the train. I don’t have something I can physically show them to say I am disabled so I don’t feel like I’m allowed to say I am?
@@ClarityEmerald You are definitely allowed! I live in London and I just got the "please give me a seat" badge and card that Hannah talked about in one of her videos. If I stand on the train or bus, I can't hold on cause my hands and my wrists hurt too much. Or I'm too exhausted to stand. I totally relate too, cause it does stop you from going out. There's a part of me that's thought about getting a walking stick just to have something to show. Look up the social model of disability. If society disables you, then yes you are disabled! keep going honey!!! :)
@@ClarityEmerald look up Stickman Communication cards. They are fantastic ways of identifying a disability when you require to in a way that ablies can understand.
Thanks so much for this video. In the past 19 months, I've had organ failure, emergency organ removal, a horrible post-op recovery, and have now developed 2 chronic illnesses (both of which I have to take daily medication for), and I constantly get told (by able-bodied people) that I'm not disabled enough, or I don't look disabled. Watching this was very validating.
This is incredibly timely for me! I got a call this Monday to tell me I've been approved for a disability support pension, and in addition to the funding I receive from the national disability insurance scheme (NDIS, I think on par with the PIP?), I've been having weird feelings re: disability and mental illness. My mental disorders have, for most of my adult life, made basic functioning near impossible, and I do require daily assistance just to live a somewhat normal life. But calling myself disabled still feels wrong, even when I've proved to a notoriously difficult government system that I am? It's a real weird time.
In Denmark we have this thing called a companion card. According to the website it's "issued to persons with disabilities who need a companion to travel in public space" It basically means that you can bring a person with you for free in the train/bus/museum/cinema. Both physical and mental impairments qualify for the card and if the impairment is chronic you only have to pay the £20 once and then you get a new card every 3 years. If it isn't chronic you can still get the card, but when the card expires you'll have to send in a new application and pay another £20
I say i'm not disabled enough until people start to scream or deem me as useless amd stupid. Because i'm smart (supposedly ??) and can pretend to be a person for a while, but then i can't comprehend half of what they said for three different reasons, i'm too picky, i'm allergic to dust so i can't clean or be around cleaning stuff with harsh smells... But everyone says i don't look disabled :) or they dehumanize me and don't understand floating abilities. Also recently i've been having joint pain and numbing feet. Great.
Being diagnosed with Aspergers last year, which finally put so many puzzle pieces together in a second, I'm wondering about this question a lot. Through masking and my own wish to be "normal" I got myself in the situation, where most people can't comprehend how I much I can struggle with things that are easy for others - and it´s hard to tiptoe around people and hold myself back. When I was diagnosed with Endometriosis two years ago though, people where so different considering my diagnosis. The where nice, and also comforting me. Also accepting, why I was struggling physically before with those cramps straight from hell. It bothers me, that also with a mental disability (though I don't really like the term) it´s also quiet annoying with people telling me stuff like "oh but you don't have that much Aspergers" or "I know people that have Asperger, but they are so different than you are - I doubt you have it." So thanks for this video :)
The different argument just made me go "huh?" People are different, and so are their symptoms of anything. I mean, it's widely known by now that on average many women will have different symptoms than men. That goes for things like heart attacks, mental illnesses and Asperger and many others. And then the differences in symptoms between individuals can be greater still. (I don't think symptoms is the best word here, but I couldn't think of a better one)
@@AnnekeOosterink Exactly! People are so fast to brush off my diagnosis as non existent due to prejudices about Asperger or the Autistic spectrum. Most of the time they still have this Rainman picture in there mind, and I don't fit their stereotyp. On the other hand "visible" traits like me not wanting you look people in the eyes, my stubbornness with routines and many more things are brushed of as something that is just part of me. Like I'm some quirky girl who likes to be an introvert or whatever. The funny thing is that during my childhood and teens people joked about me "being autistic", but now as I have the diagnosis I have to prove myself to others, that my quirks are not just quirks.... So it´s nice to hear positiv response from people knowing how various "disabilities" affect people :)
My depression, derealization, depersonalization, and anxiety disorder has legitimately brought me physical pain and the actual inability to move or get up out of bed. Though it’s gotten better from say like a year ago, where I could barely get through a school day without an anxiety attack or derealizing to the point where I don’t know where I am, I’m still going through the motions of years taking medications and regular therapy. There are months where I’m essentially “back to square one”, and months where I think to myself, “ oh, I’m fine. I don’t need medication or therapy, I’m functioning quite well.” I’m still not sure where I stand on if I’m disabled or not though, I’m not sure.
This is such a lovely video. I have struggled my whole life identifying as a Disabled person (I have CP, but it is considered "mild"...). A lot of people have said "But you don't *look* disabled!", and they would say it as if it was a compliment. And because I was taught to sweep my CP under the rug, I was not considered "disabled enough" by many as well. I made my own TH-cam channel simply to build up my courage and talk about my experiences with CP. Oh my goodness, the Disability vs. The Apocalypse idea sounds so fun! I would love to make a response video to it as well. Take care, and thanks for sharing!
I really needed this video right now. I had a really emotional conversation recently where I acknowledged my guilt for calling myself disabled. I was born with a unilateral hearing loss and it took me 15 years (and my audiologist telling me I'm disabled) to be able to say I'm disabled for the first time. Since then, I've been coming to terms with the fact that my disability prevents me from doing things that I've wanted to do for years and that it's more complicated than just not being able to hear on one side. I still can't help the guilt I feel when I describe myself as disabled but I'm closer to fully accepting myself.
11:46 - Thank you, I'm still confused, because I feel disabled and I have lost my career due to my 'disability', but I'm legally not disabled. But thank you ;) x
How do you think this ties in with learning disabilities? I'm dyslexic but always feel really guilty about checking 'disabled' on forms even though it effects my daily life
I have dyslexia (among other things) and if it was my only impairment I would still tick the disabled box. It might not disable me in every situation but I would still need adaptions at work and to use adaptions at home for bills and paperwork.
I recently found this channel and this is something I personally struggle with big time, with mental and now more recently physical but not visible disabilities. Conversations like this are so important and I am so glad I found this video.
Thank you for this video. I’ve just recently managed to get an explanation and diagnosis as to why my joints have been in so much pain, and it’s been a really confusing time for me. I have to take medication and do exercises to deal with the pain, and all of the joints in my body hurt (sometimes so badly I can’t get out of bed, and I haven’t been able to write for longer than 5 minutes without pain for about 4 years), but I’ve been struggling with whether or not I ‘count’ as disabled. Some members of my family and people around me tell me that I’m not, but my university thinks that I am, as they told me to apply for DSA (Disabled Students Allowance), even though it’s taken months to get that sorted with an official diagnosis, plus lots of doctors either couldn’t find out what was wrong or told me that it happens sometimes, and to just deal with it because in some cases it goes away for no reason. My point is (sorry that was so long and personal) that I’ve suddenly been thrust into this world of possibly being disabled, it’s been really confusing, but your videos have always been comforting, informative and entertaining, no matter what they’re about (I’m also asexual biromantic so I’ve been struggling with people telling me that I’m not gay enough and I’m basically a straight person trying to be special. Yay.) Thank you for all of your content and kind words, and I wish you all the best.
Hugs Freya! I've been in that boat as well, being confused about my own sexuality (I'm demi-sexual biromantic, and barely part of the LGBTQ+ community because it's so new to me and not sure how I'll be accepted) but I'm also on my diagnosis journey for my pain. I've been diagnosed with Fibromyalgia but it doesn't describe my joint pain and semi-dislocations. I feel like what matters most is understanding your needs, and if a label helps then that's what's needed. Good on you for looking out for yourself to look out for yourself the best you can. Wishing you many good days ahead for you~
Speaking from Canada, as a Type 1 Diabetic: for a long time I did not identify as disabled, as I seemed to be able to manage without what I thought was a 'regular' amount of help - outpatient visits regularly at my specialist clinic and an insulin pump. I am now at a point where the intersection of my mental health, physical health AND diabetes make day to day life pretty hard. Im now check that box on forms, and am working to better advocate for myself. Its still hard, and awkward, and I am so glad that you are open about life with disabilities, so others can feel more brave about doing so themselves.
2 beautiful people giving an education.... Love it 😁.... Oh yeah hi Claudia ✌🏿 ☺ Every disability isn't seen. I think of ptsd for one. I believe some disabilities can be emotional too like depression. It just takes having an open mind I guess
I am currently working on my Master's thesis and the topic of disability is an integral part of it. It's just hard to define it without excluding or including groups that may have a problem with that. For example, Deaf people might not consider themselves disabled, but using the words "physical differences" doesn't really include neurodiversity and disability might not even be the word neurodivergents want at all. There is also the topic of chronic and mental illness that you talked about here. But all of these people would/might need accommodation in university or at a job and would go to the "disability office". I'm just glad that I can do it in English and don't have to use my native language because there are so many different connotations there that the internet or research don't generally discuss.
This video came at a perfect time for me. I have fibromylagia (+ a bunch of other chronic conditions) and in the last year got put on a med that brought me from nearly housebound most days to having perfect attendance at uni, and it's really had me grappling with whether or not I'm still sick enough. But definitely wouldn't survive the apocalypse so guess I am!
What medicine is that? I was just told to eat paracetamol every day lol. I only do when it's really really bad though but I also have five thousand other conditions so my battery gets drained terribly fast every day. I guess less or no pain would drain me less tbh.
CookieG House I try not to just recommend it so everybody cause fibro is a very case by case thing but it’s Aventyl, a tricyclic antidepressant often used to treat pain. Might be something to look into! I feel you on the many conditions thing :( sending good vibes your way!
@@chronicallycal Thank you! I totally get that, I just sometimes feel like looking into the options. I mean, if there is a good solution out there why not try to find it. Then I can ask my doctor about it. Good vibes right back at you.
CookieG House I’m on a low dose and my worst side effect at the moment (little over a year in) is dry eyes! And yeah I definitely get looking for solutions. It can often feel like there’s nothing we can do so it’s always good to at least hear about options :’) Thank you!
I'm SO SO glad you addressed the 'gov decide your disabled' issue!! I've been deaf in one ear since I was 6. When I was a teenager my mum tried applying (mostly out of curiosity to see if there was any support I qualified for) to get a letter back saying I wasn't disabled because I could technically still hear... I mean, provided no important sounds come from behind me, my left, are quiet, from sources without lips to read, or within busy environments... yeah sure. I CAN hear. But it means so often when I fill in forms there'll be a box that's essentially like 'does the government recognise you as disabled?' to which I'm like well, no. But then the next box is 'if yes, please describe it to us and tell us what we need to do to accommodate for you'. Every time I have to have the dilemma of 'do I technically lie but get the provisions I need to hear, or tell the truth and await yet another situation where I have no idea what's going on?' And I recognise that all I have is one non-working ear so it isn't too difficult a disability, but it is a disability non the less. Half the battle is just having to explain it again and again!
I have a similar experience. I am almost fully deaf in my right ear, and have been since I can remember. My parents never checked about governmental recognition, but they used to let my schools/teachers know about it so I could be sat on the side of rooms where I could hear better. But, as I got older I kind of just stopped mentioning it and started to just adjust myself, and try to self-accommodate for my hearing. So now I just try to sit on the right side of places and by people, etc so I don’t have to crane my neck to hear, or just not be able to hear well. Ultimately it’s not the worst, but I think that is in part just because I have learned to adapt, and the people close to me know and some have also learned to adapt to to help me. The box check is the hardest for me. I don’t ever check it, but every time I’m confronted with it I think about it. I guess I just feel like it’s not real or valid or debilitating enough because I have learned to make accommodations for myself and it’s not as serious as full deafness.
The point about the stalls really struck a chord with me. I use a walker and I sometimes get a little bitter if a visibly “able-bodied” person takes an accessible bathroom stall or dressing room. I’ll think twice about this next time!! Thanks Jessica and Hannah!!
I became disabled at the age of 21, and being hurt at work at a young age, with back injury and a closed head injury, the worst judgement was not from people who didn't know me, but cousins and family, I waited 30 years to have back surgery, having never been in a wheel chair I wanted to keep that way. and then they went after the pain meds some asked me for them I said no, others used it as a ploy to get me to have the back work done, most people I know like me can't stand taking meds but do because the dr. tells them to, I look mine up, and see what they do just incase some thing goes bad. but that's me may god bless you lady's with love and happiness .
I still don’t know if I should call myself disabled or not. (I still don’t have a proper diagnosis for my chronic pains). Been working hard to get back into work (in school atm). I can’t stand on buses or trains or I can’t get out of bed the next day. Long days do the same. I can only attend school two days a week (it’s a very long commute), I tried three days for one of my courses. Managed two weeks then couldn’t get out of bed without help for a week and a half. All this, the uncertainty of not having a diagnosis, knowing that I’m very limited in my physical abilities, and my depression nagging at me with just this question that this video addresses. I can’t thank you two how much hearing your discussion is helpful. Ps. I wouldn’t survive an apocalypse. Regardless of its nature. I’m very dependent on my meds for survival.
Miara Avalin you ARE disabled because this condition affects your ability to do simple, every day tasks. At least the symptoms described affect you in a way that, if you live in the USA, you are disabled under the ADA, Americans with Disabilities Act.
I hope you haven't stopped reading the comment section yet. I just wanted to say thank you because this video gave me the courage I needed to put my OCD on the disability section of a volunteer application form. I was so anxious that I wasn't disabled enough or because it wasn't physical that I'd be ridiculed and questioned about it. I realised that it would impact my ability to do certain jobs and therefore was disabling and valid. Your videos really do have an impact on the world and because of how amazing you are, the change you're making is such a positive one. Thank you :)
Love this. I've had chronic illnesses for more than half and am mostly bed and housebound. I've still been accused of not being ill, but being attention seeking and lazy - especially when I post about it. I've also been told many times that I look fine, judged on the times I'm able to be out of the house for a small time, told I shouldn't be going on holiday while also being told I'm wrong for being in bed, and told that because I can read or go online that I'm not that ill. These voices may be a minority, but quieting them in your head can be hard. These days I'm much better at that but it's disgusting how able bodied treat those who are sick. Thank you so much for this viseo and using your platforms to highlight disability and that we don't always look sick and are allowed to live.
Listening to you two is like listening to my disabled wife. She has been this way her whole life, in pain her whole life, but does not show it. Unless she is wearing all her braces. I love listening to you two!
Love this video. I'm in a wheelchair but generally every day life is average so actually it can bug me when people overestimate my disabledness. Though, what I found hilarious, is that one woman looked at me and asked "what [I'd] done" (assuming I'd just had an injury) but before I could answer, she then looked at my sister and said "or is it permanent?" 😡 I understand why people like person first but personally I don't have the time or patience to say "I'm a person with a disability" multiple times when I could just say "I'm disabled" 😂
I love love love this discussion, as someone who's been hearing impaired since childhood and gotten used to the hearing aids etc etc I never considered myself disabled until university when I got DSA and exam provisions. I also struggle with how my disability is visible at times, and not at others (i.e. when I am/aren't wearing aids, or when my hair is up/down), and the potential effect that can have on peoples perception of me. Thanks for having this conversation!
This made me feel a lot better about everything that is wrong with me. Some days are ok and some days are really bad and when I have a bad day people just act like “well you were fine yesterday” and when I have good days they act like “well you were acting like you were dying yesterday”. I have a couple chronic pain disorders and ended up suffering an over dose from over prescribed medication and now have a language processing disorder from it. Woot. My biggest allies have been coworkers who have suffered from chronic pain disorders and brain injuries.
Thanks so much for making videos like these. I have a number of invisible disabilities (physical and mental/learning), and I'm always worrying about whether I'm disabled enough to do things like sit in the seats reserved for disabled people on public transport, or ask my professors for extra help, and whether or not it would be particularly weird for me just to lie down on the floor in the hall because my back hurts so much. Watching your videos and hearing these sorts of conversations really helps me to own myself and my disabilities, and helps give me confidence to live my life. So thank you. (:
Thank you so much for this. Truly. As someone with Bipolar Disorder, as well as comorbid social anxiety, ADD, Diabetes, and serious joint and ligament injuries from a motorcycle accident years ago, I do struggle with wondering if I am disabled enough so much. I struggle not to buy in to what others say when they want me to do something I know I cannot do, just because it looks like I could do it. I grew up with everybody thinking I was just lazy or useless as well. While receiving disability payments from the government (I live in Canada), I was also confused when my doctor informed me that this did NOT mean I was legally disabled. It was...strengthening to watch the two of you discuss something that is so often on my mind.
I get migraines and very severe headaches all the time.. Which is temporarily disabling, I spend more than 12 hours in complete agony and can’t function at all. The other day I was thinking about this topic and thinking that I probably am, in sense of I can’t do certain jobs or do certain things that triggers my headache I can’t go on long trips or this or that And in my mind I think I kinda am, but I don’t know really tbh.
i always enjoy your conversations. disability is something that people dont understand. it can be invisible to most or it can be someone in a wheel chair/ walking cane/ prosthetics. a have a friend who broke her back in a horse riding accident and struggled through her job delivering pizzas so she didnt end up homeless. she had a disabled sticker on her car so she could use the accessable carparks and came back to her car one night to a nasty note that said if she was so disabled, than what was she doing working as a delivery driver. another friend was in a car accident and needed the use of a cane to walk (and also had a disabled sticker on his car) and was told by a road works person that he had to park down the street and walk to his home because the road was closed and too bad buddy.
Incorrect. Whether you’re having seizures now or not, you’re technically always disabled. You cannot control when/if you have a seizure! A disability is a disability. Just ignore the uneducated, judgmental people& move on!
@@Raev222 WTF No I have more of a chance of seizures during winter due to the angle of the sun shining through tree branches, fences, hedgerows etc when in a vehicle or even walking, so fun for me! Also, it is impossible to predict seizures, you can sometimes feel when one is coming on, (an Aura) but not always.
My disability journey really started fall 2017, the start of my 3rd year of vet school, as I started deveoping progressively worse pain, fatigue, and weakness. Over the next year, I was diagnosed with fibromyalgia and autoimmune disease (sjogren's syndrome +/- scleroderma), ended up on 40+ pills per day for my pain and fatigue to be low enough for me to survive clinics, and have completed my clinical year of veterinary school in a power wheelchair, as I cannot stand or walk for long periods of time. I have only 3wks to go (which are now being completed via online rounds), and then will officially be a kickass disabled veterinarian! It's been very difficulty learning to accept my conditions and everything that comes with them while in an intensive program just trucking along and barely surviving. As I begin to transition into the working world, I'll be able to have better control over my hours and giving my body what it actually needs, but I definitely know I will be facing even more of the problems with invisible illnesses, as I'll hopefully manage myself in a way that my symptoms are low enough that I don't require a wheelchair most of the time. Clients were all wonderful, aside from one older man who saw me stand up and walk literally 4 steps to grab something before retreating back to my chair and says in front of several other people "Look, she can walk!" with an amazed tone of voice, to which I replied "yes, I'm thankful that I am still able to do some standing and walking, but require this chair for anything more' to which he replies in such a shocked tone "so you actually _are_ disabled?", as if I was just using this large intrusive chair just for funsies. I've been thinking of starting a youtube channel, largely discussing disabilities and accommodations through schools, as well as cats (crazy cat lady here), and am excited to think about this as I have more time on my hands.
Thank you so much for this video. I have a panic disorder, which I came to recognize as a disability when I had to quit yet another job because of my loss of mobility and cardiac arrhythmia during attacks. I'm training a service dog now and working with my doctors so things are becoming more manageable, but this kind of validation is wonderful to hear!
I have chronic pain that is fine somedays, sometimes even gone, but disabling other days. Not so disabling I can't do things, but I have had days I was in so much pain I didn't remember driving home. I am also not able to concentrate enough to socialise or focus on anything when I have a bad day. At the same time, I can have physical therapy as well as painkillers, and both help with the pain, so does that count as disabled? I wouldn't consider myself that, although perhaps I should in a way?
The definition: 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 So as endometriosis is long-term, it would depend on the extent to which it affects your ability to do normal things. If it's well managed and you can do a normal day = not disabled. If it stops you from doing normal things on a regular basis = disabled.... but of course then people can always have the argument about what counts as a "substantial" impact and what doesn't.
I have had so many people give me dirty looks when I park in handicap spots, even though I have the appropriate placard to do so. I have an arthritic condition that will flair if I overstressed my body. When it first reared its ugly head I was in a wheelchair for about a year, for pain and fatigue management, and when I would brace myself on my car and walk to the back to get out my chair I had a number of people tell me to stop faking needing a chair. Now that I'm out of the chair I still have to keep an eye on my fatigue and pain levels, because if the get too high I can be bed bound for 3+ days. I look able bodied but am not, it can be discouraging and disheartening to have people look down on you or say you are faking when you are struggling and pushing through so much. Thank you both for speaking so openly and honestly about your experiences and your disabilities, it makes me feel a little less alone in dealing with the stigma and judgements of others.
I was diagnosed with Hashimoto and hypothyroidism at 13 (almost 36 now). The constant fatigue, severe digestive problems, dependance on a pill to live decently, constant drowsiness/sleepiness, depression, etc, are not enough problems for it to be considered a disabling condition where I live. It's like Jessica was saying in the video, they probably think: if you can't see it, it's not bad enough. Hope yours is somehow controlled. Best wishes xx
My grandma was so nervous about applying for a disabled parking placard. At the time she was 91, and using a wheelchair. She really thought she’d be questioned somehow or denied because she wasn’t “disabled”.
@@lenberry6721 I always feel weird filling out those "disabled identify" sheets like at jobs. I put down yes Because diabetes is in their list. But I dont think of myself as "disabled" in particular. Like i can still function in society fairly normally. So in General "no". But I def have times I need to pull the "diabetes" card. 😂
Hannah, I heard the same with my stoma nurse in Canada. She kept trying to assure me that I was not disabled. But also that I could apply for government assistance, etc. Looking back I think she was trying to reassure me in some way, but it was very much based on the stigma associated with disability. And has been a part of my own internal debate about my disability. Jessica's analogy of cochlear implants though has made me realize that my stoma/ostomy did not automatically "cure" my disability, bu instead is more of an assistive device for my disability. Thank you for this video ladies!!
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I really tried with the "hello lovely people sign"! Thanks so much for having me on your channel, really enjoyed this convo! xx
Hannah Witton you did really well Hannah! ❤️
Hello, Jessica! Hello, Hannah! Gracious! There was a lot to talk about on your videos. whew! How about I share what it means to be legally disabled in America? Ok, first of all, you can have a mental or physical disability, or both. Basically, you apply and then you are turned down. So, you either a. give up or b. file an appeal. If you go with plan B, then you should have an attorney. And by "should" I mean, "you better have" an attorney. All of the ones I know take on the case and only get any money if they win. They get a percentage of what is awarded to you. So, nothing out-of-pocket. The government then decides how much money you will get each month based on the income you were making at the time you became disabled. Any disabled person can get disability. Your income does not matter. So, you could be unemployed or be a millionaire.
Once you are granted disability, you will be eligible for Medicare, which is the government's insurance, after several years, and I don't remember how long, so I won't even put in a number. I have Part A and B which means I can use it for doctor's visits and for hospitalizations. In my case, it is secondary to my husband's insurance from work.
The fun part is if you are mentally disabled. You get to go in every five years to "prove it". I don't know what is involved with "proving it" for physical disabilities, but if it is similar, then it would involve, say, a person who is a parapalegic being required to stand and walk. No, even that is not a good comparison. The proof for continued mental illness is hell. You may go in to the office feeling ok, but by the time you leave, you will be shaking, crying and in need of every anti-anxiety med you are on!
Haha I always think about if I was born in a less advanced time where I would need to work hard for survival, I wouldn't make it. I like your version about the apocalypse! 😂
In the start of the year I got really ill and now I have a diagnosis that makes me disabled for a time and my legs don't have the same strength as they used to
This is such a great topic, more on this please! :)
This reminds me of an incident when I injured my ankle and got on a train with an ankle brace. The only seat available was disabled seating, so I sat there. A deaf lady came on the train and started wildly signing at me. I just blanked. She types something out on her phone and shoves it into my face, the gist of it being "this is disabled seating, not temporarily injured seating." I was too exhausted to argue, so got up as she shoved past me and sat down. Next thing, guy sitting next to her stood up and told me to take his seat. I looked down and he was an amputee with an artificial limb, so I was all "no, no please, I'm fine" to which he says "I've been standing on one good leg for twenty years. I'm used to it, you're not." I accepted his generosity and sat down super confused about what disability is.
That's terrible! I don't know about where you live, but in North America and Japan, "disabled seating" signage on busses/train usually are shared with pregnant women and the elderly... pregnancy is more or less a "temporary" physical limitation as well but everyone accepts that they should sit down so I don't see how an injury is any different; Of course if you have a brace on you shouldn't be standing too much, and that should be obvious to any reasonable person. Also, how is a stranger supposed to know if your injury is temporary or not? It could be a recurring injury due to a chronic issue but they don't know that without asking. I'm sorry this happened to you :(
such an interesting situation!
The Truth my wife clearly confused folks by making sure I’m if not a disabled seat on the bus/train sitting down and has been known to suggest that people might want to give there seats up! But I look fine, it’s just one part of the balance system is foobar. But do get some odd looks!
That was so rude of her yes she may be like Jessica and have a physical issue as well as her deafness but you had an obvious brace on your foot and for all she knows you have to wear that brace all the time!
@@xiola same in Russia, but everyone seats on disable seats and if someone pregnant, old or disabled comes people offer them their seats
Bathroom thing is weird - I'm in a wheelchair, but I did once have this person (looked like...60s, maybe late 50s) get mad at me for waiting to use the disabled toilet. And it was so surreal? Like...although I otherwise look healthy, I was in a wheelchair! A bright yellow one! You'd think they'd pick up on my disability. My theory remains that it was because I'm young.
I've noticed that some people lash out with anger when they're embarrassed or feel "caught". I'm not defending her because it is ridiculous to be upset that someone in a wheel chair needs to use the only stall that is equipped for them, but thats just where my mind went to when reading your comment.
I have CP (very mild) and I relate. I use to if I could sit and sometimes I couldn't and fell of the floor of the bus because it went too fast and people just always give me weird look especially in my twenties (because my CP doesnt show). It's also weird all the comments of well you dont do this or you dont have a walker... It's akward really.
I remember seeing a post/graphic recently with the quote, "The disabled population is the world's largest minority of which anyone can become a part of at any time." And this really stuck with me and has kind of helped me get over the stigma behind whether or not I can really classify myself as disabled along with some other comments I'm seeing here about disability being a spectrum. I'm not entirely sure why this one in particular has helped me, but it has!
i think about that quote / this comment often. i bet there'd be (a bit) less ableism if everyone understood this
8:46 when you mentioned hearing aids "fixing deafness", i thought, "oh! like glasses!"
because a near-sighted person wears glasses, it doesn't mean that they're no longer near-sighted, for example
And also, glasses wouldn’t fix blindness. That’s a rlly good comparison!
Yes my glasses don't always help and I have to get more every year
Disability is on a spectrum, and sometimes disabilities aren't always visible. Psychological disorders, can make it very difficult to get through daily life as well.
So much this!
I suffer from ADHD which is *still* so misunderstood by the general population. The worst is having people tell you there is no such thing! I often wish people c could experience it for one day so in 24 hours I can pop the question; still don't think it's a thing?
Something Hannah said really resonated too. Legally, I am classed as disabled but I struggle to think of myself as such. While I don't "identify" as disabled because I don't think of myself through the lens of disability. I just think of myself as me and I try not to think of myself in terms of labels. Which is tough, especially in this day and age but I soldier on!.
Really enjoy your content Jessica, it is nice to be introduced to Hannah too! Stay beautiful ladies!
I was on both physical and mental disability. I had cancer at age 15 and was diagnosed with schizoaffective in between. Im legally considered disabled but i dont look like i am and i get bs all the time. Especially now since i have a 6 month old and ive been asked "how are you a mother? Your disabled?"
Totally agree. For the longest time, my depression kept me in inpatient psychiatric care (a psych ward) so I often missed classes and wasn't really allowed much freedom. I found it hard to take care of myself most days, yet I never considered myself disabled until very recently.
very true. i have OCD and i'm pretty much house bound from it- and there are even parts of my house i cant go to because of it. i also have physical illness (still getting a diagnosis on that, it's been 6 months of doctors and tests), but i personally find my mental illness much more disabling. physical illness? i just need to sit down a lot or use a cane. mental illness? i can't do basic things like go to the grocery store, restaurants, places to get jobs, i can't always do school, etc.
wittypseudx I’m so glad someone else relates to this! I have bipolar disorder which is classed as a disability and narcolepsy which isn’t. But I find my narcolepsy to be much more debilitating (my bipolar disorder is stabilized with meds). There’s days when I can’t get out of bed because I’m so tired and I don’t feel it’s safe to drive. Some people can’t drive at all because of it. I just wish it were taken more seriously.
This is exactly how I feel about my mental illness- I always feel like I'm not depressed enough to count. Thank you for making this video
Many people with several diagnoses feel not disabled/mentally-ill/chronically-ill enough, even when they get called ableist slurs and can't function normally. Of course, it's also an issue when you have problems that haven't been diagnosed yet. I think that I've been called lazy, a hypochondriac, and different slurs so often even as a child, that I constantly doubt everything and feel guilty.
I tend to forget my mental illness quite often and then compare myself with others or think that it isn’t an excuse since it was or could be way worse...
@@inken201213 That's the thing, we shouldn't compare ourselves to others. It's a thing I do all the time, no matter how many times people tell me and I try to remind myself not to do it.
feel the same! Sometimes I don'´t feel autistic enough to count or that other people accept that I'm struggling.
@@sweethanami94 You aren't alone in that and it doesn't help that AS and autismums keep talking BS.
As someone with EDS who only needs a cane at most (at the moment at least) I NEEDED this video more than I need proper connective tissue
I feel ya. I have EDS and it only affects my life in ways that I can manage. I walk in pain and I get used to it so other people don't hear me complaining. Not understanding what people say to me when in a noisy environment + discomfort from sensory overload happens. I ask people to repeat what they said, they say "you deaf or what ?! " + tons of other mild to moderate symptoms that people don't notice or dismiss. Do I feel disabled ? When pain keeps me from doing things the normal way or if I'm a bit slower than other people YES. Other than that no. I'm not "normal" enough to be able-bodied and I'm too healthy to be disabled...
Child of God this just blew my mind. I’ve been diagnosed with Joint Hypermobility because in NZ none of the doctors knew what EDS was but I didn’t realise me not being able to hear in crowds was another symptom! 😳
rorisansan yuuup that is a symptom of EDS !
what is weird is that when I’m in class and there are a lot of people talking I can usually hear the teacher just fine but when I’m somewhere where there is a lot of ambiant noise (cars or stuff ) that’s when it gets hard ! (If ya wanna talk more I’m on Twitter @sweetbeehaseds or instagram @loonaginga 😊)
I also got EDS only difference is that I have a lot of comorbidities and use a spectrum of mobility aids, anywhere from a walker to a wheelchair. I get a lot of stares...
I have EDS too! But it’s all pretty much internal pain and it isn’t really visible to others, so it can be hard to try and get people to understand and know that it’s a constant (even though i might look alright on the outside).
This kinda goes along with the what not to say to disabled people as well, but as someone on the autism spectrum, Ive had people tell me "if you just tried harder, you wouldn't be struggling" or (wait for it) "Oh that's not a real disability" OMG can you not....
As woman with autism I cannot tell you how many times I've been told (by medical doctors and other mental health professionals ) that I don't have any obvious characteristics and I am very articulate so I must be doing well as if you can 'recover' from autism. I'm like do you want to see the official paper that states my diagnosis lol. People are just so uneducated.
Yes, if I try really hard I can just change my brain, just forgot to do it. :P Like, WTAF? Like, hey, have you tried regrowing your hand?
Not my story, but my friend's. He had lost his arm so he qualified for assistance in the form of adaptations in his home and car etc. He was then checked a while after if he still needed an adapted car (steering wheel and shift). Yeah, the hand hasn't grown back so far...
How can people think that a social disorder in a world ruled by socializing ISNT a disability? Stay strong my friend.
@@Lytah84 I get that too, the whole "you don't have the characteristics" bit. Yeah, its because I've had to work REAALLLY hard to develop the social skills that everyone else has naturally. It's because I've had to operate in a non autistic world that I don't "look like I have the characteristics."
@Anne-Lou Exactly. With time (and a lot of help and support from various speech language pathologists and therapists) I was able to learn the skills that I naturally did not have. I can't just make it go away if I "try hard enough"
When I was struggling to get to school with my ME/CFS I or my parents asked if I could go and lie down in the PD department between lessons and they so said “No, that’s only for the disabled pupils” which at the time I totally accepted. Now I wander how much more school I would have been able to get to if I had been considered as having a disability instead of “just” an illness!
My buddy CFS is specifically named as a disability in the disability act!
I was lucky enough to have a supportive school in the sense they allowed me to go part-time, but I often had to argue with the receptionist and produce new doctor's and school letters to sign out. But at the time I considered it an illness not a disability as I was constantly told it's a chronic illness, not a disability, and many of my friends decided I was making it up as I wasn't as severely affected as someone else they might have known or heard of who was bedbound.
Ambers Accent is it?? It which country? I might feel more entitled to the disabled label, if a diagnosis is enough to label me so. I can’t get approved for disability benefits just because it’s impossible to do so here in Australia, even people with ten times more worse things on top of what I’ve got can’t get it but so few of us can work because of the condition. So I’ve never been able to consider myself disabled and feel guilty sitting in the disabled spot on public transport even though I need to sit down, I don’t have a card I can use to prove it if someone gets salty at me :/
So, SO many people with the more hidden illness, like ME/CFS, mental illness, pretty much all the autoimmune disorders, struggle with this. That whole "But you don't look sick" thing. Sigh. It's one of the reasons I love Jessica - it's not clearly obvious all the time, and she says "Doesn't matter - I know what this does to me".
Abled-people still have this idea in their mind of what a disabled person looks like, and that's a myth that's hard to break. I mean, in the US, the literal symbol for "handicapped" or "disabled" is a person in a wheelchair. What's funny though, is that 4/7 criteria for a handicapped placard (for parking) are invisible illnesses.
ME/CFS can be so disabling, and it seems like when you need to lay down between lessons to go to school, that's moved from chronic illness to disability. It's all on a spectrum.
@@ClarityEmerald That sucks. It's that way in the US, too - where it's incredibly difficult to get on our federal program for disability benefits. 66% of people are denied their first application, and the rest have to move through a process that usually involves a lawyer, an Administrative Law Judge, and 2 years wait time.
That's disheartening that Aussies deal with that, too. And honestly? It's easier when outside forces kinda validate it, when other people validate that. You need that spot on public transport, therefore, you deserve that spot. The closest thing we have to a "card" here is handicapped placards for parking spaces. Sometimes, I just want to whip that out to say "See? My doctor and state agree that I need this. If you have a problem with me using this bathroom, take it up with them".
I think one of the biggest issues I have is that my anxiety causes loads of visible symptoms but if I can keep a handle on it, I'm okay. I saw a doctor a lot for a while who was very 'oh it doesn't seem to affect you' and only when she could document actual physical symptoms that were disabling was she like oh right okay so you do have a problem. This whole thing about having to humiliate yourself to get the help you need is ridiculous.
Fun fact: Coeliac disease 'counts' as a disability in Slovakia (where I was born) but doesn't in the UK where I moved to in my twenties. Talk about finding it difficult to define one's identity.
Good point! There is no way to make it universal 🤦
It also doesn't count in the US because if I went to a college in a different state they wouldn't be required to make accommodations in my food and nutrition labs. Thank you California
Actually, it’s a digestive disorder, so in America, under the ADA, Americans with Disabilities Act, accommodations have to be made for you! Especially a school/college! Check with your lawyer!!
Oooh I have ceoliac (as well as type 1 diabetes -ai diseases woop woop) but believe me like if I even come into contact with gluten I feel horrible for two weeks straight and I don't think people understand the severity of it
I thought that the UK definition of disability is any condition that has a substantial long-term impairment which limits one's day to day activities. By this definition Coeliac would count. Edit: www.gov.uk/definition-of-disability-under-equality-act-2010
Having an autoimmune disease is like eyelashes.
My immune system/eyelashes are there to protect me and yet they're what's giving me most grief
I'm here all the way for this analogy
This is amazing 😂
Both me and my partner are disabled. I have an "invisible" disability while his is visible. He didn't identify as disabled until we started going out and I think it has do with the stigma and expectations of able bodied people. His sister literally said once that he was not disabled (it was in attempt to be positive and encouraging). There is such an expectation to "overcome" your disability, instead of acknowledging your limitations. Even though my disability is less visible, I've always been open about it because my health and well-being is much more important than whether or not someone thinks my disability is valid enough.
I'm in a similar situation! My partner and I are also both disabled, but it's pretty invisible in both of us. Our families are like "hmmm...disabled??? REALLY"
@@Flareontoast Luckily, my mom has always been supportive. My older brother has ADHD, and my mom has always made sure the school gave us proper accommodations.
I’m in a deep depression over it all (RA, Sarcoidosis, Asthmatic, Anxiety, Major Depressive Disorder) future ex is an alcoholic that ALWAYS said it wasn’t a disability and I was lazy. You are BLESSED to have a partner they GETS IT...😥❤️🙏🏾
This! I feel so much pressure to just push through and overcome things, to the point where I question whether I'm actually just lazy/useless/not hardworking and using my illnesses as an excuse for things...especially since they're invisible. I only got diagnosed about 2 years ago, and not many people know how it affects me (especially not my parents, who are always chiding me and telling me to do more). I'm trying to work to that point of valuing my own wellbeing and limitations over other people's perceptions and comments, as well as not feeling like my illnesses are my fault.
So many disabilities are invisible - and the public continually need to be educated on this. I have neurological disabilities which mean I am constantly fatigued (even after 10 hours of sleep at night!) and have frequent migraines and other headaches. Of course I don't "look disabled." Also, here in the US it is very difficult to get the government to decide you're disabled. Two years into the process and I've been turned down twice. I'm told to expect another two years before my appeal gets seen to. I like to joke that if I were in a persistent vegetative state then *maybe* I'd get declared disabled, but only maybe.
Same here. I tend to get frequent headaches as a kid and up until now. Same with GAD, MDD, Adhd/ADD, etc...
I’m about to start the process and I’m terrified.
I relate to the part about checking the disabled box on a form. Seven months ago when I started the job I have now, I wrestled with that for longer than I care to admit while filling out paperwork for human resources. And it's so weird, because prior to getting this job, I had gone back to school to get training and that training was literally paid for by my states' government specifically because I do have a disability. And so I knew that legally, yes I was disabled. The government had specifically classified me as such, and thought it was severe enough to pay for me to get training in a different field that I could work in. And yet I still hesitated to check that box on the form because I wasn't sure if I was "disabled enough". I eventually did check it, but I hate that I even asked myself that question.
I have accommodations for school and I always wonder if that means I can check the disabled box. I tend to not check it if it’s for accommodations that need a doctor confirmation. I don’t have the time to get an assessment written up every time I want to do something.
I work for an internationally renowned Museum in London. The application was beautiful and made me really happy as it made a distinction between declaring your disability and then asked in a separate question if you would like to be considered under the two-ticks guaranteed interview scheme. I said yes to the disability and didn't tick the second box. I really liked this format.
Once I was at a music festival and tried to use the disabled seating section AND THEY WOULDN’T LET ME IN! Because I didn’t look disabled enough. One of the folks actually told me that I needed to have a disabled card and didn’t believe me that such a thing didn’t exist. I tried and TRIED to find someone there with the authority to overrule that but no one wanted to take responsibility. A big problem is that I didn’t have my Dx yet (was FINALLY Dx’ed at 38!) and so I didn’t feel like I was allowed to need mobility aids. Now that I know better I always take my cane to big events like that, whether I really need it or not, because sometimes OTHER people need a signal that I need accessible accommodations.
I mean all that was not going to stop me from seeing Beck, and so I stood the whole night and then barely made it back to the car, and had to stay in bed for two or three days afterward. Worth it I guess but so unnecessary. The disabled seating section wasn’t even close to full.
On a happier note, not too long ago I had a superb experience at another local music venue while using my cane. The staff were all just the right amount of accommodating without being condescending or making me feel like I was a burden. When I ordered food and a drink at concessions I mentioned that I was going to have to come back for one of them, and one of the staff just casually said, “Oh, when this finishes cooking I’ll just follow you out with it,” like, NBD. It was great.
@@shayelea thank you for sharing that! It's so nice to hear not eveyone is an asshole.
Elena Christian indeed! I think it’s also important to share stories about people who get it right. Like the time an older woman chased me down to (I thought) chastise me for using a disabled parking space, when in reality she just wanted to tell me how beautiful I looked. 😳 Then she got into the van in the disabled spot next to me. That interaction did NOT go how I thought it would!!
You can order Stickman Cards in the UK, though you have to pay a little for them as they are made by a private company.
I have 3 of them for my invisible illnesses/disabilities and they put them across in laymen terms that ablies can understand. They explain why I may need to sit down at times or when it _isn't_ necessary for crowds of people to gather around with their expert amateur doctoring skills, panic hysterically or call an ambulance.
You can wear them on a lanyard underneath clothing etc so you aren't like some walking advertisement for every disease known to humanity and people don't fear your limbs are going to shoot off at any moment.
It’s really weird when you aren’t legally disabled, but you’re school acknowledges your disability. Especially in high school when, for example, I had an IEP which is a legal document that means the school has to provide certain accommodations or else we could sue them, but I’m not legally disabled.
You are legally disabled or you’d have no need for an IEP! Read the Americans with Disabilities Act. Things such as infertility, diabetes, digestive disorders, cognitive disorders, etc. are all covered by the ADA...
Stacey Williams Maybe we have different definitions of “legally disabled” but I understand what you mean
I had an IEP too and had to be in learning classes since i was in 2nd grade. Mostly cuz of the ADHD, but for unable to complete schoolwork because of depression and other things.
I have PTSD, social anxiety, anxiety, depression, among other things. I often feel that I am not disabled enough, even though I am on many different medications and use a service dog. I often don't even tell anyone what my service dog is for because the people I have told don't believe me.
Emily, don’t worry about explaining yourself to anyone! I have PTSD, chronic pain, migraines, narcolepsy, high blood pressure, anxiety, depression, and diabetes...to name a few. All of these are listed in the ADA (Americans with Disabilities Act), so I am technically disabled, however I look perfectly healthy. I know my personal limits and do my best not to push me limits!
@@staceywilliams8569 I second that. We are not the Moron Whisperers.
I don't know where you're located but in the USA, they're not even allowed to ask what a service dog is for only "Is that a service dog". Don't feel like you owe anyone an explanation of your disabilities or your need for a service dog
I'm so glad you brought up the mental illness topic as my anxiety and mild autism is incredibly disabling
There's not such a thing as "mild autism". That's ableist language. And precisely because of what you are saying, we are just disabled.
I didn't get my autism diagnosis until last year, at the age of 19. My diagnosis doesn't even say "autism" but "ASD (Asperger's Syndrome)". I don't look visibly autistic, I'm verbal and even quite eloquent. I'd therefore be considered "high-functioning".
However, my executive dysfunctioning (which is a trait people with ADHD and ASD usually have, depressed, bipolar and schizophrenic people among other can also have it) is so bad I'm unable to do even the most basic tasks. That's not "mild". That's not "high-functioning". It's just a disability.
Also, autism isn't a mental illness. It's a neurodevelopmental mental disability.
@@mikelmontoya2965 I'm very sorry if I offended you or anyone else in any way, this was just a quick comment I wrote while watching a youtube video so obviously didn't think for very long about my wording, my story is that I have been told since I was very young that I am on the autistic spectrum but I am awaiting an assessment, I am very aware that many people experience the symptoms a lot worse than I do so when commenting I didn't want to pretend I had any idea what people such as yourself go through. I apologise again and hope you understand my mistake
@@jennyholloway8192 oh I'm not offended, don't worry! I even liked your comment before leaving mine. I just wanted to give my opinion on why I disagreed with the terminology you were using.
@@mikelmontoya2965 The "ASD" part stands for "Autism Spectrum Disorder", so your diagnosis does actually say Autism.
why hello this whole topic is A WILD RIDE and also A VERY STRESSFUL THING that i think about a lot with my own shitty body but this video was SO GOODDDD you absolute blooming angels xxx
Awn thank you lovely 🌸
The amount of times I’ve been told “oh that doesn’t count” when filling out disability sections of health and safety forms. Like no, sorry but if I’m going to be doing lab or field work, you do definitely need to be aware of these things in order to keep me safe
I really wanna see you collab with Karolina Żebrowska!!
Me too! I’d love that
oh hell yes!!
yesss
Yaaaaaaas
YES, please! That would be ABSOLUTELY amazing!
I find the concept of the world around you being a disabling factor really interesting. With my immune condition, I don't consider myself disabled because as an adult, I've found a job where my chronic exhaustion and frequent illness don't really get in the way of my daily life but in school, it was a completely different story. I had a 504 plan, no one knew what to do with me, I required special accommodations, and I spent most of the time miserable because the environment I was put in was not built for my needs. If you asked me five years ago if I had a disability, I'd say yes. Today, my condition is more of just a fun fact about my that causes me to live only slightly different than people that don't have what I have. I don't identify as disabled. These conversations about disability could honestly go on forever because it really isn't possible to pin down something with such nuance.
I am deaf and wear hearing aids, and I typically identify as disabled because of that. I think if that was all I could probably survive the apocalypse, buuuut I also have severe contamination OCD, and because of that i would definitely not be able to survive. It’s interesting that the thing I consider my disability is not the thing which would make it most difficult to survive the apocalypse.
Anyways, very cool video, love you both!!
But wouldnt you count the contamination OCD as a disability too? Just curious, you dont have to answer if you dont want to
@ravenwolf 1315 thank you for sharing. I liked how your point of view made me pause and think.
Nina I’ve never really considered my OCD to be a disability. No one (doctors/therapists) ever told me that I should or could consider it as such. Perhaps because I can already consider myself disabled because of deafness I don’t need to look for that feeling elsewhere.
Although, I’m kinda realizing maybe I should be thinking about whether or not my OCD “counts” as a disability. Thanks for your comment, it’s making me think a bit harder about all this.
@@emmachisholm8718 Thanks for answering 😊 i hope i didnt cause too much trouble with you thinking about it, it just thought that perhaps something that debiliates you mentally should count as a disability since it causes you to function in a different way.
I have severe ocd too and it is disabling. Stay strong, my friend
Cw: mention of dying.
I really wish anaphylaxis was legally considered as a disability, because it would offer those of us with it a lot of protection. We are often dismissed as being over dramatic and fussy eaters (food triggered anaphylaxis at least). As anaphylaxis is a type of allergic reaction it’s often dismissed as not being as severe as it is, but you can literally die from it. In a reaction you can feel your body killing itself because it didn’t like the allergen you’re sensitive to. I’ve been hospitalised with it 10 times last year alone, on my friends 18th birthday I was lucky the ambulance arrived when it did to give me emergency back up meds as I took 2 epipens and they weren’t working. I was dying in front of my mothers eyes and there was nothing she could do except be on the phone to the ambulance. Those of us with anaphylaxis often find we lead a very limited life because of the ana. It can be incredibly disabling and it is not currently recognised as such!
emmibobable Excellent point!
I also find it really tricky as a high functioning depressed person. Basically, I can mostly function as a sort of regular person when I'm depressed, but it's such a huge difference from when I am not that I consider it a disability. Also I tend to get really suicidal and go about my day until the moment I plan to commit suicide which tends to really confuse people. However, since my disabled state is still somewhat functional, most people don't consider me at all disabled.
I kind of feel the same way with my social anxiety. I can manage most things, at least ones I HAVE to do (like shopping by myself or making an appointment with a GP), but it still does affect my life. specially on bad days when it just becomes crushing. But people don't see my struggle. They don't see that I'm standing absolutely terrified at a till because there's someone else in the line behind me and I don't have a trusted person with me. I look fine on the outside. And while I have learnt to basically 'suck it up', my ability to deal with it does not take away from the fact that the situation will still terrify me. I have to deal with it. People that don't know what it's like would break down crying if they had to spend a day in constant fight or flight mode, it's exhausting and difficult. I don't feel like I get to call myself disabled though because I don't feel like anyone would understand how much it can affect my life and my ability to do things. Especially when I am actually doing well and not freaking out 24/7. which is basically when I simply do not leave my house because doing so puts me into panic mode.
I have been there and still am. I've found when I get suicidal if I do some circular breathing exercises it helps to distract me.
Circular breathing is when you, for example, breathe in for a count of 4, hold your breath for a count of 4, breathe out for a count of 4, hold for a count of 4 and repeat.
This is what I do through every day. Some of my friends would get pretty surprised when out of the sudden my "good" mood would suddenly turn into me shaking, having a full on panic attack, on the verge of wanting to end it all. Most would understand, but some would label me as overacting, and not depressed because most times I seem happy. It sucks, but oh well, it's life.
Oliver Thorn of the PhilosophyTube channel has a video on here titled "The Cosmonaut" where he talks about having high functioning depression in a similar way to what you go through. It's invisible, but that doesn't make it not a real problem. Your problems are valid, you count. From one depressed person to another, I hope your brain isn't too hard on you, and staying alive keeps happening and gets easier on you.
Depression and anxiety takes so much energy to cope with.
I have a connective tissue condition called Loeys-Dietz Syndrome, for so many years I didn’t realize that my discomfort was not ‘normal’ so for 28 years I didn’t know I had cervical instability meaning my vertebrae in my neck moved in abnormal ways. Essentially when I looked up my second vertebrae would slide forward causing the first and third to grind against each other and after 28 years of this grinding I had about 18% of two vertebrae missing and nerve damage which required a neck fusion from the skull to C-5. Due to poor insurance in the US, I didn’t receive adequate physical therapy following my neck fusion and the accompanying pelvic bone harvest so I suffered numerous subluxations of my right hip and now use a cane. Due to being ‘younger’ I’ve frequently gotten reactions like Jessica shared after leaving the accessible restroom. Love this video and both of your honesty.
One of the most frustrating parts of my illness, is the whack-a-mole feeling of my ableness. I am not disabled, usually. I have psoriasis and psoriatic arthritis, and take biologics (injections). The arthritis can be crippling. I had a period without medication (insurance issues) where I couldn't get out of bed. My partner had to help me stand up, I couldntwalk without crutches, and for some reason my left shoulder was stuck in 1 position. My skin was destroyed in huge patches and I bled through everything. With my medication however, I am almost normal. I am still in pain, but I have joint mobility, and my skin has cleard up for the most part. However, the medication side effects can have a whole host of their own issues. So when medicated I am abled, but the disability is always looming. However it isn't as visible ( I don't typically show my skin) and if I don't vocalise my pain no-one else knows. It also isn't really recognized as disabling, so it makes me feel invalid somehow.
I watched this video when it was published, and now 4 years later I've got long-term joint mobility and pain issues in my knees/hips caused by a deformity in my legs that was dismissed as being purely aesthetic when I was younger. I've been in physio for a year (a referral for which I waited nearly 6 months), but because it's the NHS they're reluctant to even consider sending me for x-rays or a consult with orthopaedics. I wear supports and can barely walk 1,000 steps a day without a pain hangover, but still I've been reluctant to even ask for mobility aids, let alone call myself disabled - but last week, a friend who's had several lifelong disabilities told me something that really motivated me to claim the term. She said that "disabled" isn't a list of conditions, or a set of criteria; it's a state of being that can be temporary, long-term or permanent. If something involuntary about yourself, whether a physical or psychological issue, is stopping you from living life the way you have, or want to, then it is a disability. It motivated me so much that I bought myself a walking stick, and jfc I could have saved myself so much pain if I'd had that perspective sooner.
The situational disability thing is something I relate to a lot. Generally I think the word that fits my situation best is "life altering". I don't have a "normal" life and what I do is based on my health and abilities, but there are not a lot of situations in which my conditions are properly disabling. I spend a lot of my time sat on the soaf watching TV. I can do that just fine (I might be in pain or tired or whatever, but I'm still able to do that thing) so I'm not disabled then. I go on outings, get the bus and I can sit on a bus (I might be on the bus then cos I'm feeling unwell and I've cut my outing short, but I'm able to do that thing) so I'm not disabled then.
If all the seats were full though that's where I become disabled because I am not able to stand (well not without it impacting me significantly). If I'm visiting a cinema and there's a line to get tickets I'm not disabled cos I'm able to stand in a short line. If it's a 2 hour long line at a theme park though I am disabled cos I'm not able to wait in a line for that long.
I fit the "criteria" of disabled, but it's my choice when I apply it. It's my word to use when I think is appropriate for me. Likewise how I and people I know use it is my choice. I don't mind much about all this "person" stuff as long as there's the right intent and my partner and I will even use joke-ie words for my situation. That works for me and that's my choice, but I would always try to respect other's choices too and use the most polite terms I could think of when talking to others.
It took me a while to feelcomfortable owning that word though. I wasn't really sure I had the right to before. Same with being a wheelchair user (I use a chair but only occasionaly, so am I really allowed to call myself that? Do I really have a legitimate reason to use one? Am I faking? Will other people think I'm faking? etc). I've honestly found there's a whole lot of self doubt with chronic illness and the like. I guess especially when things aren't visible or aren't consistent. It's really awesome to see others talking about this stuff cos it helps show that it's normal to have those doubts and it's fine not to be the cliche image of disability. :)
I alternate between "disabled person" and "person with a disability" depending on the situation and the severity of my symptoms at the time. I have UCTD and related neuropathies that are waxing waning. If I'm having a flare up and I need my crutches/walker, or I need the disabled toilet, if I'm having to give up certain activities or ask for help/support with certain activities then I identify as a "disabled person", I'm asking for help because my disability comes first, it's something that I'm hyper-conscious of. But day to day, if I'm not struggling with anything, if I'm not requiring any special access or accommodations, then I'm not thinking about my disability, I'm just a person "oh, but I also just happen to have this illness that gives me disabilities".
I work in community services so I have to remember to use person first language because in Australia it's considered the most politically correct and it's a sign of an empathetic and inclusive employee. But I'm one of the few people at my job who asks clients "how do you identify?" and then I try to remember what language makes that individual most comfortable. Some people even like to use terms like "handicapped" which personally I don't like but it's not up to me, if that's how they identify it's my responsibility to respect that.
My brother has ASD and he likes the term "differently abled", he's explained why this term appeals to him and his condition, I personally don't use that term unless I'm talking to him or about him, because that's his personal identity.
I think that's the most important thing for anyone, able bodied or disabled to keep in mind - it's about how the individual identifies that matters, just because you think person first language is better doesn't automatically mean that's the language that the person you're talking to feels the most comfortable with. Ask their preferences and respect their preferences.
Ironically asking someone how they identify instead of sticking to 'person first language' is literally putting the person first!
I honestly love everything about this video. I have 3 “invisible” disabilities (CP, anxiety, depression) and people often don’t notice it until I’m having a severe pain/bad mental day. I used to wear a brace and had casts from surgeries several times, and able-bodied people had the weirdest reactions to it as if I was an alien...it’s so weird. The “legally disabled” thing is also super weird... can we not do that...? Being disabled is nothing to do with what able-bodied people think of us. Just b/c I look “normal” doesn’t mean I’m not disabled, y’all.
This video was really eye opening for me, because I struggle with ADHD, anxiety and depression and my whole life I've always thought I was just lazy or "a product of bad parenting", because that's what people told me. Even after my ADHD diagnosis, when I was like "Oh, so I do have an actual thing that makes me like that, and I'm not just lazy?", even then I still didn't consider myself disabled because I can technically do things by myself. For example, physically I'm completely able to just stand up, go to the bathroom and shower, technically I can just wake up at 6:30am, go to school, arrive there at 7:00am, stay on a desk for six hours, come home write my homework, study and then repeat the cycle again. But the question is, do I do all of those things? And the genuine answer is no, I don't do them, because first of all, my executive dysfunction is so bad that I never just "stand up and go shower", It's always a big struggle to convince myself to do a task that I don't want to, It can take days for me to actually do it, and sometimes I just completely forget about it and remember when It's either too late (if the task has a deadline) or I have too little energy. Second of all my time management is so poor that I am late for school pretty much almost every single day, because maybe I thought dressing up would take just about 5 minutes, but in reality it was more like 20, or packing my bag would for sure not be more than 10 minutes, but in fact I spent 30 just trying to find my biology notebook. And third of all, I have a really hard time paying attention to subjects I don't like, like Math, so I end up just not listening the whole lesson and therefore not understanding anything of what the teacher said. So having a disability doesn't just mean being physically disabled or in a wheelchair, it can also mean not being able to perform a task, because your brain doesn't allow you to, and a lot more things that can be just as hard.
I needed this comment right now. Thank you.
@@missnikin Same
@@etoilesvivesah a follower adhd-er! I feel this. most of the time, I understood the material we were learning in school, but I just *couldn't* do homework. I tried so many ADHD meds before finally finding the right one...my last semester of high school
I love the apocalypse example she gives at the end! I was talking about this with my mother one day how I live a completely able bodied life, but if I were to be put in a situation where I didn't have my glasses, or even just did not have updated lenses when I needed them, I wouldn't be able to care for myself, I can't even walk safely without them. It would be suddenly very clear that I am, in fact, disabled.
Things like prosthetics, mobility aids, cochlear implants, even glasses all make life less "disabling" but if the apocalypse hit we'd all be screwed so there's really no need to decide now who is and isn't disabled "enough".
That all being said I don't personally ID as disabled because we're all taught not to see glasses as an aid for a disability. People tend to be genuinely shocked that i use them for more than just a small correction and that I need them to function. But that's a whole other rant.
Love seeing you guys chat together! I feel like the whole PIP thing is a major issue and a big reason that many UK people think they're "not disabled enough". Most disabled people I'm friends with have been turned down for PIP, even wheelchair users and some with lifelong physical disabilities (I have a variable chronic illness and I've just kind of come to expect people viewing me as not disabled - I thought they would at least get more understanding but apparently not). Several people I know had DLA for life but are told they can't have PIP. It's so ridiculous and horrible I don't even know where to start!
In terms of the Equality Act, the definition of disability is a "physical or mental impairment that has a substantial, long term negative effect on your ability to do daily activities."
As definitions go, it's not bad. It's broad enough that any and all disabled people are covered. I don't think I've seen a better definition anywhere.
I've watched you and Hanna for years now. I am always wanting to learn more about how to interact better with people who have disabilities. Also, I like you vintage videos. I figure even at this retirement age, I want to learn more and be a good friend to others. Please keep making more videos on both of these topics and I do like your history videos too.
I really needed this video today. Thanks for talking about something that is so hard to define and misunderstood.
i first watched this video in 2019 (i found my original comment) and i didn't know then if i could claim disability as an identity for myself. i have hypermobile eds, probably pots, adhd, severe social anxiety, depression, pcos, some chronic fatigue, and i was also growth hormone deficient as a kid. and that's just what i know i have. i decided over quarantine when my symptoms got worse that i'm allowed to call myself disabled since my conditions affect every area of my life and i would be a completely different and more functional person without them. i was so scared to use the word for myself since i never look injured or disabled except the occasional joint brace or limping walk, but i was scared for nothing. i haven't encountered any truly malicious ableism from anybody in my life yet. my friends and classmates have never questioned me, my professors have been understanding, and my employers have never pushed me to do more than i could handle. it's been so liberating. if anybody is reading this and looking for a sign that they're allowed to call themselves disabled, this is it. if you're spending more than 60 seconds thinking really hard about whether your condition affects you enough to be called a disability, it's probably a disability.
So often I feel I'm not disabled enough. It's a hard thing to deal with.
Loved this video. Thank you!
One thing I have always been wondering.
What the heck is the deal with WEIGHTED doors on accessible restrooms? How are you supposed to wrestle through one of those doors when you're in a wheelchair or on crutches, for example? The door is made to close itself and there you are. WHERE'S THE LOGIC??
RickyKnives Nowhere. My school sucks and turns off the accessible doors for ‘safety reasons’ and they are SO SO HEAVY. I can’t go through them, they’re just too heavy
The worst I've had was at a pub, on way to restroom a gent held the door open for me, but on way out I could not push door and hadto pound on it for someone to open it for me :(
I loved the description about disability and the apocalypse. Great way to help people understand what it is like and what it feels like to have a disability or even just an illness. This was a great video and both of you are lovely and funny.
'Person with a disability' users often say we would use that term because it's humanising but that implies that disability us inherently dehumanising and they can't see us as people without that reminder.
I'm autistic and have mental health problems but I also broke my knee (hit by a car on a zebra crossing) and it's really interesting seeing how my autism, mental health problems and broken knee disable me in similar but different ways.
Example: taxis are hard for me because I can't talk on the phone (thankfully they now have an app) and the driver's freak me out, but now I also struggle to get into them with my leg brace and crutches.
It's so interesting to learn about what you prefer to be called, meaning 'disabled person' or 'person who is disabled'. I live in Canada, and I work with children. In school, like actually in class, we were told that you should never say 'disabled child' and it was always 'child with a disability' because it was incredibly limiting. Like... we were tested on this, this was on my exam. So hearing that that's not the case is sort of jarring but I'm so glad you talked about that. I imagine it depends on the person, and will definitely ask in the future what the person's preference is if it comes up!
i am severely hard of hearing and i can't tell you how happy i am that you have accurate CC on your videos
YEP! I'm very happy too.
*My favourite British people :*
Hannah, Emma Watson, Jessica, Rose and Rosie ❤
I love the would I survive an apocalypse definition. I feel guilt if I were to ever say I was disabled. But having coworkers who aren't made me realize lately just how much different from them I am... I'm not able to explain it in short but I do have invisible struggles.
I actually think I’d do okay in the apocalypse (well as ‘okay’ as you can be) because I have autism so I’m really good at problem solving. I still do count myself as disabled though
Yes. I think that there are various disabilities that would thrive during the apocalypse that suffer in the confined judgement of "normal civilised society".
I COULD in theory survive the apocalypse. I need a saline infusion every week to be able to walk so I could survive but I couldn’t walk
I have PTSD, something that UK law struggles with quite a bit. Essentially it can be classed as a disability, but a PTSD diagnosis doesn't automatically make a person disabled in the eyes of the law. I find that it can be like depression in that it varies in severity over time, so some months I think of myself as 99% able and other months it's more like 30%. I really struggle with the whole 'disabled enough' mindset and often beat myself up over not being able to do things that, a month down the line, I might be able to do. Every day is a battle, but your videos make it easier. Thank you for your kind, insightful words Jessica. You're truly amazing.
I think it's because you can get PTSD from any kind of trauma, so it's such a broad spectrum that it can't be generalized. I have it but it doesn't immediately affect my ability to study or work for example. It only gets triggered very specifically. It does affect my ability to go to the cinema, watch movies or series at home, read headlines, listen to people talk or joke about the subject, and it has affected my romantic relationship a hell of a lot. And it costs a fortune in therapy lol. Well tbh it has actually affected my studying at some point because of the subject being talked about in a documentaries in psychology class.. Had a complete meltdown but was hiding it from everyone (I had no idea what ptsd was at that time).. So if it gets triggered at school or work I will struggle of course. Sometimes for days. So maybe that even counts as a disability. But in my case I "just" need to finish therapy and then I shouldn't suffer that severely from it anymore. Then I should be able to be confronted with it without having a panic attack, and it that case it won't be a disability anymore.
For others, PTSD could be caused by maybe much longer periods of trauma, much worse trauma, much more complex trauma, something they're confronted with much more places and scenarios etc., so they'll suffer from it much much more often than me for example, and it will affect their ability to go to work or school several times a week, maybe every day. And therapy will be longer and more difficult and time consuming.
Another problem with knowing if you should or shouldn't call yourself disabled is that you don't know how others people's bodies feel. I know that my heart condition doesn't usually affect my daily life unless I need to run, but I know that it could affect my ability to work and it could put me in the hospital. I wouldn't call myself disabled, personally, but I'm also like 'am I really able-bodied though?' It's definitely a strange thing to try and navigate.
I really appreciate you guys for including mental illnesses in this. I'm bipolar, which severely affects my life, including limiting the kinds of jobs I can have and where I can go. I'm barely capable of functioning on my own. But even though my doctor, therapist, and med tech all tell me it's a disability, I feel like I'm not allowed to call it that.
I have fibromyalgia and arthritis. I am chronically ill and that causes mobility problems, which disable me. People don't see disability when they look at me. I want to share this video to everyone who looks at me funny when I can barely get out of a chair.
I can relate to this so much. I have fibromyalgia and cfs/me and it can be so hard to be out in the world without the fear of judgement.
Girl me too! I’m really struggling to identify if I am disabled as a person with fibromyalgia and cfs - I need the disabled seats or toilets sometimes, I can’t stand for long at all and need to sit, can’t walk far and don’t look sick so I have bad anxiety about being told I can’t sit there, especially when there are Able bodies people sitting there Until a disabled person gets on the train. I don’t have something I can physically show them to say I am disabled so I don’t feel like I’m allowed to say I am?
@@ClarityEmerald You are definitely allowed! I live in London and I just got the "please give me a seat" badge and card that Hannah talked about in one of her videos. If I stand on the train or bus, I can't hold on cause my hands and my wrists hurt too much. Or I'm too exhausted to stand. I totally relate too, cause it does stop you from going out. There's a part of me that's thought about getting a walking stick just to have something to show. Look up the social model of disability. If society disables you, then yes you are disabled! keep going honey!!! :)
@@ClarityEmerald look up Stickman Communication cards. They are fantastic ways of identifying a disability when you require to in a way that ablies can understand.
Paul Gascoigne thank you! That’s so great !
Thanks so much for this video. In the past 19 months, I've had organ failure, emergency organ removal, a horrible post-op recovery, and have now developed 2 chronic illnesses (both of which I have to take daily medication for), and I constantly get told (by able-bodied people) that I'm not disabled enough, or I don't look disabled. Watching this was very validating.
This is incredibly timely for me! I got a call this Monday to tell me I've been approved for a disability support pension, and in addition to the funding I receive from the national disability insurance scheme (NDIS, I think on par with the PIP?), I've been having weird feelings re: disability and mental illness.
My mental disorders have, for most of my adult life, made basic functioning near impossible, and I do require daily assistance just to live a somewhat normal life. But calling myself disabled still feels wrong, even when I've proved to a notoriously difficult government system that I am? It's a real weird time.
In Denmark we have this thing called a companion card. According to the website it's "issued to persons with disabilities who need a companion to travel in public space" It basically means that you can bring a person with you for free in the train/bus/museum/cinema.
Both physical and mental impairments qualify for the card and if the impairment is chronic you only have to pay the £20 once and then you get a new card every 3 years. If it isn't chronic you can still get the card, but when the card expires you'll have to send in a new application and pay another £20
Would I survive the apocalypse? God no, my anxiety and OCD would force me to sit in a corner and dissociate for all eternity.
I say i'm not disabled enough until people start to scream or deem me as useless amd stupid. Because i'm smart (supposedly ??) and can pretend to be a person for a while, but then i can't comprehend half of what they said for three different reasons, i'm too picky, i'm allergic to dust so i can't clean or be around cleaning stuff with harsh smells... But everyone says i don't look disabled :) or they dehumanize me and don't understand floating abilities. Also recently i've been having joint pain and numbing feet. Great.
Being diagnosed with Aspergers last year, which finally put so many puzzle pieces together in a second, I'm wondering about this question a lot. Through masking and my own wish to be "normal" I got myself in the situation, where most people can't comprehend how I much I can struggle with things that are easy for others - and it´s hard to tiptoe around people and hold myself back. When I was diagnosed with Endometriosis two years ago though, people where so different considering my diagnosis. The where nice, and also comforting me. Also accepting, why I was struggling physically before with those cramps straight from hell. It bothers me, that also with a mental disability (though I don't really like the term) it´s also quiet annoying with people telling me stuff like "oh but you don't have that much Aspergers" or "I know people that have Asperger, but they are so different than you are - I doubt you have it." So thanks for this video :)
The different argument just made me go "huh?" People are different, and so are their symptoms of anything. I mean, it's widely known by now that on average many women will have different symptoms than men. That goes for things like heart attacks, mental illnesses and Asperger and many others. And then the differences in symptoms between individuals can be greater still. (I don't think symptoms is the best word here, but I couldn't think of a better one)
@@AnnekeOosterink Exactly! People are so fast to brush off my diagnosis as non existent due to prejudices about Asperger or the Autistic spectrum. Most of the time they still have this Rainman picture in there mind, and I don't fit their stereotyp. On the other hand "visible" traits like me not wanting you look people in the eyes, my stubbornness with routines and many more things are brushed of as something that is just part of me. Like I'm some quirky girl who likes to be an introvert or whatever. The funny thing is that during my childhood and teens people joked about me "being autistic", but now as I have the diagnosis I have to prove myself to others, that my quirks are not just quirks....
So it´s nice to hear positiv response from people knowing how various "disabilities" affect people :)
My depression, derealization, depersonalization, and anxiety disorder has legitimately brought me physical pain and the actual inability to move or get up out of bed. Though it’s gotten better from say like a year ago, where I could barely get through a school day without an anxiety attack or derealizing to the point where I don’t know where I am, I’m still going through the motions of years taking medications and regular therapy. There are months where I’m essentially “back to square one”, and months where I think to myself, “ oh, I’m fine. I don’t need medication or therapy, I’m functioning quite well.” I’m still not sure where I stand on if I’m disabled or not though, I’m not sure.
This is such a lovely video. I have struggled my whole life identifying as a Disabled person (I have CP, but it is considered "mild"...). A lot of people have said "But you don't *look* disabled!", and they would say it as if it was a compliment. And because I was taught to sweep my CP under the rug, I was not considered "disabled enough" by many as well. I made my own TH-cam channel simply to build up my courage and talk about my experiences with CP.
Oh my goodness, the Disability vs. The Apocalypse idea sounds so fun! I would love to make a response video to it as well.
Take care, and thanks for sharing!
I really needed this video right now. I had a really emotional conversation recently where I acknowledged my guilt for calling myself disabled. I was born with a unilateral hearing loss and it took me 15 years (and my audiologist telling me I'm disabled) to be able to say I'm disabled for the first time. Since then, I've been coming to terms with the fact that my disability prevents me from doing things that I've wanted to do for years and that it's more complicated than just not being able to hear on one side. I still can't help the guilt I feel when I describe myself as disabled but I'm closer to fully accepting myself.
11:46 - Thank you, I'm still confused, because I feel disabled and I have lost my career due to my 'disability', but I'm legally not disabled. But thank you ;) x
Pippa Mayb same same :/
Jessica really helped me know that disability is not always a "visible" condition. It really helped me.
How do you think this ties in with learning disabilities? I'm dyslexic but always feel really guilty about checking 'disabled' on forms even though it effects my daily life
I have dyslexia (among other things) and if it was my only impairment I would still tick the disabled box. It might not disable me in every situation but I would still need adaptions at work and to use adaptions at home for bills and paperwork.
I recently found this channel and this is something I personally struggle with big time, with mental and now more recently physical but not visible disabilities. Conversations like this are so important and I am so glad I found this video.
Thank you for this video. I’ve just recently managed to get an explanation and diagnosis as to why my joints have been in so much pain, and it’s been a really confusing time for me. I have to take medication and do exercises to deal with the pain, and all of the joints in my body hurt (sometimes so badly I can’t get out of bed, and I haven’t been able to write for longer than 5 minutes without pain for about 4 years), but I’ve been struggling with whether or not I ‘count’ as disabled. Some members of my family and people around me tell me that I’m not, but my university thinks that I am, as they told me to apply for DSA (Disabled Students Allowance), even though it’s taken months to get that sorted with an official diagnosis, plus lots of doctors either couldn’t find out what was wrong or told me that it happens sometimes, and to just deal with it because in some cases it goes away for no reason.
My point is (sorry that was so long and personal) that I’ve suddenly been thrust into this world of possibly being disabled, it’s been really confusing, but your videos have always been comforting, informative and entertaining, no matter what they’re about (I’m also asexual biromantic so I’ve been struggling with people telling me that I’m not gay enough and I’m basically a straight person trying to be special. Yay.)
Thank you for all of your content and kind words, and I wish you all the best.
Hugs Freya! I've been in that boat as well, being confused about my own sexuality (I'm demi-sexual biromantic, and barely part of the LGBTQ+ community because it's so new to me and not sure how I'll be accepted) but I'm also on my diagnosis journey for my pain. I've been diagnosed with Fibromyalgia but it doesn't describe my joint pain and semi-dislocations. I feel like what matters most is understanding your needs, and if a label helps then that's what's needed. Good on you for looking out for yourself to look out for yourself the best you can. Wishing you many good days ahead for you~
Speaking from Canada, as a Type 1 Diabetic: for a long time I did not identify as disabled, as I seemed to be able to manage without what I thought was a 'regular' amount of help - outpatient visits regularly at my specialist clinic and an insulin pump. I am now at a point where the intersection of my mental health, physical health AND diabetes make day to day life pretty hard. Im now check that box on forms, and am working to better advocate for myself. Its still hard, and awkward, and I am so glad that you are open about life with disabilities, so others can feel more brave about doing so themselves.
2 beautiful people giving an education.... Love it 😁.... Oh yeah hi Claudia ✌🏿 ☺
Every disability isn't seen. I think of ptsd for one. I believe some disabilities can be emotional too like depression. It just takes having an open mind I guess
I am currently working on my Master's thesis and the topic of disability is an integral part of it. It's just hard to define it without excluding or including groups that may have a problem with that. For example, Deaf people might not consider themselves disabled, but using the words "physical differences" doesn't really include neurodiversity and disability might not even be the word neurodivergents want at all. There is also the topic of chronic and mental illness that you talked about here. But all of these people would/might need accommodation in university or at a job and would go to the "disability office". I'm just glad that I can do it in English and don't have to use my native language because there are so many different connotations there that the internet or research don't generally discuss.
This video came at a perfect time for me. I have fibromylagia (+ a bunch of other chronic conditions) and in the last year got put on a med that brought me from nearly housebound most days to having perfect attendance at uni, and it's really had me grappling with whether or not I'm still sick enough. But definitely wouldn't survive the apocalypse so guess I am!
What medicine is that? I was just told to eat paracetamol every day lol. I only do when it's really really bad though but I also have five thousand other conditions so my battery gets drained terribly fast every day. I guess less or no pain would drain me less tbh.
CookieG House I try not to just recommend it so everybody cause fibro is a very case by case thing but it’s Aventyl, a tricyclic antidepressant often used to treat pain. Might be something to look into! I feel you on the many conditions thing :( sending good vibes your way!
@@chronicallycal Thank you!
I totally get that, I just sometimes feel like looking into the options. I mean, if there is a good solution out there why not try to find it. Then I can ask my doctor about it.
Good vibes right back at you.
@@chronicallycal May I btw also ask if you taking a low, medium or high dose, and do you have any side effects?
CookieG House I’m on a low dose and my worst side effect at the moment (little over a year in) is dry eyes! And yeah I definitely get looking for solutions. It can often feel like there’s nothing we can do so it’s always good to at least hear about options :’) Thank you!
I'm SO SO glad you addressed the 'gov decide your disabled' issue!! I've been deaf in one ear since I was 6. When I was a teenager my mum tried applying (mostly out of curiosity to see if there was any support I qualified for) to get a letter back saying I wasn't disabled because I could technically still hear... I mean, provided no important sounds come from behind me, my left, are quiet, from sources without lips to read, or within busy environments... yeah sure. I CAN hear.
But it means so often when I fill in forms there'll be a box that's essentially like 'does the government recognise you as disabled?' to which I'm like well, no. But then the next box is 'if yes, please describe it to us and tell us what we need to do to accommodate for you'. Every time I have to have the dilemma of 'do I technically lie but get the provisions I need to hear, or tell the truth and await yet another situation where I have no idea what's going on?'
And I recognise that all I have is one non-working ear so it isn't too difficult a disability, but it is a disability non the less. Half the battle is just having to explain it again and again!
I have a similar experience. I am almost fully deaf in my right ear, and have been since I can remember. My parents never checked about governmental recognition, but they used to let my schools/teachers know about it so I could be sat on the side of rooms where I could hear better. But, as I got older I kind of just stopped mentioning it and started to just adjust myself, and try to self-accommodate for my hearing. So now I just try to sit on the right side of places and by people, etc so I don’t have to crane my neck to hear, or just not be able to hear well. Ultimately it’s not the worst, but I think that is in part just because I have learned to adapt, and the people close to me know and some have also learned to adapt to to help me. The box check is the hardest for me. I don’t ever check it, but every time I’m confronted with it I think about it. I guess I just feel like it’s not real or valid or debilitating enough because I have learned to make accommodations for myself and it’s not as serious as full deafness.
The point about the stalls really struck a chord with me. I use a walker and I sometimes get a little bitter if a visibly “able-bodied” person takes an accessible bathroom stall or dressing room. I’ll think twice about this next time!! Thanks Jessica and Hannah!!
I became disabled at the age of 21, and being hurt at work at a young age, with back injury and a closed head injury, the worst judgement was not from people who didn't know me, but cousins and family, I waited 30 years to have back surgery, having never been in a wheel chair I wanted to keep that way. and then they went after the pain meds some asked me for them I said no, others used it as a ploy to get me to have the back work done, most people I know like me can't stand taking meds but do because the dr. tells them to, I look mine up, and see what they do just incase some thing goes bad. but that's me may god bless you lady's with love and happiness .
I still don’t know if I should call myself disabled or not. (I still don’t have a proper diagnosis for my chronic pains). Been working hard to get back into work (in school atm). I can’t stand on buses or trains or I can’t get out of bed the next day. Long days do the same. I can only attend school two days a week (it’s a very long commute), I tried three days for one of my courses. Managed two weeks then couldn’t get out of bed without help for a week and a half. All this, the uncertainty of not having a diagnosis, knowing that I’m very limited in my physical abilities, and my depression nagging at me with just this question that this video addresses.
I can’t thank you two how much hearing your discussion is helpful.
Ps. I wouldn’t survive an apocalypse. Regardless of its nature. I’m very dependent on my meds for survival.
Miara Avalin you ARE disabled because this condition affects your ability to do simple, every day tasks. At least the symptoms described affect you in a way that, if you live in the USA, you are disabled under the ADA, Americans with Disabilities Act.
Have you been checked for fibromyalgia?
CookieG House once. Almost a decade ago now. The result being ‘not yet’.
I hope you haven't stopped reading the comment section yet.
I just wanted to say thank you because this video gave me the courage I needed to put my OCD on the disability section of a volunteer application form. I was so anxious that I wasn't disabled enough or because it wasn't physical that I'd be ridiculed and questioned about it. I realised that it would impact my ability to do certain jobs and therefore was disabling and valid. Your videos really do have an impact on the world and because of how amazing you are, the change you're making is such a positive one. Thank you :)
This is such an important video. Thank you. As someone who struggles asking myself this question I really needed to see this.
Love this. I've had chronic illnesses for more than half and am mostly bed and housebound. I've still been accused of not being ill, but being attention seeking and lazy - especially when I post about it. I've also been told many times that I look fine, judged on the times I'm able to be out of the house for a small time, told I shouldn't be going on holiday while also being told I'm wrong for being in bed, and told that because I can read or go online that I'm not that ill. These voices may be a minority, but quieting them in your head can be hard. These days I'm much better at that but it's disgusting how able bodied treat those who are sick. Thank you so much for this viseo and using your platforms to highlight disability and that we don't always look sick and are allowed to live.
I get asked that a lot, especially since I use a wheelchair but I still walk sometimes.
Listening to you two is like listening to my disabled wife. She has been this way her whole life, in pain her whole life, but does not show it. Unless she is wearing all her braces.
I love listening to you two!
Love this video. I'm in a wheelchair but generally every day life is average so actually it can bug me when people overestimate my disabledness. Though, what I found hilarious, is that one woman looked at me and asked "what [I'd] done" (assuming I'd just had an injury) but before I could answer, she then looked at my sister and said "or is it permanent?" 😡
I understand why people like person first but personally I don't have the time or patience to say "I'm a person with a disability" multiple times when I could just say "I'm disabled" 😂
I don't use "PWD" because I am rendered Disabled politically and socially more than by my body.
I love love love this discussion, as someone who's been hearing impaired since childhood and gotten used to the hearing aids etc etc I never considered myself disabled until university when I got DSA and exam provisions. I also struggle with how my disability is visible at times, and not at others (i.e. when I am/aren't wearing aids, or when my hair is up/down), and the potential effect that can have on peoples perception of me. Thanks for having this conversation!
Wonderful video. Hannah’s absolutely lovely and I’m so glad you two did a collab!
This made me feel a lot better about everything that is wrong with me. Some days are ok and some days are really bad and when I have a bad day people just act like “well you were fine yesterday” and when I have good days they act like “well you were acting like you were dying yesterday”. I have a couple chronic pain disorders and ended up suffering an over dose from over prescribed medication and now have a language processing disorder from it. Woot. My biggest allies have been coworkers who have suffered from chronic pain disorders and brain injuries.
Jessica, where did you get your amazing dress? This is totally up my vintage goth alley!
The link is in the description :)
Thanks so much for making videos like these. I have a number of invisible disabilities (physical and mental/learning), and I'm always worrying about whether I'm disabled enough to do things like sit in the seats reserved for disabled people on public transport, or ask my professors for extra help, and whether or not it would be particularly weird for me just to lie down on the floor in the hall because my back hurts so much. Watching your videos and hearing these sorts of conversations really helps me to own myself and my disabilities, and helps give me confidence to live my life. So thank you. (:
OMG I’ve been waiting for this collab ALL DAY
Thank you so much for this. Truly. As someone with Bipolar Disorder, as well as comorbid social anxiety, ADD, Diabetes, and serious joint and ligament injuries from a motorcycle accident years ago, I do struggle with wondering if I am disabled enough so much. I struggle not to buy in to what others say when they want me to do something I know I cannot do, just because it looks like I could do it. I grew up with everybody thinking I was just lazy or useless as well. While receiving disability payments from the government (I live in Canada), I was also confused when my doctor informed me that this did NOT mean I was legally disabled. It was...strengthening to watch the two of you discuss something that is so often on my mind.
I get migraines and very severe headaches all the time..
Which is temporarily disabling, I spend more than 12 hours in complete agony and can’t function at all.
The other day I was thinking about this topic and thinking that I probably am, in sense of I can’t do certain jobs or do certain things that triggers my headache
I can’t go on long trips or this or that
And in my mind I think I kinda am, but I don’t know really tbh.
i always enjoy your conversations. disability is something that people dont understand. it can be invisible to most or it can be someone in a wheel chair/ walking cane/ prosthetics. a have a friend who broke her back in a horse riding accident and struggled through her job delivering pizzas so she didnt end up homeless. she had a disabled sticker on her car so she could use the accessable carparks and came back to her car one night to a nasty note that said if she was so disabled, than what was she doing working as a delivery driver.
another friend was in a car accident and needed the use of a cane to walk (and also had a disabled sticker on his car) and was told by a road works person that he had to park down the street and walk to his home because the road was closed and too bad buddy.
I was told quite recently that because I wasn't having epileptic seizures almost daily (mine are kind of seasonal) that I wasn't really disabled.
Incorrect. Whether you’re having seizures now or not, you’re technically always disabled. You cannot control when/if you have a seizure! A disability is a disability. Just ignore the uneducated, judgmental people& move on!
Same here! I feel your pain ! xx
Lmao because since it's seasonal you know the day and time of your future seizures. What kind of logic is that.
@@Raev222 WTF No I have more of a chance of seizures during winter due to the angle of the sun shining through tree branches, fences, hedgerows etc when in a vehicle or even walking, so fun for me!
Also, it is impossible to predict seizures, you can sometimes feel when one is coming on, (an Aura) but not always.
My disability journey really started fall 2017, the start of my 3rd year of vet school, as I started deveoping progressively worse pain, fatigue, and weakness. Over the next year, I was diagnosed with fibromyalgia and autoimmune disease (sjogren's syndrome +/- scleroderma), ended up on 40+ pills per day for my pain and fatigue to be low enough for me to survive clinics, and have completed my clinical year of veterinary school in a power wheelchair, as I cannot stand or walk for long periods of time. I have only 3wks to go (which are now being completed via online rounds), and then will officially be a kickass disabled veterinarian! It's been very difficulty learning to accept my conditions and everything that comes with them while in an intensive program just trucking along and barely surviving. As I begin to transition into the working world, I'll be able to have better control over my hours and giving my body what it actually needs, but I definitely know I will be facing even more of the problems with invisible illnesses, as I'll hopefully manage myself in a way that my symptoms are low enough that I don't require a wheelchair most of the time.
Clients were all wonderful, aside from one older man who saw me stand up and walk literally 4 steps to grab something before retreating back to my chair and says in front of several other people "Look, she can walk!" with an amazed tone of voice, to which I replied "yes, I'm thankful that I am still able to do some standing and walking, but require this chair for anything more' to which he replies in such a shocked tone "so you actually _are_ disabled?", as if I was just using this large intrusive chair just for funsies.
I've been thinking of starting a youtube channel, largely discussing disabilities and accommodations through schools, as well as cats (crazy cat lady here), and am excited to think about this as I have more time on my hands.
Yay! the two TH-cam queens! ❤️
Thank you so much for this video. I have a panic disorder, which I came to recognize as a disability when I had to quit yet another job because of my loss of mobility and cardiac arrhythmia during attacks. I'm training a service dog now and working with my doctors so things are becoming more manageable, but this kind of validation is wonderful to hear!
Yes! as someone with endometriosis im always confused as to where i stand! Its a chronic illness but i can cope some days and not others?!
I have chronic pain that is fine somedays, sometimes even gone, but disabling other days. Not so disabling I can't do things, but I have had days I was in so much pain I didn't remember driving home. I am also not able to concentrate enough to socialise or focus on anything when I have a bad day. At the same time, I can have physical therapy as well as painkillers, and both help with the pain, so does that count as disabled? I wouldn't consider myself that, although perhaps I should in a way?
In the USA, both of you would be considered disabled. Read the ADA, Americans with Disabilities Act.
The definition: 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
So as endometriosis is long-term, it would depend on the extent to which it affects your ability to do normal things. If it's well managed and you can do a normal day = not disabled. If it stops you from doing normal things on a regular basis = disabled.... but of course then people can always have the argument about what counts as a "substantial" impact and what doesn't.
I have had so many people give me dirty looks when I park in handicap spots, even though I have the appropriate placard to do so. I have an arthritic condition that will flair if I overstressed my body. When it first reared its ugly head I was in a wheelchair for about a year, for pain and fatigue management, and when I would brace myself on my car and walk to the back to get out my chair I had a number of people tell me to stop faking needing a chair. Now that I'm out of the chair I still have to keep an eye on my fatigue and pain levels, because if the get too high I can be bed bound for 3+ days. I look able bodied but am not, it can be discouraging and disheartening to have people look down on you or say you are faking when you are struggling and pushing through so much. Thank you both for speaking so openly and honestly about your experiences and your disabilities, it makes me feel a little less alone in dealing with the stigma and judgements of others.
Autoimmune diseases tons of fun I was diagnosed with hashimotos @15 😕
I was diagnosed with Hashimoto and hypothyroidism at 13 (almost 36 now). The constant fatigue, severe digestive problems, dependance on a pill to live decently, constant drowsiness/sleepiness, depression, etc, are not enough problems for it to be considered a disabling condition where I live. It's like Jessica was saying in the video, they probably think: if you can't see it, it's not bad enough. Hope yours is somehow controlled. Best wishes xx
My grandma was so nervous about applying for a disabled parking placard. At the time she was 91, and using a wheelchair. She really thought she’d be questioned somehow or denied because she wasn’t “disabled”.
Ive thought about the apocolypse thing too.............. Diabetes type 1. have been 20 years.
IM FUCKKKKKED
Just curious- do you identify as disabled? I have type 1 as well and even though I tick the disabled box I don't think of myself as disabled.
@@lenberry6721 I always feel weird filling out those "disabled identify" sheets like at jobs. I put down yes Because diabetes is in their list. But I dont think of myself as "disabled" in particular. Like i can still function in society fairly normally.
So in General "no". But I def have times I need to pull the "diabetes" card. 😂
Hannah, I heard the same with my stoma nurse in Canada. She kept trying to assure me that I was not disabled. But also that I could apply for government assistance, etc.
Looking back I think she was trying to reassure me in some way, but it was very much based on the stigma associated with disability. And has been a part of my own internal debate about my disability. Jessica's analogy of cochlear implants though has made me realize that my stoma/ostomy did not automatically "cure" my disability, bu instead is more of an assistive device for my disability.
Thank you for this video ladies!!