Can you tell if a disabled person is 'faking'? (yes, Jameela Jamil) [CC]

oh hello today we're discussing how to tell if the disabled person is faking you can't okay okay okay we're adults we can discuss things i mean actually some of us aren't adults but in my experience it's the almost adults who often have a better grasp of respecting other people so congratulations gen zed i look forward to you running the world if we haven't ruined it by then moving on from my ecological anxiety am i looking my best right now no am i feeling my best right now no am i deeply offended by something i saw on twitter always unless you follow me on instagram and if you don't why not the link is already in the description you probably won't realize that i spent last week in what became an 80-hour migraine it was horrific at least last week's videos were pre-recorded so god bless you past me the pain started on tuesday evening and by wednesday morning i was just continuously vomiting unable to stay awake sit up or have light around me for 80 hours so that was awful we debated calling an ambulance because when i'm really vomiting the only thing that stops it is an antiemetic injection straight into my veins but that's not always the most helpful thing because then the ambulance crew have to take me into hospital which is the worst place to be with a migraine it is so bright and so harsh and there's no access to drinks or medications because it takes four hours for anything you ask her to arrive and i really wish that was an exaggeration but no so hospital is an absolute last resort but fortunately i married into a medical family so there are professionals we can call upon when we're in need being ill that particular week was also really sucky because i was meant to be going to a big event on wednesday evening to showcase all of the new content that'll be coming out this year on sky tv because they just made me a sky ambassador and i've never been an ambassador of anything so i was very much looking forward to how swanky that was going to be also i've never had skye and i was meant to be filming collabs with hannah witton on thursday and i was just looking forward to living my life as a human who could think without extreme pain but no i did not get to have the fun week when i was finally able to look at a screen again i idly checked twitter to find the headline jamila jamil accused of faking her illnesses if you don't know jamila jamil is a british actress presenter and activist who has ehlers-danlos syndrome and a number of co-morbidities which is what you call diseases conditions that occur at the same time within one person and overlap or are linked which is the thing i have so that's great really helped me to feel better jamilah was also struck by a car at the age of 17 which broke several of her bones and damaged her spine and she was bed-bound for a while afterwards i paralyzed my arms at the age of 17 and because of that had a hospital procedure that went wrong and left me that bound for a while afterwards so not that i'm taking this too personally or relating too much to something that has nothing to do with me or anything an instagram user had basically created a highlight thread that had accused jamila of lying and faking her illnesses going so far as to say she's suffering from monk housing syndrome which it's like it's an incredibly long and detailed and rude deep dive that i am not going to link you to because reading it will only hurt your soul although some of the worst parts of this person's accusations including calling the diagnosis of ellis daniel syndrome or eds a red flag for among children's has now been removed which yes because bullying one person you think is faking a disability is very different to systematically slamming an entire group of people i mean it's not much better but at least you're this much less of an [ __ ] now in the past jamila has spoken about having been born partially deaf and allergic to peanuts and shellfish being diagnosed with ellis dallas at the age of nine being highly allergic to bees being chased by bees experiencing two car crashes and surviving cancer twice and according to the instagram if this was just too many things to happen to one person i must therefore be fake i mean it doesn't sound like that much to me said the deaf girl with two genetic disorders that have led to a literary accident also in researching this video i found out that the high incidence of cancer in those with eds which in no way worries me about my future for those who don't know monk towson syndrome is a mental disorder in which a person repeatedly and deliberately acts as if he or she has a physical or mental illness when he or she is not really sick they can also make themselves ill by taking poisons or deliberately injuring themselves their main intention is to be seen as being poorly so that other people will care for them and they will be the center of attention in no way is their behavior linked to a practical benefit such as access to a strong painkiller or claiming disability benefits financial gain and if that is their motivation then they can't be diagnosed as having one calcium or another fractitious i think i said that right or another factitious disorder because again it is in itself a mental illness it should also not be confused with hypochondriasis or somatic illnesses which is the expression of mental phenomena as physical symptoms eg you worry so much about whether you're going to have a heart attack that your body then gives you the symptoms of a heart attack because people with those conditions genuinely believe that they're ill and they are they didn't make those symptoms happen whereas people with factitious disorders are aware that they are not actually unwell so why did this news upset me so much why did it hurt me because even though i had spent days fighting off the need to call an ambulance even though to me getting medical attention is actively repulsive even though i have a genetic disability that can be easily proven and seen i'm still scared someone will say i'm faking why do you think i was so nervous to make a video about my diagnosis having changed i was diagnosed with a connective tissue disorder i'm still diagnosed with a connective tissue disorder it's really a very marginal difference but would having more than one thing wrong with me mean people would think i was faking well it's actually incredibly common for people to have more than one illness or disability your body is a very delicate system and it's constantly balancing itself but once one thing is wrong it's kind of common for another to go too plus eds is exactly the type of confusing connective tissue disorder that comes with a whole load of symptoms like loose joints muscle fatigues growths heart valve problems degenerative joint disease chronic pain and often mast cell disease which essentially gives you allergic responses to a whole range of things but it can be completely different at different times based on inflammation and the levels of histamine that's the whole thing idiot sounds so weird but yet it's real disorderly collagen affects every system in your body and one of the main reasons that jamila was accused of faking was because she said she was born allergic to peanuts but grew out of it which 20 to 25 of people with a peanut allergy do anyway and which is quite common with mast cells these so i can eat gluten-free bread some days and then the next day i can eat a slice from the same loaf and have a reaction is that annoying yes do i wish it would stop yes i'm gonna talk more about eds in a video on friday but let's break down how to tell if a disabled person is faking resist rolling your eyes firstly why do you care i get the disabled people are interesting we're generally fabulous and sassy but we can't help it if the intention is that by weeding out fakers it's stopping them from taking the place of someone who actually needs it then no that's that's not how humans work there aren't a set number of disabled people allowed to be in society at any one time and the rest of us are kept in a cage you're not creating a positive and freeing someone you're just perpetuating a negative and it's impossible to tell how ill or disabled someone is just by looking at them even doctors can't tell without running multiple tests and often not even then take a look at the comments on my i was misdiagnosed video so many people who were told by their doctor that they were fine only to find out later that they'd had cancer the whole time or a genetic heart defect since birth but no doctor would ever listen to them see if even doctors don't always get it right how can a random stranger who's never met someone only seen them through the internet and put together a load of third-hand information lick i get that maybe some of the things she said are inconsistent but a eds is remarkably inconsistent condition and b it's not that odd for two people witnessing the same number of bees to remember it differently when one of those people is pretty chill about these and the other is definitely allergic and c most of these retellings are coming from interviews and thus fire different journalists and editors who will all say different things also can we just discuss how brain fog is a thing because i can't remember precise details about my own timeline and that gets better or worse based on how tired or in pain i am being mean to fake disabled people doesn't make you an ally or a hero to real disabled people added to that it's near impossible to get accurate facts from an interview in one interview jamila spoke about being bed-bound for two years and having to use a zimmer frame same thing but in another interview they recorded that she was bed-bound for one year and had to use a wheelchair this seemed to confuse her online attacker but i think we can all agree it's not that complex it's just two interviewers picking out the part of a story that's the most interesting to them i say that i was bed-bound for two years but obviously that doesn't mean it was consistently awful and then on day 730 i just immediately stood up and was 100 better it's like climbing a hill with all these ups and downs the first year was the worst during that time i used both a wheelchair and a zimmer frame which of those age you personally find more interesting is likely what you'll pick up when writing the story i did an interview with maryclaire magazine once and the interviewer asked what my favorite alcoholic drink was i explained that i can't drink alcohol because not only would it dangerously interact with a painkilling medication i take in a life-threatening manner but that due to my connective tissue disorder my body has issues regulating my blood sugar levels which are obviously affected by alcohol and thus i do the best for my body by feeding it things that are beneficial and steering clear of anything that may harm it what was printed in the magazine jessica doesn't drink because she thinks her body is a temple what was that journalist okay look you cannot tell if a disabled or ill person is faking just by looking at them again in fact many people who have a definite verified 100 blue tick disability which isn't something i really want to have to say even those people face harassment for not looking disabled now you might say it's because disabilities are confusing and unless you're in a wheelchair because you're paralyzed it's apparently too complex for the average person to understand which is a massive disservice to the average person but please do bear with me i have a disability that paralyzes parts of my body for periods of time because my nerves don't work very well so an injury numbs them sometimes i have to use a wheelchair because i paralysed my foot one time i paralyzed both of my legs from the knees down i was the disabled sign and people still gave me grief it's not uncommon people drive up park in the disabled bay someone tells them all for doing so and then looks astonished when said driver gets out of the car and into a wheelchair when my legs aren't too great or my energy is low unless i'm out and about in my wheelchair i get this cold dread at the sort of standing up from it in public people are always so interested but some of the users can walk sure i mean not for long periods of time and often it will hurt to do so or they're very wobbly or it just done dangerous things to their heart but some wheelchair users can walk and just because a wheelchair user stands up from their wheelchair or walks does not mean that they are faking the need for their chair hi i know all of this but the thought that other people don't know this is what keeps me scared i don't know how to deal with harassment i don't have a disabled card that i can pull out and shove in their face oh please excuse me while i go home and come back with my entire medical file of doctor's diagnosis letters and my dna sequencing to show you my missing gene and i shouldn't even think that because i shouldn't have to prove my disability to anyone i shouldn't have to prove anything to anyone no one should we should all just be decent human beings who try to be the best people we can be and think the best of others of every 100 pounds paid out by the british government and benefits only 75 p is fortunately claimed and that is mainly because someone died but the system was too slow to react so still send them a payment there is no epidemic of people faking disabilities chill out the amount of government pays out is pitiful anyway going through the tests is humiliating and not even people who are genuinely dying always get through as jamila tweeted being gaslit about your health for entertainment is a very specific pain that a lot of people with ehlers-danlos and other invisible disabilities have to face every day by people who don't understand our vastly under-researched conditions and if that's you hey friend you are not alone there are lots of other people out there in exactly the same boat equally failing kind of afraid and kind of alone look you could be mad at jamia jamal for whatever other reason you like you don't like her acting fine you don't like a feminism fine ha lord people who have disabilities are not immune from doing bad things but if you tear someone down for disability related reasons then you need to recognize that you're hurting a lot of other people at the same time besides look munch houses might pop up in tv shows a lot but the incidence is only 1 in 50 000 or so and the incidence of ellis danlos is one in five thousand so it's pretty common for an uncommon thing really and thus we come to the end of the video subscribe to make sure you don't miss my next video where we'll be taking a closer look at ella's download syndrome and maybe after watching that this whole situation will make more sense to you see you then [Applause] [Music] you

Channel: Jessica Kellgren-Fozard

Views: 1,371,499

Keywords: jessica kellgren-hayes, jessica kellgren fozard, kellgren, jessica deaf, Jameela Jamil, How to tell if a disabled person is faking, Ehlers-Danlos Syndrome, EDS, hEDS, jameela jamil eds, jameela jamil faking, eds explained, jessica kellgren fozard disability, jessica kellgren fozard disabled, faking disability

Id: OBC3zNZx7Dg

Length: 14min 43sec (883 seconds)

Published: Tue Feb 18 2020

Reddit Comments

[u/ChaosBitch]

I hate when people who know nothing about disability accuse people of faking. For all intents and purposes my EDS is extremely visible. I'm wheelchair bound, when I walk with crutches you can see my knees hyperextending 45° and hear them crunching and I spend half my life pushing visibly subluxed limbs back into their sockets. I am still regularly accused of faking and making it up because when I try to explain that the main symptom of EDS is hypermobility they get very condescending and explain that 'they're double jointed too'. The reason mine was allowed to get this bad was because as a child I was accused of being a hypochondriac and doctors waved off chronic pain as being because I was overweight. My sister believes that I get out of the wheelchair at night and frolic around or something. I don't know why people get their rocks of on accusing the disabled of being fakers.

[u/peggingcarter]

I know for many of us the Jameela Jamil controversy has been difficult, especially with how willing so many people are on the internet to throw EDSers and the disabled under the proverbial bus. Jessicas musings on the subject were really helpful and cathartic for me and I hope you guys enjoy them too. In my opinion, the stats at the end about how extremely rare Munchausen is (1 in 50,000) vs Ehlers-Danlos (1 in 5,000) really help frame the discussion about ¨illness fakers¨ and how often those accusations are thrown around.

[u/Sjhart18]

This nearly made me cry. I’ve always avoided wearing braces if I can help it, because I don’t want people to think I was just doing it for attention when I take them off the next day.

I was in a car accident this past year and broke bones in both my feet. When I was transitioning from wheelchair to crutches, I was terrified to go back to the wheelchair, even for a day. Even if I was having an awful flare and every step on the way to class was a battle, I still felt like I couldn’t “move backwards” because of what people might think.

To be totally honest, it’s been 7 months since my accident, and 2 months since I got off crutches. Some days I still miss my wheelchair, and the fact that that makes me feel guilty is gross.

[u/emf1an]

I highly recommend you watch Jessica if you haven’t! She was so influential in accepting my disability and changing the way I view myself. She’s incredible

[u/aspenscribblings]

Regardless of your opinion on Jameela, if we let this shit fly, it only emboldens the people who accuse the rest of us of faking it. Who cares if there’s a few inconsistencies? What benefit does it bring to us for people to believe EDS is a “red flag” diagnosis?

At the end of the day, Jameela isn’t really my concern, though I’m sure t sucks for her. It’s that every publicly visible person with EDS is accused of faking. What kind of message does that send to people? EDS is not fakeable, you cannot increase your beighton score, you cannot make your skin stretchier than it is, you can’t make your joints pop out at the slightest thing when they don’t! But people don’t care about that. They’re too busy looking for a reason to harass us.

I see absolutely no way jumping on a few little inconsistencies in one celebrity’s story benefits us as a community at all.

[u/zebraonthemountain]

The original comments that started this all on her faking wasnt in regards to EDS though. It was because she claimed a bunch of random diagnoses and none of them matched up with symptoms she claimed.

Edit* It was the same thing that Lena Dunham did