I'm so glad you are bringing this subject up, I have Joint Hypermobilty Syndrome which means I dislocate my joints easily. I started off so called 'able bodied' but damage built up over the years, and I now walk with the aid of a elbow crutch. Over the years I have been glared at for using a walking stick when I was younger. Been told by social services that I had to apply for disability benefits, only to be told that I am 'not disabled enough' to qualify, and that is a literal quote. I have a carer who comes twice a week to give me a shower (one of the few things I absolutely can't do alone), and last year I had a telephone care review by a social worker. I'm a very independent disabled person, I drive and work part time as a self employed person, and even go on walks in the countryside with our dog occasionally, but her attitude really made me angry, especially since she was supposed to be a social worker. She actually asked me, well if you can do those things, then why do you have a carer. I then had to explain to her even though it clearly states it in my care plan, that I struggle to get in and out of the bath, and due to joint damage I can't wash or dry my own hair, and find it hard to get dressed on my own after a shower, also because my joints are unstable my balance is crap and I am a 'fall risk'. Then she made me even angrier, when she said well if you are working why don't you pay for your care. So I bluntly told her that I earn less now than when I was briefly on benefits, after I lost my job due to health reasons, and if she didn't believe me then she could check my tax returns. Not to mention that she blatantly suggested that I get either my husband (who works full time, plus does all the cooking, shopping, etc), or my daughter (age 20, who does lots of stuff for me, but doesn't really want to give me a shower, and really WHY THE HELL SHOULD SHE?!) to do it... 🤬🤬🤬 So I would like to point out that a lot of disabled people DON'T get any kind of cash benefits. I did get free handrails on the stairs and bathroom, and I do have a carer for 45min twice a week, but they wouldn't pay for a wet room or anything like that, and so I have to struggle with a bath board, and had to have several arguments with them to get a drop down rail next to the toilet... that is it, nothing else. Oh, and the incident with the social worker isn't the first time I've had to fight to keep, or even get the care in the first place. I'm not alone in this either, many of my disabled friends have also had similar experiences.
I agree with the majority of what you're saying. I was diagnosed with juvenile idiopathic arthritis at 9 months old. I have lived with an invisible disability all my life. When I get sick, I can flare up badly. A bad, nearly crippling flare ended my public education. I had to be homeschooled for the rest of my educational journey because of how severely I flared up due to my autoimmune disease. I was practically unable to walk as a child and when I could, I wouldn't last very long. I was offered a wheelchair as a child, but I refused because I couldn't stand the looks of pity I got from other people the first and only time I used one. So I used other things. I sat in shopping carts longer than the average child. I used a stroller longer than an average child. When I was about 11, my parents bought a wagon that I could ride in because I could barely walk. After I flared up and quit school, I could barely write for two years. I don't have a wheelchair. I don't have crutches. I don't have a cane. I have nothing that would make me 'look disabled' to society. I'm a 19 year old girl who looks as if I'm 14-16. But their markers, I'm too young. I was certified disabled by the US government when I was 7 years old. At 7 years old, I got a parking placard for handicapped spots because I could barely walk. But again, I don't 'look disabled' instead I look like an average non-disabled teenage girl. I remember two times where my permit was questioned by other people, and it hurts. It does. It hurts when you're merely a child, and you're told you aren't disabled enough, and you aren't worthy of parking in certain spots. It hurts when you're accused of taking spots away from 'people who actually need them'. Being invisibly disabled is hard. It is. Society's perception and my fear of their reactions is more harmful to my overall well-being than my actual disability. When I park in a handicapped spot, I shouldn't feel the need to 'limp more' to be seen as more disabled. I shouldn't be so nervous and anxious that I look around and see if people are staring at me. It's damaging. It's especially damaging if it's a child. I understand people mean well when they say certain things (particularly to people who look like me), but life would go a whole lot smoother if people would just mind their own business. I have experienced more hardship in my life than the average person. I was given my permit but the government. I have a right to use those spots. Don't tell me I'm not disabled enough, because you don't know my life. You don't live it. You don't know what I've been through, and what I've done to make myself look as healthy as I do. So keep your comments to yourself.
So glad i found your videos today. I have just watched a few back to back. I have always felt judged or scrutinised for not being disabled enough because it is invisible. I then hide away so i don't experience that. I have recently took a leap of faith to go for the career and sports i feel passionate about despite all the scrutiny. Your vlog has reassured me and affirmed that those of us that feel this sense of too disabled or not disabled enough still have a fighting chance. You have encouraged me to not hide away any more. Thankyou
Ty Oliver…..Born with No hip, countless operations and I’ve jus had my blue badge revoked after 10 years…. Apparently I have to prove myself to the council……local council are now qualified surgeons!!
I remember a few years back, I was waiting for someone. I saw a man walk up the stairs with a walking stick, and I shouted out "The lifts at the side mate." It was said with good intention, but as a person with a disability from birth, I should have known better. He looked back at me, and I knew then, I shouldn't have said it . I took away the man's dignity.
Ooft, this hit me. I’ve got M.E/CFS which is completely invisible. I’m constantly too disabled to do the things I want to but never disabled enough in peoples eyes. It’s true I am a lot less disabled than some other people but I’m still disabled and frequently exhausted and unwell because of my illness. Such a good video !!
Same here- I have a peripheral nerve disorder which means I can still walk but I’m slow and no one has any idea how painful or difficult it is since my balance is so bad. Are you finding different ways to still do the things you want? I’m pretty new with my disability so tips appreciated
I use a powered wheelchair and people assume I can't do ANYTHING. The shock that I can press the bell on the bus etc pretty sure it shock of their life. lol But then when I ask for help from council & NHS...all of a sudden I am not disabled enough for the help I need for a decent life. lol I know I'd be a lot less disabled if everywhere was accessible that for sure.
Have you found being in lockdown has made you feel less disabled? Simply from the lack of interaction with the public? Before watching this I had kind of forgotten how much this happens in my normal life and it’s something positive that’s come out of me being in lock down
One time when the subject of my glaucoma came up I was told I can't have glaucoma because I was able to drive and I had to explain that it's in the early stages and I can not drive at night anymore so they told me to start eating carrots another person told me to start learning sign language while I still have my sight. And the last job I had the supervisor found out I had an old Army injury when the chance for a new position came up and it was a position that I knew I could not do but was fine where I was I was laid off the next day even though I had worked there for 2 years without issue another time I got told I was not allowed to use the disabled persons elevator and had to take the stairs like a normal person so I started using it at the same time as a friend of mine who was in a wheelchair and knew about my knee problem.
The thing with being judged and assessed is that there's two different sorts of people doing the judgement and assessment. Those who have a business doing so, and those who don't. If government is supposed to give any sort of assistance to disabled people on an individual level, then the disability has to be assessed by *somebody*. You can't give out blue badges in good faith, because then everybody would have one. I'm not very well informed about the overall system in the UK, but I earn my living doing horrendous taxes for people in Germany, where the health insurance provider decides which assistive equipment (e.g. wheelchair) you should have or not have (and then you sue them, because from what I hear you never get anything without suing), and the government has a system of certified "medical boards" that assess a (literally) "grade of disability", which mostly determines the height of the tax credit (and other benefits) you or your caretaker will get. I believe that everything should be done to ease life for disabled people, but I also believe in law and order, and if everybody can get what they want - and I don't even want to start on how during the current plague *everybody* is applying for government emergency funds whether they're in need for assistance or not - then everybody would have the blue badge and the max tax credit; including people that aren't disabled at all but shameless enough to grab what they can anyway. So some sort of assessment is necessary for an as fair as possible, merit- and need-based system. Of course, the random "you're not disabled enough to park there" crowd has no business mouthing off at all...
Assessments are fine issue is the Department Work and Pensions who assess for these financial things, outright lie, make assumptions based on a 1 second snap shot of what they saw rather than your entire form and medical records etc that the issue. To point in Scotland they are setting up their own system! Like on my assessment: came to assessment alone and no evidence she uses a wheelchair when I was with someone in a wheelchair. 😂 Another issue is who decides what is disability. Who said yes this person disabled but this person who is a single low limb amputee isn't disabled as they can walk...Like single leg amputees dont automatically qualify for disability only those who are double lower limb amputees are disabled!
If i ever became wheelchair bound, I would appreciate the help of people opening doors for my of getting my up a hill. I have not much a big ego that i think they either find my unable to do it. Those random strangers are trying to help you in case of out of work scenarios for your good, not to prove they are inclusive. If those people did not exist, and i am in a wheelchair then i would have to relay on 5 people who would help my bescause the vast majority are narcastic assholes who do not care about others
All my old friend sadly dissapear since i have become dissable..it really hit me hard u know..god help me at those times..but i really dont want to see them anymore! Maybe i choose a wrong friend at the first place..
I'm so glad you are bringing this subject up, I have Joint Hypermobilty Syndrome which means I dislocate my joints easily. I started off so called 'able bodied' but damage built up over the years, and I now walk with the aid of a elbow crutch. Over the years I have been glared at for using a walking stick when I was younger. Been told by social services that I had to apply for disability benefits, only to be told that I am 'not disabled enough' to qualify, and that is a literal quote.
I have a carer who comes twice a week to give me a shower (one of the few things I absolutely can't do alone), and last year I had a telephone care review by a social worker. I'm a very independent disabled person, I drive and work part time as a self employed person, and even go on walks in the countryside with our dog occasionally, but her attitude really made me angry, especially since she was supposed to be a social worker. She actually asked me, well if you can do those things, then why do you have a carer. I then had to explain to her even though it clearly states it in my care plan, that I struggle to get in and out of the bath, and due to joint damage I can't wash or dry my own hair, and find it hard to get dressed on my own after a shower, also because my joints are unstable my balance is crap and I am a 'fall risk'.
Then she made me even angrier, when she said well if you are working why don't you pay for your care. So I bluntly told her that I earn less now than when I was briefly on benefits, after I lost my job due to health reasons, and if she didn't believe me then she could check my tax returns.
Not to mention that she blatantly suggested that I get either my husband (who works full time, plus does all the cooking, shopping, etc), or my daughter (age 20, who does lots of stuff for me, but doesn't really want to give me a shower, and really WHY THE HELL SHOULD SHE?!) to do it... 🤬🤬🤬
So I would like to point out that a lot of disabled people DON'T get any kind of cash benefits. I did get free handrails on the stairs and bathroom, and I do have a carer for 45min twice a week, but they wouldn't pay for a wet room or anything like that, and so I have to struggle with a bath board, and had to have several arguments with them to get a drop down rail next to the toilet... that is it, nothing else.
Oh, and the incident with the social worker isn't the first time I've had to fight to keep, or even get the care in the first place. I'm not alone in this either, many of my disabled friends have also had similar experiences.
I agree with the majority of what you're saying. I was diagnosed with juvenile idiopathic arthritis at 9 months old. I have lived with an invisible disability all my life. When I get sick, I can flare up badly. A bad, nearly crippling flare ended my public education. I had to be homeschooled for the rest of my educational journey because of how severely I flared up due to my autoimmune disease. I was practically unable to walk as a child and when I could, I wouldn't last very long. I was offered a wheelchair as a child, but I refused because I couldn't stand the looks of pity I got from other people the first and only time I used one. So I used other things. I sat in shopping carts longer than the average child. I used a stroller longer than an average child. When I was about 11, my parents bought a wagon that I could ride in because I could barely walk. After I flared up and quit school, I could barely write for two years. I don't have a wheelchair. I don't have crutches. I don't have a cane. I have nothing that would make me 'look disabled' to society. I'm a 19 year old girl who looks as if I'm 14-16. But their markers, I'm too young. I was certified disabled by the US government when I was 7 years old. At 7 years old, I got a parking placard for handicapped spots because I could barely walk. But again, I don't 'look disabled' instead I look like an average non-disabled teenage girl. I remember two times where my permit was questioned by other people, and it hurts. It does. It hurts when you're merely a child, and you're told you aren't disabled enough, and you aren't worthy of parking in certain spots. It hurts when you're accused of taking spots away from 'people who actually need them'. Being invisibly disabled is hard. It is. Society's perception and my fear of their reactions is more harmful to my overall well-being than my actual disability. When I park in a handicapped spot, I shouldn't feel the need to 'limp more' to be seen as more disabled. I shouldn't be so nervous and anxious that I look around and see if people are staring at me. It's damaging. It's especially damaging if it's a child. I understand people mean well when they say certain things (particularly to people who look like me), but life would go a whole lot smoother if people would just mind their own business. I have experienced more hardship in my life than the average person. I was given my permit but the government. I have a right to use those spots. Don't tell me I'm not disabled enough, because you don't know my life. You don't live it. You don't know what I've been through, and what I've done to make myself look as healthy as I do. So keep your comments to yourself.
So glad i found your videos today. I have just watched a few back to back. I have always felt judged or scrutinised for not being disabled enough because it is invisible. I then hide away so i don't experience that. I have recently took a leap of faith to go for the career and sports i feel passionate about despite all the scrutiny. Your vlog has reassured me and affirmed that those of us that feel this sense of too disabled or not disabled enough still have a fighting chance. You have encouraged me to not hide away any more. Thankyou
Ty Oliver…..Born with No hip, countless operations and I’ve jus had my blue badge revoked after 10 years….
Apparently I have to prove myself to the council……local council are now qualified surgeons!!
I remember a few years back, I was waiting for someone. I saw a man walk up the stairs with a walking stick, and I shouted out "The lifts at the side mate."
It was said with good intention, but as a person with a disability from birth, I should have known better.
He looked back at me, and I knew then, I shouldn't have said it .
I took away the man's dignity.
I think we've all said things we shouldn't at some point, as long as we realise our error and learn from it that all we can do.
Thanks for drawing attention to these issues. I have two children with this challenge. People with perception they are not disabled enough.
Any time! thats what im here for! that sounds tough. Hopefully we can change this and addess the stigma that surrounds disability
Ooft, this hit me. I’ve got M.E/CFS which is completely invisible. I’m constantly too disabled to do the things I want to but never disabled enough in peoples eyes. It’s true I am a lot less disabled than some other people but I’m still disabled and frequently exhausted and unwell because of my illness.
Such a good video !!
Same here- I have a peripheral nerve disorder which means I can still walk but I’m slow and no one has any idea how painful or difficult it is since my balance is so bad. Are you finding different ways to still do the things you want? I’m pretty new with my disability so tips appreciated
I can't fathom why anyone would question the evident disability of someone who can't walk unaided.
Because they assume you've got an acute injury. I found when on crutches that poor assumed I'd injured my leg lol
I use a powered wheelchair and people assume I can't do ANYTHING. The shock that I can press the bell on the bus etc pretty sure it shock of their life. lol
But then when I ask for help from council & NHS...all of a sudden I am not disabled enough for the help I need for a decent life. lol
I know I'd be a lot less disabled if everywhere was accessible that for sure.
Absolutely true
So True, I understand what you are saying. Its really sad. I always feel I have to explain myself then I tell myself no you dont.
Have you found being in lockdown has made you feel less disabled? Simply from the lack of interaction with the public?
Before watching this I had kind of forgotten how much this happens in my normal life and it’s something positive that’s come out of me being in lock down
One time when the subject of my glaucoma came up I was told I can't have glaucoma because I was able to drive and I had to explain that it's in the early stages and I can not drive at night anymore so they told me to start eating carrots another person told me to start learning sign language while I still have my sight.
And the last job I had the supervisor found out I had an old Army injury when the chance for a new position came up and it was a position that I knew I could not do but was fine where I was I was laid off the next day even though I had worked there for 2 years without issue another time I got told I was not allowed to use the disabled persons elevator and had to take the stairs like a normal person so I started using it at the same time as a friend of mine who was in a wheelchair and knew about my knee problem.
Hun thanks for acknowledging CP love as always keep up the fight I differently will!
The thing with being judged and assessed is that there's two different sorts of people doing the judgement and assessment. Those who have a business doing so, and those who don't. If government is supposed to give any sort of assistance to disabled people on an individual level, then the disability has to be assessed by *somebody*. You can't give out blue badges in good faith, because then everybody would have one. I'm not very well informed about the overall system in the UK, but I earn my living doing horrendous taxes for people in Germany, where the health insurance provider decides which assistive equipment (e.g. wheelchair) you should have or not have (and then you sue them, because from what I hear you never get anything without suing), and the government has a system of certified "medical boards" that assess a (literally) "grade of disability", which mostly determines the height of the tax credit (and other benefits) you or your caretaker will get.
I believe that everything should be done to ease life for disabled people, but I also believe in law and order, and if everybody can get what they want - and I don't even want to start on how during the current plague *everybody* is applying for government emergency funds whether they're in need for assistance or not - then everybody would have the blue badge and the max tax credit; including people that aren't disabled at all but shameless enough to grab what they can anyway. So some sort of assessment is necessary for an as fair as possible, merit- and need-based system.
Of course, the random "you're not disabled enough to park there" crowd has no business mouthing off at all...
Assessments are fine issue is the Department Work and Pensions who assess for these financial things, outright lie, make assumptions based on a 1 second snap shot of what they saw rather than your entire form and medical records etc that the issue. To point in Scotland they are setting up their own system!
Like on my assessment: came to assessment alone and no evidence she uses a wheelchair when I was with someone in a wheelchair. 😂
Another issue is who decides what is disability. Who said yes this person disabled but this person who is a single low limb amputee isn't disabled as they can walk...Like single leg amputees dont automatically qualify for disability only those who are double lower limb amputees are disabled!
If i ever became wheelchair bound, I would appreciate the help of people opening doors for my of getting my up a hill. I have not much a big ego that i think they either find my unable to do it. Those random strangers are trying to help you in case of out of work scenarios for your good, not to prove they are inclusive.
If those people did not exist, and i am in a wheelchair then i would have to relay on 5 people who would help my bescause the vast majority are narcastic assholes who do not care about others
All my old friend sadly dissapear since i have become dissable..it really hit me hard u know..god help me at those times..but i really dont want to see them anymore! Maybe i choose a wrong friend at the first place..
By the way..Hai Oliver! Iam from Malaysia! Stay safe ya! :p
Damn that sucks bro
Nice 👍 I totally get what u r saying.👍👍