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  • Hello lovely people, and welcome to to today's video.

  • It's going to be a bit of a little ranty chat which we haven't done in a while

  • and in front a new bed. You'll find out more about that in an upcoming video.

  • Today we are going to be discussing the awkwardness

  • of disabled people being seen as an inspiration.

  • The pros, the cons, the utterly painful simplified objectification of an entire group of people

  • that brings them down to just a secondary character in the life of whoever is saying it.

  • I have recently written an article about this for Cosmopolitan magazine

  • I shall leave a link down in the description below to said article.

  • It seemed to resonate with a lot of people so I wanted to bring it into a video

  • and turn it into more of a conversation.

  • Please let me know in the comments down below what your thoughts are as we go along

  • whether you agree, disagree, kind of think both ways, you are not sure how you feel about it either

  • I'm really interested to hear your point of view on this.

  • "hear your point of view" *laughs* Idioms are funny when you are deaf.

  • So, being called an inspiration is pretty common when you are disabled - especially if you are visibly so.

  • I am one with the wall. [a sound]

  • [Clara, off camera: Oh, the sun it came out]

  • Hi

  • We have all heard the stories of disabled kids who won awards at school simply for existing.

  • I mean, the film Wonder has many great things to say about inclusivity

  • but, at the end of the film, Auggie, this little boy who has Treacher Collins syndrome

  • is literally given an award *laughs* for standing out.

  • And inspiring the people around him.

  • And yes, I know you can say that the award is actually a recognition of his sterling character

  • and that's why he stands out and is so brave that he inspires others around him.

  • But if he didn't have facial deformatives would he still have been brave?

  • Would there have been any reason for him to be so? The film doesn't really answer that question.

  • Although I guess it's little unfair of me to think it should.

  • So let's talk about the positives

  • I often say that I see the word "disabled" as being something that is very positive.

  • It's a recognition of the fact that the world is a little harder for you to move through

  • than it would be for someone else.

  • It's a recognition of the fact that the world is a little harder for you to move through

  • than it might otherwise be.

  • I wrote in the article about how my life before and after being diagnosed was essentially the same.

  • There is a link in the description to a video that explains my disabilities.

  • Um - but basically it affects my muscles, soft tissue, organs, nerves, immune system, hearing, stomach,

  • fatigue - it's a variety.

  • My life was still hard, still painful, still exhausting but that diagnose changed rest of the world around me.

  • No longer did adults give me grief for what looked to them like "not trying hard enough."

  • Now, they made small changes around me that allowed me to fulfill my full potential.

  • And that's amazing.

  • So, we could argue that calling someone inspirational is just another way of recognising that struggle.

  • Something like "okay you have come to school even though both of your legs are disabled -

  • I should probably stop complaining about that massive bruise on my ?chin? and actually finish my essay."

  • That wasn't really meant to be sarcastic. *laughs*

  • Everyone should finish their essays.

  • And then equally, if you ignore that struggle it can be pretty devastating.

  • Obviously, not all disabilities are a struggle, we are not a homogeneous group of people.

  • Different conditions affect different people to different degrees and we have all become disabled at different times.

  • Whether that's pre-birth, or in your late twenties or in your fifties.

  • Or later.

  • So I am very much only talking from my own subjective viewpoint.

  • My disability is genetic.

  • I have had it since birth and although it has got steadily worse since I was a child

  • I still had symptoms then, it was just that no-one knew what was wrong with me.

  • Then I hit sixteen, and my body went downhill.

  • To the point that at seventeen I was hospitalised with two paralysed arms because my body does that.

  • And I then had a lumbar puncture that went wrong and leaked spinal fluid out of my body.

  • My spinal fluid leaked out of its little sac and into the body

  • Uh - it's not actually a little sac. It's a surprisingly large one.

  • Cue horrific pain and sensivity to light, sound and touch.

  • I was in so much pain I had to be kept in a dark room laying flat in silence.

  • Fortunately I have a fantastic imagination and kept myself amused for many hours thinking up very queer TV-shows.

  • I'm also a very determined person and I wanted to finish school with everyone else.

  • So at the ?end? of the day I'd make my mother get me out of bed and take me to school.

  • I had to use a wheelchair and I wore dark glasses, and I had a tendency to pass out

  • and *laughs* I don't really remember much of those two years.

  • I don't really remember much of those two years other than... I tried.

  • And failed. I had to repeat the year, unsurprisingly.

  • But that is not the point of this particular story.

  • On the last day of the year, the year me and my classmates would be graduating and I'd be waiting for summer to beging

  • so I could do the school year all over again. There was an award ceremony.

  • Can you see where this is going?

  • There are awards for seriously impressive things: the best all arounder,

  • the highest mark in any one test,

  • best sportperson and the sillier ones, too.

  • Class clown,

  • loudest activist - I don't know why that was in the humors department, it just was.

  • And then it came - the final award.

  • The award of bravery. Again you can probably see this punchline coming.

  • The headmaster stood on the stage, in front of the entire year group

  • we sat around tables, grouped to our friends

  • I sat at the back, in my wheelchair, not next to a table because my wheelchair couldn't go under any of the tables.

  • Oh, great, the sun came out again. Lah-di-dah.

  • It was the first time in a week I had left the house - I had even washed my hair.

  • The headmaster began ?the? speech:

  • "This person has taught us all a lesson about perseverance and bravery

  • This person has come through a medical crisis

  • and although they are still dealing with the repercussion they never gave up.

  • They have come back to class, and they have made the best of it, no matter how their body has let them down.

  • I'm proud to have this person be part of the school, proud of everything they have achieved and will go on to achieve.

  • if only we could all learn these lessons

  • of tenacity and endurance."

  • and then he called the name of a boy across the room.

  • The boy who had been hit by a car whilst riding his bike had rolled over the top of the car and then miraculously

  • stood up on the other side absolutely uninjured - he was fine.

  • It was a joke award.

  • Hmm

  • Behind my dark glasses I began to cry.

  • And then I panicked, because my paralysed arms couldn't pick up a tissue

  • I just had to hope that my tears would sink into my cheeks and no-one would notice.

  • Would that award mean anything to me today? No.

  • Probably not.

  • Would it have meant anyhting to me at the time? Yes. A really big deal.

  • It would have been a great motivating factor.

  • Maybe calling someone an inspiration in that instance wouldn't have been about the other people in the room.

  • Maybe I needed to be my own inspiration.

  • But on the other hand calling someone inspirational just for existing others them.

  • Again, it turns that person from an equal to a motivational secondary character in the life of the person saying it.

  • As I pointed out in my Cosmo article

  • taken in isolation it isn't too far away from the dreaded compliment of:

  • "Oh, if I were you I would just kill myself"

  • Actual thing a girl once said to me on a date. And other people. Because manners?

  • I don't know, they think it's nice?

  • The implication is that merely existing as a disabled person is the worst possible life

  • and they simply just couldn't cope with it.

  • "Oh, I couldn't imagine I wouldn't be able to go on with that"

  • makes it seems like the person saying it has an experience of pain that is more profound than the disabled person.

  • That is just my reading of it, though.

  • My thoughts, though shared by others but obviously I do not speak for all people

  • Which again, brings up my point that being labeled inspirational is a stereotype

  • that assumes that all disabled are the same

  • and yet at the same time it can also be used to create a hierarchy within the disabled community.

  • The ones who go above and beyond what "normal" humans can do are termed super humans

  • I'm thinking of the Paralympics here, quite clearly.

  • Whereas the ones who perhaps struggle with their disability or not even struggle but just aren't, you know, gods

  • are the scrounges. If you are not an inspiration, then why are you here?

  • It's a very othering concept. *laughs*

  • Side point - has anyone noticed how the term "inspired by" is only used for philosophers,

  • teachers, writers, people who we are inspired by who are above us

  • but inspirational is used for people who are beneath us who almost push us to be better.

  • I say us, I think I am one of those people *laughs*

  • That might be nonsense, but it just occured to me.

  • So yes, there are positives and there are negatives

  • and I do find myself sitting on the fence about it often.

  • I like being inspirational in that I like being able to help other people

  • by sharing stories or writing things or making videos.

  • But I don't like being inspirational purely for the sake of existing.

  • And I can't ignore that my disabilities do make my life harder.

  • Many disabled people want what they do to be judged in isolation from their disability

  • but I wrestle with that.

  • On bad days just raising my head from my bed is quite an anchievement.

  • It takes so much time and effort and I would like some recognition for that.

  • If only because it was hard and I did it

  • but not because the struggle is hoisted upon me on the first place.

  • I did not choose this body, I am not brave for being in it.

  • I think like most people I'm happy to inspire people with my strenght of character.

  • I don't want to be brave because I left the house on crutches,

  • I want the recognition of how I got that bravery in the first place.

  • If that makes sense?

  • I think it's possible to take inspiration from variety of people in variety of ways.

  • My little cousin inspires me to always be warm and open,

  • my father inspires me to challenge everything intellectually and have a great thirst for knowledge

  • and random facts.

  • And my mother inspires me to set incredibly unachievable goals and then go for them anyway

  • and always get what I want.

  • Even when if just because I can picture her face every time I have a new harebrained scheme going "why"

  • I'm so sorry mother.

  • My point is, we all have our crosses to bear, we all have hardships, we have all gone through things,