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,
whatever they may be,
and if we can use those experiences to help other people, then that's great.
And equally we can take inspiration from another person's story but only as long we have the time to hear it first.
not just if we see someone in a wheelchair on a buss.
So, I hope you have enjoyed this video whether you have agreed or disagreed or you're still unsure.
Let me know in the comments down below.
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I will see you next time
*kiss sound*
*upbeat end music*