Shocker: I'm still ill

I know, no one saw this coming (!)

So I'm making a video about a topic that is a week old. Rather than the video I was

going to make because-

[cough]

-ill.

Subscribe for hopefully less gross coughing!

[ding]

So, actress Selma Blair attended the Oscars this year-

-it's 2019 if you're watching this in the future-

-for the first time since publicly announcing her MS diagnosis and she was looking VERY

stylish with her cane. Cue many, many articles about how brave and inspirational she is…

[hmm]

We've talked about the 'inspirational' issue here before and can we just say, if

we're talking about disability porn I would much rather see this than the video Now This

news posted on Twitter about a little girl with no eyes having a traumatic hospital experience

and singing to self-soothe herself.

Sure, because that 4 year old DEFINITELY consented to having her vulnerable moment filmed and

used to inspire abled people to 'keep going' or 'feel better about themselves' or some

such tosh!

I don't know

Weirdly, pretty sure all people with disabilities deserve respect and dignity… including children.

And no, their parent's consent is not theirs.

Great job (!)

[cough]

Gosh, I'm salty when ill.

Don't worry though, able bodied people, I'm not here to be rude to you. Although,

if you feel like showing just how much you like disabled people… you should subscribe

to me.

Along with the many, many articles about Selma Blair it felt to me as if there were an equal

number of disability activists online who insisted that 'brave' was NOT the right

word to use, that we shouldn't call disabled people brave or inspirational for just living their lives

and going outside with their aids…

[drink]

But!

- and I'm so sorry, I love you, my people I'm not coming for you

I think we're doing ourselves a disservice. To say that it isn't 'brave' to go outside

with aids plays down just how scary and difficult it is! Leaving the house for the first time

with a mobility aid, even if you're just going to the corner shop, is terrifying. Let's

be honest, it is. It's the big unknown. It's really, really, scary and you have

to build up all of your courage to do so. You have to be brave.

[pats chest]

Even if once you're actually out there it's fabulous and you're living your best life

and you're thinking

- “oh my god, why didn't I get a wheelchair before? This is fantastic!”

Even if that!

The point is, before you leave the house, you just don't know!

Every time I go to a new place with my crutches or my wheelchair or see a new person I still

have a bit of fear within me and it's been ten years since I started using mobility aids!

- actually, scratch that, I had to hobble around on a zimmer frame when I was 15. It

was genuinely my grandmother's zimmer frame. Not even a cool one. I still made it work

I find my crutches in particular make me feel that way because I know I'll have to fend

off the same “What did you do?” question from every single new person I see.

And that… I mean… I know they're just trying to be nice. But it does chip away at

me inside when twenty people in one day say “what did you do to yourself?” and I have

to reply with “oh, nothing, I have a genetic disability, I just have to use crutches sometimes”

and then if they've ever seen me before they have to bring up that the last time they

saw me I wasn't using crutches and then we're just going in circles and then

- wait, maybe I just hate it because it's boring?

The next time someone asks I'm just going to say a crocodile bit me and leave them to

work out the specifics. It requires a lot of bravery and to not be in a place where

you're already feeling upset so that their questions don't drag you ever deeper!

And that's just going to the corner shop! Never mind The Oscars!!!!

I imagine attending the Academy Awards is pretty nervewracking- for one thing absolutely

every magazine and newspaper in the world is going to mention it if you trip over your

dress. And they will comment on that dress to high heavens: are you on the best dressed

or the worst dressed list? Do your shoes match? Is your hair perfect? Is your makeup flawless?

Did you accidentally spend too long looking at your very attractive costar and now everyone

will report on the fact you're definitely cheating? Did you frown at just the wrong

moment and now someone is going to make a gif about your hatred for small children?

You just don't know!

So that seems pretty scary. Feels like something that would require a lot of bravery.

Just saying.

Add on the 'first time in public with a mobility aid'.

But then on top of that you've got 'wow, the world now knows I have a disability. They're

going to be scrutinising my every cane aided move'. Because they really, really are.

No one is going to comment on Marlee Matlin still being deaf because… she's still

deaf. Not groundbreaking news.

Selma Blair's condition HAS changed and will continue to change. That can fill screen

time and sell magazines. Commentators feel they have a right to zoom in close on her

walk and see just how her legs are moving… and then talk about how they

will be moving in the future

I mean, fine. I'm quite fine with my identity as a disabled person

- I'd wear it on a t shirt if I wore t shirts

- I do have other t shirts…

Merch!

But I would be pretty terrified in that situation. I had to hold down the tears during my PIP

examination when asked to walk from one side of the room to the other because it's TERRIFYING

to be scrutinised like that- particularly on something negative rather than positive.

Like an exam, or something

So yes, she was brave.

We have to be brave. We do. And it's okay to say that.

It's not okay to take 'inspiration' from pain but I think it is okay to take inspiration

from courage. And clearly Selma Blair has that.

(she's cool)

[voice breaking ]When it comes to putting that into practice

and tips for going out with your own mobility

[pats chest] for the first time

[coughs]

Sorry

I can't cough properly because my intercostal muscle is wasted away a little bit

So I just have to smack myself repeatedly

To move gunk around my chest. Do you still think I'm glamorous?

Look, going outside with your own mobility aids for the firs time just know

it won't be as awful as you think it will.

However, some new problems you hadn't even thought to worry about will occur.

- You never realise how bumpy pavements are until you're on four wheels.

And the things that are genuinely terrible… might have a happy ending!

Like...

- That sounded much more mysterious than I meant it to. But, come on, it's me, I might

have a bug today but obviously I still have to leave you with a happy ending! I wouldn't

be me if I didn't!

So

For example: I lost most of my friends when I got ill as a teenager. Felt awful at the

time but… only the great ones were left AND every new friend I made knew about my

illness from the start so there was no way I could 'let them down' by not being well

enough to do something! And now I have only the hand-picked, best of the best people!

My people are cool beans.

You're cool beans.

If you've enjoyed this video please share it with a friend and I encourage you to subscribe!

[pats chest]

Also be you, be brave, be beautiful and remember you're not alone.

I shall see you on Friday for our next video.

[kiss]