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Creating a more welcoming theatre 

I have always loved to perform, to be on stage, to be acting, dancing, speaking.  I often laughed with people who were impressed with my stage presence that I feel more comfortable the larger the crowd gets. Speaking to one person is terrifying, so is a few.  But the more that are added, the more they melt in the background and I can be less hyper focused on them, less concerned about how they are analyzing me, about how I don’t understand how to interact. Fear melts away and I try to trust myself and be confident in what I am doing.

Sometimes it was more successful than others.  I was still too shy, too awkward, too constantly misunderstanding things to ever truly flourish. My confidence was mostly non-existent for most of my life.  I was the kid who got written out of their grade 10 drama performance and played cards in the tech booth for the last month of the semester, the kid who skipped the gr.11 musical theatre cast party because I would rather hang out with my cousin, the kid who was 5 years older than most kids in their dance class.

I’m not the kid you would have expected to grow up and end up in Theatre. Or I am. I guess it depends. But I’m not the one my class would have voted as 

“Most likely to end up in theatre after graduation.”

It actually gets even better.

In grade 10 I was away for some reason on the day our class decided roles for our final performance.  It was decided that I would find it too uncomfortable and I was chosen to be lights. It turns out, during those drama classes I spent playing cards in the tech booth, I actually picked up some skills that are useful to what I do know.  And what do I do?

Well there will be more on that,

But I help to make Theatre more accessible, more inclusive, more welcoming! Younger me would not believe this!

Right now I’m part of a very cool organization called Inside Out Theatre and they have an amazing program, The good host program. Working with consultants, like myself, who are from the communities we want to include, we collaborate with local theatre companies to provide a wide variety of shows accessible to people who might not get to experience the theatre otherwise!

Me, a white wheelchair user in a green manual chair with the cast of Madagascar the musical after our first relaxed performance
With the cast of Madagascar the Musical at Storybook theatre after a relaxed performance

As the relaxed performance consultant, I get to watch the regular performances of shows and use my skills of being able to write in the dark to make notes and suggestions on how to “relax” the performance.

Every relaxed performance is different, but the idea is to create an environment that is welcoming to a wider group of people.

There are lots of people that could benefit from a relaxed performance, so these are just some examples,

  • People with anxiety, who maybe have never been to the theatre before
  • Someone with PTSD, who might startle at loud noises and effects,
  • People with chronic illnesses, health conditions, or disabilities that could make them need to leave the theatre sometimes to use the bathroom, take medications, or other things
  • Autistic people, others with sensory sensitivities, or ADHD
  • People with migraines, photosensitiity, epilepsy, or seizure disorders 

And that’s just a few examples!

A relaxed performance is not a different show, it’s a show where small differences are made so that many more people are able to enjoy it!

It’s an amazing experience for me because I get to interact with so many different people,

From those who have never experienced theatre before,

To those in the industry.

And somehow, somehow the shy awkward kid that no one new what to do with found a place in all of this.

And together, there’s a lot of us working to help more people belong here too.

Yes, I am disabled 

The problem isn’t that I’m disabled, the problem is that you can’t associate anything positive with disability.

So in order to compliment me, to percieve me as a “good” person, you need to see me as a person in spite of my disability, ignoring the fact that disability in itself is not negative.

There is nothing wrong with disability, but you can only see positive things in me as a disabled person if you separate me from my disability.

And that’s a problem.

Disability is not a “dirty word.”

The way we treat disabled people is the problem.

The way we dehumanize and segregate an entire group of people instead of trying to understand and accommodate them is a problem.

Stop trying to find a way to describe me that makes you feel better, and use that energy to learn about me and what I need.

This is what current “autistic” representation on TV makes me think

Less than a year ago I was having a conversation with someone when I was asked “When did you realize how smart you are?”
I was taken aback, as was the other person when I answered that it had been within the past year.
As we continued our conversation I had to go back and ask for clarification- 
I’m used to being called narcissistic, egotistical, to being misunderstood. I’m used to being unable to explain my thoughts well enough. Being the strange one that everyone writes off as rude, difficult, ridiculous and full of nonsense. I’m so used to being seen in those ways that I first assumed that’s what was meant.
That I thought myself smarter than those around me, that I had an attitude problem, that I kept asserting myself as “smart”.
And that is complicated. 
Because after a lifetime of being written off, combined with a lifetime of trauma, mental illness, and so many other things,
Yes, I do at times resort to nearly shouting “oh for crying out loud I actually know what I am talking out. Please listen to me. Please listen to me. Please give my strange brain and strange self a chance”
This might be the time when I mention that I am Autistic.
I am Autistic and among many other things, continue to deal with post-concussion syndrome.  
I am something people forgets that exists, someone who is considered extremely “smart” by conventional standards, and yet has a cognitive disability.
I can write, as I am right now, in a way that I can not comprehend and read. 
It is infuriating.
But it is the most frustrating because people will pick and choose from this to either validate or invalidate myself and others. They will point to one thing I can or cannot do and use it to overwrite all else. 
I do not want to be seen as smart.
Or intelligent.
Or anything else related to things because it is usually someone’s way of intentionally or unintentionally erasing my experience.
The experience of someone unable to finish University.
Someone who struggles to find employment.
Someone who is frequently passed over for opportunities that I am qualified for.
Someone people frequently dismiss.
You do not get to pick what you like from me, to use my thoughts and ideas while people like me are tossed aside as disposable labour at best.
It is difficult because when you are constantly overlooked, it is so easy to want to be noticed, no matter the cost. 
I frequently do not know how to express myself when I know things, when I have ideas and thoughts that are bringing unique, important perspectives. I don’t know what else to do sometimes than to be the tactless young person at the table yelling “no! No that’s not it! Please listen to me I think I know this”
I’m the kid in school that shouted all the answers, sometimes loudly disagreed with the teacher, and on more than one occasion could not finish the exam because I disagreed with it.
And then around a year ago someone I respect,
Well they were one of the first to say it out loud.
And so I had to bring our conversation to a halt to ask for a clarification.
What do you mean? How long have I known how smart I am?
Since then I realized that there’s a different word that might apply to someone like me:
“Autistic Savant”
Autistic Savant: known in society as the “useful Autistics”. The ones whose Autism is justified by their usually exploitable genius.  
Something that is somehow justified, because we have vilified disability, Autism and Autistics to the point that our very existence becomes what needs to be justified, instead of how we are mistreated and misrepresented by society.
There is this idea that being a savant somehow “makes up” for the tragedy of being Autistic.
Being autistic is not a tragedy. Being a savant is not some consolation prize I was given. The unique way I see things, the way that I analyze and process, is because I am Autistic. If I was not Autistic, I could not do what I do.
The media will portray that as a tragedy, feeding you lies about kids locked in their minds and trying to convince you that Autistics must be divided: high and low functioning, most and least disruptive, exploitable, expensive.
I never finished University. There’s a longer story to that but the end result is that I have no degree. I’m not a Prodigy that amazed all my peers and mentors, I’m more the disappointment that frustrated everyone.
I can’t fill out a form without help which is a significant barrier to employment, education, assistance, and most opportunities. I struggle to express myself in ways that others understand. I don’t understand how to do things others find simple.
There are probably more people that consider me too difficult to work with, more trouble than I’m worth, than people who are willing to accommodate my disabilities. I’m much more likely to be left alone mumbling in frustration at how no one ever paid attention to me when I was talking about these things years ago.
And on the occasion when I am recognized, it is often to put down another Autistic person.
I will not be used in that way.
I will not continue to be misrepresented by the media. 
Autistics are so many things. 

 Stop relying on the trope of the Autistic Savant.
Stop using Autistics to put down other Autistics.
And stop representing us as rude, white boys/men who are obsessed with trains and violating people’s boundaries. 

Who do we Miss when we Prioritize People with Formal Education and Experience over those with Lived Experience?

I am too involved with things to do important things like work or take care of myself most of the time.  Or at least I was.  I have had to make some drastic changes recently for a few different reasons.  Frustration was part of it, but the main part was that it was not sustainable.  And by not sustainable, I mean I would not have been able to continue with what I was doing and continue being alive.

Still, I didn’t make these changes easily, or always voluntarily.  

I started this post over a year ago, and I still find myself overwhelmed every time this topic comes up.

And it does, consistently, in little ways that are often overlooked.  In little ways that I sometimes find easy to brush off but might also find impossible to ignore. 

The inconsistency of my reactions, the unpredictability of it gets added to the long list of why I am difficult to work with, the wrong candidate, not even considered in the first place.

Completely misunderstood.

There are things that follow me around that become impossible to explain for some of the same reasons they happen- 

My disabilities.

My strangeness, my disabledness, they are both what make me uniquely able to do what I do.

However I frequently find myself separated, even from other disabled people at times.

My disabilities make me too hard to accommodate, too difficult to understand, too much.

I often find organizations or events closed off to me, directly or indirectly.

I find people who have already decided who in the disabled community is allowed to have a voice.  That a focus on “disabled youth” means a focus on “disabled students, new grads, and those working in a related field.” That I don’t count because I was unable to complete university, because I am unemployed, because I am too disabled for forms.  My experience and expertise does not count because disability studies is not built for disabled people, especially not multiply disabled people with cognitive disabilities.

It is far too easy to forget that the missing link we are always asking about is usually what we are overlooking.

We are overlooking people with informal education, informal training, jobs that society does not consider work because it is unpaid.  We are overlooking people because they confuse us, because it takes work to understand them and why they do what they do. And instead of connecting with them, learning from them, and most importantly, employing them, we Continue to marginalize the most marginalized. 

And we remain confused as the gaps widen, and as things do not improve.

Walking “a little” is not the same as Walking

Over 3 years ago, a time that feels like a different lifetime, a different world away, I wrote a post somewhere on the internet that always stuck with me.  When I started writing this blog post, it was because twitter was informing me that it was national walking day, which a number of awesome people were changing to national wheeling day.

I found the short piece that I had wrote and started thinking about that time.  I wrote this when I was struggling to get around in my walker, when I still walked places unassisted for short distances.  When my body had taken too much and if I wasn’t at work or school, I was in bed.  It became so bad that I sometimes was skipping basic necessities, like food for instance, because the kitchen was not in my bed.  It was easier to collapse at the end of the day and wake up at the start of a new one than find energy I didn’t have for tasks that seemed impossible.

I moved out to an apartment I shared with a friend that was significantly less spread out, where I didn’t have to worry about stairs.

I hadn’t yet discovered the freedom of wheelchair sports, of how distinct tired is from fatigue when you push yourself to the limit, feel like your arms are going to fall off,

And even though you sink into bed so exhausted you can barely make the transfer, even though you wake up hurting and exhausted,

You have a bigger smile on your face than you’ve had for in a long time.

Because somehow you know you just need a warm shower and a nap and ok maybe a day of recovery,

but you can do that again.

That’s a world away from the mind-numbing fatigue that exhausts you to the core, when you can even eat because there’s no energy, where you could sleep for years and it would make no difference.

In November of 2013 I had no idea that my body could ever be capable of the things it has done because I hadn’t been given the right tools, the right instructions.

I have traveled nationally and internationally, played for my province at the wheelchair rugby national championships twice.  I even wheeled a 3k.

What I wish I knew then, at what I will constantly tell everyone now, is that walking “a little” is not the same as “walking”.

what I mean by this is that being able to walk a little, being able to walk with consequences, that’s not the same as being able to walk (the end)

When people are denied wheelchairs because they can walk, an important thing is missed.

They can’t walk

yes, they can physically walk.  That’s not what I mean.

What I mean is,

Can they walk to the store and back?  Can they do so safely?  Can they do so and still have energy left for the day?  For the week?

Can they walk at home?  yes?  Ok, but does doing so leave them with enough energy to leave?  To go to school, work, out with friends, on errands?  Is it safe?

Can they walk long enough to go places, enjoy things, to do what they could do if they had mobility aids?

Yes, being able to walk, even a little, is different than not being able to walk at all.

But it’s not the same as being able to walk, without consequences, without fear of safety, for “long distances”

So when you deny someone mobility aids because they can still walk, because you want them to still walk, you’re missing something.

If they’re asking for mobility aids, their mobility is already limited.  They’re already not walking as often because they can’t.  Mobility aids won’t change that.  But they can actually improve mobility, and allow for more opportunities to go out and be active.

Also check out this cool thing I found while being distracted on the internet the other day.

 

Trying to “social media” while cognitively disabled

The first time I tried to use twitter I used it wrong.  Three years later I’m still not entirely sure how it works, or what I’m supposed to do or exactly how this specific sub-culture works.

It’s beyond frustrating.

When we discuss ableism, or how ableism is and isn’t addressed in other spaces, I find that so often myself and others like me are left out of the conversation.

There’s this implied idea that if you can’t find the discussion, if you don’t understand the content or how the content is presented.  If it is overwhelming, and otherwise inaccessible,

Well we don’t  consider it inaccessible.

Everyone else is fine, right?

Why consider the needs of those who are not there, or those who have to use all there energy for this one “simple” task? (sarcasm)

In the end, I become the most frustrated with myself.  I’m disappointed that I can’t navigate things the way I wish, annoyed that I don’t understand, and lacking the energy and time to put in the many hours I would need to for what others consider small tasks.

I have let myself disappear.

I wish I had more to say or something to contradict, but that’s the truth.

It has been too hard, to exhausting, to painful.

And I have found  it so much easier to just disappear.

 

This is not what I want.  I’m not sure how or when but I will be around trying to fix things up.  I will be trying to fix something up that works for me.

I still exist.

 

If you value Autistics, Return our Voices

(Note: I started this on Monday, but then I was too exhausted to finish it, so I’m posting it a day late)

Today is Autistic Speaking Day.

It’s Autistic Speaking day, and my friend and colleague is in Ottawa at a National Youth Forum discussing what an accessible Canada would look like.

It’s Autistic Speaking day and just yesterday I rolled into a theatre, saw my name on a sign as the guest speaker, and reflected on the collaboration we had we done with the theater company and the amazing work that has been done this past year.

I’ve spoken at the United Nations in Geneva, made UN submissions as an autistic person representing autistics, been involved in National Campaigns,

and you know what?

this morning my phone broke even more, and I cried.

I pressed the non-responsive buttons repeatedly as if they some how held the answers I desperately needed.

I stared at that broken phone in disbelief and all the exhaustion came rushing back.

I’m so tired.

Last night was amazing.  It was amazing and I was preparing to write a very different post for today.  I still want to write that post.

But this one, this is something I have been putting off for so long.

A few weeks ago when  I spoke at the consultation for the Canada Accessibility Act, I first spoke on the barriers I was facing as I was working to be involved in advocacy (and other things).  How having a disability, especially multiple disabilities, impacts how you are able to deal with your disability.  How being poor, not living in acccessible housing, and not having access to necessary medical supplies has left me with constant health problems in addition to what I normally deal with.  How I struggle to fill out forms so much that it is often easier for me to simply go without, how this means I miss out on constant opportunities.  Everything I accomplish takes so much out of me that I return exhausted, with less energy complete necessary functions others consider simple.  With increased damage to my body.

I have failed disability studies courses 5 separate times.

That’s a different post, but it’s important because I so often see amazing disabled people pushed out of the field, their experiences enriching their non-disabled classmates, who go on to graduate and find jobs in the field,

while our expertise is overlooked and miscredited, and if we are lucky enough to get paid (we usually are not), we are frequently underpaid.  Our involvement is not considered serious, or work, or something worth paying for.

This needs to change.

I love what I do, and yes, the stress, the tears, all of it is worth it.

But here is the problem.

I don’t constantly cry about money just because it would be easier for me and others,

I do so because I have been barely able to hang on for several months now.

I have some of the most amazing people in my life, and their support, their love, hope, optimism, that allows me to keep mine.  Because my life is filled with such amazing people, I’ve spent the past few months trying to drag myself through this, knowing that there can be something in the future.

With all the talk that everyone does about Autism, how much money raised goes to support Autistics?  And actually support them, not just fund questionable therapies.  How much money goes to us, the Autistics working so hard for this.  We don’t do it for praise, we often get dragged through the mud by so many people for this work.  We put our reputations, our sanity, ourselves, on the line for this because we know they never  mattered in the first place.

And all I want is for someone else to not have to make the choices I’ve had to make.  To not have to try to balance a non-existent budget but then find out too late that when you don’t eat because you ran out of food, it’s impossible to work.

I don’t want people having to triage emergencies, because everything is urgent.

I don’t want people losing themselves because it’s hard when you don’t have time to process your own trauma and tragedy.  To deal with it.

It’s terrifying to make decisions that will be better for you and your community in the long run but right now, oh right now they hurt.  They hurt so much.  And yes, yes they are worth it.

But that doesn’t make them hurt less.

I do not regret my decisions.

But sometimes I have to take a moment and just acknowledge the weight of them.  It’s how I stop it from crushing me.

So I am writing this because the last year has been amazing but also terrifying.  I wouldn’t have made it without having such an amazing group of awesome supportive people in my life.

But I can’t keep running on empty.

I think I can because I’m so used to it.  But I can’t.

And this is relevant to you, to others, because I have a lot to give, a lot that I can do.  It’s not the same situation here in Canada.  I’ve tried to replace me before, but we’re not yet there.  (Trust me, there was a whole month long thing where I cried a lot and was willing to put myself in a very questionable position because we couldn’t find a replacement me for something yet).

So what I’m asking for, is help.

especially to non-Autistic people, stop donating to large non-Autistic orgs and consider donating to self advocates.

Stop stealing our voices

Give them back.

If you are able, (and I know, times are very hard right now, for us all), I’m setting up some fundraisers,

No obligation, No pressure, but if you are interested,

I have a YouCaring page, and also a Patreon