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.


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

That time I spoke at the UN

Several months ago I had an incredible opportunity to speak at a United Nations Committee on the Rights of Persons with Disabilities (UNCRDP) side event in Geneva, Switzerland, on the topic of restraint and seclusion. Since then, my life has not slowed down, and sometimes that trip feels another lifetime ago, not this past April.
Regardless of the exact issue I’m dealing with, there are so many things that have me thinking of my speech lately.
I think about the rarity of having Autistic people being the ones to discuss these issues. Of how it felt to return to the UN the next day and realize that people like me just don’t get these opportunities, we don’t get this far. It was such a strange feeling.
I remember the amazing joy I felt of seeing a young Autistic there, on holiday in Geneva, visiting the UN. That memory makes me keep working when it feels too tough sometimes, because I want young Autistics to have a future.
And so, several months late, I give you my speech.
Thank you for the opportunity to speak here, as an Autistic Advocate, during the occasion of Autism Awareness day.

This past weekend, during the many different campaigns and events associated with Autism Awareness day, Autistics from around the world, including Canada, expressed their desire to be viewed as people, not problems, burdens, a disease, or an epidemic.

Today, during the rest of this month, and every day, I sincerely ask you to remember that.

When we are thought of as problems, that is when it changes from people working with us, to instead focusing on “fixing” or normalizing us.

Rather than de-escalating stressful or difficult situations autistic children face in school, these situations are often further escalated. Instead of working with students to develop coping methods for when they are overwhelmed, normalizing therapies such as ABA take away students current coping strategies, do not allow for the creation of new, autistic friendly coping methods, and frequently leave students traumatized.

Instead of assisting these students, this situation is worsened by the usage of restraint and seclusion.

As an elementary school student, I was aware of my school’s time out room. It was a small windowless room, with the handle on the outside at normal height, while the inside handle was at the top of the door, so only teachers could reach it, not students. The door locked automatically when it closed.

The existence and use of this room was not a secret, just as the use of restraint and seclusion today is not a secret. It was however something we were discouraged from talking about, from asking too many questions. We would be reassured that this was something for “other students”. This continues to be a common attitude in Canada, that while as Canadians we might have suspicions, but it is easier to believe something so horrible does not happen, not here. This is made more challenging as documenting incidents is not legally required, and information on their usage can be hard to obtain, even for families, who are often not informed or aware.

When families do find out, it is rarely from the school, as was documented by a 2013 report from British Columbia. Most found out about the restraint or seclusion of their child from somewhere else. Nearly half of all respondents reported physical injury or obvious signs of pain occurred during the restraint. Also to be considered is that often signs of pain in autistics are not easily recognized by non-Autistics. 79% of respondents reported emotional trauma as a direct result of seclusion. The presence of emotional and psychological trauma is also notable as the negative changes on behaviour could then be misinterpreted and used as justification for more restraint and seclusion, instead of stopping the practice and seeking appropriate care for the child.

Currently, restraints and seclusion are still used in schools in Canada. In Toronto, there are section 23 schools with classrooms where students can be handcuffed to their desks. Many training programs still teach the use of restraints. While they are taught with the intention of being used in emergency situations, there is no evidence that this is being followed, and no clarification as to what is meant by an emergency.

We can not create harmful environments, and then use that as justification for the usage of restraint and seclusion. We cannot use the behaviours demonstrated by traumatized individuals to then continue to justify the usage of restraint and seclusion. We should not be justifying the usage of restraint and seclusion.