Wibbly Wobbly Thoughts

I started writing this for ASDay 2021. I got mostly done and then lost my train of thought. Picking it again for ASDay 2022.

I keep trying to come up with something to write about, and I start down a good idea, and then get distracted or the inspiration fizzles out. Sometimes I feel despair, because a lot of the topics that come up are the same topics I've written about years ago. Sure, I could write about the exact circumstances of the issue, how it affects people. Use my hard-earned degree to form some sort of argument. But I also just want to write about other things. 

I started to write an open letter to my government about how the pandemic has impacted me, specifically financially. It was going to be an anecdote to support the argument for Universal Basic Income. I was going to compare my life before the pandemic, and now, with how instead of worrying about support coming in from different areas with amounts that adjust from week to week, I can make financial decisions and be confident about being able to afford basic needs and make financial decisions about repairing or replacing items, about being able to take time off work when sick or injured. Because I'm currently on unemployment, and that pays more than ODSP and my job. 

However, I also wanted to write about corsets, and history bounding. The other year, I wrote my thesis about accessibility at autism conferences, and then I went to a costuming convention where a lot of the attendees were disabled. 'If only I had known sooner,' I thought. 'Writing about disability in costuming would be fascinating!' 

I got into corsets from a friend I met at an autism conference; they were wearing a corset and describing how it felt like a calming hug. A personalized weighted blanket. Over the years, I explored mass-produced corsets available online, and determined I needed to make my own. It would also be handy to wear to the LARP I had joined. And so, I dived into the world of historical sewing. 

Which lead me to this convention and the realization that I don't really like modern clothing. The hems, the fabrics, the fit. It has been revolutionary for me to relearn sewing and attempt to sew my own clothing. Clothes should not feel like something to tolerate, but provide comfort and ease. If I must dress myself in clothing made from bed sheets in order to do so, then so be it.

And at the same time, I want to talk about stories. About how research can be used to tell stories. How research can be used to tell stories through data. There's a tendency to respond "well duh" to some studies, and I think that is a disservice to both the autistic community and researchers. Yes, we write stories and blog about issues. But studies take our stories and combine them. By combining our stories and codifying, it says "this isn't just a few people, this is a wider issue."

And I want to talk about my thesis, a learning experience I treasure. How it sparked for me an interest in research and the possibility of further studies. How I want to connect what I've spent all these years studying to my communities, as tools to our causes and needs.

I want to talk about my new kitten, Ezra, and the joy he gives me. Especially when he's being sweet and cuddly. 

I want to talk about the sudden loss of spoons, the desire to do something but being unable to start or complete the action. The need to write something, anything, only to feel the spark fizzle out at an empty screen. The despair as idea piles upon idea, building up to an aching pressure.

I want to talk about pain. The sharp stabs and the deep aches that become constant companions. The pains that are temporary, the pains that are chronic, and the pains that very slowly heal. 

And finally, I want to talk about perseverance. Whether through hope or spite, the importance of continuing on. To do what you can, when you can, however you do it. How I'm learning to forgive myself for taking time, as I forgive others. To recognize my own limits, as I recognize the same for others. To pause and rest when I need it, and to take my time recharging. To let myself fall apart. To let myself put myself back together at my own speed. 

To let myself enjoy things. 

And, when I'm ready, to write again. 

A Small Thing

Nothing stays the same. Everything changes. 

That's the opening for one of my attempts to write something today. It's a piece on depression. I got partway through trying to describe the deepest pits of despair and darkness, and then I realized I didn't really want to talk about that. 

Even taking out politics, I think we've all had enough of that this year. Heck, enough of that for the past four years. 

So, slight confession. I don't know exactly how anniversaries work and how they're calculated. I just know that on 15 October 2010, I wrote Real Communication Shutdown, which was followed by Autistics Speaking Day and Preparing to be Loud. 

It is now 2020, and 11 years later. And I'm not sure whether the 10th anniversary was last year or this year. I'm not very good at these sorts of things. But I counted the years on a piece of paper, and according to my count, it's been eleven years. 

It definitely doesn't feel like yesterday. This year alone has felt too much like forever for it to be yesterday. But I'm reminded of both the changes and the similarities, both the good and the bad. 

There are the obvious things: I live in a different location. I dress differently, my hair has grown and I dye it a different colour. 

Family drama has come and gone and most like will come again. 

I've learned that my body is not quite as reliant as I thought it was, and the gears of capitalism is wearing it down. 

And countless other things, the painful, the joyful, the sorrow, and the wonder. 

Including, the fact that this is the year that I am finally finishing my Disability Studies degree. As I type, I am in my last elective course: creative writing. One might think I can get by with minimum effort, and then pass. But they would be wrong. There are some frustrating aspects about the course; there are a lot of readings that show great misunderstandings and misjudgment towards genre fiction. It's a widespread attitude throughout academia that makes studying creative writing typically difficult. 

However, I'm making my own challenges for the class, taking the assignments as they're given and putting my own twist to them. And the result is that I'm finding myself more encouraged to write more.

The last few months, I've been making more things, sewing, embroidering and crafting. It's been a sliver of silver lining, and I wish I could just stay home and create.

I know that there are still troubles ahead of us, and I hold onto the fact that writing gives joy. That making things makes me happy and gives me reasons to start my day. It might be a small thing, sometimes, but sometimes a small thing is all a person needs to keep going. 

And sometimes, a small thing becomes a big thing, and lasts for years. 

Here's to making things. Here's to the small things. Here's to the big things. Here's to the things that just make us happy in these dark times. Let them keep us together. 

Open Letter: Autism Services and Direct Funding

Emailed this afternoon, Feb 6, 2019, to several members of Ontario government and two staff at The Star. Honoured members of Government, members of the Press, and to Those Whom This Concerns,

Recently, the Ford government announced the decision to overhaul Autism service provision in Ontario. One of the goals in the overhaul is to address the extremely long wait list for services implemented during a crucial window in a child’s development. As often pointed out in early education and development, what happens in the first six years of a child’s life has lasting effects on the rest of their lives.

However, myself and other autistic people across Ontario are concerned and would like to take the opportunity to address those concerns.

We are concerned that the currently announced amount of direct funding will not be enough to support services for all needs and supports throughout the year. We are concerned that there will be an age discrimination on the direct funding, that this will affect late diagnosed autistics such as older children, teenagers, adults and seniors, who are also deserving of support and services in Ontario and throughout their lives, in education, employment, health care, and daily living.

We have concerns about the resources that parents have in making decisions on spending their direct funding. We want to make sure that they know of all of the options available to them, that there are services and supports that are less stressful for themselves, their families and their children that are possibly more cost efficient, suit their child’s needs, and backed by scientific research.

Parents have a right to know that ABA is under scrutiny by current autism research for its possible contribution to the high rates of mental health issues in autistic people, and that studies arguing for its efficiency do not look at the long term effects. Parents have a right to know that alternatives exist, and we are concerned that there needs to be resources and information available for them to make those decisions.

The International Society For Autism Research is having its annual meeting in Montreal this May. I know that myself, researchers, and other attendees would appreciate if autism research regarding practical supports and services would be put into direct funding policy to positively affect the lives of autistic Ontarians. I have no position of authority to invite members of government, members of the press, parents, or any other interested persons to the annual meeting, but I highly recommend doing what myself and other autistic people do; talk with researchers and pay attention to what has been discovered in relation to the narratives of autistic adults and autism research.

I encourage politicians, parents, and all involved in these policies to pay attention to autistic adults who have been working with researchers for years. We wish to create better supports for all autistic people throughout our lifespan, from babe to old age, and support all of our needs and methods of communication, whether low or high, whether speaking, signing, texting, or AAC.

Thank you for reading,

Corina Lynn Becker

Autistic

[address]

For ASDay 2017 and Ever After

I didn't think I was going to write something this year.

I have two works in progress waiting for me to finish, after all. A piece on how jokes can be harmful, especially when IEPs and disability are thrown in, and an open letter to Simon Baron-Cohen about how he's completely ignorant on neurodiversity when he tried to write about it in a recent article.

These are pieces that are so close to being completed. And like a lot of my work, I'm not sure how to conclude them. How do I tell when something is finally done? How do I wrap it up?

It's a problem I have with my writing, it's a problem I have with a lot of projects. I wonder if it's going to be a problem I'll have with ASDay. I hope one day I'll be able to say "okay, it's been a good run. We did what we set out to do. We're no longer needed," and pack it all up.

And while I think 2017 has been a bit of a slow year, for various reasons, I don't think this is the year that happens.

It may be the year I spent the night before hanging out with a friend having a mental health crisis. It may be the year I spent the evening beforehand at work on a retail shift wearing inappropriate shoes because I was in costume and totally regret it (always, ALWAYS wear appropriate work shoes, even if it doesn't go with your costume). It may be the year I only got 5 hours sleep and dashed out the door to a doctor's appointment.

It may be the year my doctor told me to stop doing everything that I love, to stop typing, to stop writing, to stop all my hobbies and restrict all my leisure pursuits. It may be the year that I promptly ignored my doctor's advice and spent over twelve hours on the internet, doing what I love.

Because ASDay is still needed. Because someone sent in a 20-page essay on neurodiversity as philosophy theory. Because we're still fighting for AAC to be considered a language in its own right. Because I can't count how many people send in self-discovery stories. Because autistic people are still demanding our rights, demanding to be heard.

And we're not going away.

So, for this ASDay, and the next one, and as many as it takes, here I am.

To Temple Grandin, an Open Letter

To Temple Grandin,

You need to stop now. Stop talking about autism, about autistic people. Stop pretending to know about people whom you don't even interact with, whom you have shown nothing but disdain for.

When you started going to autism conferences and doing the talks, it was a big thing. I'll give you that. You were part of the beginning of autistic voices demanding to be heard, to be taken seriously by professionals and researchers and parents. It feels good to be making a difference, doesn't it?

But you're no longer making a difference; now you're harming people with what you're saying. So you need to stop.

What have you said? You've said that autistic people need to "get [our] butts out of the house and get a job." You've only deigned to pay attention to "high functioning" people who not only have jobs, but "careers." This ignores the fact that for many autistic people, there are systematic and environmental barriers in place that prevents us from getting jobs, never mind leaving the house. This ignores the fact that even if autistic people had the training and skills to look for work, the economies in many countries make it increasingly difficult for disabled people of many types to look and gain employment. This ignores the huge amount of depression and PTSD present in the autistic population, which does impact whether someone can work. 

This ignores that someone's worth isn't based on whether one can work. On whether someone can talk, on what skills or talents a person has. 

In other words, Temple Grandin, you are being ableist, to other autistic people and other disabilities. You speak from a place of unchecked white privilege, without knowing about the lives or truly interacting with other autistic people, yet you try to speak for us. Your words are taken on as gospel by parents and professionals, but in truth, you know nothing about us. And you need to stop, right now. 

Signed, 
~Corina Becker 

Lindt and Autism Speaks No More

I heard through Tumblr and Twitter that Lindt doesn't support Autism $peaks anymore. So last Wednesday and Thursday, I messaged the Lindt Facebook account to confirmation.

These are the screencaps from that conversation:

The conversation went like this:

Me "Hi, I was wondering whether you support Autism Speaks or Autism Speaks Canada?
either through the sale of the bunnies or as a corporate sponsor?"

Lindt "Hi Corina, Lindt Canada does not currently support Autism Speaks."

Me "What about Lindt USA? Does it support Autism Speaks USA? Thank you for your response early"

Lindt "Hi Corina, Lindt USA is not partnering with Autism Speaks USA."

Me "Okay, thank you. Then you should know that Autism Speaks USA still list Lindt as a corporate sponsor. Lindt is not a corporate sponsor?"

Lindt "Hi Corina, Thank you very much for letting us know that our logo is still on their site. We've advised our USA team to get in touch to have our logo removed since they are not a corporate sponsor.

Me "okay, thank you and you're welcome"

An October Day

A piece of creative non-fiction, as well as some photos, as a submission for ASDay. 


There are dishes piling up in the sink, a folding crate full of recycling by the door. In my room, a laundry basket overflows as it waits for me to take it to my parents for washing. I've just taken down a large garbage bag to be thrown out on my way out the door. I spent $20 of my last $35 on cat food; payday is another week away, but I think I can get by on instant noodles and frozen veggies. There's some meat in the freezer, but I might have to spend my last ten dollars to buy meat for a few days.

I was going to do chores yesterday, was going to paint yesterday, work on an assignment. However, I woke up with rain outside my window and pain pounding at my temples. A can of cola and a fist of painkillers later, the pain receded, but I was left woozy and scatterbrained. My main focus last night was to get actual food in me, which I more or less succeeded.

Right now, it's still raining, but my head isn't aching. Sleepily, I had contacted my workplace to double check on my schedule for tonight, only to be told I'm off for the weekend.

I hear children racing down the hall. I only hear my neighbours when I'm in the hall, or when they drop something overhead, or if the windows are open.  Or if one of their dogs is barking and barking and barking. I generally don't worry about the sounds I make, only when it's 3 AM and I wonder about the volume on my TV. It's peacefully quiet right now. No sounds above, below or from the sides, only the drizzle from window. That's not even a lot, since it's too cold to have it open more than a crack.

What I do hear is the elevator running, the hum of my refrigerator, the kettle on my stove. I pour myself a cup of tea and let it seep, wearily eyeing my cupboards. It's after 4 PM, and I've gotten out of bed some hours ago, but haven't eaten anything yet. I've had a shower, and haven't eaten yet.  Putting on gloves, I wash a bowl and peel a potato. Usually I just scrub the potato, but the skin makes it crispy. As the potato cooks in the microwave, I stir sugar and milk into my tea.

Maybe later tonight, I'll have some of the fish in my freezer, make a bit of pasta, microwave the leftover veggies in my fridge. But right now, I'm having a potato with a bit of butter and a cup of tea. Last night, in bed, I drafted out some of what I wanted to write. It was too late to pick up my tablet or the pad of paper on my night-stand; I was curled up with my cat, huddled together as I try to cover her with my blanket against the cold. I'm still hesitant to turn on the heater, even though it's almost November. So I lay there and dreamt up words for when I woke.

And now, with warmth in my belly and in my hands, I sit down to write.

~~~