All opinions and views stated on this site belong solely to Corina Lynn Becker, and do not represent or reflects the views and opinions of any organizations, unless otherwise specified.

Friday, October 14, 2016

Words are Words

To Autism Speaks,

I've noticed you've made some words changes on your mission statement lately. You've replaced "cure" with "solutions" and included "acceptance".  Some people are calling this a big shift for your organization, myself and many other autistic people don't think so.

While I have no doubt that you aim to stop the autistic people boycotting you and your sponsors, this is not the only change that needs to happen. For us to accept that you truly are changing, there needs to be more than just words.  There needs to be actions as well.

There needs to be systematic changes to how your organization is structured, how it is run, in the decisions it makes, in how it spends its money.

In short, these are just words; what do your actions say?

How I can believe that you're making changes, when you still support ABA as a treatment? When you support research looking into autism and immune systems? When your organization still doesn't have autistic people in decision making positions? When you've pretty much not made any other changes?  When you haven't apologized for the way you've demonized us, treat us as tragedies, cite inaccurate statistics about us? When I still see first-person language used, I can still see medicalization in your information about us, despite so many of us demanding that you do otherwise? When you otherwise ignore autistic people and fail in so many ways to support us?

You want to change? Show us you can actually change.  Until then, we're not falling for your superficial gloss over, your charade.  You're not actually supporting us, you're not actually listening to us, and until there is fundamental changes, you never will.

Tuesday, June 28, 2016

Toronto Star Interview on ABA/IBI

Back in April, I was approached by a colleague of mine on Twitter about being interviewed by a reporter for the Toronto Star.  The story was about the recent changes to Ontario funding to ABA/IBI. If you aren't aware, Ontario just stopped direct funding for ABA/IBI for over the age of 5 years old, with something of a hazy declaration for more funding to other therapies and supports.

Which, pro-ABA/IBI people don't like, cause the parents have been told that this is the only thing that works, and the professionals, well, they have an industry, even if they mean well, it's an industry that causes harm.

Anyways, the reporter of the article was looking for autistic points of view, and found me.  I prefer email interviews, which has upsides and downsides. Downside, no nice sound-clips to put on the radio.  Upside, despite only having a couple of my sentences actually used in the article, I have the entire email interview to post.

I understand that the reporter may not have had complete control of the editing process; pictures and stories of children sure are more appealing than those of a 31-year old autistic woman, after all.  But I like being fully represented, signed no documents to keep the interview quiet, and so I retain my rights to publicize my side of the interview.

So.  Here is the article that was published by the Toronto Star. 

And here is the complete interview that I gave them:

 You wrote that autistic narratives and issues are being completely overlooked in the  discussion. Can you elaborate on what is being left out that most concerns you?

1) In Canada, there has been a silencing of autistic narratives.  It’s subtle, but it’s there.  It can be seen with how there are barely any services for autistic adults, for autistic women. It can be felt with our absence in discussions about our lives, our past, present, and future. But autistic people notice it acutely, as this absence affects our lives, in the supports we receive, in how organizations and support staff treat us.  And the only real cure for this is for us to a part of those discussions, part of the decisions made by support organizations and provincial committees, to have our voices and narratives be included in all the ways that affect our lives.  To put it simply, I am a Canadian citizen, myself and other autistic people want to be part of the process in shaping our futures in our nation.

Do you have an opinion about ABA principles or IBI, and the belief expressed by many parents that their children's futures depend on intensive behavioural intervention? 
2) There are two problems with ABA and IBI; that it is the best chance for an autistic person’s future, despite a lack of scientific and ethically sound evidence, and that ABA/IBI principles are based on wrong assumptions regarding behaviour and autistic people. ABA/IBI is based on behaviourism, which states that if you change a person’s outward behaviour, you change how a person thinks.  It was this same premise that created gay conversion therapy, also by the creator of ABA/IBI, Ivar Lovaas. We no longer think of autism as a mental illness, knowing that it is neurological wiring, how our brains work, but the premise of behavourism still remains in ABA/IBI.  Thus, ABA/IBI doesn’t really teach life skills, or offers the best hope for an autistic person’s future, but teaches that our behaviour, our way of thinking and acting, is wrong and must be eliminated, often with a lot of traumatic stress. The accounts of autistic survivors account for a large percent of PTSD caused by ABA/IBI therapy throughout their lives, and the fact that these narratives are ignored does a huge injustice for the survivors, present autistic children, and future autistic people.
But autistic children are given poor prognosis, with claims that ABA/IBI is the only chance they have, when, quite frankly, this just isn’t true. So the decision about ABA/IBI in Ontario has mixed results; a decrease in focus on ABA/IBI, and some encouragement to look into other supports and approaches for autistic people.
What are your thoughts on what the provincial government's priority should be when it comes to meeting the needs of children with autism and their families? Can you talk about your own experiences -- what supports you think were most important as a child, and what would have helped that you didn't receive?

3) (tying in a little from above) What the provincial government’s priority, and all service providers, need to do is look into services beyond ABA/IBI.  It does not help that a lot of current research is into what causes autism, and few little is researching what helps us throughout our lives.  Listening to what autistic adults say about what services we need as adults is one of the steps to providing supports for autistic teens, children, and elders.  I would like to see more supports for non-verbal communication, in conjunction with mental health and emergency services, as well as dealing with issues about racism, violence against women, and poverty, as a start. Ideally, the supports we receive as children should transition with us into adolescence, adulthood, and into old age. Yet, there are hardly if any services for adults, and they do not support the full range of abilities and impairments that autistic people have.

Do you have suggestions on how to better include the voices of Ontario people with autism on this particular topic and in media stories? When we're talking about the specifics of IBI this can be challenging, as older teens and young adults who have experienced the therapy aren't always able to recall the experience or express how it affected them
4) When talking about autism, parents and professionals are usually the ones taking the stage right now. However, I think there is a huge disservice by not including the voices of autistic people, in government decisions.  Parents, professionals, and other caregivers want what’s best for their children, whether age they might be, but it is autistic adults who can say “this was harmful for me, these other supports are more appropriate” or “making these changes to a classroom would have helped me”, because we’re the ones with direct experience.  It just makes sense to ask willing autistic people for advice on what needs to change in policy and practices. And for this to happen, people also need to be open to various styles in which someone’s narrative is expressed, not so much dependency on speaking, but valuing other methods of communication. 


Saturday, April 2, 2016

Today We Fight

Taking a look at my archives , I've been blogging for quite a while.  I started this blog in what, 2009? And I know that I had been lurking around the autism web since 2005.  I remember having conversations with people about whether or not to blog under an alias or a real name.  The short form is that while an alias provides more privacy, a real name grants more authenticity and authority.

Which is nonsense. This, and the practice of having to write up disclaimers saying, basically, "this is just our own individual opinions" is utter nonsense.  As if what we have to say, as individuals, has to be pointed out.  For any majority group, this would be assumed, with the language we use, with the fact that it's not an organization's official blog, any of that.  It is an attack on minority groups, on protesting activism groups, to demand that autistic people disclaim own words.  It is telling us that we are not like their children, we couldn't possibly relate to their children, so even our opinions can be ignored because they just represent us. 

It is a subtle attack of violence and oppression.  It is a pin-prick compared to the slaps and stabs that it foreshadows, cummulating in the mass acceptances that our lives are not worth living, that we cannot have a say in even if we live and whether we are better off dead. 

I have been doing this blogging thing for a while.  I have seen a lot of the same stuff come by, over and over. It can be wearing, trying to respond to it all, as if it were fresh and new.  Saying the same things, again and again.  

We have made some progress. I believe we have.  It has not been perfect progress, it is not enough.  There just has been some progress made. 

It doesn't feel like much, sometimes. Especially when March 1st comes around and we read off the ever growing lists of our dead, murdered.  Our progress was not enough to save them.  Each of their deaths is a slap, a reminder that it could have been any of us. 

But they haven't killed us yet.  So we remembered our dead, so that one day, there will be no more names to add to the list.  Today, during April and beyond, we fight like hell for the living. 

We fight for our right to represent ourselves, to make decisions in our own lives.
We fight for our right to affordable housing, for the right and access to jobs that make more than sub-minimal wage, to make a living and pay for our own rent, our bills, without living in poverty.
We fight for the right to live our lives, to communicate however we can, to live at any and all abilities and limitations.
We fight for support systems across the lifespan, for mental health series that access meet our needs, for non-verbal crisis support, for accessible shelters from abuse and violence.

We fight for the simple right to be human, to be included in human rights.

We don't need to prove anything to exist. We are enough as we are. Any changes in our lives, from the smallest detail to the largest of decisions, is our choice, our say. We exist, we are human. 

It seems like common sense, but it's something that apparently we have to continue saying.  And I'm not just saying this for myself, but for all of my autistic siblings, of all ages, of all abilities, wherever in the world they might be. For autistic people currently living, and those whose lives are yet to start.

We are not alone, and together, we will fight.

The following is a list of posts I've made over the years.  They aren't all perfect; I've grown and learned over that time. Some of the wording, particular phrases, that I've used before, are not what I would write now.  However, I think that these articles, from the past, in the present, and towards the future, communicate a lot of what autistic people this month have been fighting for.

Where are the autistics? (2012)
What's the Point of World Autism Awareness? (2013)
25 Things I Know as an Autistic Person (2010)

What I Want People to Know (2010)
Why "Retard" is a Hate Crime (2011)
Blogging as Communication (2009)
On Neurodiversity (2009)

Static Bubbles: The Myth of Functioning Labels (2011)
-- Functioning Labels and Meaning (2011)

Spoons, Batteries and Autism (2009)
-- Expanding Spoons (2012)
-- Expanding the Battery Levels (2013)

Video series from 2009
Real Autism Awareness
Speaking is not Communication
Let's Talk Neurodiversity


Wednesday, March 2, 2016

ASA Keynote 2016

It was a few years ago that I attended the ASA national conference as a presenter. For me, it was an interesting experience to meet people I had met online, to really get a feeling for the state of things.  I came home a little queasy. 

Yes, there were social badges, yes there was a sensory room.  But only a few of the vendors understood what it meant, and the sensory room was kinda far away from the rest of the conference. Sure, you want to make sure there's quiet for the room, but when I'm spending what little resources I have just to get there and back, it's not really worth it.  

Even as my autistic peers and I passed around curebie bingo cards and filled them in rather quickly, I was optimistic; it had to be better than it used to be, right? It's not the huge sweeping changes we want, but these things take time, right? Surely they're working to be better.  

Alas, I fear I was hopelessly optimistic.  Yesterday, as the autistic and disability communities were observing the Disability Day of Mourning, ASA sent out emails about the upcoming conference, announcing their keynote speaker.  

This is not how a community, how an organization moves forward to include and respect autistic people.  It shows not only in decisions regarding treating individual situations, but also widespread decisions on who you honour as major speakers, who you give a platform to.  

Instead of choosing any number of qualifying autistic people, ASA decided to have the writers of In A Different Key as keynote speaker.  

Given the way these writers fail to do basic fact checking for their book, the harmful attitudes towards autistic people, the sympathizing with murderers and abusers of autistic people, I really do not see how this can be seen as anything but representative of how ASA views actually autistic people. 

It's disgraceful and hurtful for an organization that is so prominent to highlight and uphold violence against the people they are supposed to be supporting.  It is damaging and it is endangering autistic lives. 

No more. 

Stop killing us!!!

Saturday, September 12, 2015

Social Assistance, Poverty, and the Cost of Living

I've written about Disability and poverty before.  And now we're getting in to the election season here in Canada again, so it's a topic that's coming up.

My friend Katrina Sauvé, has written the following and given me permission to repost it here:

as someone who has lived on OW/ODSP:
housing: geared to income shared housing is the ONLY thing you're going to be able to afford on the under $500/month that these programs give you
yes, that does not work with some people's mental needs, sucks to be them (and if I had enough money to change that, I would)
Transportation: $141/month? so not happening.
if you're not working, you probably can limit your bus trips to once/week and budget accordingly. yes, if you're disabled but the government hasn't admitted it yet, you're kind of screwed 'cause you won't be able to get your laundry AND groceries AND appointments all in that day
if working, you probably want to get a discounted bus pass (yes, Kingston, and hopefully other cities do give a discounted monthly bus pass to low-income persons. I advise you/your workers look into this)
Groceries: I manage to get groceries for about $200/month (or at least I spent $200.14 on all food in the month of May 2015)
tips: things like the Good Food Box Kingston are your friend; cooking big batches and and freezing the leftovers is your friend; lentils, beans, pork and potatoes are your friends; pasta and rice are your friends; buying in bulk as much as possible is your friend; if you will eat sausages/baloney/hot dogs/liver/tongue etc, they are your friend; dairy, fresh/frozen fish, high quality cheese, chocolate/candy and soda pop are your enemies, buy as few as possible of those (though do get yourself some single serving yogurts and either sour cream/ice cream/cheap cheese so you aren't missing out on calcium etc), also avoid any beverages but water, tea/coffee, water w/ flavouring
if you are on OW, you CANNOT afford to eat out unless it is at a soup kitchen, you will NEED a soup kitchen (and yes it sucks), and you may need the food bank. If you do not take advantage of these services, YOU WILL GO INTO DEBT. You do not have enough money to AFFORD to go into debt. USE THE FRICKEN SOUP KITCHENS/FOOD BANK.
Entertainment and Dining Out:
if you are on OW: FREE THINGS. do ALL OF THE FREE THINGS. let yourself have about $10 (aka ONE film/cheap eating out) PER MONTH to keep yourself from going crazy
yes, you will go into debt that way. do it anyway
ODSP: you can eat out two or three times a month if you keep it at or under $12 per time... you are allowed to substitute a film or show for one or more of these. if you are careful, you can do ONE convention/holiday where you pool money w/ others/stay w/ friends PER YEAR. Choose wisely, set your budget ahead and save $20/month ish towards that.
Drinks: Alcolhol is not worth it on either OW or ODSP. it is far to expensive for the joy it gives you. If a friend is buying you alcolhol that is ok, don't buy it yourself.
Health and Fitness: the gym is not worth it for the money you have, especially since you can do things like walk every day, run, bicycle (buy a SECOND-HAND bike for $40 ish at a police auction), skate (Play It Again Sports is your friend for reasonably priced skates, find outdoor/free rinks in winter or even cheap skates through local rinks) or swim (yes, A half-decent swimsuit, cheap towel/bag are worth the investment, as is the cheapest swimming place in town)
if you are on OW: depending on if there is water nearby, you may be able to swim w/ friends for free, if there are no ponds/rivers/lakes, consider any funds you spend on swimming/skating as part of your ~ $10/month entertainment fund
parks often have skating rinks set up for free in the winter
Walking/running/biking are your friends
does all of this seem unreasonably hard?
If you have the energy, GET INVOLVED IN POLITICS and lobby for HIGHER tax rates for corporations, LESS of a wage gap and MORE money for those on ODSP/OW (or even a GUARANTEED MINIMUM INCOME that will let someone survive, if slightly uncomfortably).
I spend $5/year on NDP* membership, because, from what I can tell, they most support those of us who are low/no income.
Greens and Liberals aren't bad choices either.

*NDP, for those outside of Canada, is it New Democratic Party.  See, we don't just have one Liberal/Democratic party... we have at least two.... Three if you count the Green Party. 

Me? I'm looking at the article and wondering how they're making their estimates.  Cause yeah, if you go out for drinks and shit, stuff is going to cost. ($18 for an alcoholic drink????) 

But apparently, that's all we young people are doing these days, lounging around our excellent downtown apartments, cooking all the meals, taking each other out on dates, and drinking in excess.  

Right... I'm sorry, isn't there a recession going on? Isn't there something like only a 5% job growth for most parts of our country? Don't our older generation complain that we're living at home and not doing anything?  Maybe cause we don't have jobs and don't have money to do any of this shit???? 

Oh, and of course, how many of us are on ODSP/OW? You know, living below the poverty line? 

Yeah, fuck this shit, let's all get out there and vote.  

Saturday, August 29, 2015

NeuroTribes Review

A couple of months back, I was sent an email asking whether I wanted a free copy of Steve Silberman's NeuroTribes.  Being something of a book hoarder, I really couldn't refuse.  I've been looking forward to reading this book since I've heard of it coming out, and offered to write a review.  So, for the sake of transparency, all I've gotten out of this is a free book and a voluntary obligation to write a review.

Cause I want to talk about this book. I really want to talk about this book.  This book deserves to be talked about.

I got my copy, oh, a week or so back, I think. Early August. (Yeah, I'm bad on time)  It took me some time to work up the nerve to open it, and then it took me longer than I expected to read it.  It is a subtly and surprisingly packed narrative written in and around various mini-biographies, following a single thread throughout history: the diagnosis of Autism as we know it.

I feel like there was a lot of material that Silberman has been working through, and chose his words with care to say the most, to show instead of tell.  It is a rich weaving of history, some of it painful and dark, and does not shy away from that.  Some of this I knew about beforehand, as part of my own experiences researching and being a part of Autism history, and some of it I could only guess.  I know that for those who are not prepared, it can be very disturbing.  Even prepared, the stories shared in NeuroTribes can be disturbing.

Silberman covers a lot in the pages, including treatments used on us, the theories prescribed about us, and how there is this fight to recognize autistic people, all autistic people, as autistic.  Complete with how such things like a diagnosis impacts individuals, and a glimpse into the beginnings of autistic culture, both before and after the advent of the Internet.

But this is our history.  And this is probably not the last book on Autism history, but is only a part of our past.  No, as I'm sure many of my community will agree with me, it is not complete.  This is a slice of where we've been, condensed into a nearly 500-page book (the epilogue ends at page 477).  That couldn't have been easy.  Especially since I know there is a lot more material that Silberman has from writing NeuroTribes, waiting to written and shared with the world.

Most importantly, there are parts that I didn't know about, new information about our history, indications and answers to that ever so annoying question "where are the autistic adults?" As Silberman shows, we have always been here, in the past, in the present, and in the future.  After all, some of those incomplete chapters, aren't we still writing those?

Let's go make the next volume of Autism history!

Sunday, February 22, 2015

Hair Autonomy

Recently, I've started to cut my hair.  Doesn't sound all that impressive, does it?  Well, at first it was just trimming the back of my neck, doing my own bangs, you know, little touch ups here and there.  The bangs thing was fairly regular enough that I bought my own pair of sheers because I found that hair dressers, no matter how nice, and they make awesome efforts at this, never quite get what I'm trying to describe how I want my hair.

And repeat visits, yeah, it might try to clear up what I want, but it's expensive, both in terms of money, time, and social resources. So I took matters into my own hands.  

Some of the results were more successful than others; I'm not exactly trained at this.  But I got a bunch of good feedback from numerous sources, including people who generally I expect them not to give an opinion either way, and friends who give honest feedback.  I figure, the only way to get better at something is to practice, so I continued on.  

And then I got the idea to cut my hair not only really short, but shave it.  For a number of different reasons, ranging from comfort while I sleep with my CPAP, to cosplay dedication, to why the heck not?

I thought about it for a while, even looked up shaving techniques and shaving for cancer fundraising campaigns.  I even tried talking to my parents about it.  Their response was... mixed.  "Oh, you don't want to shave. Go to [hairdresser] and get it cut short."  It felt really uncomfortable to talk about this to them, and I walked away from it trying to figure out why.  

Why is shaving one's head such a thing?  I asked myself this and started getting the itch to cut more.  

Not self-harm cut.  Since I was a kid, when I was angry or upset, or maybe even just frustrated, I'd cut things.  My mom's lunch bag, my brother's shirt, I'd even grab chunks of my hair and cut.  When I did that to my hair, Mom would whisk me away to the hairdresser to get it "fixed". Even with limited access to safety scissors, I went to the hairdresser a lot. I think it speaks a lot about how my mom views my decisions about my hair that years later, it took a family counsellor to convince her that as an adult, I don't need her permission to dye my hair and the remarks she'd say were very inappropriate, not to mention hurtful.  

I thought about that as I started cutting my hair the shortest it's ever been.  As I cut, I also posted pictures on my Facbook to document my transition.


The pictures of my hair like this, got comments about it being art.  Which I suppose is a way of looking at it I haven't considered.  But the more I think about it, the more I like the idea of my photographs as an art.  After all, it's documenting my journey, and various learning about cutting one's own hair, towards self-expression.  

I don't really see it as any different than when I compose and post images of my medications for the day, my dermatillomania scars, my migraine updates; I see it as sharing not only who I am, but my life and what I go through, and how I share, with friends, family, and yes, the public. As long as I am willing, and I control the lens, I don't see the problem with it. 

Except that art can be political and/or a form of activism.  I live in a situation where I can express myself through art freely, not only in my country, but also in terms of my personal intersectionality. I am a white woman, most of the time seemingly abled in public, who maintains privilege from a middle-class background, including my wardrobe.  

Two things come to mind when I'm cutting my hair.  

One, I think about how a lot of the questions I get when meeting casual acquaintances is centered on "why"; they want to know why I cut my hair in such a style.  The most negative comments (from family, I might add) expresses concern that I'll be judged badly, or that I'll regret it (it's hair, it'll grow back), or that it'll be ugly. 

I usually don't care about physical appearances too much, but I can't help but think that their concerns and negative attitudes is based on a rather limited view of beauty.  And an ugly view on society too.  So far, I've yet to be treated badly for my hair.  Could it be that people see my hair as only a small apart of my appearance?  There is the possibility that people have made assumptions about my lack of hair and my health, or that my various intersections of privilege has shielded me.  But why can't this be beauty?  

Second, I think about how many possible ways in my country where someone like me not be able to cut their own hair, in the way that they want.  For self-expression of their gender, or beauty ideals, or just to style their hair their way! In a different situation, it might be difficult for someone to style their hair because they live in an environment where they have no control over those decisions, whether by relatives or care staff, coercively or outright deciding for them.  

Or they must appease the people they live with, living in at least a faintly toxic environment or situation.  Or it's just not safe for them to do so.   I think about how in activism, we push for things like body autonomy, freedom of choice, freedom of expression; how much can be taken for granted with being able to cut and style one's hair?  

With both thoughts, the act of hair cutting becomes a rebellion, a defiance.  To go against perceived notions of physical beauty, to redefine beauty, but also acting for one's own body autonomy.  The freedom of the self.