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.

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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.

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. 

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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


#REDinstead

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!!!