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.

Wednesday, December 7, 2011

Musings on the ASAN Celebration

I know I'm a bit late posting this, but I was processing my thoughts, as well as juggling many things.  This morning is pretty much the first chance I've had to sit down and write it all out.

I remember when I first came online into the greater Autism communities, ASAN was one of the first groups I encountered.   It's been a bit of a shock to realize that it's only been in existance for 5 years, when it feels like it has been around for so much longer.  Five years is both a long time and a short time for non-profit organizations, and is one that is significant because it not only is a matter of surviving, but it shows that there is a need for ASAN to exist and to continue existing.  The day in which we no longer need the ASAN will be bittersweet, since it will mean the end to ASAN, but it also means that ASAN and other disability rights groups has succeeded, and both Autistic people and disabled people are equally included in all matters concerning us.

Today, however, is not that day.  On Wednesday, November 16th, I celebrated ASAN's 5-Year Anniversary, in Washington D.C.

I have to admit, I am honoured that I was invited to attend the event.  I've always looked to ASAN for inspiration on the type of impact I'd like to make.  However, for me to do the work that ASAN does is a bit daunting.  Thinking that I don't have the expertise or knowledge to work on a governmental level (at least yet), I've decided a long time ago to do what I can, to work on a more individualized and community level, doing talks with my local organizations, talking with other Autistics, our parents and support workers, and blogging. 

It is this decision that has led to this blog, as well as to my other contributions around the internet.  This decision also led me to Autistics Speaking Day.  Over the few years, I made contacts with other Autistic individuals and allies who shared the same views.  I have never claimed to speak for everyone on the Autism spectrum, declaring that "I speak for me!", and yet I found myself surrounded by people who said "I agree with what you said."   And at the same time, I encountered people who said "I hadn't thought it that in that way; you have changed my mind. Thank you."

I felt encouraged.  Even though it might have been just a little difference for someone else, I feel like what I do has worth and that I am capable of making a difference. I felt empowered, that maybe all these little differences will add up and I'll be capable of reaching a lot of people one day and making a big difference.  And so I continued.  I read things, I responded and wrote things. 

And then I came across Communication Shutdown.  Because of the previous decision I had made, and the empowerment I had gained from that decision, it was an easy decision for me to come up with Autistics Speaking Day. I didn't even think about it, really, I just thought something needed to be done, grabbed a name at the top of my head, and put it on my blog.

I don't think I ever imagined the kind of effect that Autistics Speaking Day would have.  I've kinda gotten used to working on a small-scale that the concept of Autistics and allies from all over the world would participate still stuns me.  It was an accident, a very happy accident, from what I gather as I read all the wonderful things written about Autistics Speaking Day.

When I got the email from Kathryn about going to Washington for the award, at first I wasn't sure whether I could or whether I should.  While I had dedicated my time to Autistics Speaking Day, and I acknowledge that it was my idea that started everything, I've been a little uneasy about taking much credit for it.  Maybe it's lingering self-esteem issues, or my upbringing to be as modest as possible, but I don't really consider Autistics Speaking Day as mine.  To me, it belongs to every person who contributed blogs, read posts, tweeted about and did anything to do with Autistics Speaking Day.  To me, it belongs to the community, so it felt a bit wrong of me to take a substantial amount of credit for it.  It felt like a mixture of egotism and a bit like super-crip-ism. 

But then it dawned on me on where the award was coming from; this is the ASAN, an orgranization created by Autistics, run by Autistics, for Autistics and cross disability issues.  These were people that I had been talking to, blogging with, signing petitions and protesting with since 2009.  These are my people, saying that what Kathryn and I did, what I imagined and put forward to the community, has worth and made a significant impact to our community.  It's that acknowledgement that means a lot to me. 

So I went to Washington, all nervous and excited.  I heard Ari speak live for the first time, passionately and powerfully about the need for Autistic people to be involved with matters that concern us.  I felt myself inspired, recalling the motivation and determination that has kept me blogging these past amost-three years.  I accepted the award, and thankfully didn't stumble over my little acceptance speech too much.

But you know what the best part of it all was?  It was meeting my people, Kathryn, Savannah, Ari, Melody, Lydia, Stimey, Lori and Karen and all the others who are my community.   It was the best time ever. 

Tuesday, December 6, 2011

Functioning labels and meaning

This is going to be a short post; I've written a more extensive article for the Autism Women's Network on this that I need to just finish editing before it goes up.

Most to the time when I come across the terms high-functioning and low-functioning, they are used as descriptors for Autistic people, whether well-meaning or as a way to dismiss Autistic opinion. However, at the time of writing this, the last time I had it directed towards myself directly was in a conversation just a few days ago at a store I go to on a weekly basis. For context, the staff at this store know I am Autistic, ADHD and some of my various other disabilities. They also know that quite a few other regulars also are on the spectrum and have disabilities.

I was talking with one staff member and the topic of disability came up, Autism amongst my family members in particular, and how some of them aren't diagnosed even though we're pretty sure they're on the spectrum, with some comparison to my own rather belated need for a diagnosis. In response, the staff member replied "well, you're pretty high-functioning yourself, right?"

Knowing that she didn't know how quite loaded that term is for me, and she didn't mean to step into the "but you don't look disabled" fallacy, I attempted to explain it's not a constant state (I don't know about how well I came across; i had a migraine and had just worked a 7-hour retail shift, was hanging on with the last of my batteries and my last remaining spoons). As I did so, I came to understand something, what people really mean by high- and low-functioning.

It's not about vocal skills or IQ scores, as I've seen proposed in the Autism communities, or frequency of symptoms and self-harming behaviour, as defined by the Global Assessment of Functionality. It's about visibility.

Think about it; that's what really is meant when people label functioning status to disabled people, the level in which the disability is visible to other non-disabled people. A person like myself, whose disabilities are largely invisible due to the nature of my disabilities themselves and the work I put into surviving outside my safe space, is more likely to be automatically considered "high-functioning". This is because unless I let people in and show others my private life, my daily struggles, the moments where I'm not working on "passing", people have no idea how much that label is inconsistent with my actual reality and a lot of times, a lie. In the paraphrased words of a few of my friends "it wasn't until I lived with you that I fully understood the impact and implications of what you told me what your life is like; until then, I thought I knew, but I didn't."

Autism is already an invisible disability, being that by clinical definition, it is a developmental disorder, a mental disability, not a physical disability. This means that unless we are very visibly Autistic, most people have no idea that we're disabled. Someone who is highly visible as being Autistic is more likely to be considered "low-functioning", and treated with all the stigma that entails, due to sheer ignorance. There is, of course, problems with both scenarios, based on assumptions made about disabilities in general and functioning labels on specific.

As part of the Autism and Disability rights movements, I think we should be correcting the terms. Let's call out the fallacies in functioning labeling, and call it what those descriptors really mean, highly-visible and highly-invisible disabilities. This way, not only are we rejecting the assumptions made about us, but we're also confronting ableist attitudes hidden in the words used to describe us. It makes clear that what they're using to divide and label us is false and superficial and makes it uncomfortably clear on what they really mean. Maybe then we can change more minds on how they treat us.

Edit: Of course, there are problems with the terms highly-visible and highly-invisible, in that there are also times when someone is more visibly disabled than others.  This certainly isn't going to be the ending solution to the problems with high-/low-functioning labels.  However, I think it's a step towards confronting non-disabled people on what exactly they mean by those labels and the underlying attitudes that are expressed.   It's a step towards addressing the ableism behind it, so that we can work on descriptors that are more accurate and are still respectful of every disabled and Autistic person. 

Thursday, November 10, 2011

Self-Advocates Sonnet

This is one of the poems that I submitted to the Perspectives Anthology 2

Self-Advocates Sonnet

Shall I consider how my day is spent
in this land, far and great and wide
where I seek what others try to hide
examining where rules and ethics bent
twisted, reworded my nature present
while armed with truth, I speak to chide
too often, my voice cut off, silenced, denied
shouted down by demands for births mine-kin prevent
whilst ignoring human rights, the basics we need
another sigh of patience, I maintain to do my best
to advocate, create changes to the current state
of services, supports, implement at too slow speed
I tire, but have far to go before I dare to rest
For the sake of life, we cannot afford to wait

Wednesday, November 2, 2011

My ASDay

 I never did get to finishing and posting the two posts I had planned for Autistics Speaking Day.  I was going to explore the link between poverty and disability, as well as take a look at how crisis lines are ableist (aka, why aren't there online crisis chat services, why aren't there mental health services that disabled people who find leaving their homes or picking up a phone to be a challenge?).

But it never happened. There was just a flood of posts coming in that between taking care of them (I read pretty much every single one) and doing my own daily tasks, I didn't have time to write my own!

Luckily, I had a plan in case this happened, and took photographs throughout the day.  The ones I posted on Twitpic can be clicked on to see the full photo.

So, I bring you, My ASDay:

First, I started the day at the Sleep Clinic.  I have severe sleep apnea and had stayed the night in order to get my CPAP pressure checked.  Turns out, my pressure needed to be raised.

My room at sleep lab #asday on Twitpic
my room at the sleep clinic

I woke up at 6am, and made my way home from the Clinic.  My monthly bus pass had expired (new month), so I made a mental note to get it renewed.  I'm on a Municipal Fee Assistance program, so I get a discount on monthly bus passes.  I pay 46$ a month, instead of $60-something (the prices just went up, I used to pay $44).

I got home and noticed that I need to replace my bandaid.  I had cut my finger at work.  Here is a photo of it (which I'm not displaying here, for trigger warnings)

I also made sure to take my morning medications.  I have two main meds that I take, one in the morning and one in the evening.  The rest of my medications are as-needed meds, for things like acid reflux or when I need an extra boost to beat anxiety.

Morning meds #asday on Twitpic
my morning meds

I sat down and started working on getting updating the ASDay blog.  So many posts!!

Headquarters 1 of 2 for #asday on Twitpic
ASDay Headquarters no.1!

At one point, I noticed a bit of a crash in the hall.  A bit later, I went to investigate.  The maintenance guy had been around, trying to fix the small window in our front door that had broke.  He's been working on it for some time, and I think that it might be cheaper if the non-profit housing organization just replaced the door.  It's an old door, original to the house, and it has quite a few cracks and leaks.

Our frontdoor #asday on Twitpic The glass for the front door #asday on Twitpic
our front door and the glass for our front door
After that I spent some time chatting to my boyfriend, Dave, on Skype while I worked on putting up submissions.

Chatting with bf #asday on Twitpic
Chatting with Dave aka Noyer on Skype

Then my house-mate B asked whether I'd like to go grocery shopping with him.  His case worker came to pick us up and took us to the grocery store.  I got some new hair clips, because I am forever trying to find clips that won't fall out of my hair and I just got my hair cut.  I also picked up some of the Halloween makeup glitter on sale, and a few treats.  I mostly got things I needed, including things for my lunches to go to work. 

Groceries #asday on Twitpic
my groceries, about $60, a tad over budget but I figure I can afford it with a new job!
(stuff on the bottom rack are B's)

Since we were near one of the pharmacies that sells bus passes,  I ran inside to renew my monthly pass!!  B ran to the pet store for kitten food (for his kitten) and to the bank (to get cash to pay his share of the internet bill).  We came home and put our groceries away.

Share photos on twitter with Twitpic
Between semi-obsessional food hoarding and donations from friends, I'm stocked for winter!

I put away my non-grocery items as well, and opened up the hair clips to wear for the day.

Used to pretend these were aliens #asday on Twitpic
Had bigger ones as a kid, I used to pretend they were alien monsters
I got back to work on updating posts, but also got a little distracted by housework.  I did a little tidying around my room, swept/swiftered my floor and took out my recycling and garbage.  Garbage days are Sunday nights, so I usually take the recycling and garbage from my room after Sunday, about every other week.  Garbage/recycling is one of the chores around the house.  My chore is to vacuum the carpets, which I try to do at least every other week.  Right now, the upstairs carpets are fairly good, but since the kitten's litter box is downstairs, I think I need to do it soon.

Sweeping floor #asday on Twitpic Taking out recycling #asday on Twitpic
Sweeping and taking out recycling

Then, I worked on ASDay posts again, and starting fixing my supper in the slow cooker.  I made chicken with a pesto-cream cheese sauce, which I had with vegetable juice and rice.  I usually put on these seasonings on my rice, and I'm pretty much out.  Next time I'm near the Asian Market, I need to pick up some more. As I started up the ASDay IRC chatroom with the GimpGirl Community I made Apple Crisp for my Dungeons and Dragons group, who came over to play.

Remainer of dnd apple crisp #asday on Twitpic
Remainder of DnD Apple Crisp

Before I played a quick session of DnD, I did a bit of work on my schoolwork, handing in an assignment due that day, and working on discussion questions.  I also have an essay due next week.

Coursework on Twitpic
Coursework, really!

Unfortunately, I couldn't get a photograph of my DnD group, but we had some fun.  Afterwards, people left for home (one slept on the couch though, she was too tired to head home) and I got back to work on ASDay posts.   Kathryn and I divided up the rest of the work, based on our strengths, and I managed to get completely caught up with the submission form list!

Caught up in #asday posts on Twitpic
Caught up with posts! Yay!

By that time, it was kinda late for me, who had gotten up at 6am and had work the next day, plus school to work on.  Kathryn had Wednesdays off, so it was mutually agreed upon that she continue on while I went to bed.   So I did.

Bed time! Night! #asday on Twitpic
my bed!  Bedtime!

Ta-Da!  That was my day!

Friday, October 28, 2011

ASAN 5-Year Anniversary Celebration

So I guess I should post the news.  Kathryn and I have been invited to the ASAN 5-year Anniversary Celebration, at the National Press Club in Washington D.C., to receive the 1st Annual Award for Exceptional Service.  We're being recognized for our work creating Autistics Speaking Day

Um.  Apparently, this is a big deal.  I wasn't sure whether I'd be able to go, but my parents and I are going to drive nine hours to attend.  So I'll be there. 

I'm kinda embarrassed.  I don't do all the work I've done for awards, although it is nice for both of us to be recognized for what we've done.  

But I get to meet quite a lot of the people I've been emailing and chatting with online for the past... two years, at least?  I'm really excited for that. 

So if you're going to the celebration, I hope to see you there!!

Tuesday, October 25, 2011

Occupy Toronto: Disability Pride March

(This was passed my way by the Disability Studies program at Ryerson.  As much as I would love to attend, I am unable to do so, and so I spread the word.  ~Corina)

Toronto Disability Pride March
Saturday, October 29   ·  12:00pm - 3:00pm
Nathan Philips Square to Occupy Toronto (St. James park)

Please forward and share far and wide!!!
Join us at the square, and come down to Occupy Toronto if you can! They're making great efforts to be accessible down there.

Why Disability Pride?
Because Rob Ford, or somebody under him, cancelled International Day of Persons with Disabilities Celebrations ...
Because when cuts happen, people with disabilities are often the first to be hit, wheeltrans was almost on the chopping block, and social housing still is.

Because there have been way too many deaths and injuries to people with disabilities in interaction with Toronto Police, and considering the amount of funding they get, there should me some disability training. No one should be dying in police interactions in Toronto!

It's time we showed Toronto that Torontonians with Disabilities have a voice, and we will not be sold out or discriminated against!
Facebook link: http://www.facebook.com/#!/event.php?eid=150322745067099&notif_t=event_update
Isaac Stein, M.Ed
Disability Counsellor
Accessibility Services
St. George Campus
University of Toronto

Tuesday, October 4, 2011

Loathing Words by Dave Hingsburger

Dave Hingsburger is one of my favourite disability bloggers.  I find that he just has this way this words that says exactly what needs to be said.  This is one of his most recent posts, Loathing Words, which I asked permission for to be reblogged.

Loathing Words!!


Piles and piles of words.

So many of the things I've been reading recently, about disability, have infuriated me. There are words that appear over and over again. Words that appear benign. Words that appear to be about something BIG, about something GRAND, about something IMPORTANT. Words that assume what I want, as a person with a disability, what we want as people with disabilities. Words crafted by others, that pretend to be about us, about our needs, but are only, really, about the sense they get about being gifted in the presence of what they see to be our deficits. Its is only really a fool that could say, "There but for the grace of God go I," and not understand what it says and what it means. There are words that feel good in the mouth of the privileged but burn in the ears of the dispossessed.

Words like: Empower.

I hate this word. I see it all the time. I've written about it before and I will do again, but for now let me rant. Who the hell wants, ever, to be empowered by another? Who the hell wants to be seen as so weak and so passive that they wait for the benevolent help of one's 'betters' for the 'gift' of power? We can only, of course, empower ourselves. We can only, of course, embrace the power we've always had and begin to use it. We can only, of course, raise ourselves. No one can do these things for us. No one can do these things for another. The word 'empower' - where it bothers me most, is when I see it used by those within systems. Systems that have routinely disempowered, routinely disengaged, routinely disregarded those with disabilities. Those they SAY they SERVE. It's a word used without irony, which is, itself, ironic. They first rob of power and then give tiny pieces of it back and call it 'empowerment'. It's like a thief stealing from someone a dollar and then giving a quarter back in an effort to 're-enrich' the victim. Right.


I call Bullshit.

Words like: Tolerance

I do not wish to be tolerated. I do not wish to be the 'one' tolerated by the 'many'. I do not wish anyone making the supreme effort to tolerate the mere fact of my presence. I do not wish to be the fart in the elevator that everyone pretends is not there. Existing with the understanding and tolerance of another, existing with the gift of someone's making an exception, someone's making an effort ... as if my existence here, in this place, is not a right but a privilege granted by another. Those who tolerate get to tut tut the tolerated. Those who tolerate get to roll their eyes and glance conspiratorially at the other tolerators at the antics of the tolerated. Those who tolerate get to determine what is acceptable and what is 'just to much my dear'.


I call Bullshit.

Words like: Kindness

Let me dissuade you of an idea. I do not want your kindness because I do not wish your pity. And let's be honest, kindness most often grows as a weed around the wellspring of pity. Grabbing a door for a pregnant woman who is struggling with parcels to get in is not KINDNESS, for God's sake, it's CIVILITY. We have become a society who wants kindness credited to their humanity card for simple acts of civility. While I do not wish kindness, certainly not more or less kindness than offered to any other, I do wish for civility. I do wish for behaviour that considers me as a person and my needs in the moment. Just as I wish to consider the needs of you as a person and your needs in the moment. Civility is not kindness. Civility is increasingly rare but that does not make it's occurrence exceptional or it's practitioner kind.


I call Bullshit.

Words like: Blindness

Saying to someone with a disability that 'I just can't see disability' or 'when I see you I don't see your disability' or 'I only see abilities', and this is the worst of course, 'I'm just blind to disability.' Oh, freaking, please. PLEASE. No one is 'blind' to my disability and furthermore I DON'T WANT YOU TO BE BECAUSE I'M NOT ASHAMED OF IT. I don't see how you think I should be flattered or, God Forbid, think you are magnificent, because you don't see what is plainly there. I am disabled. Get that. I am freaking disabled. I am in a freaking, fracking, wheelchair. See it? It's the thing under my fat ass!! Don't try to get me to 'play pretend' that my disability doesn't exist to you or to the world. Don't get me to give in to your desire to play 'dress up reality' and feel that you have RAISED ME OUT OF DISABILITY AND INTO EQUALITY. No, don't. Just don't. I am disabled. I don't like the idea of being verbally euthanized by words like 'challenged' or 'special' or 'exceptional'. I don't like being taken out of language and I don't like being taken out of my wheelchair and into fantasy-land. I live here, in reality, and I FREAKING LIKE IT HERE. I do not wish to move into your world where you pretend I don't have a disability and I pretend that you are a saint.


I call, double Bullshit.

Hey, here's a word I'd like to hear a little more often: Respect.

Why don't we try that for a little while? Why don't we empower ourselves though kindness and tolerance towards a disability blindness so that we can ... oh, sorry the word respect doesn't fit in that sentence. Respect Difference. Respect Diversity. Respect Disability. Respect engenders respect. None of the other words have that capacity. None of the other words have within it a deep need for mutual change. None of the other words call us out into real interaction and real comradeship in the real world. Respect knocks at the door of social change. I'm guessing that's why kindness, and tolerance, and 'blindness' and empowerment never answer.


I love some.

I fear others.

I loathe these. 

Tuesday, September 20, 2011

Why "Retard" is a Hate Crime

It doesn't happen often, but every once in a while I get confronted with a very ugly word.


It's used a slang, as an insult.  People know that it's offensive, but they still use it.  They seem to think "oh, it's slang, it's just a word, it doesn't matter."  But you see, it does matter.   Just because there isn't a person with intellectual disabilities there, or apparent, doesn't mean it doesn't matter. Because connotations matter.  The thought behind the word, it matters.  

Let me show you how.

The noun "retard" comes from "mental retardation".  Despite some popular belief, it is actually still used as a diagnosis for people with a low IQ score and two or more adaptive behaviours.  According to the ICD-10 and the DSM-IV-TR, there are even varying degrees of it.  It is considered to be an intellectual disability, and in fact, most advocates prefer the term intellectual disability rather than "mental retardation". 

Why?  Because of how the term "retard" is used.  It is used not just towards people with intellectual disabilities, it is also used against any disabled person.  It gets flung at children in the schoolyard.  It gets tossed around as an insult by adults.  It has been used to mock, ridicule and insult, not only non-disabled individuals, but disabled people specifically by the simple act of using a diagnosis as slang. 

When you use the term "retard", you are specifically taking defining aspects of people, in this case disability, and mocking them.  It's kind of like taking a person's skin colour or sexual orientation and using that as an insult.  We don't use the words "nigger" or "faggot" anymore?  We know better, or at least, we should know better, because there is a history of discrimination against the groups that it refers.  In our supposedly more progressive society, it is no longer acceptable to use those words. 

The same is with "retard", but it seems like the same regard is not applied to disabled people.  It's discrimination.  It says that you can target disabled people, mock and insult them, and get away with it because you can. 

When you can hurt them in your head and with your words, what's to stop you from hurting them psychically?  Because believe me, you're already hurting people mentally and emotionally with your words, and it doesn't take much for those types of attitudes to shift from being merely words to physical violence. 

It already happens.

Right now.

Go on, look up "disabled victim", "disabled crime", "disabled violence", or "disabled murder".  It is said that disabled people have at least two to five, possibly up to ten times, the risk of violence than non-disabled (Sobsey 35).

Disabled people have been beaten, robbed, sexually and physically assaulted, and murdered because of how people think of them.  Because people think it's okay to use us as an insult, to mock us and degrade us, then it's okay to take things one step further and target us specifically for crimes, not just the individual, but the entire group. 

Do you know what it's called when an offence is motivated by a person's membership with a group? 

Hate crime

The question is, do you really mean it?  Do you really want to potentially endanger people with the carelessness of your words? 

Understand that ignorance as an excuse only goes so far, and intent does not mean that you are exempt from the consequences.  Once you know about the potential results, you got to ask yourself how you would feel if someone mocked you for being right- or left-handed.  Or being beaten because of your ethnic background?  Or murdered for speaking another language?  And then the people did that to you just walks away without facing any consequences, legal or otherwise?

Don't like it?

Yeah, neither do we.

Works Cited

Sobsey, Dick. Violence and Abuse in the Lives of People with Disabilities: the End of Silent Acceptance?. Baltimore: P.H. Brooks Pub. Co., 1994. Print.

Friday, September 9, 2011

The Beginnings of Autistics Speaking Day

Hi all!!  I wanted to let you know that I wrote a post on the beginnings of Autistics Speaking Day for the Thinking Person's Guide to Autism, and it just went up today. 

So go ahead and check it out!


Saturday, September 3, 2011

Self Definitions of Recovery

Recently, I took a class called "Mad People's History" at Ryerson University.  It's a course that explores the narratives of psychiatric survivors, on their stories of their experiences in institutions and outside institutions.  Some of the stories we looked at were those of the leaders in the Survivor movement from the 1970s to today, and how they affect how mental health services are operated now.

As part of our assignments, we had to go out and explore our local "mad" community, keeping a diary as we went to record our observations.  One of the things that I noticed was how mental health organizations used the term "recovery".

Instead of enforcing an externally conceived notion of recovery, it is the clients themselves who defines their goals and terms for recovery.  This returns power to the patient and gives them control over the services and supports involved with their lives. This also rejects the notion that recovery is the same for every person.

What I think is that the concept of recovery is different when applied to different diagnosis. Just like there are different causes to disabilities and disorders, there are different reactions and progression after the onset of disability.  This applies to all kinds of disorder, disabilities and what is considered to be mental illness.

In some cases, the term recovery is apt; it describes the process of regaining, restoring and healing from injury, trauma and disease.  These are the times when the disability is temporary and possibly easy to repair without long term effect.  Such cases may be rare, since even as temporary, the experience can have a lasting effect on a person mentally.

Most of the time, recovery and healing can only be partial, compared to skills and abilities before the disabling event.  These can range from barely noticeable differences to huge developments for a person, and can be the result of a large variety of rehabilitation therapies.  The focus with the use of recovery in this setting is to give the person choice in what therapies to pursue and whether or not they want to undergo treatment, under the person's definition of recovery.  

However, there are also permanent disabilities that the term recovery is completely inappropriate. These are the cases where disability happens early on, either through genetics or other forms of causations, and affects development of skills from the get-go. I'm including Autism, ADHD, and Learning Disabilities, whereas skills and abilities have not been taken away, but rather develops to a different outcome at an individual rate.  In such cases, there is nothing to recover, since those skills and abilities might never have been there in the first place. 

It is not a matter of recovery, and so using the term recovery is completely inappropriate.  A more appropriate term is development.  A diagnosed child with these disabilities is going to develop skills at their own rate, but there is also more conscious involvement of parents, teachers, caregivers and professionals in observing and encouraging the development progress.   At the same time, it is difficult to give an accurate prognosis of a child, since there is little to compare a child to other than other children, which is not an appropriate gauge.  Since each child develops at their own rate, it is more accurate to compare a child's progress by the skills that have been developed so far, and try to use that as, at best, an educated guess at the rate the child will develop.

In any case, since a person with developmental and early-occuring disabilities will be following a more unique and individualized development growth.  As a person progresses, they will be building completely new skills, instead of regaining old skills.  Unlike situations where a disabled person may be actively compensate for impairments, the term recovery is completely inappropriate.  While the use of recovery may empower individuals, it can also de-power individuals.

To use the term recovery in such case is to perputrate the myth that there is or was a "normal" individual that can fixed or cured to the state where a person is no longer disabled.  This is a very medical model of disability, which places the burden of impairment and disability on the individual in a manner that is very victim-blaming.  In fact, in the medical model of disability, a disabled person is more or less a victim, whether by accident, the actions of other individuals, or the genes one inherited from parents.  It is then the responsibility of the individual to take up the burden of disability, and make oneself as less-disabled as possible.  This leads back to the idea of cure and recovery.  

If a person is the one defining recovery and is making decisions on how to achieve recovery for skillls and abilities that are capable of reclaiming and compensating, then the use of recovery is appropriate.  But for in the case where a person is progressing with new skills and abilities, then the term recovery is not apppropriate and should be replaced with more suitable terms such as development and growth.  This way a person is empowered by their own accomplishments instead of being improperly compared to unrelated others and potentially being disabled through the medical model.

Monday, August 29, 2011

Response to Review of Social Assistance

In Ontario, the Social Assistance programs are under review.  The Commission involved is in charge of "examining social assistance in Ontario through engagement, research and analysis to provide the government with a concrete action plan to improve the system for the people who need it."

There are comment and response forms for people to reply and contribute, found on the Commission for the Review of Social Assistance in Ontario website.  

Being a recipient of ODSP, I contributed my own comments, as seen below:

When determining social assistance rates, the cost of living needs to be considered.  Depending on location and the fluctuation of the economy, the cost of living changes.  In such cases such as the present, when the cost of living rises, so should the rates in order to ensure that recipients are able to afford necessary items such as food, clothing, rent (which for any higher quality of life is much higher than the amount given for rent with ODSP), as well as be able to pay the bills. 

As a recipient of ODSP, I find it a challenge to find work that makes it worth the deductions from social assistance.  Part of the problem is that it seems that the deductions are taken off with the assumption that any income we make in the previous month will be used for the next month.  I can tell you that it is not.  Often, because ODSP does not adequately cover all the costs of living, recipients who are working use income in the same month that they earn it.  This means that there is no saving for the month ahead, and the deductions actually serve to create a cycle of debt and poverty that is increasingly harder to break.

Also, with the current economy and job market, it is extremely difficult for persons with and without disabilities to get a job that would lead to coming off of social assistance.  The amount paid by most jobs available are not sufficient to take the place of the deductions in a person's social assistance and so there is a constant need to find a better job, leading to an inconsistent history of employment, as well as an increased risk of a person burning out and becoming depression and/or further disabled mentally. 

By the time a person is able to find a decent paying job that does not cost a huge amount of emotional stress and is able to gradually have social assistance withdrawn, the person is in quite a bit of debt due to the cycle created by earning deductions in social assistance. In such a situation, it is near impossible for a person to save for the future, either for needed items for a new job, or items to enhance quality of life, or to put towards miscellaneous costs such as over the counter flu and cold medications as well as other medical costs that are not covered by benefits, or towards retirement in old age.

The Registered Disability Saving Plan is an attempt to allow persons with disabilities to save towards their old age, however, there are some concerns about being able to get accounts registered.  For accounts to be registered, a person must have the Disability Tax Credit, which has a different definition and set of requirements than ODSP.  What is puzzling is the mix of seemingly specific yet vague criteria needed on the applications.  What is needed is a standardized definition of disability so that ODSP recipients applying for the tax credit in order to register their RDSP is able to be approved and thus be granted financial security for the future by saving what they can afford from jobs, especially if they are able to get jobs that just barely gets them off social assistance but not improve their quality of life.

What is also problematic is how education is handled by ODSP.  ODSP is suppose to not deduct earnings if a recipient is taking post-secondary education classes.  However, there are times in which earnings are deducted despite the recipient informing and even providing documentation of their student status.  This is especially the case during the summer months, when there are also classes available for students. 

Between being unable to save for the future, and being unable to save for post-secondary education that may especially prove to lead to higher-paying employment, ODSP often hinders the efforts of recipients to gain adequate employment to no longer require social assistance and be able to improve one's quality of life.  Rather than aiding people, social assistance as it currently operates perpetuates and increases poverty conditions for low-income persons, families and disabled people.

Monday, August 22, 2011

Getting Ready for ASDay 2011!

Whew!! Things have been busy for me this summer!

I'm currently working on an essay on violence and disability for school, an article on functioning labels for AWN, and a piece on self-definitions of recovery for here.  Some of them, just when I think I have all the materials I need to finish them, someone mentions some very good resources that make me rethink some of my points or what to include more information. 

However, I'm also getting ready for Autistics Speaking Day 2011.  It was an overwhelming success last year, with such a small amount of planning and advertisement.  I'm excited to see the results of this year.  I've read some of the responses to ASDay last year, and it's been incredible!! I am still blown away and amazed at people's responses. 

So we're doing it again!!! We're a little bit more organized this year, got our Facebook event up in advance, and Kathryn and I have started an official blog so that we can compile everyone's contributions in one spot.  It's still under some work, but it's up and running!

We're also going to be looking for people to help us out.  Last year, we were a little overwhelmed by the flow of blogs.  Kathryn was incredible being able to keep on track of everything on Facebook, and I had my hands full on Twitter.  We'd like someone who is fairly familiar with social networking sites to help us out.  But more on that later. 

Yay!!!  Our blog is up!!

Monday, August 1, 2011

To Yeti

If you see my twitter and Facebook being flooded with pictures of a little white cat, it is because today Yeti is being put down.

Mom and dad say that she wasn't feeling well, not eating or drinking. They took her to the vet. Turns out all her organs are shutting down and she's dying. The vet can only make it happen painlessly and quick.

So afterwards, we're bringing her back home and laying her to rest amongst the roses she loved so much, by the house.

I remember bring Yeti home for the first time. It was after Lunamus died, we had gotten used to being a two-cat house. And we wanted a cat that would mentally stay young. So mom called all the pet stores and requested to be put on the notification list for simease- cross kittens.

I was walking home from high school, in my kilt and rowing jacket, when mom and Loren pulled up. "we're picking up Loren's cat," they said, and I got in. We were the first to respond, so we had the pick of the litter. And so we got the prettiest, more playful girl there.

She would climb up curtains and furniture, so Loren named her Yeti. Since I had Nibbles, an older cat that didn't like the young kitten, Yeti stayed in Loren's room for the night until Nibbles got used to her. At Christmas, she'd climb up the Christmas tree and sit in fake branches. As she got older, she loved to curl up under the tree and in boxes and corners.

Lately, she took to curling up at the foot of my paintings, which I found funny. I had used her temperament as inspiration for my character Kithara, and her colouring for another character, Joshi, both of Amhelaki Misadventures. The painting she liked was of those two characters.

She liked going outside and exploring, constantly getting into places where she shouldn't be. I've caught her sneaking downstairs into the basement, where the cats aren't allowed because of the sewing machines and because we keep it free of cat hair for guests with allergies. It was also routine to check a couple times a day where she was, especially at night. Once or twice, she did let locked outside for the night, but in the morning, she'll be on the porch, sitting on the rockers, waiting.

She loved sitting on the patio furniture, or in the flowerbeds by the house when she wasn't exploring the yard. She hunted birds, catching one last june, and bugs. When the neighborhood cats came by, she'd chase them off, but never got into fights.

She liked people, loved having attention and being petted, although only when she wanted it. She and dad had a routine; he would sit down to put on his shoes for work on the stairs, and she would circle around him, purring and then crawl into his lap. They would sit there for a while until she would jump off and he would go to work.

For everyone else, if she rubbed your leg and purred in the kitchen, you could pick her up and cuddle with her, but she fully expected food afterwards. Elsewhere, she's walk away and expect you to follow her to where she curled up. There you could pet and comb her, but not pick her up. She would just wiggle out of your grip, and jump down, or else walk down your back and jump.

She liked exploring too, would get into the neighbor's yards and then run back when she heard our door opening. Couldn't keep her on a leash or collar; she was double jointed and very flexible, would just slip through it. But we didn't worry, once we found that she knew the boundaries and didn't go near the road. She liked to go out the front door, and then circle around the house to the back to be let in.

The two times she stayed on her leash was when we took her for walks. Once, to the lemoint point conservation area. She'd walk for a bit, then stop to check out things off the path. Some times we'd carry her, when it looked like she was tired. Second time, we took her on a walk to the convience store for milk. She was doing the same for that, but the way back she walked the entire way, in the lead.

Even though she'd wander the longer she was outside, she always came home.

Friday, July 8, 2011

Canadian Autism Bills Pt 4: Petition

So yeah, both Glenn and Ted haven't responded to me.  However, I'm going ahead in my plans.  I started a petition on Change.org!!!!   You can find it and sign it here!

I need to come up with an image, but I don't know whether  I can do it until I can get back to my very old version of Photoshop.  Which won't be until after my DST 501 Rethinking Disability course ends, next Saturday.

Tuesday, July 5, 2011

Canadian Autism Bills Pt 3: Open Letter to Ted Hsu

With the concerns about the Canadian Autism Bills, and the lack of response from Glenn Thibeault, I have decided to contact my own MP and address the issue with him.  The following email was sent Ted Hsu, MP for Kingston and the Islands, on the morning of July 5th, 2011:

Dear Ted Hsu,

First of all, I want to congratulate you on your appointment to Member of Parliament for Kingston and the Islands.  I am very pleased to be represented by such an upstanding representative, and hope that together, much good will come of it.

However, I need to come to the main reason as to why I am writing to you.  Recently, Glenn Thibeault has re-introduced two Private member’s Bills, Bill C-219 and C-218, that has me concerned on many levels.  Before I get started, I do need to disclose to you that I am a person diagnosed with Asperger Syndrome, and consider myself an Autistic individual, as Autism is a part of who I am, how I think and interact with the world.   It is because of my identity as such that has me especially interested in these legislations. 

Bill C-219 is the National Strategy for Autism Spectrum Disorders.  To be honest, I am not sure what to make of it, since it seems a little vague.  I am worried about the potential misuse of a national surveillance program, especially with the ongoing research into pre-natal testing for Autism.  However, I am also hopeful for “the provincial government in providing education, professional training and other required supports for Canadians with Autism Spectrum Disorders”.  I do hope that this includes adults and students, as a university student myself finding it difficult to both work and attend courses on social assistance. 

What really has me and other Autistics worried is Bill C-218, the amendment to the Canada Health Act to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as services “medically necessary or required… for persons suffering from Autism Spectrum Disorders”.  In fact, given the language and potential negative consequences of the Bill, I strongly oppose it. 

As an Autistic individual, I can tell you that I do not suffer from Autism.  Both my-self and many other Autistic people will tell you that what we suffer from is a society and environment that is inaccessible, and unable to understand and accommodate our needs so that we can flourish as active and contributing members of society.  Part of this is the fact that often Autistic individuals are not included in local, provincial and national discussions about Autism, thus silencing our voices in matters that effect us and future generations.  In correction of this error, I hope that you will work with us to make sure that Autistic voices are being heard within our communities, with our social services and organizations, and in our government. 

The second part of language that I object to is the term “medically necessary”.  I understand that the term is a legislative term, apparently used to ensure “that such services cannot be withheld by any province or territory” (Glenn Thibeault, email Wed June 29, 2011 at 11:59am to myself).  However, it has the implications that Autism is a disease that is contagious and/or full of suffering and misery.  This re-enforces harmful negative stigma and stereotypes about Autism, and can hinder Autistics from gaining meaningful education, employment and involvement within our own communities.  This also gives a false impression as to the reality of our existence and our lives, making us out to be living lives full of tragedy, suffering and misery.  In some cases, because we are “diseased” and because we are disabled, we are seen as sub-human, and this justifies abuse, discrimination and even murder of Autistic people, usually in the case of relieving us of our “suffering” or else in plain cruelty towards perceived inferior individuals.  Thus, such language as “suffering” and “medically necessary” poses negative consequences on the lives of Autistic individuals and creates barriers for us to be a part of society and our country, if not outright threatening our lives.

And then there is the matter of ABA and IBI in terms of the legislation and in of itself. Glenn has tried to assure me that no one will be forced into ABA and IBI treatment, but both are early intervention treatments that focus on children, as young as possible.  This means that recipients of ABA/IBI are not always given a choice, or even an informed choice, about whether they receive treatment.  In the cases where they do object to the treatment, it is often taken as more proof that the child requires treatment.  This leads to a situation where the child’s wants are not being met, in favour for the wants and perhaps ease of the parents, and even for the benefit of ABA/IBI providers. 

There is a large community of Autistic individuals who object to ABA/IBI, because of how it traditionally treats Autistics, its philosophy and methods, and the possible failure for it to equip Autistics for life in the long-term. 

Applied Behavioural Analysis and Intensive Behavioural Intervention is often toted as an effective treatment for Autistic children, usually citing studies where treatment has been found to successfully render children “indistinguishable from their peers”, which is the whole aim of ABA/IBI.  However, such treatments suppress the natural coping strategies and communication styles of Autistic people, leaving them unable to cope with everyday stresses and situations.  Individuals then experience a melt-down when entering adult-hood and are unable to cope with being independent, a valued ability in our society.  This, combined with some of the dog-obedience-school like training of ABA/IBI treatment, leaves Autistic individuals completely dependent on caregivers.  It should also be noted that this leaves them vulnerable to various abuses at the hands of caregivers and strangers alike, including potential sexual predators.  It is noted that disabled people, men and women, are more likely to be sexually assaulted than non-disabled people.

There is also the issue of quality of life of a child undergoing ABA/IBI treatment.  Most treatments call for up to 40 hours a week of sessions, on top of a child’s regular schooling and possible other therapies such as occupational, physical and speech therapy (depending on the needs of the child).  Given the other stresses in a child’s daily life, 40 hours is a lot of work for a child.  It is comparable to a 40 hour job for an adult, and leaves very little time for a child to engage in other developmental activities such as one’s regular routines to de-stress, plus a child’s natural desire to play and simply be a kid.  Myself and other Autistic individuals consider this amount of time in ABA/IBI to be child labour, and is an inexcusable stress on a child’s life.

A counter-argument to the one I just presented is that ABA/IBI is worth it if it is effective in diminishing disabling aspects of Autism in the long-term.  First, I would question what would be considered disabling aspects of Autism, and whether it is really something that is disabling a person, or whether it is society’s inaccessibility that is really the disabling aspect.  In such a case, such arguments is then victim-blaming the disabled instead of working towards becoming more accessible and accepting of human diversity. 

Second, I question the actual sources of their success rates.  As noted by researchers such as Michelle Dawson, a lot of the studies concerning Autism do not meet quality standards required by other studies.  Plus data from such studies do not always meet the conclusions made about it and represent false impressions as to the long-term effects of treatments for Autism, including ABA/IBI.  I highly recommend Michelle Dawson’s work, as an Autistic individual herself with highly informative research at the University of Montreal, plus her experiences at the Supreme Court.  Her work can be accessed at her website No Autistics Allowed.

Looking into the studies, it can be seen that when comparing treatments for Autism, ABA/IBI scores no higher than any other treatment.  Even then, the treatments are not entirely clear as to the efficiency and success in the long-term, compared to no treatment at all.  There are even some suggestions that treatments for some Autistics are unnecessary, due to the fact that Autism is a developmental disorder, meaning that development may progress in an unique manner, but does occur.  It should be noted that this does not mean that Autistics do not require accommodations and supports in the classroom as disabled students, but rather that treatments to improve developmental milestones may be misguided. 

There is one study that does highly suggest success for ABA/IBI treatment, and this is often the study that all other studies reference or depend on for proof of success.  However, that study was done when ABA was developed, and uses the original methods designed by Lovaas in the late 1950s.  Studies to replicate the results are impossible, since the original Lovaas method included aversives such as electric shock, physical restraint, yelling and hitting, purpose exposure to unpleasant physical stimuli such as loud noises, smells, and various forms of pain. These techniques were used on children and teenagers in treatment for Autism (in most cases, ironically, to reduce self-injury behaviour) and homosexuality.  Since such techniques are now illegal, current studies are unable to replicate results, and thus prove that ABA/IBI is in any way effective or superior to other treatments. 

I will repeat, the goal of such treatments is to render children to be as indistinguishable from their peers as possible by suppressing Autistic behaviours, coping strategies and interests.  Given the long-term negative effects of such treatment, many Autistic people oppose ABA/IBI due to their own experiences upon reaching adulthood.  Also given the many advances in art and technology that Autistic people have provided, I wonder whether such disabling treatments are necessary, especially if our society is striving to become more accessible, accepting and inclusive of disabled persons. 

If our society is truly striving to be more inclusive of disabled persons, including Autistic individuals, then such legislation as Bill C-218 is a grave error.  While attempting to improve the lives of Autistic people, it servers to re-enforce negative stigma and stereotypes that creates barriers to accessibility and inclusion, if not outright threatening our lives.  I think that the Autistic people in Canada would be better served if we were included in discussions and conversations that ultimately concern us in our communities and on a national scale.  There are many alternatives to Bill C-218 that would benefit Autistics more than this very flawed and limited source to a particular treatment. 

Instead of treatments such as ABA/IBI, which are extremely costly with questionable benefits, Canadian Autistics would be better served with more teachers educated in teaching methods for an inclusive classroom, access to Alternative Augmentative Communication devices and assistive technology, education in inclusive classrooms that are designed to assist students to learning everyday living skills such as cooking and nutrition.  Post-secondary students and adults could benefit from workshops to learn living skills, support groups and more opportunities to funding for post-secondary education, professional training and employment that suits their abilities and meeting their needs.  There is a lack of supports for Autistic women in particular, in support groups, self-advocacy workshops and in women’s shelters.  Often Autistic women do not know whether shelters can support them, and will remain in abusive situations. 

This is just a brief list, limited in that it is only me thinking of alternatives.  But if there were more Autistic persons involved, I am sure that a more complete list of ways that Autistics can be better served by our government will be created.  I am proud to be Canadian, but I think that Canada can do better, and that Autistics deserve better than legislation such as Bill C-218.  To us, Bill C-218 does not properly serve our needs, and I hope that you will part of including Autistic Canadians to create an accessible and inclusive Canada, and help us to oppose this bill. 

Thank you for your time,

Corina Lynn Becker

Here's hoping for a good response!