Preparing for IMFAR 2012

I know a few people who attend IMFAR each year, or at least try to.  If I remember correctly, the ladies at The Thinking Person's Guide to Autism will be there this year.  I'm also trying to get there this year.  Most of the time, I can't go to conferences and events like this, due to a number of things.

First is skills, stuff like planning.  Yeah, I'm okay when it's places I've been before, like the anime convention I've been going to for about ten years straight.  With a bit of practice, I can transfer the skills I've learned from there to other situations, like going onto the campus of my school, combined with what I've learned over the years in school.  But a lot of the time, these events take place out of my comfort zone, in areas where I have not clue how to operate or navigate, due to multiple things, like distance, lack of information and support, leading to sheer fear.

Second factor is money.  I'm on ODSP, aka social assistance, and I work part-time.  I just don't have the money for transportation, rooming, food, and registration for these things.  Especially when a lot of them take place over the border.  This leads back to the first factor, but currency exchange is a factor as well.  And again, I just don't have the money, not to do many of them.

This year IMFAR is being held in Toronto, which is only a few hours drive away, and in an area that I'm growing familiar with.  I decided not to let this chance pass me by to take a look at the research and meet some of the people I converse with online.  It comes at a good time too, because I was considering taking a break from my yearly anime convention, and this gives me an extra reason for my break.

Problem is the second factor.  The costs involved with IMFAR is more than a weekend anime convention; registration is higher and it lasts longer, meaning more lengthy stays at hotels and car rental (if applicable).  However, this is not enough to deter my decision.  At the same time, I realize that my own budget is not enough to cover all the costs, especially given that I'm also in school and have tuition to pay.

These are, as follows (tax included):
Student Non-member Registration $225 USD
Transportation by train $151.42 CAD
my share of Hotel $449.74 CAD
= ~$826.16 CAD*

That's not including food, and miscellaneous costs, like the $6 on the subway.  Given that IMFAR is being held in downtown Toronto, I can fully expect between $20-40 a day for food, unless I bring noodle cups along (which aren't very nutritious).  I never expect a venue like this to provide food, or if they do, food that I can actually eat.

Either way, IMFAR pretty much costs more than my month's support cheque, rent and all.  Alone, this would be fairly difficult for me to pay for, and I consider myself pretty privileged.  I'm wondering how anyone of the "traditionally underrepresented groups, including those from ethnic minority groups, and those with disabilities" is suppose to attend. 

 I cannot apply for an Autism Science Foundation travel grant, because I am not a US citizen, nor am I a student in autism-related graduate studies/studying in the US.  I also do not want to burden the costs of this on my friends and family; as much as I appreciate their generosity, I know that they have their own costs and needs that should take precedent over my wants.  Therefore, I turn to the internet communities. 

I am opening up art commissions and donations.   You can see examples of my artwork at my deviantArt account . 

Commissions will be for digital art only. For simple art (one character or subject), line art is $5, full colour is $10.  If you want something more complex, contact me and we can work on details. 

When you submit a commission, please include the character or subject you want in the PayPal comments box, or else your contact information. 

If you wish to just send a donation, just leave the comments box blank.  Thank You.

Click on the image to donate or request a commission!  All proceeds goes towards IMFAR costs.  If there's any left over, it's going towards tuition!

*rough estimate, given the exchange rate

The Passing of Dr Jeannette Holden

I just found out that Jeannette Holden passed away yesterday morning.  She did a lot in the Autism communities, including working on genetic research.  Of course, some of what she worked with I haven't made up my mind about, but I worked with her on the Board for the Kingston Foundation for Autism.  She always treated me with respect, and valued my input.  It was she that wanted me to sit on the Board as an Autistic voice regarding the Board's activities. 

At the last meeting that we had, she had an idea to create an art gallery featuring local Autistic artists.  She asked that I be a part of the project, given that's more or less what I did when she met me at Kerry's Place Autism Services, and my own talents as an artist.  I hope that I can continue the project, knowing that the gallery will do much to increase Autism awareness and acceptance in the community, and that would be something she would want. 

The following is the email announcement from Autism Ontario

Dear friends of Autism Ontario,

If you have not already heard the sad news about the passing of Dr. Jeanette Holden, please see the announcement below from her colleagues at Queen's University. Memories may be shared at the link below or you can click here (http://www.asdcarc.com/index.php/publisher/articleview/frmArticleID/477/staticId/1511/ ).

Jeanette was a strong supporter of Autism Ontario and was actively involved in our organization as a Chapter member, a member of our Research Committee and also served for many years on Autism Ontario's Board of Directors. In 2003 Autism Ontario also honoured Jeanette by creating the "Jeanette Holden Post-Secondary Entrance Scholarship for Siblings of Individuals with ASD." Over 60 siblings in Ontario have received a scholarship in her name.

She was a staunch supporter of families raising children and adults with ASD and brought that message to government leaders, autism committees, research forums, parent meetings, ASD conferences, and to anyone with whom she came in contact. She was a regular contributor to our magazine, Autism Matters, and joined the Ontario Partnership for Adults with Autism and Aspergers (OPAAA) in creating the "Forgotten" paper on the needs of adults with ASD.

Our hearts go out to Jeanette's family, many friends and colleagues whose lives have been impacted by her and her vision of "acceptance and opportunities for all people with ASD". She will be sorely missed.

Marg

Margaret Spoelstra
Executive Director

Ableism at the Children's Hospital

What a way to start the new year, I came across this on tumblr, and feel the need to share this as an example of ableism that exists in the world.

As seen in this post by Amelia's parents, doctors at the Nephrology department at Children’s Hospital of Philadelphia are refusing to proceed in a kidney transplant because Amelia has Wolf-Hirschhorn Syndrome, an intellectual and developmental disability. 


I don't think I have the words to express the outrage I feel regarding this.  This should not be allowed to continue.  I'm planning to try and follow the events regarding this, and give as much support as I can.  Hopefully Amelia will be able to get the transplant, and doctors will get the message that treating disabled people like this in not appropriate.

Edit:  There is now a petition to sign to allow Amelia to have a life-saving transplant.  Please sign!!

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. 

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. 

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

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 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.

my morning meds

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

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 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 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. 

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.

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.

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 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.

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, 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 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.

my bed!  Bedtime!

Ta-Da!  That was my day!