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

NeuroTribes Review

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

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

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

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

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

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

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

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

Autistics Speaking Day 2014

Originally posted on the Autistics Speaking Day blog

I know I'm late running for ASDay 2014, but I have most things in order!

For one, the submission form is now open and ready to take submissions.  And the Facebook event page is online.

And as always, I do advise people to review our FAQs and our Content Filter List.

I know it's only about a week until Nov 1st, but let's have a great day!!

Autism and Grief

Yesterday I put to rest my childhood cat, Nibbles. Amongst many things, it has me thinking about grief, and the mourning process.

Now, one of the most hurtful things I have come across when I learned about being autistic was the concept that autistic people don't feel the same level of grief for people or pets, because we don't show the same reactions that non-autistic do.  And this is reason to believe we don't have the same feelings as other people, and all that nonsense. 

When, in reality, it's more of a difference in grieving expression and process.  Like all new rhetoric regarding autistic emotions and expressions, this includes grief and mourning.   Now, obviously, each person is going to have their own process; what works for me might not work the same way for someone else.  However, the stages of grief more or less are the same, and what is the same for everyone is that we all need time and space to process our grief, whether alone or with other people.  

What is important for family members to know, for autistic people to know, is when to offer help, when to let people be to mourn by themselves, and ask for help. 

As someone who has lived through the death of three grandparents, a baby goddaughter, and now three beloved cats, I am no stranger to grief.  It does get easier each time to go through the process, although the pain is still just as deep, just as terrible, for each one.  It is the sudden deaths that adds shock, denial, and dismay to the grieving process and makes it so much harder.  Knowing that a grandparent is old and sickly for a long time does give one time to prepare ahead of time, as for an elderly cat.  

I have found that I do two types of crying, to go along with two modes of my mourning process, my private and public modes, that I'll move back and forth during my grieving.  

I do most of my crying in private, I prefer to be alone to cry and be silent.  Emotions, especially strong emotions like grief can be overwhelming raw, and way too much to be shared.  So I prefer to be alone when expressing my deepest pain and sorrow, unless I have no choice or it's too big to be held back.  

When in public, sorrow will slip out, whether I've pulled myself together enough to talk about it, or it just slips out a bit.  I know that there are some days where I'll be crying off and on without prompting.  And then talking about it, cause I need to get it out.  I call this my public mode, cause it's grieving sort of publicly.  It helps to be with trusted people, but I've been known to just start talking to anyone to get it out.  

If I do public mode too much, I can sometimes get overwhelmed and need to retreat into private grieving.  Emotions are raw during mourning.  Things are sensitive.  I know I move more slowly, I'm unable to do some of the things I used to be able to do before, especially social things.  I do try to keep my schedule, keep to a routine, cause it helps keep myself from completely falling apart mentally.  But I forgive myself for not being able to keep up with social events, for mental health things.  And I do what I can to make sure I'm taking care of myself physically, like going on walks, eating and taking meds. 

I know that the issue of when to offer supports, and when to look for supports comes up, since when does grieving become depression.  It's a bit different for everyone, and everyone takes different amounts of time to process and go through the mourning process.  First, I would offer being there for the person in mourning, or bear in mind that there is help if you need it.  But don't push.  

Grief becomes problematic when it starts to negatively impact your life, even if it doesn't become depression.  Don't expect to overcome grief in a few days, or even a week.  It may take quite a while.  But if it is having some major impact in your life, you might think about seeking help.  Remember that while seeking help, you are in control, you are a client, a consumer.  

The best list I have found for when to seek help comes from Jim Koeneman of New Life Grief Counseling, and is the following: 

1. Have you lost the ability to enjoy things that used to provide you personal  satisfaction?
2. Do you find yourself not wanting to be around your family and friends because you believe you would “put a damper on the party”?
3. Do you find yourself constantly thinking of your loved one after several months after his or her death?
4. Are you afraid of becoming close to new people or even with existing family and friends because you fear of losing them at some point?
5. Do you try to keep yourself constantly busy so that you won’t think about your loss?
6. Do you feel numb to your normal emotions?
7. Are you unable or unwilling to express your true feelings about various aspects of your life that used to be very important to you?
8. Do you feel stuck in your grief, unable to move on, even though it has been quite some time since the death of your loved one?

The best way to find a therapist I find is to meet with them, get a good feel on whether you can easily talk to them, can work with them.

But it's never a good idea to force someone to meet with a therapist; it has to be them willing to go, them willing to talk and to take those steps for the healing to happen.  

We may express our grief privately, and we'll be, well, not exactly okay, because we've lost a loved one, but mourning is natural and normal.  It's healthy.  It's exhausting, but it's healthy. 

April Transitions

This is a more free flowing thought post.

This past month has been busy, and the next month ahead is going to be just as busy, between work, school, research, grant applications, various traveling, and moving into a new apartment!

Even before April was known to me as Autism Awareness/Acceptance Month, it's been a bad month for me; it's the month that mental health issues just get triggered a lot. And this year has been a bad year.  So I turned off my email client (I have over 10 email addresses, by the way) to manage the stress of apartment hunting, work, health issues, and just plain Autism month stuff.

Since April isn't Autism Awareness month in Canada, although some of it has been creeping through via the sponsors of Autism Speaks, I also don't have much incentive to be active unless I have the spoons to do so, mostly online.  So when I checked my email at the end of the month (wow, over a thousand email messages), it was no surprise that there was quite a few April Autism Awareness specific ones for this blog, wanting to be quest interviews, for me to review books, cover certain questionable stories, etc.

The fun part is that most of the people approaching me are approaching me with stories that I will never, ever cover.  Yay, you're publishing another book about raising your autistic child.  That's not something I cover.  There are plenty of people who have written about raising us, what about autistics raising autistic children?

I get quack treatments and stories that are highly questionable, like ECT (electroshock) to treat autism (by the way, that's medical malpractice, if not outright abuse), and if anyone had done their homework and realized that I'm on the side trying to get the Judge Rotenburg Center closed down and know my Mad People's History, they would know not to even email me.

And then I'm getting some emails about medical practices in general, that are totally out there, and I'm wondering how in the world they decided to email me and thought it would be good publicity to have me pick them up on my blog.

I wish some of this stuff was new, but it isn't.  It all looks like some of the same old stories that I've covered before.  I don't feel burned out, I just don't see the novelty of writing new articles for what is essentially the same issues.

In the meanwhile, there are things like health, both physical and mental.  I won't go into details, but even the small things can wear you down.  Shifts in something here and there can have great impacts later on.  And then sudden things that happen all at once, but then the effects don't go away.

I called this post transitions, cause I wanted to talk a bit about my moving.  It's a big transition.  I've been living in the same place for four years, the longest outside of living with my family.  The house I'm in is run by a non-profit organization, for people with developmental disabilities, with mental health issues, and with addiction issues, and those who would just be otherwise homeless.

Housing is set up in area of needed support.  So it's also considered supported housing, from more group home settings, to my level, which is the highest independent level they have.  We have a case worker assigned to us, to call if we need anything, a 24 hour line, maintenance crew (dependability depends on priority; been waiting four years for all of my windows to be totally fixed; non-profit = not a lot of money for fixing things), but otherwise left alone to handle ourselves.  If we wanted to, we can all chip in for a cleaning lady once a month, but generally people are capable of handling chores.

My experiences in the house have varied depending on my housemates.  I used to have to lock my fridge and cupboards until a housemate was finally evicted (four years, still haven't gotten compensation for what she admitted stealing; hey let's talk about how the law isn't always on your side if you're disabled). But also not so bad ones; I've learned to take care of myself, how to read body language better (I hope) and trust my gut about people.

I started this post in the beginning of the month, and now it's in the middle.  But I've outgrown my current living situation, and am moving onto a new place, my first apartment, a one-bedroom unit situated perfectly for me to get to work, social groups and services that I need.  Perfect for the long term, people might think, right?  Most adult support services will be satisfied that this is the end-goal, that the rest is daily living, to continue with my job, my friends, maybe work more and get me off social assistance.

But it's not enough for me, cause you know what, development doesn't stop.  Life transitions don't stop.  And I got my own plans.  This is my own place, for me to spend some time on my own.  My little bachelorette, if you will, before getting hitched.

And I know that adult support services aren't prepared, or at least aren't always prepared for clients who needs supports through marriage, and child birth, and childcare and child raising, and buying a house.  But they really should because after all, don't they know that people are a spectrum?  

Let's Talk About The AODA

I'm finding that people inside and outside Ontario don't know what the AODA is, and especially Ontarians, that's not good, cause the AODA is a big thing.  I'm taking a course on it right now, so here's what I got so far. 

AODA stands for the Accessibility for Ontarians with Disabilities Act (2005).  It will eventually replace the also-in-effect Ontarians with Disabilities Act (2001), which applies only to making government accessible.  The AODA affects not just the government, but everywhere else.  

The goal of the AODA is to make Ontario completely accessible (or as reasonably accessible as possible) by the year 2025 in customer service, employment, information and communication, built environments, and transportation.  This includes the public sector (government, education, medical, religious organizations) and private sector (businesses). 

Basically, the government of Ontario recognizes that 1 in 7 Ontarians are disabled (approximately 1.7 million Ontarians) and that this number will rise in years to come.  Especially with the aging population, it's been estimated that about 60% of the population will be disabled.  And the province needs to be accessible, to follow human rights, equality, participation of citizens and to change perceptions on disability. 

What's exciting about the AODA is that it was created by non-political people, people who usually don't get involved with government and it was unanimously passed by government.  It is legislation from the people, rather than from the government.  It takes the burden of accessibility off the disabled (in theory), and makes it an issue of the province.  So instead of having to fight for Accessibilty case by case, violations of the AODA are seen as a crime against the province and the province is responsible for pursuing crimes of inaccessibility.  

So how is this suppose to work?  Well, there are five committees, for transportation, employment, customer service, information and communication, and built environments.  These committees release standards that various businesses and organizations have to meet by certain time periods.  For example, just this year, the standards for large businesses and non-profits came into effect.  They have to meet these standards, or, failing an inspection or non-compliance, face a fine of $50,000.  

Smaller businesses have more time to comply, but there's still arguments saying that the government should help them to achieve accessibility on time.  

But part of compliance is to submit a report, I believe every five years, the same way that the standards are reviewed and renewed every five years.  But this is why you'll see hospitals, schools, and businesses releasing accessibility plans on their websites in Canada; it's part of the AODA that they have this information available to the public.  They also are responsible for training their staff.  

Municipalities with populations over 10,000, and places that want to, are required to have an accessible advisory committee.  These people advises the municipality on leases, purchases, constructions, and renovations of buildings the city is in charge of, and to review the plans and drawings of development projects.  

There is also an Accessibility Directorate of Ontario.  This person is in charge of accessibility in public education.  I'm not entirely sure how they are suppose to work yet, to be perfectly honest.  

Yes, the AODA has some problems.  For example, as mentioned in the Beer Report (PDF) there are issues with government leadership and involvement, notably with compliance and enforcement.  There are also issues with harmonization between the standards, with confusing overlaps and inconsistencies.  Think about how transportation and built environments must overlap, or customer service and built environments, or employment and customer service.  

There are also issues with awareness.  A growing number of news articles report disabled people being turned out of restaurants with their service animals, because the owners weren't aware of the AODA or refused to acknowledge a service animal.  But there's also public awareness that the AODA is a part of their legislation, that accessibility is part of their rights.  

Obviously, the AODA isn't in complete effect yet, and what is in effect is not perfect.  However, it's suppose to be elections in the next year or so, and this is working to make a difference, not only for current disabled people, but for the future as well.  

For more information, I do recommend reading the Beer Report (PDF) as it's called, as it is a good breakdown of the AODA.  For AODA news, I recommend the AODA Alliance. 

What's the Point of World Autism Awareness?

Autism awareness, I have to ask, what are you doing it for? What is your point? In the words of many a university professor, so what?

If you’re doing it because it’s the “right thing to do” or the cause of the month, because it gives you a warm fuzzy feeling and a pat on the back, just stop. Especially if you’re cutting off and silencing Autistic people. Stop, and pick a different cause. Thanks, but no thanks. We don’t need no crocodile tears, no false allies distracting the world from what really needs happening.

Go find yourself a cause that affects you personally, or learn what’s truly important about autism awareness.

I’ll tell you a secret, or rather, not a secret, if you’d pay attention. It’s not actually about the autism awareness. Oh sure, increased awareness seems good, less of us slipping through the cracks, more of us figuring out who we are earlier, how to function, how to navigate the turbulent and disabling seas of society.

But there’s a down side too. It means THEY can find us, the bigots, the bullies, our rapists, abusers and murderers. You think I’m joking? You think I’m being over dramatic?
The statistics say otherwise. In violent crimes involving autistic people, autistic people are mainly the victims. In general, disabled people are ten times more likely to be victims of violent crimes than non-disabled people, ten times, with just the crimes that are reported. Studies have noted that disabled people often have no confidence in the police and the justice system, so crimes they face are often not reported.

At least ten times. Think of the statistics on rape, on violent crimes, on murder. At least ten times more likely. You should feel sick.

Awareness is not enough. Allies is not enough. What is the point?
The point?
The point is this: I think, therefore I am.
I am a human being. I am Autistic.
I am an Autistic person.
The point is that as a human being, as an Autistic person, I have rights. Human rights. Disability rights. Autism rights.

I refuse to add the “self” to advocate, to my activism, because I am not advocating just for myself, but for every Autistic person alive, now and future generations. For our rights as humans, our rights as Autistic humans.

So what? What’s the point?

The point is that without acceptance, without human rights, autism awareness is worthless. You may not like each and every one of us personally, but we have human rights. And it is my right, as a human being, as an Autistic person, to decide my own future. My future, my choice.

Nothing about us, without us.
It’s as simple as that.
At the front of any conversation regarding Autistic lives should be Autistic people. It is our lives, after all, that are ultimately affected by any decision. We are then supported by any support staff, family members, caregivers, professionals, academics. Scientists may research merrily, but when it comes to affecting our lives directly, we have the final say. Our lives, our choice.

So the point? It’s not autism awareness, it’s Autistic awareness.
Here we are. This is what we want. Our rights. Our lives. Ours.
Ours. Period.

Autistic People Should

Autistic People Should is TODAY

A flash blog event reacting to the negative auto-fill when one searches "Autistic people should" and "Autistic people are".    



Autistic People Should  is Today, February 23.  

Autistic People Are is March 2.


I will be participating as much as I can, given that I'm technically down with a cold and have an essay for class.   


I have my tumblr, and my twitter.

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

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. 

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!

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!

~Corina

Buttons!!!

I love buttons, the pin kind that I have a small collection of, and the image kind for links and stuff.  I've been busy working on assignments for school, but I do manage to browse a couple of places online, and decided I need a button.  So I made one. 

Feel free to use if you link to here.


And in other news, April is Autism Awareness Month, apparently.  Huh, that time of year again.  I always have fun with this, because I'm in Canada, and usually we have an Autism Awareness week sometime in Fall....

April is a rough month for me, to be honest.  The demands of schoolwork aside, it's an emotionally rough month.  April 1st is the anniversary of my Grandpa's death, and that was an event that deeply impacted me.  Each year, when it comes around, I am always struck with great grief.  Some years are better than others, some years I can get by just fine, other years I am struck with depression and anxiety, which shakes me up pretty badly.

Hopefully this year won't be so bad, but please excuse me if I'm a bit absent a while longer. 

I have written a piece for The Thinking Person's Guide to Autism for April.  I'm not sure when it'll be up, but I'm pretty sure that it will be, and I highly encourage people to check out all the stories they'll be posting for this month.

Poverty and Affordable Housing

This may seem a bit off topic-ish, especially with the news about Wakefield going on. To be perfectly honestly, I'm not entirely surprised that he's been found to have changed the children's data and it really hasn't changed my opinion about him (see The Triggering of Wakefield). So I'm going to continue on and address an issue that affects a lot of people, not just Autistic people.

Poverty and homelessness is an issue that face Autistic people, as well as people with and without other disabilities. A concern for those with disabilities is whether homeless shelters, women's shelters and other services are supportive of their disabilities, and uncertainty may be a big factor in whether disabled people access such services. Which kinda creates a cycle unless it's specified that services are accessible to disabled people.

My government has been working to create unique programs and services for people with disabilities specifically. One of these has been the Ontario Disability Support Program (ODSP), a social assistance program that provides the basics: a little over $500 for living costs such as food, telephone, etc, and up to $450 for rent, per month. It's basically a safety net for people with disabilities if they are between jobs, or recovering from a bad period, and the program even includes an Employment Support services, and will cover some additional medical costs, such as service dogs, diabetes supplies, breathing machines, etc.

For the other services it doesn't cover, being on ODSP qualifies people to other programs. There's a lot of paperwork involved, of course, and it requires people to be as productive as possible while describing their worst days. But one of those programs in my city is the centralized housing list for subsidized housing, since $450 doesn't get you a decent place to live in this area.

The problem is that there's a lot of people on that wait list. My city does a magazine, profiling restaurants, venues, and highlighting city issues. In the latest issue, it reports that as of July 2010, there are 1,133 applicants currently waiting for access to social housing. With the given rate of vacancies in the city, it can take at least six months for a three- or four-bedroom unit, or up to eight years for a single-room unit.

Obviously, there needs to be more available units and in the magazine article, the issues surrounding making decisions on where to build mixed-income housing is discussed. However, due to various difficulties (such as the city's own zoning and building restrictions), it can take up to eight years for many housing units to start being built. In the meanwhile, there's still a lot of people waiting for places to live and call home.

I faintly recall a few years ago a plan to start a portal subsidized housing. The idea is that people on the housing list can find a place to live on their own and get off the housing list a lot quicker.

It's like this: say I'm on the housing list. I've gone through the application process and have been approved for social housing. Instead of spending eight years couch-surfing or hopping between shelters or enduring abusive situations, I can look around for a place that meets my needs.

After some looking, I find a nice apartment that's easy for me to access the public transit system, a grocery store, as well as other services, or at least to be able to get to other services. I'm on ODSP though, and can only afford $450 a month, and the apartment is $750 a month.

I talk to the landlord/lady/person, and make an agreement with him that he'll hold the apartment while I apply to the housing list. Then I fill out a form, asking for support for the other $300 for rent from the social housing program. The landlord/lady/person and I fill out the details of the place, sign it, and submit it. If everything checks out, the housing list approves of it, and there you go, I have a place to live and I'm off the housing list a lot quicker.

Of course, I don't know all the specifics that this would have to be put into place, but I think it's better than a waiting game where one never knows when they're going to have a place to live. Also, it gives the people a sense of respect, dignity and control over their own fate.



Edit: minor editing over the difference between rent and ODSP; I really can't do math in my head.

Recipes for Autism Hope

I'm going to be extremely honest; there are some things about myself I don't like, and one of them is how I'm still angry and hurt over the Autism Speaks "Autism Every Day" video, especially the parts with Alison Singer.  However, I understand that she's changed, left Autism Speaks, and started the Autism Science Foundation.  Recognizing this, I am working towards healing the hurt I feel and beginning the process to forgive her.  I hope that one day I'll be able to fully forgive her, and I am very glad that I've made this decision.  

Because really, there needs to be more science-based knowledge about Autism, and I think that the Autism Science Foundation plays a key part in "providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research" and contributing to Autism Awareness. 

They consider strict scientific standards and values to be essential in Autism research.  This is crucial to understanding Autism as it makes as sure as possible that the results are accurate, and better understanding means better approaches and supports in our communities.  Truly, this is one of the best gifts that can be given to families and individuals on the Autism Spectrum.

Currently, ASF is raising funds with Recipes4Hope, and every dollar raised will go towards science-based Autism research dedicated to discovering better ways to recognize Autism and implement better supports and enhance the lives of Autistic persons.

With the hope of a better future for all Autistic persons, I encourage everyone to contribute as you wish, to donate if you can, and to spread the word as far as you can.  

Meeting the Autistic Artist

I don't think I've mentioned it a lot here, but I also do quite a bit of artwork, and sometimes I let people see my work. For the past month and a half, I've had a lot of my work at the Kerry's Place Autism Services Resource Centre in Belleville, Ontario, as part of the Spectrum Art Show. I kinda started the Show five years ago when I worked for KPAS.

Tomorrow, November 30th, I'll be at the Resource Centre from 2pm to 6pm for a "Meet the Artist" event. I'm being presented as an Autistic artist and Autism advocate.

If any of my readers are in the area, and have the time, it'll be awesome to meet some of you!


(yeah, a little last minute, I know. I'm sorry)