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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.

Monday, May 12, 2014

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?  

Friday, November 1, 2013

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. 


Saturday, October 19, 2013

Expanding the Battery Levels

For the past year, I've been working on an app that is based on Spoon theory and my connecting it with batteries, Autism, and my expansion on spoons.  Initially, this started as an assignment for class, but I feel that this can benefit the greater Autistic and Disability community.  

However, I need some feedback, so I need some help from you, dear readers.  One of the steps has been to develop stages of the "battery" that drains towards meltdown/distress.  What I need is feedback about the definitions of these stages.  So, please, read the following, and leave your constructive criticism; meaning, suggestions to make them better.  



Blue: perfectly fine, calm, relaxed, under control and fully recharged, refreshed. Bliss (realistically, this state is probably only achieved for a short period at the beginning of the day, if not in a week.  However, while rare, it is achievable, and thus included on the battery chart)

Green: active and working, but still energetic, managing drain on resources ("spoons"), still collected if not completely relaxed and calm.  Go (probably the more realistic starting point for a day, this is what in clinical medical language would be called high-functioning and is the impossible to maintain goal of therapy and interventions.  That is to say while it is difficult if not outright impossible for most neurologically typical persons to maintain this level of functioning and stress management, it is not impossible to achieve this for periods of a time.  As such, it is included on the battery chart.)

Yellow: feeling the drain more, needing breaks but managing with self-care skills and sensory management.  Ideally, this is the lowest that a person would go on the battery chart.  However, life is never ideal.  Instead, it is the general goal of the app to build the self awareness of autistic people and others who experience meltdowns, as well as give them the tools to communicate, in order to managed their meltdowns.  It is the hopeful goal that in time, they will less likely to past this point.  This is the draining, but managing point, where skills and tools are being used at their most and the person is holding on.  Probably cannot maintain this stage for too long, but long enough to get what needs to be done and get to a safe spot for decompression.  

Orange: the end of resources and need for considerable time to recharge as soon as possible if not immediately in order to stop a crash and/or meltdown.  The person needs to get to a safe spot, because they are running on reserves and feeling overwhelmed.  Everything is becoming overloaded and they don't have the emotional, mental, and physical resources to deal with it.  At this stage, there is a slim chance of stopping a meltdown into a mild crash, but only if action is taken immediately. 

Red: point of no return.  If it hasn't already happened, then a crash or meltdown is going to happen soon and the person is trying to delay it as much as possible, which often only makes it worse.  The person needs to go to somewhere safe, to be able to decompression, potentially "regress" and release of emotions and overload.  They need to "let off steam" in the way that suits them best, usually left alone, and then be left to fully recharge.  This can take a long time, depending on the amount of drain they are experiencing and their personal rate of recharge; downtime/ recharge time should be included on info card.  

~ * ~ 

Thank you so much for all your assistance!  And feel free to spread this around, I want to get a lot of feedback for this.  

Monday, July 8, 2013

Conferences and Awards

Hello all, sorry I've been so quiet.  I've been studying, and then taking things easy to recuperate and prepare.  


This July, I'll be in Pittsburgh, PA, for the 44th Annual Autism Society Conference, giving a presentation as part of the Autism Women's Network* on needs and issues of autistic women throughout the lifespan.  While the conference runs July 10-13, our talk will be Friday, July 12 at 1:45 - 3:00, in conference room 303.  We're very pleased to see that membership for the conference for autistic persons is free and that interaction badges are available.  

I'll also be looking for quiet spaces.  

At the same time that the conference is happening, I've been selected to receive the Bill & Lucille Owen Award in Public Policy at Ryerson University Disability Studies.  I won't be able to receive the award in person during the ceremony on Tuesday, since I'll be on a plane to the conference, but I'm told that everyone at my department is excited for me.  

I'm just amused that I applied for one award, and was selected for a totally different one.  But it will definitely help pay for school in the next year.  Aaaah, it takes some of the burden off to know that I got the award, and since I just sent in my course selections, I'm looking forward to the Fall!!  

But yes, I hope to see people at the conference next week!!  

Tuesday, April 2, 2013

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.

Saturday, February 23, 2013

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.

Monday, November 5, 2012

Goal Reached!

My ChipIn goal has been reached!

Thank you all who contributed!!!

It'll take a few days for the money to clear from Paypal to my bank, but it shouldn't be more than a week.  

I'll be covering the taxes myself; I figure it's only fair that I do pay some of the costs myself.  And with all of the support I've gotten with everyone, it won't be quite a burden on my limited funds! 

Now comes the fun part; what colour should I get it in?  Hmmmmmmm.....