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.

Thursday, October 23, 2014

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!!

Tuesday, October 21, 2014

Citizen Autistic

I unfortunately missed the great crowd sourcing campaign for the documentary "Citizen Autistic" (William Davenport, 2014), released this month.  However, I was just contacted by Cinema Libre Studio with their press release and a chance for an early online viewing to review.  How could I say no? 

Now, my review isn't going to be unbiased. I'm an autistic activist who works alongside and has met a good number of the people interviewed in the film. I sort of have a vested interest, even though I'm in Canada and most of the specifics take place in the United States.  However, I do believe that there is an international effect to greater disability rights, and to Autistic rights, and so this film is part of that dialogue.  

Onward to the film!

At about 60 minutes long, "Citizen Autistic" is rather brief, and of course, not going to cover in complete detail every and all issues in the Autistic rights movement.  It does cover some of the current contenders.  

It opens appropriately with the National Day of Mourning in Washington, D.C., and goes on to cover the Judge Rotenberg Center, Autism Speaks, and the discourse between parents and autistic adults in advocacy work.  

Some points are also brought up are the similarities between the autism rights movement and gay rights movement, as well as bringing our rights into the greater disability rights movement, as well as how the Autistic community could possibly look towards Deaf culture and community as a model of operations.   I liked how autistic people interviewed presented different views, various perspectives regarding the rights models, but otherwise pretty much agreeing that this is an issue of human rights. 

Points about parents and autistic adults were covered with AASCEND, which was a very interesting piece to watch, and definitely frames the question of how the so-called conflict and division as very much a question of government funding, as well as a matter of being allies without taking over the movement. 

Lastly, in some of the final comments, Ari mentions using one tenth of research funding to fund AAC devices, for communication that'll improve quality of life.  That's just one tenth from research, diverted to practical applications that affect autistic lives. 

So those are the main points that really stood out to me.  It's a short film, as I've mentioned before, but I think it does a really good job covering various perspectives in the time frame that it has.  Are there more perspectives in our community? Are there more issues that affect us?  Of course, and this shouldn't be the one documentary about autism advocacy that gets made; why not make more?

But I watch this, and I nod along, because I see my community, I see my fellows represented, I see our voices represented, and I have hope.  I have hope that this is just the start of our representation.

And I'm so going to go order a couple copies of the DVD now.

Friday, September 12, 2014

2014 ASDay and AWN PoC Anthology

[Originally posted on Autistics Speaking Day Blog Sept 12, 2014]

Hi all!

I know I have a few submissions from 2013 I need to post.  Sorry for the delay, I got delayed for too long.  But I am going to post them.  Just as soon as I finish this post.  

I'm getting ready for ASDay 2014.  It's on a Saturday this year, and I wanted to let people prepare in advance, to think about what they're going to do.  

At the same time, there is something I think that is important that may or may not appeal to participants.  But this is really important.  I know that ASDay matters to a lot of you because it gathers many voices in a large event, as well as other reasons, but I'd like to take the opportunity to address another opportunity coming up soon that people may want to concentrate working on. 

I'm going to have to disclose, of course, as I am Vice-President of the Autism Women's Network.  But AWN is working to publish an anthology on Autism and Race, and is looking for submissions, due November 14, 2014.  If you are autistic, and a person of colour, racialized, or non-white, I encourage you to look at the AWN submission guide and consider submitting something. 

This is a project lead by Lydia Brown, aka Autistic Hoya, who I don't know about you, but is one of the people I'd immediately ask "how much do you want me to write, and when do you want it?" if not go scrambling to look for something I've already written.  

But this is your choice.  I understand either way.  

What matters is you expressing yourself, your story, what you want to say about yourself as an autistic person and your life, what you want to tell other people, what you want to change about the world.  This is about you communicating and gaining power through that, about providing an outlet, a starting point.  

ASDay has been described as a blogging carnival, a festival of our "voices", our passions and dreams. It is a celebration of who we are, a memorial of our scars, a scream of our struggles, a rallying cry to continue on for our rights. Because of the most powerful words "I am not alone". 

Intersectionality is how different aspects of our identities affect our experiences, sometimes in different ways in different situations.  Like being a woman can be a privilege in one situation, or be a barrier in another, or being a person of colour, or being disabled, rich or poor, and so on. 

The anthology matters because for too long has books and Autism materials about us been dominated by parents, professionals, and white people who do not represent all experiences of autistic people.  I see it every time I walk into an Autism conference center and look at the book displays.  How can we be "Nothing About Us, Without Us" without all of us being published, without all of us being represented?

 It cannot happen. 

Not without projects like the Autism and Race anthology.  

Either way, I look forward to seeing your work!!  

Saturday, August 30, 2014

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. 

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.