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.
Emailed this afternoon, Feb 6, 2019, to several members of Ontario government and two staff at The Star. Honoured members of Government, members of the Press, and to Those Whom This Concerns,
Recently, the Ford government announced the decision to overhaul Autism service provision in Ontario. One of the goals in the overhaul is to address the extremely long wait list for services implemented during a crucial window in a child’s development. As often pointed out in early education and development, what happens in the first six years of a child’s life has lasting effects on the rest of their lives.
However, myself and other autistic people across Ontario are concerned and would like to take the opportunity to address those concerns.
We are concerned that the currently announced amount of direct funding will not be enough to support services for all needs and supports throughout the year. We are concerned that there will be an age discrimination on the direct funding, that this will affect late diagnosed autistics such as older children, teenagers, adults and seniors, who are also deserving of support and services in Ontario and throughout their lives, in education, employment, health care, and daily living.
We have concerns about the resources that parents have in making decisions on spending their direct funding. We want to make sure that they know of all of the options available to them, that there are services and supports that are less stressful for themselves, their families and their children that are possibly more cost efficient, suit their child’s needs, and backed by scientific research.
Parents have a right to know that ABA is under scrutiny by current autism research for its possible contribution to the high rates of mental health issues in autistic people, and that studies arguing for its efficiency do not look at the long term effects. Parents have a right to know that alternatives exist, and we are concerned that there needs to be resources and information available for them to make those decisions.
The International Society For Autism Research is having its annual meeting in Montreal this May. I know that myself, researchers, and other attendees would appreciate if autism research regarding practical supports and services would be put into direct funding policy to positively affect the lives of autistic Ontarians. I have no position of authority to invite members of government, members of the press, parents, or any other interested persons to the annual meeting, but I highly recommend doing what myself and other autistic people do; talk with researchers and pay attention to what has been discovered in relation to the narratives of autistic adults and autism research.
I encourage politicians, parents, and all involved in these policies to pay attention to autistic adults who have been working with researchers for years. We wish to create better supports for all autistic people throughout our lifespan, from babe to old age, and support all of our needs and methods of communication, whether low or high, whether speaking, signing, texting, or AAC.
I've noticed you've made some words changes on your mission statement lately. You've replaced "cure" with "solutions" and included "acceptance". Some people are calling this a big shift for your organization, myself and many other autistic people don't think so.
While I have no doubt that you aim to stop the autistic people boycotting you and your sponsors, this is not the only change that needs to happen. For us to accept that you truly are changing, there needs to be more than just words. There needs to be actions as well.
There needs to be systematic changes to how your organization is structured, how it is run, in the decisions it makes, in how it spends its money.
In short, these are just words; what do your actions say?
How I can believe that you're making changes, when you still support ABA as a treatment? When you support research looking into autism and immune systems? When your organization still doesn't have autistic people in decision making positions? When you've pretty much not made any other changes? When you haven't apologized for the way you've demonized us, treat us as tragedies, cite inaccurate statistics about us? When I still see first-person language used, I can still see medicalization in your information about us, despite so many of us demanding that you do otherwise? When you otherwise ignore autistic people and fail in so many ways to support us?
You want to change? Show us you can actually change. Until then, we're not falling for your superficial gloss over, your charade. You're not actually supporting us, you're not actually listening to us, and until there is fundamental changes, you never will.
Back in April, I was approached by a colleague of mine on Twitter about being interviewed by a reporter for the Toronto Star. The story was about the recent changes to Ontario funding to ABA/IBI. If you aren't aware, Ontario just stopped direct funding for ABA/IBI for over the age of 5 years old, with something of a hazy declaration for more funding to other therapies and supports.
Which, pro-ABA/IBI people don't like, cause the parents have been told that this is the only thing that works, and the professionals, well, they have an industry, even if they mean well, it's an industry that causes harm.
Anyways, the reporter of the article was looking for autistic points of view, and found me. I prefer email interviews, which has upsides and downsides. Downside, no nice sound-clips to put on the radio. Upside, despite only having a couple of my sentences actually used in the article, I have the entire email interview to post.
I understand that the reporter may not have had complete control of the editing process; pictures and stories of children sure are more appealing than those of a 31-year old autistic woman, after all. But I like being fully represented, signed no documents to keep the interview quiet, and so I retain my rights to publicize my side of the interview.
And here is the complete interview that I gave them:
You wrote that autistic narratives and issues are being completely overlooked in the discussion. Can you elaborate on what is being left out that most concerns you?
1) In Canada, there has been a silencing of autistic narratives. It’s subtle, but it’s there. It can be seen with how there are barely any services for autistic adults, for autistic women. It can be felt with our absence in discussions about our lives, our past, present, and future. But autistic people notice it acutely, as this absence affects our lives, in the supports we receive, in how organizations and support staff treat us. And the only real cure for this is for us to a part of those discussions, part of the decisions made by support organizations and provincial committees, to have our voices and narratives be included in all the ways that affect our lives. To put it simply, I am a Canadian citizen, myself and other autistic people want to be part of the process in shaping our futures in our nation.
Do you have an opinion about ABA principles or IBI, and the belief expressed by many parents that their children's futures depend on intensive behavioural intervention?
2) There are two problems with ABA and IBI; that it is the best chance for an autistic person’s future, despite a lack of scientific and ethically sound evidence, and that ABA/IBI principles are based on wrong assumptions regarding behaviour and autistic people. ABA/IBI is based on behaviourism, which states that if you change a person’s outward behaviour, you change how a person thinks. It was this same premise that created gay conversion therapy, also by the creator of ABA/IBI, Ivar Lovaas. We no longer think of autism as a mental illness, knowing that it is neurological wiring, how our brains work, but the premise of behavourism still remains in ABA/IBI. Thus, ABA/IBI doesn’t really teach life skills, or offers the best hope for an autistic person’s future, but teaches that our behaviour, our way of thinking and acting, is wrong and must be eliminated, often with a lot of traumatic stress. The accounts of autistic survivors account for a large percent of PTSD caused by ABA/IBI therapy throughout their lives, and the fact that these narratives are ignored does a huge injustice for the survivors, present autistic children, and future autistic people.
But autistic children are given poor prognosis, with claims that ABA/IBI is the only chance they have, when, quite frankly, this just isn’t true. So the decision about ABA/IBI in Ontario has mixed results; a decrease in focus on ABA/IBI, and some encouragement to look into other supports and approaches for autistic people.
What are your thoughts on what the provincial government's priority should be when it comes to meeting the needs of children with autism and their families? Can you talk about your own experiences -- what supports you think were most important as a child, and what would have helped that you didn't receive?
3) (tying in a little from above) What the provincial government’s priority, and all service providers, need to do is look into services beyond ABA/IBI. It does not help that a lot of current research is into what causes autism, and few little is researching what helps us throughout our lives. Listening to what autistic adults say about what services we need as adults is one of the steps to providing supports for autistic teens, children, and elders. I would like to see more supports for non-verbal communication, in conjunction with mental health and emergency services, as well as dealing with issues about racism, violence against women, and poverty, as a start. Ideally, the supports we receive as children should transition with us into adolescence, adulthood, and into old age. Yet, there are hardly if any services for adults, and they do not support the full range of abilities and impairments that autistic people have.
Do you have suggestions on how to better include the voices of Ontario people with autism on this particular topic and in media stories? When we're talking about the specifics of IBI this can be challenging, as older teens and young adults who have experienced the therapy aren't always able to recall the experience or express how it affected them
4) When talking about autism, parents and professionals are usually the ones taking the stage right now. However, I think there is a huge disservice by not including the voices of autistic people, in government decisions. Parents, professionals, and other caregivers want what’s best for their children, whether age they might be, but it is autistic adults who can say “this was harmful for me, these other supports are more appropriate” or “making these changes to a classroom would have helped me”, because we’re the ones with direct experience. It just makes sense to ask willing autistic people for advice on what needs to change in policy and practices. And for this to happen, people also need to be open to various styles in which someone’s narrative is expressed, not so much dependency on speaking, but valuing other methods of communication.
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.
I've written about Disability and poverty before. And now we're getting in to the election season here in Canada again, so it's a topic that's coming up.
housing: geared to income shared housing is the ONLY thing you're going to be able to afford on the under $500/month that these programs give you
yes, that does not work with some people's mental needs, sucks to be them (and if I had enough money to change that, I would)
Transportation: $141/month? so not happening.
if you're not working, you probably can limit your bus trips to once/week and budget accordingly. yes, if you're disabled but the government hasn't admitted it yet, you're kind of screwed 'cause you won't be able to get your laundry AND groceries AND appointments all in that day
if working, you probably want to get a discounted bus pass (yes, Kingston, and hopefully other cities do give a discounted monthly bus pass to low-income persons. I advise you/your workers look into this)
Groceries: I manage to get groceries for about $200/month (or at least I spent $200.14 on all food in the month of May 2015)
tips: things like the Good Food Box Kingston are your friend; cooking big batches and and freezing the leftovers is your friend; lentils, beans, pork and potatoes are your friends; pasta and rice are your friends; buying in bulk as much as possible is your friend; if you will eat sausages/baloney/hot dogs/liver/tongue etc, they are your friend; dairy, fresh/frozen fish, high quality cheese, chocolate/candy and soda pop are your enemies, buy as few as possible of those (though do get yourself some single serving yogurts and either sour cream/ice cream/cheap cheese so you aren't missing out on calcium etc), also avoid any beverages but water, tea/coffee, water w/ flavouring
if you are on OW, you CANNOT afford to eat out unless it is at a soup kitchen, you will NEED a soup kitchen (and yes it sucks), and you may need the food bank. If you do not take advantage of these services, YOU WILL GO INTO DEBT. You do not have enough money to AFFORD to go into debt. USE THE FRICKEN SOUP KITCHENS/FOOD BANK.
Entertainment and Dining Out:
if you are on OW: FREE THINGS. do ALL OF THE FREE THINGS. let yourself have about $10 (aka ONE film/cheap eating out) PER MONTH to keep yourself from going crazy
yes, you will go into debt that way. do it anyway
ODSP: you can eat out two or three times a month if you keep it at or under $12 per time... you are allowed to substitute a film or show for one or more of these. if you are careful, you can do ONE convention/holiday where you pool money w/ others/stay w/ friends PER YEAR. Choose wisely, set your budget ahead and save $20/month ish towards that.
Drinks: Alcolhol is not worth it on either OW or ODSP. it is far to expensive for the joy it gives you. If a friend is buying you alcolhol that is ok, don't buy it yourself.
Health and Fitness: the gym is not worth it for the money you have, especially since you can do things like walk every day, run, bicycle (buy a SECOND-HAND bike for $40 ish at a police auction), skate (Play It Again Sports is your friend for reasonably priced skates, find outdoor/free rinks in winter or even cheap skates through local rinks) or swim (yes, A half-decent swimsuit, cheap towel/bag are worth the investment, as is the cheapest swimming place in town)
if you are on OW: depending on if there is water nearby, you may be able to swim w/ friends for free, if there are no ponds/rivers/lakes, consider any funds you spend on swimming/skating as part of your ~ $10/month entertainment fund
parks often have skating rinks set up for free in the winter
Walking/running/biking are your friends
does all of this seem unreasonably hard?
IT IS.
THAT IS THE POINT OF THIS WRITING.
If you have the energy, GET INVOLVED IN POLITICS and lobby for HIGHER tax rates for corporations, LESS of a wage gap and MORE money for those on ODSP/OW (or even a GUARANTEED MINIMUM INCOME that will let someone survive, if slightly uncomfortably).
I spend $5/year on NDP* membership, because, from what I can tell, they most support those of us who are low/no income.
Greens and Liberals aren't bad choices either.
*NDP, for those outside of Canada, is it New Democratic Party. See, we don't just have one Liberal/Democratic party... we have at least two.... Three if you count the Green Party.
Me? I'm looking at the article and wondering how they're making their estimates. Cause yeah, if you go out for drinks and shit, stuff is going to cost. ($18 for an alcoholic drink????)
But apparently, that's all we young people are doing these days, lounging around our excellent downtown apartments, cooking all the meals, taking each other out on dates, and drinking in excess.
Right... I'm sorry, isn't there a recession going on? Isn't there something like only a 5% job growth for most parts of our country? Don't our older generation complain that we're living at home and not doing anything? Maybe cause we don't have jobs and don't have money to do any of this shit????
Oh, and of course, how many of us are on ODSP/OW? You know, living below the poverty line?
Yeah, fuck this shit, let's all get out there and vote.
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?
Recently, I've started to cut my hair. Doesn't sound all that impressive, does it? Well, at first it was just trimming the back of my neck, doing my own bangs, you know, little touch ups here and there. The bangs thing was fairly regular enough that I bought my own pair of sheers because I found that hair dressers, no matter how nice, and they make awesome efforts at this, never quite get what I'm trying to describe how I want my hair.
And repeat visits, yeah, it might try to clear up what I want, but it's expensive, both in terms of money, time, and social resources. So I took matters into my own hands.
Some of the results were more successful than others; I'm not exactly trained at this. But I got a bunch of good feedback from numerous sources, including people who generally I expect them not to give an opinion either way, and friends who give honest feedback. I figure, the only way to get better at something is to practice, so I continued on.
And then I got the idea to cut my hair not only really short, but shave it. For a number of different reasons, ranging from comfort while I sleep with my CPAP, to cosplay dedication, to why the heck not?
I thought about it for a while, even looked up shaving techniques and shaving for cancer fundraising campaigns. I even tried talking to my parents about it. Their response was... mixed. "Oh, you don't want to shave. Go to [hairdresser] and get it cut short." It felt really uncomfortable to talk about this to them, and I walked away from it trying to figure out why.
Why is shaving one's head such a thing? I asked myself this and started getting the itch to cut more.
Not self-harm cut. Since I was a kid, when I was angry or upset, or maybe even just frustrated, I'd cut things. My mom's lunch bag, my brother's shirt, I'd even grab chunks of my hair and cut. When I did that to my hair, Mom would whisk me away to the hairdresser to get it "fixed". Even with limited access to safety scissors, I went to the hairdresser a lot. I think it speaks a lot about how my mom views my decisions about my hair that years later, it took a family counsellor to convince her that as an adult, I don't need her permission to dye my hair and the remarks she'd say were very inappropriate, not to mention hurtful.
I thought about that as I started cutting my hair the shortest it's ever been. As I cut, I also posted pictures on my Facbook to document my transition.
The pictures of my hair like this, got comments about it being art. Which I suppose is a way of looking at it I haven't considered. But the more I think about it, the more I like the idea of my photographs as an art. After all, it's documenting my journey, and various learning about cutting one's own hair, towards self-expression.
I don't really see it as any different than when I compose and post images of my medications for the day, my dermatillomania scars, my migraine updates; I see it as sharing not only who I am, but my life and what I go through, and how I share, with friends, family, and yes, the public. As long as I am willing, and I control the lens, I don't see the problem with it.
Except that art can be political and/or a form of activism. I live in a situation where I can express myself through art freely, not only in my country, but also in terms of my personal intersectionality. I am a white woman, most of the time seemingly abled in public, who maintains privilege from a middle-class background, including my wardrobe.
Two things come to mind when I'm cutting my hair.
One, I think about how a lot of the questions I get when meeting casual acquaintances is centered on "why"; they want to know why I cut my hair in such a style. The most negative comments (from family, I might add) expresses concern that I'll be judged badly, or that I'll regret it (it's hair, it'll grow back), or that it'll be ugly.
I usually don't care about physical appearances too much, but I can't help but think that their concerns and negative attitudes is based on a rather limited view of beauty. And an ugly view on society too. So far, I've yet to be treated badly for my hair. Could it be that people see my hair as only a small apart of my appearance? There is the possibility that people have made assumptions about my lack of hair and my health, or that my various intersections of privilege has shielded me. But why can't this be beauty?
Second, I think about how many possible ways in my country where someone like me not be able to cut their own hair, in the way that they want. For self-expression of their gender, or beauty ideals, or just to style their hair their way! In a different situation, it might be difficult for someone to style their hair because they live in an environment where they have no control over those decisions, whether by relatives or care staff, coercively or outright deciding for them.
Or they must appease the people they live with, living in at least a faintly toxic environment or situation. Or it's just not safe for them to do so. I think about how in activism, we push for things like body autonomy, freedom of choice, freedom of expression; how much can be taken for granted with being able to cut and style one's hair?
With both thoughts, the act of hair cutting becomes a rebellion, a defiance. To go against perceived notions of physical beauty, to redefine beauty, but also acting for one's own body autonomy. The freedom of the self.
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.
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.
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.
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.
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.....
We're 63% towards raising the money for my educational iPad. That's $395, meaning $224 more to go!!!
If a lot of people donated even just $10 each, it would be fantastic!! Or just shared this around to reach more people!
One thing that I'm looking into is the iPad Mini. While it's cheaper than a full iPad, I have my doubts about it's size being suitable for my dexterity. I think that I'm still going to find a full iPad to suit my needs, and even full sized, much more portable than a laptop. However, I have to at least give it a chance and test it out.
For me, 2012 is somewhat special. You see, ten years ago, in the fall of 2002, I sat in a psychiatrist's chair and heard the words that pretty much changed my life.
It's been 10 years since I've been diagnosed with Autism. That's ten years of self-discovery and growth, of learning to understand myself, not as broken or a monster, but as an autistic person with strengths as well as weaknesses. Ten years of learning what works for me to use my strengths instead of my weaknesses.
Ten years of learning to be comfortable with myself, with my own skin and ways of doing things, of forgetting the rigid rules I made for myself in attempts to conform and fit in. Ten years of undoing all the damage that I've done to myself in order to fit to some abstract concept of normal.
Ten years of being free to just be me
Ten years of making friends who accept me for who I am, not who I pretend to be.
Ten years of friends and people who not only accept, but celebrate and cherish my gifts and differences
Ten years of learning that I am no less different and not alone.
I am never alone.
You are not alone.
It is also another anniversary. On October 31st, 2008, I graduated from Wilfrid Laurier University with a General Bachelor of Arts in English. After six years of studying in the Honors program, I decided that I really didn't care to write another essay on abstract literary terms and found the loophole that let me graduate "early". I liked the university lifestyle, at least, the rather geeky aspect of it: the schedule of classes, sitting in lectures, the predictability of assignments, the campus clubs. I met good people in university, both in the administration (especially the Accessible Learning Centre, excellent people there) and in the campus clubs, people who welcomed me, accepted me, and liked me for everything that I am.
While university was a challenge, it was also very rewarding, even without the friendships I treasure and cherish. It got me thinking about what I wanted to do with my life, and has helped me to develop my research, thinking and writing skills to go on to my current studies. The successes I've had in Disability Studies has confirmed a lot of things about myself and has directed me towards many engaging projects.
I can honestly say that I am a much happier person now than ten years ago, that I am proud with whom I have become. It's not all the autism diagnosis, no, but it sure played a big part in me coming to understand myself. By learning more about other autistic people and Autism in general, I now have words to describe my experiences, to explain to others my needs, and to grow in some many ways. My heart grows light when I consider how my younger child-self would view me; I have grown up to be the type of person I have always wanted to be.
Honestly, how many people can say that? Are you who you want to be?
I've been following the events around Tony Attwood for a while, and I just found this post on Tumblr by Janna. With her permission, I'm posting it here, since I think it says very nicely what I think of the entire situation as well.
I’ve been at it for a bit now.
Still having trouble understanding everything this person is talking
about (have I mentioned before that taking Strattera for six months
decimated my reading comprehension as well as messing with my typing?)
but I’m trying to get through to them.
The post is here, if you want to see. I’m posting as karalianne, as per usual.
For those not up on this situation, a post was made to The Thinking
Person’s Guide to Autism blog, by an autistic person (who is very
successful by NT standards), who attended a session by Tony Attwood
while at an autism conference. During the session, Dr Attwood
impersonated autistic people in a fashion that was exaggerated and taken
as humorous by the allistics in the audience. Meanwhile, the autistic
person was offended by this portrayal.
Dr Attwood was later pointed to the post, and he wrote to the author
privately. In this e-mail, he explained humour to her and implied that
she doesn’t understand humour because she is autistic.
More to the point, Dr Attwood has been doing these portrayals for
several years, and many autistic people have asked him to stop. He
obviously has chosen to disregard the opinions and desires of the people
he supposedly cares about so much that his entire career has been spent
studying them.
There is an autistic person who is posting long “wall of text”
comments to the original post (they’re divided into paragraphs, but the
paragraphs are really long and use a lot of big words; my current
reading abilities don’t like this at all), supporting Dr Attwood’s
continued use of impersonation in the face of complaints.
Here are a few of the things I’ve said so far:
My first comment to the thread:
I am writing just a general response about Tony Attwood in general. He has written a bunch of books. He writes forewords a lot. He’s studied Asperger’s a lot. He has degrees and stuff.
That is really cool, and it’s okay to like people who
have done stuff like that. It’s okay to agree with the things they say
and write if they are true for you.
It’s important to remember, though, that even the coolest people in
the world say and do really bad things sometimes. Saying or doing bad
things doesn’t necessarily make them bad people; a lot of the time, cool
people who do bad things are just misinformed or don’t realize that
those things are bad.
When cool people do bad things, other people need to tell them that
those things are bad. Truly cool people might get upset at first, but
after thinking about it they go, “Oh, wait, I get it. I won’t do that
anymore, then. I’m sorry I did that bad thing.” Less cool people don’t
stop doing the bad things. That doesn’t mean they aren’t still cool, and
it doesn’t mean they’re bad people, it just means that they’re still
doing bad things even though they’ve been asked not to. It’s okay to
still like people who do that, but it’s also okay to stop liking people
who do that. It’s also okay to criticize people who do that, because
they need to be criticized.
If I am standing on someone’s toes and I don’t mean to be standing on
their toes, I AM STILL STANDING ON THEIR TOES. I need to apologize and
stop standing on their toes. My intent doesn’t really matter except that
it was an accident. If I keep doing it to the same person, over and
over again, at some point that person is justified in concluding that I
am actually doing it on purpose and that I don’t actually care that
standing on their toes hurts them.
This article is posted publicly. Anybody can see it, read it, and
reply to it. Tony Attwood is perfectly able to do that here or at
Karla’s site, I’m sure.
(Note: I wrote this the way I wrote it because this is about the
level of complexity I’m capable of today. I’m not autistic, but ADHD
impacts my communication sometimes, too. So I’m not “talking down” to
anyone by using simplistic words and sentence structures, I’m writing
the way I’m able to think about this right now. Just so everyone knows.)
In response to “not everyone has time to peruse the internet”:
Public figures should always expect to be called out publicly. It’s part of being a public figure. In addition, it takes about two seconds to type
your name into Google and see what turns up. Once you skip to the third
page (getting past all the stuff he’s actually written himself), you
start seeing criticisms. I would assume Tony has an assistant who could
use some time each day to check for such things, make a list of URL’s,
and send them to him, with a short summary of each URL. Considering the fact that Tony has been spoken to
more than once about this sort of thing and continues to do it AND
defends it by saying that other people are okay with it is an indication
that private communication will do no good and public callings out are
now necessary to make it clear that this sort of behaviour is really Not
Okay. Like I said, you can still like him. I don’t see
why what he says about Asperger syndrome should be given more weight
than what people who actually HAVE AS say about it, but that’s me. I
don’t see why people who don’t have ADHD should be telling me how to
“fix” myself, either. *shrug*
About the e-mail Dr Attwood sent:
1. I can’t actually understand all of this right now, so I might come back later, but I will probably forget to do that. 2. Attwood has been approached by autistic people
in the past and asked not to tell these kinds of stories, because they
are offensive to autistic people. 3. He continues to tell these stories. Ergo, he does not actually care what autistic people want and need. 4. When responding to someone who has been
offended by something you have done or said, talking about their
perceptions is a way of putting it all on them. Basically, it is saying
“I didn’t mean to offend you; therefore, you should not be offended.
Since you are offended, it is obviously your fault that you are
offended.” 5. I know plenty of autistic MEN who are hilarious. My autistic friends are not all women. Nor do I know them all just online. 6. Intent is not magical in any way. Like I said,
if I’m standing on your foot without meaning to, I’m still standing on
your foot and that is not okay. I need to apologize, get off your foot,
and try not to stand on your foot again. Attwood has not done this.
About the difference between what Dr Attwood is doing and what autistic people themselves do sometimes:
Short note that autistic people poking fun at themselves/their
own disorder is VASTLY DIFFERENT from people NOT on the spectrum poking
fun at them/autism. I don’t like it when people who don’t have ADHD
say offhandedly “I’m so ADD today” because IT DOESN’T WORK THAT WAY. I
don’t like ti when people who don’t have ADHD make jokes about how I
take legalized speed, because THAT’S NOT WHAT I DO WHEN I TAKE MY
MEDICATION. I don’t like those memes that are going around right now
about trying to fall asleep and Old MacDonald Hey Macarena OR the really
old ones about squirrels or bikes (though I grudgingly allow that
people who HAVE ADHD have a right to use them if they think they are
funny or pertinent or something). I still don’t fully understand what the heck
you’re talking about for the most part, but I did understand the stuff I
just said and I know it pertains to some of what you wrote.
In response to something that was basically “he doesn’t intend
to respond, and anyway very few autistic people are statistically going
to be at these conferences”:
Regardless of intent. (INTENT DOES NOT MATTER) A person who has a particular disorder can say
things about their own disorder that it is insulting and inappropriate
for people who do not have that disorder to say. If I were giving a talk about ADHD, I would talk
about positives and negatives and describe my life and the lives of
other ADHDers who have given me permission to share their stories. And
it would be okay if me doing that made people laugh, because I would
certainly play my own stories for laughs if they were funny. However, if
a professional who does not have ADHD told funny stories about ADHDers
losing their keys every morning or something, I would find that
offensive. Someone who doesn’t have ADHD laughing about things that
happen to me on a regular basis, that are incredibly frustrating to deal
with, is degrading and offensive. In addition, doing this - even when no people with
the disorder are present - indicates a callous disregard for the people
who have the disorder. It also encourages other people to do the same
thing. Basically, IT DOESN’T MATTER IF SOMEONE IS THERE
TO BE OFFENDED, THERE ARE REPERCUSSIONS FOR SUCH BEHAVIOUR THAT WILL
AFFECT THEM ANYWAY.
First of all, I fully intend my iPad to be an assistive device. I'll either be taking it to school or using it to test out apps for the Autistic Adult App Project. As I am in Disability Studies focusing on social change, I hope that I'll be able to use what I learn with my iPad to give back to the greater Autism and disability communities.
Now, I'm planning to install very specific apps on my iPad. I think that it's fair to let people who are investing in me know what I'm going to do with their donations.
Inspiration Maps: based on Inspiration software that I've been using for the past ten years. It's a visual brainstorming program that turns a mind-map into an outline. I can't count all the ways this program has been vital to my essay writing. With this, I can work on essays even away from my computer. (if interested, there is also a free version)
Full Version: $9.99
Blackboard Learn Mobile: this is actually a required app. A lot of my courses has online content, and my school uses Blackboard systems. This app thus will allow me to access my course materials anywhere that I have an internet connection.
Free
Open Word: a word processor, simple enough. I picked this one because I'm used to the freeware Open Office, and this app supports .odt, .doc, and .docx formats. Plus it looks like it can connect to Dropbox, Google Drive, and other networks.
Always good to have a decent word processor.
$3.99
myHomework: homework organizer. Definitely handy for when I have multiple courses with lots of assignments.
Free
Miracle Modus: I reviewed this on the Autistic Adult App Project earlier. This is an app created by an autistic programmer to deal with stress and sensory overload. I find it quite useful and effective.
Free
EpicWin: one of the first apps I reviewed, and worth every penny. A to-do list that integrates RPG gaming to give immediate rewards for completing tasks. I use it to help me remember to do things like take meds, do laundry, and other functioning tasks. Cause even when I'm away at school, I got to do things like eat, eh.
$2.99
Talk Assist: Another of the first apps I reviewed. This is a text to speech app, for when I'm having difficulty speaking. Free and easy to use.
Free
Dictionary.com: a dictionary and thesaurus, pretty basic, but meets most of my immediate needs until I can get to my large volumes.
Free
eSleep Lite: I recently reviewed this one on the Autistic Adult App Project. While designed to help people relax to sleep, I find it useful to relieve stress in order to work! This is one of the better apps I've found out there.
Free
Wikipedia: While I'd never suggest referencing Wiki as a source on an essay, it's a good place to look up general information about a topic that I'm unfamiliar with. At least, most of the time, and until I can get to a library.
Free
ICE Standard: It's not assistive or educational software per say, but I think that it's important to have this one. In short, it's a medical emergency ID card app. I have one on my iPod, and I've used the notes section to put in autism-related information for first responders. While I love the medical jewellery I make, I can include all my meds and contact information, which if I don't have to use in an emergency, can be handy if I ever have to talk to a doctor, especially a doctor that doesn't know me. Free
I haven't decided yet, but I'm looking into an APA and MLA format guide. As part of the social sciences, Disability Studies uses APA style, but I find it rather difficult and confusing. Since I can practically cite MLA in my sleep, and my professors have been pretty good so far about it, I use MLA instead. However, it's good to have style reference guides to double check, for both styles. The ones that I am looking at right now are between $1.99 and $3.99.
Now, you'll notice that is eleven apps I have planned for my iPad, and that most of them are 1) free or cheap and 2) not necessarily disability-related. I don't think I need to explain the cheap part; I have a very limited budget, and if there's something out there that suits my needs without (much) adjustment, I'll use it.
As for the disability aspect, well, part of it is the nature of my disabilities; most of which is information decoding and processing. When I'm in the classroom, I have a number of accommodations set up, mainly note-takers (who usually emailed me their notes, oh hey look, email access on an iPad! Bam! Got my notes to study wherever I go), and I have texts scanned in for me, access to books on tape, and so on. When the courses are online, the materials are online, and are in a format that automatically meets my accessibility needs. At least, most of the time. So the issue then is my own productivity.
Which leads me to the next part; what you need to remember is that I'm a late-diagnosis. While diagnosed with ADHD in Grade 1, I didn't know about it until Grade 6, and accommodations were whatever my parents could scramble up with my teachers, cause I had no formal IEP until Grade 10 and I was in a private elementary/junior high school with no special needs programs at all. I didn't feel comfortable using accommodations until at least Grade 12, which is also the year I was diagnosed as autistic.
So I have a strong belief in doing more with less. I also had something of a crash course in learning what works best with me. So I'm not about to waste my or anyone else's time and money on things that is not going to work. Now, I know these apps above are the best apps for me, or most like to be the best apps for me. It's kinda hard to tell when I've never had an iPad before, and it might be that in the future I'll find more wonderful apps. But from my experiences and research, these are the best.
And final part. The iPad itself. I know I go on about apps and the wonderful things app technology means for disabilities. However, let's look at the iPad itself. I know I just said that I never had an iPad, but I've tested out tablets in stores and whenever I could get them away from friends. To me, tablet computers are exciting in of themselves, because it is the device that makes apps possible. It is a small, lightweight computer that is portable, (generally) easy to use, conceivably compatible with various systems, and adaptable to meet many needs. This opens doors for many disabled people, not just autistic people. And there are so many styles and models to choose from, something almost unheard of in assistive technology until recently.
For me, the iPad means more than just the latest gadget to show off to my friends (ironically, the reason my parents bought my first iPod when all I asked for was an mp3 player). It is a device that helps me to organize my thoughts, to keep track of my schoolwork, to manage my stress levels, and to help me learn. It does this in part by the apps it provides, and also by its design. Yes, there are a lot of tablets out there, a lot of which are cheaper. However, as I pointed out above, I know what works for me. When I tested tablets, I found that the iPad was the only one with a big enough screen for me to work the most comfortably, that I could type easier and use the system more fluidly. To most people, my difficulties with perception and motor skills is unnoticeable, but to me, it is a source of frustration.
Which is why being able to get an iPad means so much to me. It will allow me an ease of access in the classroom that I never had before. Each donation towards my iPad makes me wordlessly excited! I want to thank everyone, and I don't know how!! Every little bit goes towards helping me give back to the communities.
So please, if you haven't already done so, make even a small donation, or help spread the word! Every little bit helps! And if you have already done so, I thank you immensely.
