On April 10th at Queen’s Park, provincial MPP Joel Harden organized an accessibility town hall, to discuss access issues in Ontario. Two of our members, Anne Borden King and Cathy Wright, spoke about access to AAC and other accessibility and human rights issues.
Each speech was 3 minutes, in a series of speeches by people with a broad range of disabilities, read into the public record.
SPEECH 1: ACCESS IS A RIGHT
I’m Anne Borden, a co-founder of Autistics for Autistics Ontario, Ontario’s autistic led and run self-advocacy organization.
For me, accessibility means:
1. Communication choice. Autistic people who are non-verbal or semi-verbal have the right to access for augmentative and accessible communication, AAC. Whatever form they want to use, whether sign language, on paper or using technology or other means.
Unfortunately, ABA providers in Ontario typically believe in waiting at least 6-12 months before “allowing” a child to use AAC (and this is in the best-case scenario). It can add up to years of a child’s thoughts and feelings not being heard. Many schools and special education classrooms here don’t prioritize the right to communicate for nonverbal children. Some of our members did not get access to AAC until they were teenagers, some as adults. Some autistic people never get access to AAC.
Also, institutions such as health care, the workplace, housing and services need education on communicating with AAC users.
No one should be denied AAC in the name of “therapy” or any other reason. We can educate on AAC and we must, in Ontario.
2. Inclusion. Accessibility for autistic people also means inclusion in classrooms as the first choice, as the norm. We know this works because we’ve seen it in other places outside this province.
Accessibility means young autistic children growing up IN their communities, not in the segregated setting of the Intensive Early Intervention Centre. 98% of autistic people, when polled, oppose intensive ABA centres. For an autistic child spending their days there, at work, when they could be playing and connecting with their peers instead, is wrong.
Removing autistic children from their community leads to a lifetime of segregation.
3. Autonomy. Accessibility means autonomy in housing, employment opportunities and being a part of the social fabric. Right now, in many ways our province is still living in the past. Although the last residential institution closed 10 years ago, the mentality of segregation has not disappeared. Some service agencies are still following the medical model of disability instead of the social model. There are many ways to make fair employment and autonomy with the right supports a reality for more autistic adults.
We have to understand why accessibility matters. We have to understand how inclusion lifts us, all of us. And our policymakers and service agencies need to understand that access also means: access to consult on the decisions and plans that impact our lives.
Nothing about us without us
SPEECH 2: THE COMMUNICATION RIGHTS CRISIS
I’m Cathy Wright and I’m here to talk about the Communication Right Crisis.
The majority of non-speaking autistic people have no access to communication tools. The majority are presumed to be intellectually incompetent. Presumed by professionals, their teachers, and even their families to be incapable of thinking, learning, and directing their own lives. We live in an ableist society that makes assumptions about people based on their support needs. They are labelled low-functioning or severely autistic because they often need support with the basics of daily functioning and because there are sometimes behaviours that are not well understood, like meltdowns. And rather than providing communication tools such as Augmentative & Alternative Communication systems, the focus ends up being on “behaviour”.
Although this is a huge issue, affecting all areas of life, I’m going to focus on the education system, where the opportunity is greatest to make needed changes.
I have a 23-year-old son, who is a non-speaking autistic man. From early childhood, he was presumed incompetent at school. As parents, we were given very poor professional advice. We were not told that a communication system might change our son’s life. In a psych test at age 14, my son scored less that the 1st percentile.
At 17, a support person who had experience with supported typing offered a letterboard to my son and we began having the first conversations with him ever.
We learned that he was a polite, empathetic, sensitive, funny kid who was interested in art, politics, world affairs and travel. He desperately wanted to be provided with an education but that didn’t happen.
Although his school embraced his communication system and recognized his intellect, he still had very high support needs. He still needed help using the washroom, eating, sitting in a classroom and managing sensory issues and the only place they provided support staff was in special education classes where he couldn’t receive high school credits.
When we tried to provide a support worker for him to attend credit earning classes, we were prevented from doing this due to collective bargaining agreements. He attempted to use the PLAR system to be awarded a credit, but it wasn’t an accessible system.
I fought with a school superintendent over that, who just stopped responding to my emails as a way of dealing with me. My son left high school at age 21 with no credits and at 23, still hasn’t been able to access the education system in a meaningful way. He is taking a math course right now at a local college but ended up changing his status to audit because his school offered him a comprehensive accessibility plan and didn’t follow through on the plan. My son would rather be in a learning environment, even under those circumstances, than not be learning so that’s what he’s doing. Incidentally, there are a number of colleges in the United States that admit students who use AAC. Canada lags behind in many ways.
If you’re inclined to think that a non-speaking autistic person who is discovered to have the capacity to think, learn and communicate in a sophisticated way is a miracle of some kind, know that we have met well over twenty people just like my son, who are using Augmentative & Alternative Communication devices to direct their own lives. Yet it remains that the vast majority of non-speaking autistics are trapped inside their bodies with no communication tools. They are institutionalized in high numbers. Their support in school is primarily behaviour management. Why not instead offer communication tools?
Our schools lack the capacity to support communication in non-speaking autistics. They have staff they call autism teams who don’t have a clue about AAC and this is even true of Speech Language Pathologists. Similarly, their psychologists will proceed with testing on students who have no communication tools, and declare them intellectually incompetent. Most parents don’t know any better because we look to these professionals for information.
School systems blame lack of funding and other resources, but they are not even providing the most basic support to their non-speaking students. Communication is a basic human right. When communication rights are denied, of course the result is students who are perpetually in a fight/flight state , who get labelled incompetent. Even when parents who do know better advocate for their children, school push back hard and gaslight us.
Currently, there is much in the news about ABA for autistic children and I don’t have time to talk about how problematic that is. I will only say that it’s past time to recognize that we have a communication rights crisis. Schools must be mandated to provide communication systems to their non-speaking students and this must happen now.