Report on our first year – and looking ahead

by Anne Borden, co-founder

A year ago, we launched our website/social media and planned our first direct actions and campaigns. Our small group of founders–who discovered each other on social media–had come together to build the first province-wide autistic self-advocacy group.

In the year since our founding, we’ve focused on capacity-building and campaigns around health, employment, education and human rights.

In doing so, we are challenging the assumption of many Ontario policymakers that our needs can be understood by talking with our parents. In fact, our needs are best understood by talking with us. As an activist/self-advocacy organization, we are here to claim our space in the autism policy dialogue in Ontario.

Here are some of the ways we made ourselves heard in 2017-18.

Coalition and Community

Supporting the Closure of Sheltered Workshops. In 2017-18, we stood with Community Living Ontario and other advocates in a statement supporting the end to “sheltered workshops” in Ontario, where disabled workers are exploited, working at a fraction of minimum wage. Following the Ontario Government’s decision to close them, Ontario Bill 148 also guaranteed that the term training cannot be used by companies as an excuse for unpaid labour.

With other disability and labour organizations in our province, we will continue to stand united against any attempt to re-open sheltered workshops or to undo Bill 148.

The Disability Day of Mourning is an event founded by the Autistic Self-Advocacy Network (ASAN), a US self-advocacy group. On March 1, around the world, disability rights advocates hold vigils in honour of disabled people who were killed by their parents or caregivers. The vigil honours those lost and draws attention to the injustice that murderers of autistic and/or disabled people are routinely given lighter sentences by the criminal justice system.

A4A held vigils in Newmarket and Toronto. Many thanks to Mandy Klein, Sarah McFadyen and Raya Shields for leading these vigils.

The SpectrumWorks Job Fair is held every spring in Toronto, to bring autistics and employers together for interviews and information. Employment is a major issue in our community, in terms of both opportunity and accessibility. We were glad to be there to speak with autistic attendees, parents and employers about employment in Ontario.

A big thank to the SpectrumWorks organizers for inviting #actuallyautistic groups to the event and for asking us to advise on next year’s event!

In June, we marched in York Region’s LGBT+ Pride Parade. It was a super-fun event and welcoming space for all sexualities and neurotypes! Thank you to the YR Pride for welcoming us, we will be back next year.

We also co-ordinated an autistic-specific seminar with the Ontario Disability Support Program Action Coalition. Director Kyle Vose spoke about how to apply for ODSP, specifics of the benefits and how to appeal a decision. Thanks to Brandon Wulff and the AIDS Committee of Toronto for organizing and offering free space for the event. We are proud that ODSP AC has invited us to sit on their Action Committee (thanks Never Poplar for volunteering!) and we look forward to articulating the issues specific to autistics, and to supporting this important advocacy group.

This weekend (Sept 22), we marched in the Toronto Disability Pride March. The purpose of the march is: “To be visible and show that we have a voice in our community and a right to be heard. …To celebrate and take pride in ourselves as a community of people with disabilities.” We are looking forward to being a part of the march and other disability pride and advocacy events throughout our province.

Claiming Space
In Ontario, public autism events have usually been led by parent groups, with no meaningful input from autistic people. We are changing that. Here are a few events we organized in 2017-18.

Raise Our Own Flag – action. The annual Flag Raising at Toronto City Hall for “Autism Awareness Day” is triggering for many of us. This event is organized by non-autistic people who use terms like “epidemic” to describe us. SIGH….So we decided to show up with our own flag: the Neurodiversity Pride flag. Nic Hull silkscreened up a beautiful flag and we were on our way!

As Talia Johnson wrote: “The counter-rally was not against Autism Ontario, but for showing diversity and ensuring inclusion of autistic people in discussions.”  Prior to the AO event, four of our members spoke (via megaphone, because we were sidelined) about their experiences in the broader autism community and what needs to change. The event organizers did listen and we hope that next year the Neurodiversity flag will be raised and our realities no longer on the margins at City autism events.

Autism Speaks Doesn’t Speak for Us – action. A few months later, some of us counter-leafletted at the Autism Speaks Walk-a-Thon. We held a big banner which read: “Autism Speaks Doesn’t Speak for Us” (thanks to Jeff Chislett for making it!) and handed out our leaflets, which outlined facts about A$ on one side, and facts about neurodiversity on the other. We also handed out hand-made stimmy toys to kids attending the Walk, because the event was not at all sensory-friendly. Thank you to Sarah McFadyen for the idea and for making them! People liked the stimmies and we hope it helped: it felt good doing something that could have an immediate effect.

Even though it was hard to stand there and we did get some harassment, it’s important to be a presence and we will continue to be.

The International Day of the Stim. As A4A co-founder Rishav Banerjee writes: “Stimming brings us comfort and it brings us joy. It helps us deal with our pain. It helps us connect with the world and the universe around us in a unique and special way. Most importantly, it is a form of self-expression. An Autistic person’s stims are as unique as them, and they deserve to be respected as such.”

In that spirit, a group of us decided to start an international day to celebrate stims, with gatherings by London Autistics Standing Together and Canadian Autistics United in Winnipeg, among others. We used #stimday to get a discussion going on Twitter and ran a Stim day blog. Like most pride events, Stim Day is fun but exists for a serious reason. Under ABA, autistic children’s stims are often weaponized, taken away or “extincted” through physical or psychological abuse. We hope that in the future, autistic stims can be honoured for what they are: an important part of our lives and our health.

Our Positions

Sheltered workshops. We co-authored a statement in favour of our government’s closure of sheltered workshops. As MP Joel Hardin’s stated in his response to our Candidate Questions in November: “Sheltered workshops, which segregated and often underpaid their workers must continue to be a thing of the past. So-called ‘training’ under these (and other) circumstances has been too often a euphemism for exploitation. In addition, integration into the wider community, rather than hiding people away in this fashion, is clearly a preferred option—this is, after all, 2018.”

We couldn’t agree more. Unfortunately, the NDP did not get a majority and with “Ford Nation” in office, we may once again be fighting on this issue. We’re ready.

Autism Pseudoscience.We authored 2 reports on autism pseudoscience. In our first, on autism cure regimes, we documented the presence of these scams in our province and the lack of regulation around it, reaching out to pediatricians with specific tips for how to respond if a parent is using pseudoscience on their autistic child. In our second report, we discussed the specific risks of chelation for autism. When a story about autism pseudoscience broke on the CBC, many providers reached out and this started a broader discussion about how to improve the patient experience for autistic children and adults.

We will continue to educate and advocate around autistic patient issues in 2018-19.

ABA and the Ontario Autism Program. In 2017, our group formed in a particularly grim policy climate, where the ABA lobby was about to gain total dominance in our public education system. As the Government’s new Autism Program (OAP) mandated that all autistic public school children receive only ABA, it also gutted all services for autistic adults. The hateful expression: “Pay now or pay later,” was used to create policy that harms autistic children, youth and adults in our province. We will never forget this sad chapter in our Provincial Government’s history.

The OAP is a symptom of the broader problems in the Special Education system in Ontario, which hasn’t changed in 40 years –despite progressive evolutions in other parts of our country and the world. To that end, we wrote and advocated in opposition to the Ontario Autism Program and to ABA in general. The OAP needs to be scrapped and Ontario needs to catch up with the 21st century. We hope to move forward on this in 2018.

Looking Forward

Neurodiversity and Stim Toy Library. Based on a model developed by Lei Wiley-Mydske and Lana Thomas that is used internationally, we will be making our own neurodiversity library, starting in the Greater Toronto Area. We are also inspired by the work of Canadian Autistics United and activists at Simon Fraser University who have developed a Stim Toy Library at SFU!

In 2018, we will work with the Toronto Public Library to create a housed collection that is also mobile to community events. It is an amazing way to outreach and share neurodiversity resources with all who are interested.

UN Envoy visit. In November 2018, we will be meeting with the UN Special Rapporteur on the Right to the Highest Attainable Standard of Physical and Mental Health, during his visit to Canada. His office requested a report from us on the status of autistic people in Ontario, with an emphasis on housing/institutional life and human rights.

We look forward to discussing the report and other issues in international context and connecting with other activists on this.

Education Reform. On the heels of the Ontario Human Rights Commission’s scathing report on Special Education, we hope in 2018 to be part of the public discussion on equity and human rights issues in schools for autistic and all disabled students. Only through addressing the realities and naming them can we as a province move towards meaningful reform.

While other education systems around the world are incorporating universal design and other important measures for accessibility, inclusion and dignity for all students, Ontario’s education system hasn’t made meaningful change in special education in decades. Restraint, segregation, isolation, school exclusions, verbal and physical abuse are part of the fabric of special ed in Ontario. Ontario needs a complete overhaul of its special education system. We hope to help in every way we can.

Employment. We will be advising SpectrumWorks and other job fairs and agencies about accessibility and other issues in the job search process and in the workplace. We also hope to work with the Ministry of Labour as well as the private sector to identify areas for improvement.

While the private sector has been working to create an interview and workplace environment that accommodates autistic employees, we need government buy-in to bring better standards across industries. A handful of IT jobs or some service positions don’t solve the problem for most of us. Many of us have limitations to how many hours we can work as well: thus, maintaining ODSP and other benefits are tied directly in with employment retention, poverty and wellness. We hope to gather more data and work directly with policymakers on employment issues in 2018-19.

Health Care Access. Our health care access initiative will begin with an open-ended survey of autistics in Ontario, focused around the Social Determinants of Health model and intersectional identities. We seek to present the results, with analysis, to health policymakers as well as physicians and create a better, more accessible health environment for autistic patients in Ontario.

Gratitude!
Thank you to all members–autistic and allies–who have been a part of the conversations on neurodiversity; human rights and autistic representation in Ontario as our capacity has expanded this past year.

Thank you to everyone in the group who has been involved in planning actions; making strategic decisions; moderating our groups; designing  materials; writing blogs, statements and reports; managing our website; building partnerships and coalitions; and keeping our group so cohesive, organized and active.

It’s been amazing to watch what has come from our core group’s early conversations just over a year ago. Autistic self-advocates are now a part of the policy landscape in Ontario, growing more visible and powerful around the issues that affect our lives. There is light at the end of the tunnel. We are shining it forward. Nothing about us without us.

 

 

 

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