Author: a4aontario

Freedom to stim, under attack. What do we do? Act up, write back

a4aontario


Sometimes people send emails asking us to promote their products/services or give opinions about them. And some of these products and services are clearly problematic or even abusive for autistic people.

We recently got an email from a scientist seeking to create a technology they hoped to license to Apple Watch that would monitor an autistic person’s stims–the rhythmic movements we make when we need to regulate our emotions—and alert about the person’s stims. They then seek to develop ‘a whole set of wearable devices to capture all aspects/features of [stimming] in ASD in near future.”

While the scientist claimed that the product would be “supporting the autistic community with a technology to promote Self-Advocacy,” this technology does not support self-advocacy at all. It supports the absolute friggin’ panopticon of the ABA industry, which seeks to license new and crueler tools to monitor, grade and punish autistic people—especially those who are intellectually disabled—for our natural ways of being.

But here’s the really interesting part: the scientist identified as autistic. So, we wrote back.

“Thank you for your email. Autistics for Autistics does not support ABA in any way, shape or form and cannot endorse your research that enables ABA and its harmful impacts on autistic people.

“Monitoring gadgets like this only enrich the developers and licensers without providing something of value to the end users. They end up being forced on autistic people who are not given the opportunity to say no and that is unethical.

“It is our hope that autistic researchers consider their own quality of life as they go down the research path, think about what services and products or social research could meaningfully improve the quality of life for autistic individuals and focus on that, because that is rewarding work. You are young and still have time to shift your path in that direction.”

As to the scientist’s aspirations that AppleWatch would ever pick up such an application, we’d invite anyone who finds that plausible to look at the autistic apps supported by  Apple, including Proloquo, GoTalk, Keeble and Time Timer. Or travel to Cupertino and watch the developers there, pacing and fidgeting and stimming their way to a new suite of amazing applications and products that legit do improve quality of life.

We have the right to stim, to move in the ways we need to move to regulate our bodies and emotions. Nobody should be monitoring, stigmatizing or shaming us for it. Join us each year on September 17 for our online event, the International Day of the Stim. 😊

 

 

Autistic advocacy in Ontario: Highlights from 2022

a4aontario

The past year has been exciting, as we returned to in-person events and continue to grow, with new projects and connections across Canada!

Some highlights:

  • We raised the neurodiversity flag at Toronto City Hall, after 2 years of virtual observances. It was incredible to be together again in real life and to break bread (well, cake) and feel so welcomed by the protocols staff at Toronto City Hall. Thank you to all who attended.
  • We provided info & spoke before the Senate of Canada, together with Autistics United Canada (AUC), about the need for federal policymakers to move from a charity perspective to a rights perspective. Canadian policymakers need to begin to study best practices in disability policy and consult with autistic-led groups.
  • We continued to partner with the Centre for Independent Living Toronto (CILT) to improve vaccine access for autistic/disabled people through the Disability Vaccine Outreach Initiative, including our vaccine info webinar, social media outreach and one-to-one outreach by our amazing Vaccine Ambassadors, Gaby and Sam, to ensure access for autistic Torontonians with support needs. We are so glad that CILT included us in this important project!
  • We led the annual Disability Day of Mourning in Ontario, remembering those who were murdered by their parents/caregivers and saying: Never Again. Our members read names, gave speeches and provided support through a virtual vigil on March 2. Thank you to everyone who made this important vigil happen.
  • A4A members presented to the Ontario Association of College and University Housing Officers and to University of Waterloo about inclusion, student life and new research on autistic students in college and university. We have more invitations to present on this topic early in the new year!
  • We continued our groundbreaking Autistic Health Outreach Project, educating Canadian medical students about autistic health access needs at the University of Toronto and Queen’s University medical schools.
  • We continued to support and collaborate with Community Living Ontario to work towards ending abusive long-term care and institutional housing in our province, through the Alliance on Aging and Disability. Thank you to all partners for all their hard work on this issue, to our rep Taryn and to Shawn from Community Living for inviting us.
  • A4A was an organizing partner in the online annual Canadian national conference on the International Day for Persons with Disabilities (United Nations), which was hosted by the Alliance for Equality of Blind Canadians, streamed on Accessible Media International and featured speakers and participants from around the world.
  • We were contacted by media for stories about ABA, restraint and seclusion in schools, media portrayals of autism and other topics. It was especially awesome to be contacted by OWL magazine for their neurodiversity feature!
  • We consulted with a community coalition about the need to modify the existing Accessibility for Ontarians Act. At present, autistics are not included among the disabled groups protected by this legislation, creating a barrier when we try to seek inclusion and pursue human rights complaints.
  • We attempted to consult with the Public Health Agency of Canada about priorities in federal autism appropriations. Unfortunately, PHAC continued its pattern of devaluing autistic people’s input and time, so for the well-being of our reps we left the conversation. We will continue to connect with MPs, Senators and other federal agencies instead.
  • We continued to educate employers on inclusive supports and communication access for autistic people through our Autistic At Work presentation, and to present to mental health organizations about access and inclusion.
  • We began to plan for 2023, including launching our Neurodiversity Library with support from the Autistic Women & Nonbinary Network; joining a new, national coalition project to work for regulating legislation on restraint and seclusion in schools; taking action to promote supported independent living options for autistic and intellectually disabled people; new advocacy to protect people with epilepsy from cyber attacks; policy work, education initiatives and much more.

I feel so honoured to work with the Board and volunteers, who are the most incredible people. Any policymaker, parent, educator or organization is lucky to have access to their time, perspective and ideas. I can’t wait to see what the future brings for autistic rights in 2023.

-Anne Borden King

 

Autistics are not protected by the Accessibility for Ontarians with Disabilities Act. We should be.

a4aontario
A teal blue rectangle with a white maple leaf design at the left, followed by white-lettered words: "Accessibility for Ontarians with Disabilities Act"
Accessibility should be for all


On October 18, A4A rep Anne spoke before a committee preparing a review of the Accessibility for Ontarians with Disabilities Act (2005). As the legislation stands, autistic people are not listed among the disabilities covered therein. We believe autistic should be included among the disabilities covered in the AODA. This is our statement.

Intro
Autistics for Autistics is Canada’s largest autistic-led advocacy group. We are an international affiliate of the Autistic Self Advocacy Network, the largest autistic-led advocacy group in the world. We consult governments, businesses and other entities on disability accessibility for non-speaking and speaking autistics, as well as those with intellectual disabilities.

Autistic people’s human rights and accessibility needs are frequently violated in schools; at college and university; in housing; employment; healthcare; and other settings. Our community also disproportionately suffers from poverty due to segregation, access barriers, bias and other discrimination.

Add “autistic” to the AODA
The words autistic or autism are not included in the lists of disabilities protected under the legislation designed to protect the human rights of disabled Ontarians, (the Accessibility for Ontarians with Disabilities Act, or AODA).

Because autistic people are not included as a group in AODA legislation, we are not able to effectively utilize the legislation when seeking redress for human rights violations.

It is false to claim one can imply “autistic” under the umbrella of intellectual disability in the AODA. There are thousands of autistic people with significant disability, whose IQ is over 70. If the autistic person has an IQ over 70, AODA rights legislation is not seen to apply to them because autistics are omitted from protection under it.

Conclusion
Autistic people are sometimes told that parent groups can speak for us. But of course the viewpoint of a disabled person is different than the experience of their parents. Parents should not be speaking as the sole representatives of “autism,” nor as architects of AODA legislation. Nothing about us without us.

We at Autistics for Autistics would like to meaningfully consult on this policy to make sure our community is included. We were not included in past consultations. We want “Autistic” listed as a condition, directly, in the AODA.

Thank you.

Black, Indigenous & People of Colour are disproportionately targeted on social media: White allies need to step up to their responsibility

a4aontario

Yesterday, a blue-check Twitter account (Erin Biba) noticed a tweet from our account criticizing conspiracy theories about the CDC along with other health disinformation. While our tweets were describing a real problem, Biba labeled A4A as “right wing” in a series of quote tweets where she encouraged A4A’s donors not to donate. She also shared our email address with her 65,000 followers.

Within minutes, scores of Biba’s followers were swarming A4A’s account, as they’ve swarmed other accounts and relentlessly trolled individuals as a sort of group-bonding activity. (You can learn more about this phenomenon here.)

While most tweets were directed towards our organization that night, one of Biba’s followers directly doxed an A4A member, targeting a person of colour (a member of A4A who is not even a Twitter mod). Biba’s follower told the person they were going to screenshot and share the person’s identity with all of Twitter, then did so against their wishes. Despite outreach, Biba’s follower kept the tweet up and wrote disparaging comments, harkening the racist rhetoric of calling non-white people who speak to power “uppity”.

Sadly, acts like this are a regular occurrence on Twitter. In fact, racism is perpetuated against Black, Indigenous and People of Colour so often on social media that it has become normalized.

White people often refuse to acknowledge the racism in acts like this. Their ignorance and refusal to act is in itself a form of racism. BIPOC are continually disappointed and hurt when white friends and colleagues ignore racism or “shy away” from calling out other whites for their actions.

Whites have to do better at allyship. BIPOC endure daily acts of racism–yet how often do their white colleagues and friends really have their back, or take even a nominal risk of feeling uncomfortable for a bit, to support BIPOC?

First steps to doing better can include reaching out to the person who was harassed–not just to say quietly “that sucked,” but to ask the person “How can I help?” Here are some other ways to help when a person has been doxed or personally harassed:

  1. Report the doxer/harasser to the social media platform—and to authorities where applicable
  2. Confront the doxer/harasser on social media (including confront-and-block)
  3. LISTEN to the victim. Don’t weigh in with abstractions or comparisons. Just listen.
  4. Follow, learn from and share content by BIPOC accounts. Decentre yourself and share their content instead of your musings or selfies all the time!
  5. If you make a mistake that offends or harms, don’t make excuses. Say you’re sorry and learn from it.
  6. If you’re part of the autistic community, learn about the work of the Autistic People of Color Fund here.

There are no excuses for Biba or her followers to harass and dox our little group. There are no excuses for Biba’s follower to personally dox one of our members, a racialized and multiply marginalized person. White people need to do better to ally with BIPOC to stop harassment and racism, online and offline. The platforms need to do better, too.

Thanks to all our members who were supportive this week.

 

 

 

“Canadian autism policy needs to move from a charity perspective to a rights perspective”: Autistic-led groups present before the Canadian Senate

a4aontario

In March 2022, A4A member Anne Borden King delivered a speech before the Canadian Senate on the need for a paradigm shift in federal autism policy. Vivian Ly of Autistics United Canada also presented. Both speeches were followed by discussion with Senators.

See/hear Anne’s speech here
Read the transcript of the full hearing here (starts about 3 pages in)

Anne says: “The Senators were so engaged, thoughtful and respectful of us both and the proceedings. I’m looking forward to seeing what may come of these hearings.”

Speech Text

Good afternoon, esteemed members of the Canadian Senate. It is an honour to be here with you.

I’m Anne Borden King. I’m here representing Autistics for Autistics. We’re a national autistic-led advocacy group. We formed in 2018 because we realized that, in Canada, it is mostly non-autistic people who have been leading the autism policy discussion—policy about us, without us.

For decades, the Government of Canada has granted hundreds of millions in sole-source contracts to autism agencies with no RFPs, no competition, no follow-up, no assessment. The cheques get cut and everyone attends the charity gala, or claps when they break ground on a new segregated “home” for autistic men… on the edge of town. Did you know that more than 90 percent of Canadian federal housing funding in this sector still goes to segregated group homes? Even though in the US, it’s been shown that a different model, supported independent living is better for everyone.

We’re hopeful, today, that this new framework will bring a policy shift that keeps up with the changes in the rest of the world. Our Government needs to pivot from a charity perspective to a rights perspective.

Autistic people, like other disabled people, have rights. In fact, our rights are enshrined in the United Nations Convention on the Rights of People With Disabilities. In Chile, the Congress has just approved article 26 to its new Constitution which states and I quote “The State recognizes neurodiversity and neurodivergent people, their right to autonomy and self-determination.” end quote.

In the US, autistic-led groups are directly in dialogue with the Biden administration as part of its disability policy team. The Inter-Agency Autism Coordinating Committee (IACC) is a diverse and rigorous group, comprised of federal and public members including members of autistic-led groups.

Meanwhile in Canada, autistic people are not even included in federal disability rights legislation. Autism is in a policy silo. So far, Canadian policy hasn’t been about solving our problems…it’s been framing autistic people as if we are the problem.

In the current draft of the Framework, autism is called an “impairing disorder” with “challenges” to employment and housing. Our first request is that these euphemisms be dropped and the words disability and access barriers be the replacements. Schools, workplaces and housing have the responsibility to change the environment to meet the needs of disabled people, including autistic people.

Our Access to Information requests revealed that over the past decade, none of the projects overseen by P.H.A.C. were RFP’d. I’d give the example of the 10 million dollar website that was not put out to tender but rather given to an autism-related company that is now doing even more assessments because its traffic is so low. There are many other examples of this kind of inefficient use of funds.

So our second request is that the Framework require a competitive funding environment, assess the ROI for projects and require those RFPs.

Our third request is that you add to the Framework that the Government needs to independently collect data.

I’m glad to see a line item on data, item 2c, but it is dangerously vague. Current policy is based on biased and unreliable data provide by lobby groups. I would point to the interest group CASDA’s 2018 national quote “needs survey,” where only 2.4 percent of the survey participants were even autistic. 2.4 percent. With respect, this kind of data should not inform policy. Nor should industry white papers be considered an “evidence base” of “best practices”.  In contrast, consider the US government’s independent data collection via the IACC and the work of the UK standards council in independently evaluating the claims of the ABA industry, for example.

Like all disabled people, autistic Canadians should have a right to access–to communication such as AAC; to inclusive schools and workplaces; to health care; and housing in the community.

In conclusion, we would ask that the Framework include language that enshrines these rights. Think of the Chilean Constitution, acknowledging neurodiverse people’s rights. Think of our government’s approach to other disabilities and apply it to this document. We need rigorous policy that’s focused on quality of life. It’s time for a paradigm shift.

Thank you.