Tag: autistic

Autistic advocacy in Ontario: Highlights from 2022

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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.

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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

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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.

 

 

 

To our allies in the Canadian disability community: Please do not support Autism Speaks or the National Autism Strategy

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Screen Shot 2019-11-30 at 12.40.12 PM
Open Letter to Canadian disability rights organizations:

As autistic people, we are honoured to be working with you for disability justice. Our partnerships, friendships and connections are precious to us. Thank you.

We want to inform you about a group that is actively working against autistic human rights. That group is Autism Speaks.

Autism Speaks, despite its name, does not speak for autistic people. When polled, 98% of autistic adults oppose Autism Speaks –and there is a massive global movement by autistic people and allies to stop Autism Speaks. In fact, regardless of the many differences among autistic advocates about politics and advocacy, there is one view we pretty much ALL agree on: that Autism Speaks is a hate group.

Some reasons:

Autism Speaks has allocated hundreds of millions of dollars towards “eugenics” projects that may seek to prevent autistic people from being born.

  •  Autism Speaks is a co-founder of the MSSNG project, a massive, far-reaching project to make a global database of 10,000+ autistic children’s DNA available for use by researchers throughout the world who can fill out a pop-up menu on their website to access it.
  • The DNA is extracted without the children’s permission.
  •  It is done with the purpose of identifying “autism genes” that will then be used in prenatal testing.
  •  If common genes are identified through this research, people will do prenatal testing and terminate pregnancies if they think there are “signs of autism”.
  • This project is active in Canada. Autism Speaks Canada has earmarked hundreds of thousands of dollars to its own arm of the project. A group of geneticists in Toronto has also been involved in collecting data for the database.
  • One of the project’s co-founders, Dr. James Watson, was fired from Cold Spring Harbour Laboratory for his racist remarks about African Americans, intelligence and using eugenics to find “a cure for stupid”.
  •  In addition to the basic eugenics of the MSSNG project, consider also the message that MSSNG sends to those of us who are right here, now: that our lives are not worth living and we would be better off to never have been born.
  • It also compromises the privacy rights of an entire disabled population as parents proxy-consent to their children’s DNA being stored and shared throughout their lifetimes.
  • In addition to MSSNG, Autism Speaks funds the Autism Tissue Program (Autism BrainNet), a network that distributes brain tissues donated by parents of deceased autistic children for “research into the causes of autism.”
  • Autism Speaks co-founder Susan Wright has publicly wished for a future in which autism is “a word for the history books.“
  • In Iceland, the type of genetic testing that the MSSNG project does, is already being used for the mass-abortion of fetuses with Downs Syndrome.
  • As Ontario mom Deanne Shoyer recently wrote: “I’m not going to support any organization who wishes my sons could have been prevented.”

From its inception, Autism Speaks has built its fundraising enterprise on telling stories about autistic people that portray us as a burden on our families.

  • Their 2009 video “I Am Autism” is narrated by a disembodied gravelly-throated man with images of autistic children as though they are sub-human, saying:

“I am Autism. I know where you live and I live there too. And if you’re happily married, I will make sure your marriage fails. Your money will fall into my hands and I will bankrupt you for my own personal gain. I will make it impossible for your family to attend any events without a struggle, without embarrassment, without pain. …You have no cure for me.”

  • In the US, the Autistic Self-Advocacy Organization recently cut ties with Sesame Street and the Ad Council for their partnership with Autism Speaks on its “100 Day Kit,” which: “encourages parents to blame family difficulties on their autistic child and to view autism as a terrible disease from which their child can ‘get better.’”
  • In Autism Speaks’ 2006 video Autism Every Day, its Executive Vice President Alison Singer described how she dreamed of driving her autistic daughter “off the George Washington Bridge”. The story was used to gain sympathy for the “tragedy” of autism – and gain donor dollars for the organization.
  • Autism Speaks merged with a sister organization, Cure Autism Now in 2006. Toegther they have dedicated many years and hundreds of thousands of dollars into researching the hypothesis of disgraced expert witness Andrew Wakefield that vaccines “cause” autism.
  •  In the view of many, Autism Speaks contributed directly to the anti-vaccination movement, with many parents of autistic children refusing to vaccinate their subsequent children. The belief behind it: “I’d rather my child suffer/die of measles than be autistic” impacted not only the individual children, but the entire disability community.
  • In 2016, co-founder Suzanne Wright released a public statement prior to a national summit referring to the “autism crisis” and equated having a child with autism to “not living.”
  • We don’t want a “cure”. We want to be accepted for who we are, and given access to all the rights that non-autistic people enjoy in our country.

Autism Speaks’ projects are built on the medical model of disability, which keeps us segregated and oppressed. 

  • Autism Speaks’ national march in Washington DC recently featured the Judge Rotenberg Center (JRC) at its Family Resource fair. The JRC has been sanctioned by the US government for using shock torture on residents at its facility.
    • The United Nations has condemned the JRC’s practices as torture, the U.S. Department of Justice’s civil rights division is investigating the JRC and the FDA has recently banned the JRC’s shock torture.
    • Yet the institution remains remorseless even though 6 residents have died directly or indirectly as a result of torture there.

Autism Speaks Canada is a major funder of CASDA, who collaborates with Autism Speaks on the proposed National Autism Strategy

We want you to know that if you partner with CASDA, you are also partnering with Autism Speaks–and in our view working against the ideals of disability justice. The issue of who controls autism policy in Canada is also about who controls our lives and/or whether we even get to live them. That’s why we’re reaching out, because this is extremely important for the future well-being of us all.

Thank you for taking the time to read this letter. If you have more questions, please contact us anytime. Thank you.

In solidarity:

-Autistics for Autistics Canada

PDF of the Letter: Open Letter to Canada’s Disability Rights Groups