Autistics United Canada organizers have asked a fellow organizer to step down from their role after a number of their actions negatively impacted the safety of other AUC members, particularly multiply marginalized members. Over the past few months, Autistics United Canada organizers have been in conversation with this person, calling them in with the help of a friend of theirs and fellow organizers. At this time, we still welcome this person as a continued general member.

We are also trying to take accountability for our responsibility in this as a group and are taking steps to prevent similar incidents in the future. This includes building capacity among organizers by:

• Creating spaces to build skills among organizers for accountability as an ongoing practice, including a safer space for organizers to discuss and take accountability for our actions
• Conducting ongoing training for organizers old and new about accountability, conflict resolution, and transformative justice
• Revising our community guidelines specifically for organizers to include clearer accountability protocols
• Creating a resource list about accountability and transformative justice for all our members

All of this is part of our efforts to make Autistics United Canada a safer space for our current and future members, particularly autistic BIPOC, women, and non-binary folks.

We further recognize that a balance needs to be made between avoiding cutting people off from community (harmers and harmed), and at the same time ensuring that people doing harm in positions of power are removed from those positions of power.

If anyone would like clarification on this post or would like to share resources - please reach out to us by emailing us at info@autisticsunitedca.org or messaging us on our social media. Thank you for your understanding and support as we struggle together to create safer and more just spaces inside and outside of AUC.

[Image description: red text on white background that says "International Day of Protest Against ABA #ProtestABADay #SayNoToABA @Protest ABA". White text in a red circle that says "Aug 31"]

​August 31, 2020 will mark the third annual International Day of Protest Against ABA.
 
This event takes place on August 31 to mark the anniversary of the Cardgate scandal. This scandal involved "Cards Against Humanity"-style cards based around ABA. The cards were created by an ABA therapist very active on social media, and made light of abuses such as physical restraint and skin shocks.
 
After years of advocacy by disabled advocates like Lydia X.Z. Brown, Jennifer Msumba, Emily Titon, Shain Neumeier, Cal Montgomery, Ari Ne'eman, Sam Crane, Julia Bascom, and Anita Cameron against the Judge Rotenberg Center (JRC) and its use of electric shock torture, the FDA has finally banned the electric shock devices used by the JRC. Unfortunately, the FDA decided to stay the ban last month when the JRC appealed.
 
We have also seen more studies come out against ABA, including:
 
--one from the US Department of Defence demonstrating that ABA doesn't work;
 
--one from the Kennedy Institute of Ethics Journal outlining the ethical problems with ABA;
 
--and one from the Journal of Child Psychology and Psychiatry calling out the many conflicts of interest in autism early intervention research.
 
We have also seen an article from education expert Alfie Kohn criticizing ABA for being harmful to those subjected to it.
 
As with previous years, this will be primarily an online event, but in future years we hope to have some physical events. We invite autistic people and allies to share or retweet writings, videos, and art by ABA survivors, neurotypical and autistic parents of autistic children, and former ABA therapists, using the tag #ProtestABADay.
 
Want to submit a piece of writing, art, or other media about ABA to be shared on our @ProtestABA Facebook page? Send it to info@autisticsunitedca.org! We will be prioritizing and amplifying voices from ABA survivors in particular, but all submissions are welcome for consideration. 
 
#ProtestABADay
#SayNoToABA
#MoreWaysThanABA
#YesAllABA

For 20 years, governments in Canada have promised to close residential institutions for disabled children and replace them with appropriate services so that children could continue to live with their families, form healthy attachments and attend inclusive school settings.  Following a documentary expose in 2013, the government of Nova Scotia renewed its commitment to closing such institutions.

Yet this week, ground was broken for a residential institution in Sydney River, Cape Breton which would house autistic children as young as 2 years of age, away from their families 24 hours a day.  The Province appropriated $1.2 million towards the segregated home for disabled children.

The Nova Scotia Government has broken its promise to the families of Nova Scotia.  In its Roadmap for Choice, released in 2013, the Government set a ten-year timeframe for closing residential institutions and clearing waitlists for supportive housing and community living.

If the Government claims to be committed to closing all residential institutions by 2023, then why is it building new ones?

Disability rights advocates and families have been fighting for decades to close residential institutions, and in April 2019, the Disability Rights Coalition of Nova Scotia sent an open letter to Premier Stephen MacNeil demanding that all such institutions be closed.  This is being echoed by even more families in this time of COVID-19, because disabled Nova Scotians living in congregate care facilities are in danger of catching COVID-19 or are unable to visit with their parents and family members due to the threat of COVID-19.

Shamefully, 80% of federal funding for autistic and intellectually disabled people’s housing is still being allocated for segregated institutions.  What families need is support for children to live with their families and independent living (apartments, in the community) for disabled adults.  Building new residential institutions like this breaks the government’s promise to end the era of segregated residential institutions.

A recent decision by the Nova Scotia Human Rights Board of Inquiry ruled that the institutionalization of disabled people is harmful and discriminatory.  The construction of a new group home for autistic and intellectually disabled children is a colossal step backward.   The fact that children as young as two years old will be living there is particularly obscene.

It doesn’t matter how many measures they take to address sensory overload, and it doesn’t matter how many Superman or Bob the Builder decorations they include.  An institution by any other name is still an institution.  It is not home for these children, and they need to be home.

Families want to keep their children at home, but all too often they are not given adequate supports to do so, so they turn to institutions like this.  These institutions lead to a lifetime of segregation and isolation for the residents.  Disabled children should remain with their families and have access to appropriate support services at home, and not live in residential institutions.

If the Government of Nova Scotia believes in honouring its promises and protecting the human rights of disabled children, it will halt construction of this project right now.  It will make sure that future funding decisions that affect disabled Nova Scotians involve the full input of disability groups such as Autistics United Nova Scotia, Autistics for Autistics Atlantic Provinces, People First Nova Scotia and the Disability Rights Coalition of Nova Scotia-- and be based on the solid research about where disabled children should be living: at home and in their communities!

Our provincial government should immediately cease all funding for residential institutions for disabled people and re-direct said funds towards meaningful supports to keep children living at home and attending public schools with their non-disabled peers, and community-based living options for adults. 

Nothing About Us Without Us!

We have a petition that we strongly urge you to sign, either as an individual or as an organization.   Use the buttons below to sign on.

[Image description: photo of a young boy with short black hair smiling next to an illustration of a blue flower. Text reads: "Remembering Alejandro Ripley May 21, 2020"]

TW: murder of an autistic child, filicide, racism

With grief and sorrow, we are sharing news of another murder of an autistic child, Alejandro Ripley. Alejandro was killed by his mother. Prior to confessing, she lied to the police, claiming that two Black men abducted her child and endangering the local Black community in the process.

There is never justification for murdering an autistic child. Our lives are worth living. There is always another choice than murder.

Let's remember Alejandro Ripley. He was 9 years old. He was described as "sweet and happy". He liked Captain America. He was a non-speaking communicator. His smile was shy and bright.

Let's call what this murder is: an ableist and racist hate crime. The Autistic Self-Advocacy Network reports that the rate of disabled people being killed by their parents or caregivers is at least one a week. Even one is too many. Even one is a tragedy, a life cut short from hate, not love.

​It's the hate of disabled people by society--systemic ableism--that drives and attempts to justify these murders. It's the hate of Black people that allowed the mother to easily lead the police away on a chase for two imaginary Black men.

Battling ableism requires challenging the idea that disabled lives are not worth living. It requires disabled people leading the conversations and decisions about our lives, moving away from segregation and towards mutual support and interdependence. Disability justice mandates that those most impacted lead the change.

Alejandro Ripley's life was just starting, and it was worth living. He could have been happy. He could have been a leader. We'll never know.
​
We call for justice for Alejandro Ripley. We call for disability justice for all of us, disabled, autistic, and grieving another in our community lost to violent ableism.

Today is #GivingTuesdayNow!

During this unprecedented time, we have kept fighting for autistic rights and disability justice. Not only do disabled people deserve to be safe during this pandemic, but we deserve to have rich social lives as well—even while physically distancing.

We encourage you to join us in this effort by supporting our activities that help autistic people during this time.

Your donation will be going towards funding:

1) Our online socials, including playing boardgames and infodumping,

2) Our workshops and conferences, such as our upcoming All Brains Are Beautiful workshop,

3) Maintaining resource lists for Autistics during the pandemic, and

4) Advocating for AAC access and caregiver support in hospitals.

Thank you so much for your continued support! If you can, please donate here: https://www.autisticsunitedca.org/donate.html

We understand that many people have difficulty with financial security right now, so please do not feel any pressure to donate if you are struggling. Sharing our posts and our work on social media helps immensely too! 
​

A Toronto hospital has denied 69-year-old Tommy Jutcovich his main means of communication - an iPad - by calling it a "surveillance tool". This is a gross human rights violation.

One hour a day is NOT enough to communicate with hospital staff and with his family. That is all the time they are giving him on his augmentative and alternative communication device.

In an impassioned plea, Tommy's daughter begged for help. His family is unable to visit Tommy during the pandemic. The iPad is Tommy's connection to the outside world, his mental health support, and his voice. By taking away his AAC device, the hospital staff are silencing him for 23 hours each day. This impacts his care, with no way to raise new concerns or communicate his symptoms and pain.

When a disabled elder has difficulties speaking or moving, with no family around, he is extremely vulnerable to abuse and medical neglect. People in hospitals, institutions, and long-term care homes should have the right to document their care for their own safety.

1) Sign & share the petition
Tommy Jutcovich’s family has started a petition to demand TGHC to give him access to his primary communication device: http://chng.it/5WNDXCrbrb

2) Contact the Toronto Grace Health Centre to tell them that #CommunicationIsARight and #AACSavesLives!

Online form: http://www.torontograce.org/about-tghc/contact-tghc/
Email info@torontograce.org
Phone: 416-925-2251
Fax: 416-925-3211
Twitter: @TorontoGraceHC

Patricia Skol - Director, Quality, Patient Experience, Professional Practice & Chief Nursing Executive (CNE)
Email: pskol@torontograce.org
Phone: 416-925-2251 ext 219

Jake Tran - President & CEO
Email: jtran@torontograce.org
Phone: 416-925-2251 ext 295

---

Sample script for AAC users:

Hello Toronto Grace Health Centre,

I am writing to you to urge hospital staff to give Tommy Jutcovich access to his iPad for communicating with staff and with his family.

I am an AAC user. That means that like Tommy, I also cannot rely on oral speech reliably to communicate, and use augmentative and alternative communication.

One hour a day, at the whim of hospital staff schedules, is not enough for a person to be able to communicate through their ideal means. This means 23-hours of silencing a person's voice. That is an act of violence.

During COVID-19 physical distancing measures, an iPad is Tommy's connection with his family, his religion, and the outside world. Allowing him only an inconsistent hour of time with his family per day is callous and inhumane.

This is a gross human rights violation: both in denying Tommy a connection with his family and in denying his right to communicate.

I strongly urge TGHC to reconsider their decision to harm their patient by denying access to communication.

Sincerely,
[Your Name]

---

Ironically, TGHC is a member of Safer Healthcare Now, a "national campaign to promote improvements in patient safety". They have a campaign to #ConquerSilence. We encourage people to submit their concerns about TGHC to this campaign.

Sample tweet:

Hey @TorontoGraceHC, how can you claim to #ConquerSilence as a member of @Patient_Safety when you are actively silencing a non-speaking disabled elder patient by taking away his #AAC device 23 hours a day? Give Tommy Jutcovich his iPad! Let him speak to his family! #AACSavesLives

---
3) Share our 5 calls to action about communication access in hospitals with your MPs & provincial/territorial reps.

​We have linked tools to help you contact your representatives.

This was in light of the recent death of Ariis Knight in BC, who was denied access to support staff and family who helped facilitate her communication.

---
4) Sign A4A Ontario's petition on patient access to AAC in hospitals:
​
https://www.change.org/p/public-health-agency-of-canada-create-protocols-for-aac-access-in-hospitals

We have some exciting events coming up this month!
​

Date: Saturday May 9, 2020
Time: 1:30pm PDT / 2:30pm MDT / 3:30pm CDT / 4:30pm EDT / 5:30pm ADT
Location: Zoom video conferencing

RSVP: https://bit.ly/aucABAB
Facebook event: https://www.facebook.com/events/2482024898718004/

You will receive an email with a link to the webinar within 24 hours before it is scheduled to start.

What is neurodiversity? How can we better support neurodivergent and disabled folks in our communities? How do we leverage our individual and collective power to act on disability justice?

All Brains Are Beautiful is a free introductory workshop on neurodiversity, autistic identity, disability justice, collective access, inclusive event planning, and more!

Date: Sunday, May 31, 2020
Time: 1:30pm PDT / 2:30pm MDT / 3:30pm CDT / 4:30pm EDT / 5:30pm ADT
Location: Zoom video conferencing

RSVP: https://tinyurl.com/aucinfodump
Facebook event: https://www.facebook.com/events/568333843789054/

You will receive a link to the webinar within 24 hours before it is scheduled to start.

Come join our digital celebration of autistic passion and interests!

As autistic people, our intense interests are a source of great meaning and joy. Let’s share that with one another! In this online symposium, volunteers will give 5 minute talks on a topic they’re passionate about, with time for questions from the audience.

If you are autistic and are interested in participating as a presenter, send us an email (info@autisticsunitedca.org) with a 1-3 sentence proposal of a topic you’d like to present on. If you would like you can send us multiple topic proposals, and we can help you select one of them. You will need a computer microphone.

Deadline for proposals: May 15, 2020

[Image description:

Illustration portrait of Ariis Knight, a person in a wheelchair looking up with medium length brown hair and wearing a scarf and a flower necklace.

Yellow banner surrounded by flowers above reads: "Ariis Knight
April 3, 1980 - April 18, 2020"

Yellow banner below reads "Ariis' Law"

Text: "Patients with disabilities need the care and advocacy of someone who knows and loves them. <3 (heart)

The presence of family or a support person can reduce anxiety, support patient safety, and enable communication and decision making. <3 (heart)

We are not visitors--
We are essential partners in care <3 (heart)

@drawing.change

#NotJustAVisitor"] Image Credit: Drawing Change


Her name was Ariis Knight. She was 40 years old. She communicated through her eyes and facial expressions; she had a beautiful smile. She was described to have a "bold sense of fashion" and a "huge personality". She died alone in the hospital without access to support staff or family.

A non-speaking B.C. woman with cerebral palsy who "defied limitations", Ariis was admitted to Peace Arch Hospital on April 15th and died days later. Because of unclear COVID-19 restrictions, the hospital denied access to support staff and family who would have supported her communication and decision-making at the end of her life. 

We know in the disability community that if there isn't someone to be with a disabled person at the hospital, to say these are the supports this person needs, to say we are watching if medical neglect happens (and it does), they can die. While we do not know if the lack of communication and support directly resulted in her death, it could have played a role and certainly impacted the quality of her care and carrying out her end-of-life wishes. The unjust circumstances around her death were entirely preventable. 

Allowing support people and family to aid a disabled person at hospital visits is essential, not exceptional. It is also the responsibility of the hospital to ensure disabled people have access to communication supports, whether that be AAC (augmentative and alternative communication) or a support person.
​
It in Ariis's case, she died without anyone who cared for her around her. This is not simply a tragedy; it is an injustice that was created by ableism and systemic failures to ensure disabled people are protected during the pandemic.

Her story isn't unique. We are hearing across the country that disabled patients in hospitals are being denied access to supports, when policies are unclear and implementation is inconsistent in designating support staff and families as essential. Self-determination, supported decision-making, and communication access are human rights that cannot be denied during a pandemic. 

Disabled advocates have been flagging this as an issue for weeks. We call on the federal and provincial governments to act urgently to put a stop to these unjust deaths. We urge governments to: 

1. Create unified policy across Canada with clear, unambiguous language deeming support staff and family as essential to accompany disabled people needing supports for communication, decision-making and specialized care in hospital visits. 

2. Mandate access to alternative and augmentative communication (such as the patient's own AAC device, a sign language interpreter, or a support person who understands their communication style) in all hospitals and clinics. 

3. Implement these policies comprehensively at the provincial and territorial level with training and orientation of hospital staff.

4. Strengthen and streamline existing complaints processes through patient quality care offices, so that accessibility barriers can be addressed in a timely manner.

5. Support hospitals in making plain-language materials to help disabled patients understand their situation and options. 

These changes need to happen now. But they won't help Ariis, who has passed on and left behind loved ones to mourn her and remember her. As a community, we grieve for the tragic loss of a fellow disabled person's life. 

We remember you, Ariis. Rest in power.


----

Share our five calls to action with your MP and provincial/territorial representatives to demand for change in Ariis's memory. 

You can look up contact information for your federal representative  / MP on the Parliament website.

Use the links below to find contact information for your provincial/territorial representatives:

• British Columbia
  
• Alberta
• Saskatchewan
• Manitoba
• Ontario
• Quebec (français) 
• New Brunswick
• Nova Scotia
• Prince Edward Island
• Newfoundland & Labrador
• Yukon
• Northwest Territories
• Nunavut