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.
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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! 
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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

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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]

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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

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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.

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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!
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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.


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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
  

For this year's Autistic Acceptance Month, Autistics United Fort McMurray chapter organizer Christopher Whelan has written a series of short essays on autistic rights. We have selected a few of our favourites to share! 
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[Image description: An Alternative and Augmentative Communication placard with signs for various food and drink related words]

​Normalize Alternative Communication

​Traditional methods of communication, like spoken word, are often inaccessible to autistic people. Some autistics do not speak. Of those autistics who can speak, many of us find spoken word to be overwhelming to our senses and uncomfortable to do for long periods of time, if at all. Some members of our population go into “non-verbal space” and are drained of their capacity for spoken word when they are in sensory overload.

While speech language pathology is often prescribed for autistics that are disabled in spoken communication, and can be very helpful in bridging communication needs, normalizing mandatory speech rehabilitation as a default prescription is not inclusive or in the spirit of Autism Acceptance. Speech language pathology is a barrier to place on an autistic person as it is an extracurricular exercise they must take in order to accommodate typical society. Instead of placing the onus to “make up” for their disability on the disabled, we must make society more inclusive of the needs of people disabled by communication demands.

To achieve accessibility of communication, alternative communication must be widely understood and normalized. Alternative communication can come in the form of sign language, hand signals, writing, typing, symbols, pictures, and Alternative and Augmentative Communication as shown in the placard above. Alternative communication can be its own language, agreed upon by people who have never met each other, such as American Sign Language or written language, or it can be as simple as a hand gesture privately shared between two people who know each other.

Autistics call for the expansion of alternative communication so that more people are familiar with these communication styles and can reciprocate communication with them. Alternative communication must be normalized and held in the same regard as if the person using it was speaking.

Other select essays:

• Value the Input of Autistics on Autism Policy​
• Let Us Lead
• Include Autistic People In News Stories About Us
• Promote Neurodivergent Peer Support & Advocacy Groups
• Free to Stim
• Safefood: The Medicinal Properties of Chicken Nuggets
• Healthy Autistic Sex​​
• All ABA Hurts Autistics
• ​Normalize Alternative Communication

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Christopher Whelan is an autistic social worker living and working in his home community of Fort McMurray, Alberta, Canada. Christopher is a founder of Neurodiversity YMM and Autistics United Fort McMurray – Cree, Dene, Dane-zaa, & Métis Territory. After months of consultation with autistic self-advocates, Christopher published The 95 Theses of Neurodiversity in April 2020. You can read more of his work on his blog, AutisticRights.net.

For this year's Autistic Acceptance Month, Autistics United Fort McMurray chapter organizer Christopher Whelan has written a series of short essays on autistic rights. We have selected a few of our favourites to share! 
​

[Image description, a black button with white words “quiet hands”, with the “quiet” crossed out to say “loud” in multiple colours]

All ABA Hurts Autistics

Applied Behavioural Analysis (ABA) therapy is the practice of converting autistic behaviour into neurotypical behaviours through the documentation and evaluation of behaviour and then re-directing it to more acceptable expressions. It has had a traumatizing effect on autistic people, and the communal trauma of this still-prescribed therapy reverberates throughout the autistic community. As well as being linked to post-traumatic stress disorder in adults, ABA does not produce results in shaping behaviour except for facilitating shame, despair, and self-harm.

ABA, as its founder Ivar Lovaas had envisioned and practiced it, utilizes torture implements against people who exhibit autistic behaviour, open-hand violence, and denying subjects food and sleep until they stop exhibiting autistic behaviours. Lovaas-styled ABA is still practiced today around the world, closer to home than anyone would like to believe. While the use of aversive-based therapies are a clear example of anti-autistic violence, we must also challenge the idea that the new “Gentle ABA”, which is gaining traction in the West as a referred therapy for autistic people, is a reformed and gentle version of its original namesake.

Instead of using torture and aversives to convert autistic behaviour into neurotypical behaviour, it is instead achieved through incentivizing neurotypical behaviour. Subjects are given candy, playtime, and other rewards for exhibiting acceptable learned neurotypical behaviours instead of the expressions that come most naturally to them. Instead of being punished for appearing autistic, they are rewarded for appearing neurotypical. That is why “Gentle ABA” does not produce results. It does not re-direct behaviour. It encourages us to appear a certain way, temporarily.

Neurodivergent circles use the term “Masking” to describe incidences where we must appear to be neurotypical in order to meet our basic needs, be safe from harassment and bullying, and be treated as an equal in society. Quietly sitting in place when we want to run around a room screaming, and keeping quiet when we want to say our favourite words and talk about our special interests, are examples of Masking. Masking is inherently both harmful and necessary in our world. Gentle ABA incentivizes autistic people to wear their Mask more tightly and more often, even in their own homes when nobody would think less of them for exhibiting autistic behaviour.

But the longer you Mask, the more susceptible you are to low self-esteem and mental unwellness. By internalizing that what you naturally are is sinful, bothersome, and a burden to the people around you, you wish harm on yourself. Autistics who naturalize their own Mask, and wear it too often, are more prone to developing addiction, self-harm behaviours, suicidal thoughts, and to attempt suicide. People who did not know that they were autistic also report that having naturalized their Mask lead to these harmful experiences.

Autism Acceptance means normalizing autistic behaviour in society. It means a guarantee that autistic people will not be considered lesser than a neurotypical person or lesser than an autistic who exhibits atypical behaviours less frequently. It means working towards a society where we will not need to mask to keep ourselves safe, and disenfranchising therapy programs that incentivize masking.

Other select essays:

• Value the Input of Autistics on Autism Policy​
• Let Us Lead
• Include Autistic People In News Stories About Us
• Promote Neurodivergent Peer Support & Advocacy Groups
• Free to Stim
• Safefood: The Medicinal Properties of Chicken Nuggets
• Healthy Autistic Sex
• All ABA Hurts Autistics
• Normalize Alternative Communication​​

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Christopher Whelan is an autistic social worker living and working in his home community of Fort McMurray, Alberta, Canada. Christopher is a founder of Neurodiversity YMM and Autistics United Fort McMurray – Cree, Dene, Dane-zaa, & Métis Territory. After months of consultation with autistic self-advocates, Christopher published The 95 Theses of Neurodiversity in April 2020. You can read more of his work on his blog, AutisticRights.net.