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/
Patricia Skol - Director, Quality, Patient Experience, Professional Practice & Chief Nursing Executive (CNE)
Phone: 416-925-2251 ext 219
Jake Tran - President & CEO
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.
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.
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:
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: 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:
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.