Note: this a brief clip from a 90 minute panel, all of whom are incredible speakers that you should listen to because they know much more about this topic than I do. Please do listen to what they have to say.
Remarks by Keenan Wellar
Co-Leader and Director of Communications
Share Your Voice: Community Forum for Robust Safeguards in Bill C-14
(Information poster from Canadian Association for Community Living attached)
Thursday, June 16
In the company of this esteemed panel and audience, I am certain that Michael Bach invited me to bring some local perspective to this issue, as the rest of the panel is much more qualified and experienced with this topic. I will therefore stick to what I know, with the hope that it contributes to this incredibly important dialogue.
I’m not going to say much about myself or about my agency LiveWorkPlay, other than to share with you that in light of Canada’s ratification of the United Nations Convention on the Rights of Persons with Disabilities in 2010, our organization worked with our members to revise our mission, vision, and values. In 2011 we arrived at a new set of guiding statements, including this core value: people with intellectual disabilities are valuable contributors to the diversity of our communities, and to the entire human family. It is with this value in mind that I share the following comments.
I’m here today to give voice to concerns about assisted death as it relates to the experience of people with intellectual and developmental disabilities. This includes those with Down syndrome, autism spectrum disorders, and many other diagnoses, but in particular with dual diagnosis, which occurs when an individual with an intellectual disability is also impacted by a mental health issue.
I have been honoured and challenged over the past 25 years with access to the most intimate thoughts and fears of hundreds of individuals with intellectual disabilities and their family members. We’ve had the opportunity to help many of them move into a home of their own, get their first job, and find the places in community where they can use their talents and build their network of relationships and friends.
This is rewarding work in that in demonstrating positive outcomes we are able to influence the wider public understanding of the capabilities and value that people with intellectual disabilities bring to our communities.
What people hear less about is the time spent travelling to and from hospitals, after hours, days, or weeks of frantic distress calls, or in some instances, we are responding to a call from the police or a paramedic.
Sometimes these calls are with regard to a physical injury, but most often it is because an individual has suffered a serious mental health crisis.
I would have preferred that one or more of these individuals represent themselves here today, but the fact that they were unable to do so is part of the reason why we must not tread lightly into the dangerous territory of terminating lives for reasons other than a foreseeable natural death. They cannot be here because it is too traumatic for them to talk publicly about their despair and the idea that they might not be alive today if someone had been authorized to carry out their wish to be dead.
I am not a doctor and I am not a legislator. But I have walked with people through difficult times in their lives and I have witnessed the devastating impact of extreme despair, and the impossibility of rational decision-making for individuals who are experiencing prolonged emotional dysregulation. They become mentally and physically exhausted, which combined with ever-increasing social isolation, results in seemingly unbearable hopelessness.
What I have also witnessed time and time again is the wonder of human resilience. I have seen unbelievably dedicated family members and front-line professionals simply refuse to give up, and to patiently support incremental progress, often with severe ups and downs. I have witnessed the remarkable journey of individuals who had seemingly given up all hope.
Through words, actions, or a combination of the two, these desires get expressed in convincing and consistent fashion, sometimes over the course of weeks, sometimes months, and sometimes years.
The point is, they emerged from that despair because the opportunity to experience life in a different way existed, and that opportunity was never taken away from them.
Simply put, a person is in despair until they are not in despair. And I firmly believe that the loss of hope is not a condition to be addressed through the termination of lives. Our collective responsibility is not to relieve them of life to end their despair – or our own discomfort.
I mention the discomfort of society because we must confront the reality that people with dual diagnosis often make us very uncomfortable.
Our hospitals are under constant pressure to free up beds for other patients. Outside of the hospital environment, community agencies face levels of risk and the potential for public relations disasters at the same time as they are often challenged by a lack of capacity and resources. And so, individuals who are already in despair are bounced between emergency rooms, psychiatric wards, and various forms of emergency housing and services.
Responding to these challenging needs is something that we as Canadian society are only starting to learn how to do. Very few of our medical or mental health professionals have training or experience in supporting people with intellectual disabilities.
Here in Ontario it was only in 2009 that we finally closed the doors on the last of our mass institutions, where people used to live out their lives totally isolated from their own communities, and in many cases suffering severe and prolonged abuses. They lived and died and few people ever even knew their names, let alone the suffering they endured.
We did the right thing in closing those institutions, but we are still learning how to support people differently. We are still learning to help them build social capital and develop the natural relationships that are fundamental to our physical and mental health.
I have dedicated almost all of my adult life to building local community capacity, and I will be the first to acknowledge that there have been many failures along the way, but at the same time, I have also learned that we must never give up, and that giving up must not be an option.
I have witnessed time and time again how individuals have emerged from a state of total despair, have achieved stability, and have in fact gone on to flourish. These individuals are living in our neighbourhoods, contributing to our economy as workers, and bringing value to others through meaningful relationships. If you encounter them today, you will have no idea that they were once asking to die. Please think carefully about what it would have meant to have ended those lives.
And that is my simple message. Helping such a person to die is not an option now, and must not become an option in the future. We cannot turn feelings of hopelessness expressed over solutions that have yet to be found, into an excuse to stop trying to find those solutions.
We will instead invest in prevention. We will build community capacity and we learn how to more effectively support individuals with intellectual disabilities and dual diagnosis so they do not become isolated and hopeless.
And we will also invest in new ways of responding to mental health crises, with treatments that relieve rather than promote isolation, and with new forms of collaboration between community agencies, the medical community, and psychiatric services.
These changes are already occurring. We must therefore find within us as individuals, as parliamentarians, and as Canadians, the loving patience required to provide more effective support to people in need, rather than offer death to solve our own discomfort with the struggle to find the right solutions.
Please remember that people are in despair until they are not in despair, and it is our collective responsibility to help them find a way forward. With respect to Bill C-14, please don’t put giving up hope on our menu of treatment options. Please choose to support patience and love as the answer. Thank you.
Keenan Wellar and his wife Julie Kingstone are the founders of the LiveWorkPlay organization in Ottawa, with a mission of helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens. The organization is a registered Canadian charity, and celebrated a 20th anniversary in 2015. LiveWorkPlay is a leading-edge provider of person-centred and assets-based services with a focus on inclusive community outcomes. For more information see http://liveworkplay.ca.
Share Your Voice: Community Forum for Robust Safeguards in Bill C-14
Thursday, June 16th
Be strong. Be safe. Be heard. Canadians with disabilities are calling upon lawmakers to limit medically assisted death to persons at the end of life, who are free from inducement and fully informed of all medical and social interventions that could ease their suffering.
On Thursday June 16th, join a Community Forum for Robust Safeguards in Bill C-14 hosted by the National Disability Rights Community. We will let Parliamentarians know what is at stake for disabled Canadians and their families.
This event continues a national conversation, launched by the National Disability Rights Community. We are Canadians with disabilities, their families and supporters working to ensure that Bill C-14 protects vulnerable Canadians.
Bill C-14 will soon become law. This is our chance to share our messages with Parliamentarians. Be heard on why our lives are worth living and why the law must protect people from being pressured to use the system to die.
We need your voice. Stand with us in Ottawa and across Canada this Thursday.
The Honourable Carla Qualtrough, Minister of Sport and Persons with Disabilities has confirmed her attendance.
WHAT: Share your story at the Community Forum for Robust Safeguards in Bill C-14. Tell parliamentarians:
- Why medically assisted death threatens us What it means to live with dignity
- Why we must limit medically assisted death to those who are dying
- That our lives—as they are, in all their human-ness, frailty, beauty and needs—are worth living, and must be valued as any other life
WHEN: Thursday, June 16th, 11:30 am until 1:00 pm
JOIN THE EVENT BY WEBCAST & SHARE YOUR MESSAGE TO PARLIAMENTARIANS ONLINE:
JOIN THE CONVERSATION ON TWITTER: #OurVoiceMatters
PARTICIPATE IN PERSON AT: Rideau Room, Sheraton Ottawa Hotel – 150 Albert Street, Ottawa. If you are joining in person in Ottawa, please RSVP at firstname.lastname@example.org. Simultaneous interpretation, ASL, LSQ, English captioning.
Welcome: James Hicks, National Coordinator, Council of Canadians with Disabilities
Moderator: Michael Bach, Executive Vice-President, Canadian Association for Community Living
- Catherine Frazee, Professor Emeritus Ryerson University School of Disability Studies
- Ellen Cohen, National Coordinator, National Network for Mental Health
- Bonnie Brayton, National Executive Director, DAWN-RAFH Canada
- Keenan Wellar, Co-Founder, LiveWorkPlay Ottawa
- Jennifer Johannesen, ethicist, parent and patient advocate
- Amy Hasbrouk, Toujours Vivant-Not Dead Yet
- Harvey Chochinov, Canada Research Chair in Palliative Care