Thank you.

Honourable members and guests, I am here today both as a person living with long-term impacts of brain injury and as an advocate for my community as a peer support worker for people living with brain injury. Thank you for having me as a part of this important conversation.

I sustained my injury by simply falling on the ice. I was 29 and working in a promising career. Eight years later, I am just one year into secure and meaningful work that sustains me financially for the first time since my injury. It has taken me this long to heal enough, learn how to manage my symptoms, tend to the intense struggles with mental health and nervous system dysregulation, and find balance with my well-being and capacity.

I have had a lot of help from different practitioners, whom I mostly sought out myself. I learned how to build the support team around me and become my own expert, in a way, out of necessity, which I have learned is a very common experience. To do so with compromised cognitive, emotional, and physical capacity is almost impossible to explain. At times, I was unable to walk more than a few steps without falling over, to make sense of how to cook myself a meal, or to string words together in a meaningful way. I didn't understand what was happening to me, and I needed supports that I didn't have. I tried to learn about concussions by trying to make sense of what I could find on the Internet, which can be a really dangerous and unreliable source without proper guidance.

It is also impossible to explain the loneliness and isolation that come from this experience. As I shared in my brief, if I hadn't had the financial, emotional and practical support of my family and close friends, I would have very likely ended up homeless and/or would have succumbed to my suicidal thoughts as a way of escaping the pain, as many, many do—all of this from an injury classified as a mild traumatic brain injury. As Dr. Charles Tator has said, “There is nothing 'mild' about concussions”.

Four years after my head injury, I started Concussion Cafe Yukon, a peer support group in Whitehorse. People with injuries of all kinds attend, from stroke to electrical injury, concussions, and survivors of severe traumatic brain injury. Four years later, I am being compensated to continue this work due to the high need. It is the only brain injury-specific community support in Yukon.

The gaps in our brain injury support systems are so vast they are difficult to cover, but I'll name a few.

Currently, there is no category of support for adults with acquired brain injury within disability services, whether you had support prior to becoming an adult or not.

Many people are encouraged to drive themselves home from the hospital—if they can get there—with very little information on what to expect and how to take care of themselves, and often with inadequate follow-up. Many have to travel south for proper care and rehabilitation like I did, which is stressful and challenging at the best of times, and it can provide added complexity and slow recovery.

Most of us pay for our care out of pocket, which can be an intense burden. Women experiencing intimate partner violence can face further barriers to leaving dangerous situations and to recovery, given the particular challenges of brain injury. Many members of our community struggle with daily tasks, like food preparation, transportation, and executive functioning skills without access to support workers, which is taxing both on the survivors and on their loved ones.

The parents with brain injury in our community face immense pressures and challenges that impact the whole family system. Some members of our Concussion Cafe Yukon community are homeless. Brain Injury Canada shares that at least 50% of people who are homeless have had a brain injury. Every member of our brain injury community faces mental health challenges, as well as the caregivers, who report feeling taxed, undersupported and alone.

We don't have any statistics on how many Yukoners are injured each year or how many live with the long-term impacts of head injury. I do know that most people I speak to have a personal story to share.

As shared in a paper by Lasry and colleagues in the National Library of Medicine, we know that the occurrence of brain injuries is higher and outcomes are worse in remote communities. They are also disproportionately higher in first nations populations, meaning that remote Yukon communities are in significant need of supports and care. We also know, through Government of Yukon statistics according to per capita sales, that alcohol consumption in Yukon is the highest in the country. Substance use, struggles in mental health, isolation and brain injury are all correlated.

It is impossible to understand the need without necessary data, or for frontline workers to provide brain injury-informed care at hospitals, in mental health settings or in substance use spaces without more resources, education and supports.

Thanks to the dedication of family members, survivors and brain injury professionals across the country, we now have a Canadian charter of rights for people with brain injury to reference. It is deeply impacting for me to have this on my wall for those I serve in the community as a guide for a standard we are orienting towards and to remind people that they matter, despite what is being reflected back to them through our health care system.

However, identifying an ideal is not enough. We need to take collaborative action across the country in order to make change in how we respond to and provide care for brain injury in Canada.

Thank you.