Lack of understanding and disrespect impacting people with brain injuries

Written By Sam Odrowski

June is Brain Injury Awareness month in Canada and this year's theme is “Shine a Light on Brain Injury”, designed to show the prevalence and impact of the injury that impacts more than 500,000 Ontarians. 

For most who are impacted, it's an invisible injury, one that can lead to stigmatization and discrimination when interacting in the community. 

Depending on the type of brain injury someone has, they can have trouble with balance or communicating and become easily angry, confused or sad. The injury can also lead to poor mental health and facing barriers when out in the community trying to live their lives. 

Barbara Gilchrist, day services program coordinator at Mind Forward, a government funded organization that supports adults with brain injuries, said its common that when clients go into stores they're misunderstood and can receive disrespect from other customers or employees. 

“There can be misdirected comments from the customer service staff,” she said. “That's something that is always being worked on, how to be allies, how to be aware.”

If someone appears to be acting in an unusual or difficult way but look normal it could be that they're suffering from the impacts of a brain injury, Gilchrist explained.

Shelburne resident, Katie Lang, 35, who was born deaf and with learning difficulties, had an Acquired Brain Injury (ABI) in 2018 when she was walking across Main Street and struck by pickup truck, forcing her 25 feet into the air. Katie told the Free Press, people sometimes behave harshly towards her because of her brain injury.

“I think people needs to be much more understanding and patient with people. If they're struggling to understand something you just have to think, well why?” said Katie's mother and caretaker Karen Lang.

In addition to increasing one's awareness that anyone can have a brain injury and it may present itself in a variety of ways, it's also important to make people who have brain injuries feel included in society, Karen noted.

“The main thing that I see is a lack of inclusion and lack of understanding,” said Karen. “Just because my daughter's deaf and has some learning disabilities, I've watched it my whole life, and I've seen how people treat her.”

She added, “That's my message, include them, don't leave them out thinking that they have no feelings, don't ignore them, don't think that they don't matter.”

Talking about the issue and speaking up when witnessing discrimination are two important things people can do to help fight the stigma, said Karen.

Meanwhile, an ongoing problem for those impacted by brain injuries is a lack of funding for organizations like Mind Forward, according to Gilchrist. She added that Ontario Works and the Ontario Disability Support Program (ODSP) isn't enough to cover rental costs for a lot of the people who have a brain injury and the wait list for rent geared to income is around seven years in Orangeville. 

Gilchrist noted that with a lack of monthly funding for individuals who are unable to work because of their brain injury and the array of impacts serious brain damage can cause, a lot of individuals without strong familial support systems can find themselves living on the streets.

Of the 235,000 people who are homeless in Canada each year, approximately 50 per cent of them have a brain injury, according to Brain Injury Canada, a national advocacy group.

Another area where people with brain injuries are disproportionately impacted is the prison system. People who suffered a Traumatic Brain Injury (TBI) are roughly 2.5 times more likely to be incarcerated in a Canadian federal correctional facility than those have not, according to a study published in the Institute for Clinical Evaluative Sciences (ICES).

In the early stages of a brain injury, impacting an area of the brain that controls disinhibition or self-monitoring, a person can become violent or aggressive, Gilchrist said. This makes it important to seek help and become rehabilitated as soon as they can.

When looking at success stories for Mind Forward, which offers support services in Dufferin, Peel and Halton, Gilchrist says she's seen many over the years. 

Katie Lang is among the Dufferin County residents who the organizations supports and said they have helped greatly with her energy, emotions, and making new friends.

“Mind Forward is a very good place, they helped me a lot,” Katie said. “It's helped me meet new people and making new friends. Get out of the house.”

Karen told the Free Press accessing Mind Forward has been a “lifesaving experience”. 

In terms of other success stories, Gilchrist said she's seen a client who was extremely violent due to his brain injury, receive counselling and support through Mind Forward that led him to living a non-aggressive, independent life.

“Now he lives in his own apartment in Mississauga. He's got lots of friends and he's just one person that's just been amazing to watch him thrive,” she noted.

A woman who received support attended Mind Forward's writing groups and became an author, with 12 children's books and three novels published to date.

The psychosocial, anger management, and men's and women's groups at Mind Forward have helped a lot of others as well, said Gilchirst.

“Friendships develop between the people there who realize they're not alone, because we're there to facilitate their talking and sense of community,” she told the Free Press.

Without supportive resources, a lot of people who struggle with a brain injury can feel isolated, excluded, and alone. 

In Orangeville one of the main types of support Mind Forward provides is case management, which helps clients find a place to live, deal with court cases, get the right medications, and ensure there not facing barriers to living a healthy life.

“With every single individual we work with, they all have their own needs their own service plan, we cater to every individual and what they need for their rehabilitation. Then we'll find those extra resources,” said Gilchrist.

To apply for services from Mind Forward visit: mindforward.org/apply-for-services or call 

519-942-0111.

Another resource for people with brain injuries in Dufferin County is the Headwaters Acquired Brain Injury (HABI) support group, which Karen said has been an incredible help since Katie's suffered her brain injury four years ago. 

To learn more about HABI visit: headwatersabi.net