Published on January 31st, 2018 | from CAMH

Engaging people with developmental disabilities

By Dr. Yona Lunsky, Senior Scientist in the Adult Neurodevelopmental Service

On Bell Let’s Talk Day, we are encouraged to talk about mental health and mental illness. Although Bell Let’s Talk began in 2010, it was only two years ago I started to consider how conversations about mental health on this day could and should include people with developmental disabilities.

Bell Let’s Talk is about reaching out and building an atmosphere where everyone has the same opportunity to talk about mental health and mental illness. It is about inviting new people to join the conversation and reminding them that their views matter.

So in January 2016, we started talking about it.

That year, my colleagues and I wrote a piece on why we need to talk about mental health and developmental disabilities for staff who work in the developmental sector.  We laid out what the research tells us about mental illness and developmental disabilities and made practical suggestions on how to better meet the mental health needs of this population. That same year, we partnered with Special Olympics Ontario to develop some videos about mental health for youth with developmental disabilities, based on a conversation with Special Olympics Athletes.

But people with developmental disabilities and their families – who are themselves “experts by experience” – need professionals like me to not only talk. They need us to listen.

In the last few weeks, I’ve received quotes, stories, photos and art from people with developmental disabilities and their families in response to a suggestion I made to encourage them to talk about mental health. I posed a few questions, gave examples of sentences people could complete for themselves and suggested that people could also show what mental health means to them through photos and art, as opposed to just words.

Here’s some of what I’ve heard:

“Sometimes it’s okay not to be strong. You have to allow yourself to feel all the feelings.”  – Sue Robins, Vancouver, B.C.

“In cases of mental health issues, learning, loving, understanding and achieving is the recipe for success. As a parent who has lived the experience and had to learn by ourselves, we know our children the best.” – Steve Payne, Sudbury, ON

“I asked my son Nick, ‘what makes you feel better when you are sad or feeling down?’ He said, ‘watching hockey, but only if the Sens win.’ This is a serious answer for him because he uses his interest in sport to bond with others, as well as to distract himself from physical and emotional pain.” – Donna Thomson, Ottawa, ON

“To help myself feel better, I do my crafts. I make centerpieces as a hobby. I also try to go out and meet new people. I try to work on making positive changes in my life and daily activities. If I don’t take care of my mental health, I can be sad and depressed… I take care of my mental health by talking about stuff, not just keeping it inside. It helps me when I have support. Sometimes I feel alone.” – Chantale Guenette, Sudbury, ON

“I eat healthy foods, take medication and exercising daily for 30 minutes. I have a good sleep routine. I hang around with positive people, listen to music, and visit my doctor regularly. Crap does happen often but we must continue on with our lives and we will overcome each obstacle as it approaches.” – Lisa Schmidt, Stratford, ON

Several people talked about the fact that sad things happen and they can get through difficult times. Helen Ries came up with a way to help her brother Paul manage his feelings of sadness and grief about his parents that works for him.

“At home I invited Paul to sit with the balloon and tell it all his worries, difficulties, hopes and most importantly how much he loves and misses his parents,” she says. “After some time we take the balloon outside and release it sending all Paul’s words up to heaven. We can easily spot the red balloon against the sky as it floats away. Paul seems to feel a lot of relief and is satisfied his messages are reaching our parents.”

I learned a lot from this exercise, and I hope this is just the beginning of many more conversations about mental health in the disability community.

But, perhaps the most important thing I learned when I put the questions out there was how much people wanted to be part of Bell Let’s Talk and encourage others to talk as well.

As Thomas from Community Living South York and an Adult Ally with the Movement Reaction4inclusion said when he heard about Bell Let’s Talk, “I really want to be part of the conversation as an Adult Ally and have people start that conversation to make a change and be able to make a difference in someone else’s life, giving impact and empowerment.”

Check out more stories, quotes, photos and art submissions for Bell Let’s Talk Day here.

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