Pandemic opened people's eyes to inclusion issues — but will it lead to change for those with disabilities?
Sask. families facing physical, cognitive disabilities share their pandemic experiences
Max Lavallee has always been a bit of a daredevil. His mother remembers the first time he figured out how to balance on the back two wheels of his wheelchair.
They had been living on an acreage at the time and Lavallee catwalked past, his younger sister standing on the back of the wheelchair acting as the perfect counterweight.
It didn't take long for him to find friends who encouraged his risk-taking personality.
In the past year, a friend in his community of Meadow Lake, Sask., in the northwestern part of the province, raised money for a rigged-up chair that allows Lavallee to plough through the snow and go hunting.
What Lavallee can't always navigate is everyday excursions. While he is mostly able to get in and out of buildings, the orientation of a small ramp at one of the salons in town forces him to back up to pull open the door. It leaves little margin for error. In the past, he has needed to eat on a separate floor from everyone else at a curling bonspiel. His mother regularly has to drive him in their accessible van to get him to class field trips.
Lavallee has been facing these types of accessibility issues for much of his life. He was born with spinal muscular atrophy, a condition that continually robs a person's body and organs of muscle strength. If Lavallee wants to cross his legs, he needs help. He also needs assistance with routine tasks like washing his hands, doing his hair and getting dressed. His mother, Andrea Patterson, is his primary caregiver.
Their daily reality seemed to get more attention once the pandemic struck. People in Meadow Lake started reaching out to Patterson asking how her family has dealt with the isolation that comes from having a family member who needs intensive supports.
As the global experience of the pandemic has opened people's eyes to the emotional toll of isolation and issues surrounding accessibility, families with disabilities like Lavallee's are pushing for empathy and inclusion within society. Another family in the community fears that without reassessing our societal values, the treatment of people with disabilities will remain as before.
Tumultuous beginning to 2020
The beginning of 2020 had already been off to a tumultuous start for Lavallee and his family.
Lavallee, now 16, had just had surgery related to his spinal muscular atrophy, then an infection led to traumatizing complications that threatened his life.
Things were about to get worse. As he lay in a bed for three months, the concept of a pandemic sneaked into uneasy conversations in the hospital halls. Then, it brought the Jim Pattison Children's Hospital in Saskatoon to a standstill as it went into a full-force lockdown in mid-March.
When the initial lockdown lifted and Lavallee returned home, his family had to stop inviting friends over out of fear of his immunocompromised condition. His hope for a grand return to the classroom post-surgery was put on hold for one, then two, then seven months.
"After not seeing friends for that long and then not being able to see them after, that was hard," Lavallee said.
He missed the routine of being in a classroom with his friends and even socializing with random people at school.
Like many, he picked up a few extra hobbies during the pandemic — playing piano and learning chess — but spending that much time with his family without reprieve from friends and extended family led to arguments, snippy comments and impatience, Patterson said.
Moving forward, how can we ensure that those marginalized populations of our communities can come out of the pandemic and move out of isolation along with everyone else?- Andrea Patterson
As some of the strains of isolation have eased up, Patterson is still struggling with the demands on her as a primary caregiver. Since Lavallee's surgery, she has to be up about five times a night to adjust the way he's lying, which has left her exhausted.
There are also big picture things, like the hoops her family had to jump through to get funding for Lavallee's current motorized wheelchair and Patterson's years-long position on a waitlist for individualized funding for relief in her round-the-clock caregiving.
Navigating the pandemic with an invisible disability
Andrew Campbell, meanwhile, didn't mind being at home to finish off his high school career.
The 18-year-old also lives in the Meadow Lake area but unlike Lavallee, his disabilities are mostly invisible. He has a condition called DiGeorge Syndrome that makes him immunocompromised. He had open-heart surgery when he was born, and as an adult he struggles with balance, muscle tone and has some developmental delays.
He has autism and communicates differently than his peers. Often, he uses movie quotations to express what he's thinking, and it can get lost in translation or he can be inappropriate at times, said his mother, Bluesette Campbell.
His family has made a conscious effort to ensure people in the 5,300-person city are aware of his needs and treat him with respect.
In looking for others in Meadow Lake who understood the monumental successes of seemingly simple events, Bluesette and Patterson co-founded a not-for-profit organization called People Advocating for Children with Exceptionalities. It connects families in Meadow Lake and bridges them to larger groups called Inclusion Saskatchewan and Inclusion Canada.
Andrew has found being at home quite enjoyable, but the pandemic has created one big hole in his life: hockey.
He has been announcing for his younger brother's minor hockey team for a few years, able to deftly describe the action on the ice, run the clock, read 50/50 announcements and run the scoreboard.
In casual conversation, he often gives one-word answers, but the second he's asked about hockey, his personality comes alive.
What's his favourite hockey team? He has a few, but he'd rather talk about the four he doesn't like: Vancouver, Montreal, Toronto and Philadelphia. Why?
"They tend to whine to the refs a lot," Andrew said, followed by a boisterous laugh.
Andrew has a goal-setting poster in his room. At one point he toyed with becoming an equipment manager for an NHL team. Pre-pandemic, the board reflected an ambition to go to broadcasting school. Right now, it's almost empty.
"Well, I don't even know what's going to happen here because we're in the middle of a global crisis at the moment," Andrew said.
"So I'm just going to set all that stuff aside right now."
Despite his near-empty poster, Andrew has found success outside of school. In September, he got a full-time job doing woodwork. He got a used car, after a major effort to secure his driver's licence when he was 16.
Pandemic as an opportunity to reflect on inclusion
Bluesette and Patterson are proud of their children's accomplishments. When Andrew was born, doctors weren't sure that he would eat or crawl. Doctors told Patterson that Lavallee would be lucky to see his tenth birthday. Now, he's 16 with his sights set on getting his driver's licence and his first vehicle.
The question, though, is whether the world these teens are growing up in are progressing alongside them.
When Andrew returns to the idea of going to broadcasting school in Saskatoon, which is several hours away, Bluesette is armed with an understanding that he will need intensive supports.
"As a parent, I need to be very honest with myself that I have quite a few fears about helping Andrew achieve his goals in living in the city and attending post-secondary school independently," she said.
One area of particular importance to Bluesette is a pilot program in Meadow Lake area schools where a contract worker facilitates communication between the school and a family with children with disabilities. She said it launched because not every family in the schools was experiencing the same success for inclusive education.
"The principle is very simple — that doesn't mean it's easy to do, but everyone needs to project that everyone has value," she said.
"Kids at a very young age are naturally inclusive. So you're not up against a barrier that begins sometime in early middle school and then you're up against the social dynamics of teenagers and things like that, where they already practice exclusion on a societal level. So starting very young, I think is really important."
She sees the pandemic as a chance to reflect on values like that, from the top down, and act accordingly.
"I do have some hesitancy, though, because as soon as things change, I wonder if we won't go back to the same thing because it's what we know and that's kind of human nature," she said.
While Bluesette is banking on building on the positive momentum that started long before the pandemic, Lavallee and his family see potential for the pandemic to cause a groundswell for people with needs like theirs.
"Moving forward, how can we ensure that those marginalized populations of our communities can come out of the pandemic and move out of isolation along with everyone else?" wondered Patterson.
She has long felt detached from other mothers who can't relate to her day-to-day and she often feels unheard and helpless.
Meanwhile, Lavallee's friends give him a lot to be thankful for. Some have built their own ramps to make it possible for him to get into their houses.
Patterson, Lavallee and his sister have been contemplating the idea of doing public speaking at schools to address the best way to treat people with disabilities like his. It all started with pandemic isolation conversations about awkward questions people ask Lavallee.
"I just want people to use their experience to then create empathy and a conviction that I don't want anybody else to experience this in any circumstance," Patterson said.