A trip to the bookstore meant to celebrate a deaf girl's perseverance turned into a reminder of the barriers her family has fought to overcome.
On Monday, Louise Berezowsky and her daughter Clara were refused entry into the St. Albert Chapters for wearing clear face coverings instead of masks. Due to her condition, Clara's ability to read lips and facial expressions is essential for her to communicate with others and understand the world around her.
The trip was meant to celebrate Clara's hard work in therapy recently, Louise said. After explaining that her five-year-old was profoundly deaf and needed the clear face mask, Louise said the store manager told them to buy a children's book online.
"I said, 'I just want to clarify that you're refusing service to me, because I will not cover my face to come into your store because of my daughter's deafness.' And she said, 'Yes,'" Louise said.
Clara gripped her mother's hand as they left. This wasn't the first time the two have been turned away by businesses, Louise said.
"I am so enraged, I feel helpless," she said. "As a mother of somebody who is profoundly deaf, or has special needs, it's my job to protect her. And it's really hard when you're up against an entire city, province or government."
Clara lives with CHARGE syndrome, a rare genetic pattern of birth defects including hearing loss, vision loss and balance problems. It occurs in about one in 10,000 births worldwide. Clara was born with closed breathing passages, small holes in her heart and eyes, and deafness. Louise has a thick binder full of documents kept from Clara's therapies, hospital admissions and memories spanning the first two years of her daughter's life.
Clara is also one of only two babies known in the world to have both CHARGE and infant glaucoma.
"Telling me to cover my face with a mask that cuts my daughter off from all communication is not a proper accommodation. Telling me that I can't shop in the store and that I'm excluded from coming in is not an accommodation to my medically-exempt deaf daughter, period," she said.
Indigo, parent company of Chapters, has a policy in place requiring all employees and customers to "wear a mask while in-store without exception, aside from guests under two years old," according to a statement posted to the company's website. Customers who can't wear masks are told to either shop online or do curbside pickup.
"We understand this is a difficult time for everyone, and while our solution isn’t perfect, we believe it is required to keep employees and customers as safe as possible," wrote Madeleine Löwenborg-Frick, Indigo director of corporate communications, in an email to the Gazette.
Under the provincial mandate, masks are mandatory in all indoor public places unless the person qualifies for an exception. This includes children who are under two years of age or individuals who are unable to wear a mask due to a mental or physical limitation.
"Based on your description, the individual was complying with the provincial order," wrote Tom McMillan, Alberta Health spokeperson, in an email to the Gazette. "However, private businesses may set their own policies as long as they also meet the minimum provincial requirements. This can include requiring individuals to wear masks while attending their business."
Last October, St. Albert city council amended its face covering bylaw to allow people to wear clear face shields after hearing Clara's story. However, the province then brought in its own mask mandate, which did not accept clear face shields as adequate face coverings. As the province's mandate trumps the city's, city council voted to suspend its own bylaw while the province's was in place last December.
"Currently it is the province who sets the rules and individual businesses have the right to set their own rules as long as they meet the minimum set out by the province," wrote Mayor Cathy Heron to Louise in an email obtained by the Gazette. "During the face-shield debate you had a lot of support from your council and I am sure none of us have changed our minds, sadly we have been overruled."
Louise said Heron's response indicated the problem is out of the city's hands and it's up to the province to find a solution.
"We thought we would get a lot more support from our city than that."
Louise said she has reached out to Inclusion Alberta and plans to file a human rights complaint.
Not being able to wear face shields to communicate with Clara is the least of the family's worries, said Paul Berezowsky, Clara's father. In the last year, the family has witnessed Clara's team of supports disappear because of provincial budget cuts. It's been a fight to keep the supports she has left, he said.
"The amount of fighting and pushing uphill to get the services back that were shut off is extremely defeating," Paul said. "You have to fight for every little piece of it, especially during times like this."
Clara has received support from the Family Support for Children with Disabilities (FSCD) program her whole life, which allows her to access specialized services like speech pathologists and respite care.
Last fall, FSCD told the family that their respite hours would be cut by more than half. The family was able to extend their contract for three months, but now Clara's hours will be gradually reduced from 124 hours a month to 40 hours a month in September.
Clara also used to go to the Glenrose Rehabilitation Hospital for three hours a week for speech therapy. Due to her condition, Clara needs these treatments to learn how to speak. However, her therapist was redeployed during the pandemic and can only see Clara once a month, Louise said. Clara will age out of the Language Speech and Hearing Intervention (LSHI) program this September.
The family applied for specialized services funded through FSCD to have a speech and language therapist come to their house, but they have yet to secure a contract.
"If you talk to any special needs family, they are really the victims right now during COVID. They're not getting the medical intervention they need, they're not getting the supports they need, and on top of that, they are being discriminated in public spaces," Louise said. "The masks are the least of our worries."