Isolation: Another barrier to equality

“It's my birthday!” are the first words out of Vicky Levack, as she answers the phone from her Halifax nursing home on a grey December morning. “I'm 30 years old!”

But Vicky's exuberance, describing the pizza party she has planned for her fellow residents and the fresh flowers that just arrived at her door, is short-lived. Birthday or not, she still won't be able to leave her home, or to see friends. Turning thirty does nothing to change the reality of her life. “I am stuck in a nursing home,” she says.

As COVID-19 ravaged through long-term care homes in Canada, it shone a spotlight on our woeful neglect of seniors. But that neglect extends to another population: people with disabilities who — for a lack of alternatives — are forced to live in large institutional settings like nursing homes.

Vicky has spastic quadriplegia, a severe form of cerebral palsy that robs her of control of her body. She gets around in a wheelchair, uses speech-to-text technology to write and has no trouble expressing herself verbally.

Having grown up in Berwick, a village in the Annapolis Valley, Nova Scotia, which Vicky describes as “really cute but boring as hell” for a disabled adult like herself, she moved to Halifax to go to university. She tried twice — two universities, two programs, two living arrangements — but it didn't work out. Vicky got sick and couldn't keep up with the work. “I needed more care than we realized,” she says.

The only institution in Halifax that could accommodate Vicky was Arborstone Enhanced Care, a nursing home that also offers long-term care to young adults with special needs. She expected to find people like herself there. “As it turns out,” she says wryly, ‘young adult’ means aged 18 to 64.”

All that changed last March when her home went into lockdown. Outings and visitors were prohibited.

Most residents at Arborstone are seniors, many with cognitive impairments. Vicky tried to make friends, but had trouble forging meaningful relationships. And when she did, they didn't last.

“Older people get sick and die,” she says. “I got tired of losing people I loved.”

Until COVID-19 struck, Vicky was able to lift her spirits with outings. She loved going to the mall, to movies or browsing in bookstores. She enjoyed getting together with her three-year-old niece, going out for dinner with her parents, meeting up with friends for coffee. Her calendar was full of meetings of the various disability rights groups she belongs to. She kept busy.

All that changed in March 2020 when her home went into lockdown. Outings and visitors were prohibited. The living room on her floor — where residents could meet to chat or do puzzles — was converted into a COVID-19 isolation room. Units within the home were prohibited from intermingling, meaning that Vicky could no longer visit her one resident friend, who lives on another floor.

Vicky understands the pandemic and the danger it represents. She says that, unlike many of her fellow residents, she knows to wear a mask, to physically distance, and ensure that her hands are clean. She would do those things, if she were allowed to go out. But she's not.

Vicky thinks about how she would rather be living. She doesn't want these things to just be dreams.

Instead, she stays in her room. She has plastered the walls with posters to cover their oatmeal colour, which she hates, and hung up the Ruth Bader Ginsberg tea towel her mother gave her with the quote about fighting for the things you believe in. She arranges and rearranges the plastic doll collection on her shelf. She watches out her window, hoping someone will walk down the little trail that disappears into the woods. She enjoys her little Christmas tree, even though she wishes it didn't have to be fake — or little.

And she thinks about how she would rather be living: in a loft shared with a few roommates and a caregiver, with a kitchen — where she could prepare her own meals — and a job out in the real world.

Vicky doesn't want these things to just be dreams. Nor should they be. There are community care options in Nova Scotia, administered by the Department of Community Services, which would answer Vicky's wishes. But the waitlist for those spots is over 1,600 people long, and Vicky has been told that given her medical needs, she wouldn't qualify anyway.

One day the pandemic will pass, and Vicky's limited freedoms will be restored. But she needs something beyond that to look forward to. She worries about her mental health. “I'm really lonely,” she says. “I don't want to spend my 40th birthday here.”