It can be hard for Cara Sachs to see other people without masks.
That’s her immediate reaction before she reminds herself of those with physical or mental health disabilities that make wearing a mask more difficult, or even impossible.
Sachs, a Burlington resident and business owner, has several chronic illnesses that place her at an elevated risk for Covid-19. Since the start of the pandemic, she has been diagnosed with three lung diseases, making mask-wearing more difficult.
“When you have an already weak respiratory system that’s struggling to just get air in without collapsing, you’re having to pull twice as hard to get that air in, and your airway collapses even more,” Sachs said.
Like everyone else, Sachs has had to adapt to a new reality presented by the pandemic. When she has to leave her apartment, she now wears plastic brackets underneath her mask so that the edges stay tightly sealed while ensuring her airways are unimpeded.
Though the pandemic has affected everyone, it has exacerbated certain pre-existing challenges for people with disabilities.
In Vermont, the system of care for people with disabilities is built on a community-based model rather than institutional settings. Social-distancing measures and an ongoing ban on multi-household gatherings have limited the in-home, in-person care usually provided by a caseworker or family member.
Services have shifted online with mixed success. For example, less than half of the group at the Brattleboro-based Inclusion Center can fully participate in the meetings now conducted over Zoom.
To address that problem, the Vermont Center for Independent Living has established the RISE Fund using some of the state’s CARES Act money to help people with disabilities mitigate the cost of pandemic-related expenses, including upgraded technology for reliable access to telehealth options.
Sachs had been waiting for her application to be approved so she can purchase an oxygen concentrator to improve the air quality of her home during the pandemic. Despite living in a designated tobacco-free apartment, Sachs says that the smoke levels in the building can get so bad that she frequently suffers from migraines, earaches and reduced oxygen levels.
“Even if it’s just baked-in smoke and not fresh, it’s everywhere, and my hallway especially,” Sachs said. “It’s like, the elevator doors open, and you’re walking into a wall of smoke.”
And because of a quirk in the way insurance companies and Medicare conduct oxygen tests — at a health care facility under sterile conditions, not in her home where she experiences the most trouble — Sachs says that an oxygen concentrator is an expense that hasn’t been covered. (The RISE Fund approved her application for the device this week.)
In the meantime, Sachs stays busy running the business she founded in 2018, Cara Sachs Coaching, where she serves as a professional life coach for people with chronic illnesses.
“Disability is something people think of as tragic and sad and everything, but to me, there’s a lot of pride in it,” Sachs said. “There’s no bigger badass than somebody who doesn’t fit into the norm, who continues to live their life and not get shut down by systems that are kind of intended to lower our quality of life.”
The pandemic has put a hold on the in-person presentations and workshops that Sachs used to run, but she was already consulting with most of her clients over the phone, making for a relatively seamless transition.
Although the shift to online communication does not suit the needs of every person with disabilities, Sachs says that there is value in being able to work from home without having to worry about the usual stresses of travel.
She pointed to campaigns on social media where people have rallied to help one another in a space without judgment. Better virtual infrastructure has also made civic participation more accessible for some people with disabilities.
The pandemic has led to new opportunities for her personally. She started as a disability justice advocate at the Vermont Center for Inclusive Living last fall, and was recently appointed to the Vermont State Rehabilitation Council.
With so many people living in unprecedented isolation, she says the pandemic has given her clients some semblance of validation.
“I’ve had multiple clients say to me, ‘Wow, suddenly the whole world is living like a chronically ill person … everybody is now learning what it’s like to be very isolated, and to have to be careful about contact with other people,’” Sachs said. “I’m working on doing everything I can to keep that perspective heard.”
