As the world enters another year of the pandemic, immunocompromised people and people with disabilities continue to experience systemic and social damage to their health and well-being. While many able-bodied individuals lower their risk potential, people with disabilities often have little choice but to remain vigilant. This is not unknown to Somerville residents, who have expressed frustration over the difficulties that people with disabilities continue to experience as the pandemic subsides.
Beth Marfeo, a streamAssociate Professor of Occupational Therapy and Community Health at Tufts, noted that COVID-19 poses a greater threat to people with disabilities.
“People with different health conditions or situations that may predispose them to have a disability already have a higher risk of adverse health consequences.” Marfeo said. “The pandemic has just increased these risks.”
Immunocompromised people and people with disabilities faces a higher mortality rate of COVID-19 and often encounters malpractice in hospital settings.
Bonnie Denischair from Somerville Council for Persons with Disabilitieshighlighted some of the complex risks and systemic problems faced by people with disabilities during the COVID-19 pandemic.
“I’m amputated and I’m a wheelchair user,” Denis said. “Those things make me more likely to get blood clots. I’m not technically immune compromised, but I’m at greater risk in ways that people do not think. And on top of that, if I were to end up in a hospital, there would be a clear bias towards people with disabilities and our quality of life, so I may not get as good treatment. ”
Holly Simionechairdresser from the Massachusetts Developmental Disabilities Council and a member of the Somerville Council for Persons with Disabilitiesshared his daughter Elizabeths history and expressed his frustrations over the way health facilities treat people with disabilities.
“Elizabeth was really sick, but because she did not cry, because her pain thresholds were different, because her laboratories did not fit the typical [standards]they refused to operate, ” said Simione. “They sent her home, and when she returned months later, she did not just have to have that body removed … for an hour. [emergency] operation became three [hours].”
Elizabeth, who was blind and deaf, died in May 2020 when many health services were suspended due to the pandemic.
“They did not want to do laboratory tests, they did not want to check anything, they just stopped,” Simione said. “And if they did not have them [policies] in place, she would not have been hurt. ”
Simione noted that crisis standards for care – measurements that hospitals use to determine the best outcomes for the majority of patients – rely on rapid judgments that are often to the detriment of people with disabilities.
“Judgments given based on looking at someone … It’s unforgivable,” Simione said.
For many people with disabilities, home care or nursing is crucial, but the risk of COVID-19 infection and understaffing of nurses has made it more difficult for many to receive quality care.
“Many individuals with disabilities are counting on social services or support, … and many of these services were suspended for a period of time to help prevent the spread of COVID.” Marfeo said.
In Somerville, some outdoor eateries have negatively impacted people with reduced mobility by intruding on sidewalks and failing to offer adequate ramps. Denis said that although the Somerville Council for Persons with Disabilities has proposed minor changes to make outdoor dining safer and more accessible, officials have largely focused on the needs of local businesses.
“We want a thriving business community, but there seems to be a fundamental lack of understanding that compliance with [Americans with Disabilities Act] and other disability-related laws are not an option, ”Denis said. “It’s the law, and it’s part of the cost of doing business.”
For some individuals who are immunocompromised, even simple chores are risky. Meg Grady-Troia, -one Somerville resident who is immunocompromised said they can only afford to take a few significant risks.
“I use [my risk budget] on my child having some social time with friends and on going to the doctor, and that’s pretty much it, “ Grady-Troia said. “IIt’s been really hard to do simple things, like picking up prescriptions safely and decorating the restaurants and shops I love around town. “
With Massachusetts’ easing of mask mandates, Marfeo suggested that hybrid options remain available to include people with different needs.
“People need different things at different times, and to be flexible with it [by] having hybrid modalities by default can be really beneficial, “ Marfeo said.
Denis expressed frustration at the removal of hybrid opportunities, although it is clear that many people with disabilities rely on hybrid options to stay safe.
Simiones daughter was unable to go to school in the early days of the pandemic.
“It’s very difficult not to be able to go to school when you have these needs.” Simione said. “Her medical situation made it unsafe for her to go to school. Even on ordinary days when someone may have a cold, it can be very dangerous for her. “
Grady-Troia believes that stronger enforcement of mask rules would be a simple way to protect vulnerable populations.
“I wish there was a way for local businesses to enforce mask mandates that did not burden the lowest paid,” Grady-Troia said.
For now, Simione have plans to keep telling Elizabeths history.
“I want to stand in front of someone,” Simione said. “I will do whatever it takes to make people understand that it did not have to happen, but we can make it not happen in the future.”