'We are usually the forgotten ones’: People with disabilities explain how the pandemic affects them differently

BOSTON — Kamisha Heriveaux is a self-advocate liaison and editor of The Mass Flash. She is also a wheelchair-bound 26-year-old and was born with Cerebral Palsy.

“I do feel like there are moments I do feel alone, I have my moments” said Heriveaux. “I do everything you can do, I just do it differently and with a wheelchair."

During this pandemic, social distancing has been especially difficult. She was accustomed to her routine.

Heriveaux is earning her GED and wants to go to school for photography.

“We don’t know what to expect at this point, it’s very unpredictable” said Heriveaux.

Heriveaux is turning to the virtual world, like so many other people with disabilities.

“I’ve gotten an appreciation for technology,” said Heriveaux.

Brian Kremer, the statewide director for Mass Advocates Standing Strong, spoke to Boston 25 News in a video interview.

“Sometimes, people with disabilities can be forgotten. I hope everyone understands you need to call, you need to check in,” said Kremer.

Kremer is worried about hospital visits during this pandemic. He says the care for people with disabilities isn’t the same across the board.

“Their supporter isn’t being allowed in some settings," said Kremer. "That’s scary for anyone in this setting to be alone. You need support for communication purposes.”

“You’re not alone. You have people around you when you fall,” said Heriveaux.

Kremer says “The Arc of Massachusetts,” which is an advocacy group for people with disabilities, has reached out to the governor’s office to help care for people with intellectual and developmental issues during this time.

Boston 25 News has also reached out to the Governor’s office.

Here is what The Arc is asking the Governor’s office:

Dear families,

During this time of crisis, we are asking you to reach out to Governor Baker. The Arc has joined with others on the critical issue of health care triage and hospital care for people with intellectual and developmental disabilities. We are responding to the “Crisis Standards of Care” Advisory statement released on 4/7/2020 and we need your help.

We appreciate the efforts of our health care providers and medical settings for the yeoman work they are doing in protecting all our citizens. "All" our citizens.

As the crisis continues and possibly worsens, tools like the recently published “Crisis Standards of Care” are vital to guide them in life and death decisions. The "Crisis Standards of Care" Advisory includes a nondiscrimination statement, but it needs to be more than a statement of principle in terms of healthcare equity for people at risk for discrimination based on their gender, race, disability, or other protected status.

For health care staff making split second decisions under crisis conditions, principles must be operationalized. The reality is that bias, often unconscious, remains deeply embedded within our societal DNA. Medical professionals are not immune to this bias. Standards should include training and directions on access and treatment that give triage team members tools which they will appreciate one day when they look back at these challenging times.

You can learn more about the initiative here. More resources for those with disabilities can be found on the state’s website here.

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