‘The pandemic has not been very good to me’: People with disabilities feel forgotten – The Columbus Dispatch

Cara Pritchettlights up when she talks about family memberswho have helped hernavigatelife withcerebral palsy during the COVID-19 pandemic.

The oldest of four siblings, Pritchett, 25, of Upper Arlington, said she was diagnosed with a mild form of cerebral palsy shortly after she beingborn. The congenital disordercausedherto losefunction ofthe right side of her body and ledto other developmental and medical issues later in life.

Despite beingmore likely to be infected by COVID-19 andcontract severe illnesses from the virus, many people with disabilities and their advocates say they feel likethe community has been overlooked and pushed aside during the pandemic.

"The pandemic has not been very good to me," she said.

Without family, Pritchett said she doesn't know how she would have made it through the past two year being in and out of the hospital withulcerative colitis, having difficulties finding a job willing toaccommodateher conditions, and losingher best friend in a hit-and-run crash.

"They've been through it all with me," Pritchettsaid of her family.

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There are about 2.6 millionadults like Pritchett in Ohiowho have a disabilityand are more likely to develop other chronic conditions and lack access to health care, according to the Centers for Disease Control and Prevention.

Last month, some 150 disability advocacy groups spoke out after CDC director Rochelle Walensky sharedin an interview with ABC's "Good Morning America" what she called the "encouraging news"thatmost COVID-19 deaths among vaccinated individuals in a small studyhadother health problemsand were "unwell to begin with."

Afterward, disability rights activistImani Barbarin started the viral "#MyDisabledLifeIsWorthy" to call out Walensky's remarks,and she's been joined bypeople fromacross the world.

The CDC director apologized andmet with a group of disability activists after what she acknowledged was ahurtful, yet unintentional, statement, according to a CDC press release.Walenskyalsocommitted the CDC to regular engagements with the disability community.

The disability community is often overlooked ormade to feel devalued and dehumanized, saidSue Hetrick, executive director of theCenter for Disability Empowerment, aColumbus nonprofit that helps connect people with disabilities to housing, jobs, transportation and other service in Franklin, Licking, Delaware and Union counties.

"A lot of time policies or decisions are made without the input of people with disabilities," Hetrick said. "There isn't the awareness of the non-disabled community about who they are as people, not just what their needs are."

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People like Hetrick andKerstinSjoberg, executive director of the nonprofit advocacy organizationDisability Rights Ohio,have fought discrimination and a lack of awareness throughout the pandemic.

As hospitals decide how to ration ventilators, medication and beds during a crisis, people with disabilitiescould be given lower priority based on stereotypes about their quality of life and how effective treatment might be,Sjoberg said.

Disability Rights Ohio worked with the Ohio Department of Health to create crisis standards of care for hospitals and doctors that are inclusive of the disabled community, but they're only recommendations, shesaid.

Sjobergadded thatthe new state budget gives the health department more influence in hospital policy, and she hopesdisability-inclusiverecommendations will be incorporated into hospital care guidelines.

The discrimination already exists in our system, and its not just doctors. Its part of our society, Sjoberg said.

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Some people with disabilities require aides and other workers who help them at home or in facilities to navigate daily life. This presented a problem during the pandemic, Hetrick said, becausesocial distancing and slowing the spread of the virus became next to impossible, making it harder to protect vulnerable populations.

The pandemic also mayhave isolated people with disabilities or prevented loved ones from visiting or keeping in touch, Sjoberg said. Without these natural support systems, it also became harder for people in institutionsor congregate settings to report neglect and abuse.

So Disability Rights Ohiocreated a virtual abuse and neglect reporting system and Q &A section where people canget information on personal protective equipment, safe housing, accurate information about COVID-19 vaccinations and more.

It's, of course, better to have it face-to-face, Sjoberg said. "We've been able to keep that core function operating very effectively during this process."

People with disabilities also often face the most barriers trying to getvaccinations, Hetrick said.Accessibility issues, concerns about reactions with existingmedications or conditions or fear about poor treatment can get in the way, she said.

"Information is not always accessible to people with disabilities, whether that's written information that's given to them, the kind of language that's used to inform them," Hetrick said. "Transportation is a huge barrier."

To help with these issues, theCenter for Disability Empowerment (CDE) and the Ohio Department of Health willhost pop-up vaccinationclinicsin late-February or March and provide scheduling assistance and transportation for those who need it, she said.

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Pritchett struggled to find a job in child careas the pandemic shrank opportunities and shut down schools and day cares.

She turned to the CDE for help last year, and even though she found a job she loves at Riverside Methodist Childcare Center in Upper Arlington,the group still checks in with her today.

"I've always said that people with disabilities are some of the strongest people I've ever met, because of the barriers that we're always facing," said Shari Veleba, a CDEinformation and referral coordinator.

Pritchett's parents and younger siblings also helped her deal with the boredom of having to isolate at home andthe challenges of having to deal with new health issues.

Even now, her parents continue to support herby doing such things as sending her TikToks showingdisability activists, she said.

And Pritchett said heryounger siblings Jake, John, Madison and Taylorare some of her biggest supporters in life, with Jake being especially encouraging as Pritchett dealt with the grief over the death of her friend.

She said he took her to the cemetery and wrote anessay about how strong she's been this past yearas his college applicationessay.

"He wrote the paper without me or anyone knowing what it was about, so when I read it, I was shocked and emotional,"Pritchett said. "Knowing that those were his words makes it really special."

AWright1@gannett.com

@aubreymwright

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'The pandemic has not been very good to me': People with disabilities feel forgotten - The Columbus Dispatch