New Haven Register (New Haven, CT)
‘RECOGNIZE THE INCLUSIVENESS AND DIVERSITY IT BRINGS’
Online conferencing reduces barriers for people with disabilities in a pandemic
Elaine Kolb of West Haven has been an activist for disability rights for decades, practicing civil disobedience with the group Adapt to keep people in their own homes instead of group homes. On Thursday night, with the aid of Zoom and Facebook, her song “We Will Ride,” written in 1987, was featured on a Facebook Live event, “Thrive Aid — The Art of Protest,” organized by Disability Pride Philadelphia, celebrating the 30th anniversary of the Americans with Disabilities Act.
It’s an example of how the COVID-19 pandemic has put the world online, through Zoom, Skype, Teams and other networking platforms, and people with disabilities are able to join the party, or the meeting, or the workshop, much more easily than before.
Watching “Thrive Aid,” Kolb said, “I cried. … [then] my music ended up backing up a project by a disabled artist in London named Ernest Bow. … All of this happened on Zoom.”
The production involved artists with disabilities from Great Britain, Singapore, Brazil, Germany and Japan, she said. “I’m one of the little pieces of this thing that hundreds and hundreds of people in different countries combined to create. We do understand each other even across all of the differences because of the common experience of exclusion.”
With a webcam
While it’s only part of the solution to include people with disabilities in important aspects of society — the digital divide has not gone away, travel has many barriers — online conferencing has helped to put everyone in an equally sized box on the computer screen, say people with disabilities and their advocates.
It was the pandemic that put Kolb there.
“I have a webcam now. That was one of the first things I did when everything shut down,” she said. “I stuck my toe in the 21st century. I didn’t want to go too far.”
She’s gone farther than she may have expected to. Besides collaborating on the “Thrive Aid” video, she’s been able to serve on the state Department of Social Services’ steering committee on Medicaid-supported housing and assistance programs.
But Kolb also misses seeing people in person, even though getting places with her wheelchair is not easy.
“Everything is a mixed bag right now, as far as I’m concerned,” she said. “I despise the isolation. I’m a very sociable person. I miss hugs. I’m a hugger.”
Emily Kalenauskas, who coordinates a statewide program for teens and young adults through the Down Syndrome Association of Connecticut, said, “to be honest, for us the pandemic has actually increased what we are able to provide to our members.”
The Advocacy Avengers — named by its members — used to meet six times a year in Meriden. But, said Kalenauskas, who lives in Windsor Locks, “Since March we’ve provided about two meetings a month virtually. … We’ve tried to find a way for them to still have fun together.”
During the height of the first wave of COVID, meeting were held weekly she said.
The meetings have included cooking, yoga, workouts, art therapy, even dance parties with a DJ.
“We have done so many more things than we would have been able to do had the pandemic not existed,” she said.
And the 15 to 20 members each time come from all over the state, from Mystic to Fairfield County.
“Now everyone is coming. More people are able to participate than ever before,” Kalenauskas said.
Mary-Ann Langton of West Hartford has a speech disability and has a personal care assistant to help interpret for her. Zoom has
enabled her to stay involved in groups, including the advisory group for Camp Harkness, a facility in Waterford run by the state Department of Developmental Services, helping to make it an accessible getaway for people of all abilities.
She also is a member of the Connecticut Cross Disability Lifespan Alliance, an immigrant rights group in Hartford and is involved in St. Patrick-St. Anthony Roman Catholic Church.
“I’m a conservator for someone with a disability in New Haven” whom she has communicated with via FaceTime, Langton said. “I used to go see her once a week. People with disabilities are really isolated even more” because of the pandemic, she said. “What I try to do is reach out to other people.”
Because of her disability, when she’s on Zoom she communicates primarily by typing into the chat box, she said.
More opportunity
While the technology has been available for some time — Skype was released in 2003, Zoom in 2013 — it took the pandemic for the abled world to bring it into the mainstream.
“I think generally my Commission on Disabilities wanted to do this years ago, but the requirements for FOI and public meetings really stymied that,” said Michelle Duprey, New Haven’s director of disability services.
“The state has public meeting requirements. If you had a public meeting that was remote, you still had to have a place where someone could come and participate in person,” she said.
Those rules make it difficult for people with disabilities, “particularly for my commissioners who have health issues themselves, to participate,” Duprey said.
“Travel is particularly difficult for people with disabilities in Connecticut,” she said.
But now that meetings are being held online, Duprey said, “it’s definitely true we are seeing people come to disability meetings that we haven’t seen before, and the reason we haven’t seen them before [was] because the barriers were insurmountable.”
Duprey said more than 25 percent of New Haven residents have disabilities, whether physical, sensory or intellectual, but find many places inaccessible.
“As a society, we have to recognize that we generally make people with disabilities stay home,” she said. “We’ve been forcing people with disabilities into that reality for a long time. Now that everybody else is there, it’s
suddenly become a problem.”
Duprey said online meetings “may be not as palatable for some that are used to in-person meetings, but they also have to recognize the inclusiveness and diversity it brings.”
If Zoom and other platforms become a permanent feature of civic life, it “will ensure people with disabilities will be able to engage,” she said.
Duprey said she hopes, “when our community emerges from the pall of COVID, that those without disabilities recognize and try to break down barriers so that people with disabilities are not segregated in their home.”
One drawback to Zoom is that for those who need sign language interpreters, “the industry hasn’t caught up,” Duprey said. “They still charge you like it’s an inperson meeting,” charging for two hours even if the meeting lasts just half an hour, without travel needed.
Cathy Ludlum of Manchester, a disability rights activist, noted of online conferencing that, “There’s an awful lot of opportunity here.”
“There’s a lot that we can do that maybe we couldn’t do or couldn’t do as easily. I’ve been able to work in Canada and West Virginia and Massachusetts [virtually]. I’ve been able to watch things that I couldn’t get to before, cultural events or meetings that I couldn’t have gotten to before.”
She said she has used Zoom for about three years but that it didn’t become more common before the pandemic because “it’s something that we never thought of. Necessity is the mother of invention, but it’s also the mother of new ways of thinking.”
But Ludlum expressed a “cautionary note” that the ease of using Zoom and Skype not slow efforts to make air travel, hotels and other places more accessible. She worries about an attitude from people without disabilities who may think, “‘OK, they can do Zoom’ and not continue to work on the challenges of transportation.”
“Like everything in life, it requires balance,” she said. “Let’s not restrict people to home more because we don’t feel we need to be keeping our society more accessible.”
While she believes public hearings should be held in person whenever possible, she said, “I think in general more options are always better than less and what this time has forced us to do is think outside the box.”
But Zoom is one silver lining of the pandemic, Ludlum said. “COVID is a horrendous, awful thing. It’s caused so much suffering in so many areas, and yet there are things that will be new and will be better,” she said.
Not a panacea
Melissa Marshall, coordinator of the Connecticut Cross Disability Lifespan Alliance, said while meeting online is “a mixed bag” because she thinks “people absolutely miss seeing each other in person,” Zoom offers more opportunities for people with disabilities to participate.
During the election campaign, Marshall organized a candidates’ forum on Zoom, with “10 congressional candidates and two presidential surrogates. … We’ve been able to do things like that and I didn’t have to worry about transportation and food and the venue.”
Employers who once did not allow their workers to work from home also “have learned that people can work virtually, both with and without disabilities,” Marshall said. “The technology is important. The big important thing is that people with disabilities have access to technology. Not everyone does.”
Ludlum and Kolb also warned about the digital divide. “There will be more disabled people who will be able to take advantage of this opportunity, and there will be others who will not be able to take advantage of it,” Ludlum said.
“Low-income people of all kinds, but especially people with disabilities, are at an extreme disadvantage, because what if you can’t afford the equipment … or if you’re rural, in an area where there’s still not a signal for cellphones?” Kolb said. “Or if you’re homeless. How do you Zoom if you’re homeless?”
Kolb said she also is concerned about children who need accommodations in school or individualized education plans. “Now all of that’s thrown out. For some people they will never recover this lost time,” she said.
Carmen Correa-Rios, executive director of the Center for Disability Rights in West Haven, said webbased software like Zoom has allowed people to stay involved. “For people with disabilities it could be great. It eliminates the necessity of traveling,” since transportation is a major barrier to many people with disabilities, who may have mobility issues or not be able to afford a car.
The center is using CARES Act money to provide tablets and other equipment to its “consumers,” she said. “It’s a great venue to meet with their significant others and family members,” Correa-Rios said. But it doesn’t come without challenges. “They complain Zoom sometimes is behind. Somebody who reads lips, the mouth doesn’t go with words they’re saying at the same time.”
Still, she said, “In the bigger picture I think it’s been a great tool for people with disabilities to have some communication with the outside world during this difficult time.”