Of the many Maplewood residents that Nikki has had the pleasure to have met, Young parents and low income people know Nikki to help them have a voice that is being heard.
n the early weeks of 2020, when a mysterious new virus began making headlines, South St. Paul resident Steve Romenesko watched the news closely.
By early March, with many things still unknown about the rapidly spreading coronavirus, it became apparent the infectious disease would prove more deadly for organ transplant recipients like Romenesko.
“Whatever happens in the next couple of weeks, we’re going to have to work from home just for my own safety,” Romenesko recalled explaining to his colleagues at St. Olaf College in Northfield.
Today, Romenesko, 32, is continuing his work with students at the college through remote work accommodations.
He’s also among a diverse group of Minnesotans with disabilities or chronic illnesses fighting for remote work and other virtual access accommodations to continue during — and eventually, after — the COVID-19 pandemic.
“When set up the right way, I think we’re at a crossroads of a wonderful opportunity to allow the disabled community to be involved,” Romenesko said.
HESITANCY BEFORE COVID
David Dively, the executive director of the Minnesota Council on Disability, said people with disabilities have sought teleworking capabilities for many years.
The Americans with Disabilities Act and the Minnesota Human Rights Act both broadly address issues of discrimination and workplace accommodations.
However, Dively said it’s been difficult over the years for people with disabilities to be granted teleworking capabilities out of necessity for their health.
“There was extreme hesitancy by supervisors and human resources managers,” he said, adding employers often raised concerns about whether or not they had the capacity to accommodate telework for a disabled employee.
Dively said the community of those with disabilities hasn’t missed the irony of often being denied individual accommodations in the past, and now, during the pandemic, watching entire corporations switch to remote work.
Yet, he said, that’s how many issues have played out for decades.
“For some reason, the framing of it as a disability rights issue automatically makes it a harder thing to achieve, and that shouldn’t be the case,” he said.
POLICY CHANGES BENEFIT
Nikki Villavicencio, a rights activist for those with disabilities and Maplewood City Council member, said policies that better serve people with disabilities also stand to benefit those without disabilities.
Villavicencio, 37, uses a powerchair and has limited movement in her hands and arms due to a rare congenital joint condition called arthrogryposis.
“Technology, specifically, has been really vital to my independence as a person with a disability,” she said.
She’s spent years advocating for Minnesotans with disabilities in front of state lawmakers and said the pandemic helped move some issues forward.
“We, in the general disability community, got a lot of wins this year,” she said.
One example is a federal law enacted last year that allows Minnesotans who receive SNAP benefits to use EBT cards to purchase groceries online.
“We live in Minnesota where most of the year it’s difficult for somebody like myself to go to the grocery store, and it’s impossible when it’s 30 below zero,” Villavicencio said.
And, while she’d been working on the issue before the pandemic, the pandemic made it easier to catch the attention of lawmakers, she explained.
Villavicencio, who also chairs the Minnesota Council on Disability, said remote work and virtual accommodations helped level the playing field for people with disabilities involved with state and local government.
“We all had access to state government in the same way,” she said.
‘A PIVOTAL MOMENT’
A wide range of disabilities carry protections under the ADA, including some individuals experiencing long-term effects from COVID-19.
Dively, an Eagan resident who himself is hard-of-hearing and grew up with deaf parents, said the pandemic creates an opportunity to reshape public policy in a way that better serves people with disabilities.
“It is a pivotal moment for us and the work that we do,” Dively said.
Maintaining and expanding remote work opportunities and virtual accommodations is vital, said Romenesko, a two-time liver transplant recipient.
Romenesko, who has a progressive liver disease, underwent another life-changing procedure shortly before the onset of the pandemic: a colon removal surgery due to ulcerative colitis.
He said remote work has offered him additional time and space to adjust to life with an ostomy bag, and it also helps him balance the ups and downs of chronic illness.
“It’s been really nice just to have the comfort of my own home,” he said.
For people living with chronic illness, it’s not realistic to miss work every time you’re feeling unwell, Romenesko explained. That’s where remote work offers some individuals a path for better managing their health and careers.
Romenesko said there’s a lot of days he doesn’t feel well due to his chronic health conditions, but there’s less pressure to choose between going to work or tending to his health.
“It’s not a binary option anymore — and I think that’s really great,” he said.
Additionally, he’s been able to avoid other seasonal viruses that typically cause longer and more severe illnesses in immunosuppressed people like himself.
A FIGHT FOR WHAT’S AHEAD
In the community, Romenesko serves on the South St. Paul Library Board. The group resumed in-person meetings, but he continues to join virtually and advocate for better accommodations.
Villavicencio, who is back to attending City Council meetings in person, said she hopes lawmakers will look for new ways to allow officials the flexibility to join meetings virtually.
Under today’s laws, the ability to conduct virtual meetings is tied to local state of emergency declarations. In Maplewood, and across Minnesota, there’s no longer a local state of emergency.
Yet, a future with better access for Minnesotans with disabilities depends on policy-making with them in mind, Villavicencio said.
“If we make our communities work for the most marginalized, it’s going to work for the majority as well,” she said.
Very few Minnesotans Living with disabilities run for office. That may be changing!
Contact Nikki by email: Maplewood@neighborsfornikki.org
The number of candidates with disabilities increasing, slowly…