Staci Nichols tried living in a big city.
“I moved to Denver and, sorry to say, I just hated Denver,” she said. “It was way too much for me.”
Nichols is deaf and has an interpreter to translate from a form of sign language called Manually Coded English. Nichols lived in Denver for about 18 months after moving from Western Colorado, where she grew up. But she says her heart was always in rural Colorado, so in 2007 she moved to a small city in the northwest.
“I moved to Craig and oh my gosh it was a perfect fit,” she said. “Just a few stores, gas station, I’m good.”
Nichols is just a few years older than the Americans with Disabilities Act, which turned 30 last month. It means “everything” to her.
“It gives us more legal support for our rights,” Nichols said. “But it's not reality. It's not always realistic in rural areas. It is improving in rural areas, but it's a slow process.”
Independent living is a core part of the Americans with Disabilities Act. The ADA defines it as “a philosophy of consumer control, peer support, self-help, self-determination, equal access, and individual and system advocacy” to ensure the “full inclusion” and “empowerment” of people with disabilities.
Nichols works to make it a reality on a more individual level as the independent living coordinator for the Northwest Colorado Center for Independence, a disability support organization that serves six counties.
“They call the shots, I walk along with them,” she said, describing her philosophy when connecting people to resources. “I don’t do it for them but I do it with them. That way they can gain their independence.”
The independent living philosophy, like the ADA itself, is very wide-ranging. The Act aims to prevent employment discrimination, improve physical accessibility through building requirements, provide support services like interpreters and keep people with disabilities from being warehoused in nursing homes and the like.
The city of Craig is the seat of Moffat County. Nichols says it’s only now getting curb cuts on sidewalks for wheelchair access. And like other rural Colorado counties, it also has one of the highest rates of people with a disability who are in poverty.
According to Census data, many of those counties also have higher rates of people with a disability who are unemployed or “out of the labor force” compared to many of their urban counterparts. And a pilot program just started two years ago to ensure more rural Coloradans can get access to sign language interpreters.
“It’s kind of been a ripple effect,” Nichols said. “And we’re getting the small waves. But it's still progress.”
Ian Engle is the Northwest Colorado Center for Independence’s executive director. After becoming a wheelchair user due to an accident that paralyzed him, he was told he’d spend the rest of his life in a nursing home. He remembers seeing activists with disabilities protest for their rights while at an inpatient facility in Lansing, Michigan. Since then, Engle’s spent much of his adult life as an independent living activist.
“I think this is particularly poignant for those of us with disabilities who choose to live in rural communities, in the mountains,” he said. “Because this is our lifestyle. We want to be able to set up and be healthy and safe in our own homes.”
But achieving that is going to take some work, he said. The center often receives complaints about places or programs that still aren’t accessible.
“Where we run into trouble is, you know, there's no ADA police and I don't think there should be,” Engle said. “It's up to us as citizens to enforce it.”
But there’s the matter of how enforcing those rights should look. People can file civil rights complaints and lawsuits. Over the past 20 years, Vail, Fort Morgan and Hayden have all entered into settlement agreementswith the Department of Justice ensuring they’ll develop programs like independent voting access for people who are blind and making sure emergency shelters are physically accessible.
“Now what we have is I don't even want to say the words ‘ADA’ to somebody in the business community, or even local government, because the conversation immediately switches to what's the least I have to do to be in compliance,” Engle said.
Instead, Engle wants to take what he sees as a more collaborative approach, sometimes using the specter of someone else filing a lawsuit in the future as an incentive.
“Avoid the lawsuit, work with us,” he said he tells businesses. “There's tax incentives. There's this plan. We can do a check assessment.”
But he also works to appeal to these communities' close-knit identities, particularly when speaking to local officials.
“Do we want to be a model of an inclusive community here? And what does that look like? What are our values? What are our community values up here in the mountains as residents of rural Colorado?” he said, explaining his process for getting commissioners on board with accessibility. “Are we an exclusive community? If you can't afford to live here, you need to go live down the road?”
And there are appeals to businesses’ bottom line.
“I want to have a conversation about what's the most you can do to be accessible, to increase your profit margin over your competitors and capture the disability market,” Engle tells business owners. “And run a good business because good access is good business. And an inclusive workforce is a healthy workforce.”
“Implementing the intent of the Americans with Disabilities Act in a rural area is going to be different than implementing that in an urban area."Ian Engle
This isn't just a rural problem, Engle said, but rural communities often have fewer resources and struggle with laws that aren’t specifically tailored to them.
“Implementing the intent of the Americans with Disabilities Act in a rural area is going to be different than implementing that in an urban area,” he said. “And we need to get together and be strategic about that.”
Despite the struggles, Engle believes rural communities are uniquely capable of rallying together to become more inclusive. And he’s happy to work with them to build an understanding of what their community needs and get the funding to make it happen.
Making things more complex, the rate of people with disabilities is higher in rural America — and that’s true in large swaths of rural Colorado, too.
“So you have people who live with disabilities who have less access to businesses, less access to transportation, poor access to healthcare,” said Meg Traci, an associate research professor at the University of Montana who works with the Research and Training Center on Disability in Rural Communities. “So, overall you have more people in areas where potentially we need more accessibility and without it, they have fewer opportunities to fully participate.”
As with many aspects of life these days, she says COVID-19 is a compounding factor.
“We do have fewer community living options in rural areas,” she said referring to the government mandate for states to provide resources for people with disabilities to live in their communities, not institutions. “And we have more institutional settings. So we have more of the nursing homes, assisted living, prisons.”
More than 35% of Colorado’s coronavirus outbreaks have happened at residential healthcare facilities like nursing homes and assisted living centers, a higher rate than any other kind of facility. According to the New York Times, more than 40% of COVID-19 deaths nationally come from long-term care facilities.
“Nobody ever was jumping that they wanted to go to a nursing home in the first place,” Engle said. “But now it's really become an issue that I feel like as a society we need to start looking at and addressing.”
Engle emphasizes that it’s actually more expensive to institutionalize people. And the U.S. Department of Health and Human Services’ Administration for Community Living agrees: “Not only is community living rewarding for individuals and communities, but also happens to be less expensive than other options for most people. Skilled nursing facilities can cost an average of $75,000 a year and public residential facilities for people with disabilities average $225,000 a year.”
Yet many rural counties, including much of Eastern Colorado, still have higher rates of institutionalized living. But, Engle believes a lot of progress has been made.
“And now we're trying to access education. We're trying to access transportation. We made some progress,” he said. “We're trying to access housing and community-based services and supports. And for god's sake maybe even employment where we don't have to be forced into poverty in order to get our basic needs met.”
Staci Nichols says she’s been seeing more and more people who are deaf moving to Northwest Colorado. She recently worked with one family in Rio Blanco County. They struggled with a community that didn’t know how to provide support for them.
“But RISP made it possible for them to stay in Rangely,” she said, referring to the Rural Interpreting Services Project, the new pilot program that works to bring more sign language interpreters to rural Colorado. “That’s where they want to be, they want to live there.”
Nichols and several other people with disabilities interviewed for this story emphasized that disabilities can’t all be lumped into one category.
“They would clump the deaf with other disabilities, and that never worked out,” she said. “Because communication disabilities are different than physical disabilities. They really are separate from those.”
Several people with disabilities also pushed back on others' tendency to pity them. Shannon Cameron of Greeley says people often doubt her ability to work and do other tasks.
“But the people I'm with now, they say, ‘Shannon, I can't even tell you have a disability.’ And I tell them, I (do). I have a learning disability. I had a speech problem, but it got corrected with therapy,” she said.
“I mean, you're taking such good care of me that I'm relegated to a passive observer of my own life. While people look at me like I'm pitiful. Next person who says they want to help me is going to break me,” Engle said. “Because that's starting to get oppressive. Because if everybody keeps saying they want to help me, I'm starting to believe it.”
Engle believes the fight for disability rights has pushed past just dealing with basic accessibility concerns.
“This new generation is more about ‘We want to be participants in our local economies. We want to be actively engaged in the community,'” he said. “We want opportunities to be civically engaged because we have a story to share with the powers that be from our lived experience.”
