If we adopt the policy of building insurmountable walls to keep certain people out of certain places, things can get out of hand mighty fast. We might even have to build walls to keep out a less-discussed kind of refugee: disabled people and their families who reluctantly uproot from their homes in red states and move to blue ones in search of better public support programs. It’s been going on for decades and still occurs today.
The first states we would consider building walls around are Colorado and New York, which are magnets for people like Latonya Reeves.
Latonya was born and raised in Memphis, Tennessee. She has cerebral palsy, so she uses a motorized wheelchair. In 1985, after graduating from the University of Memphis, she found herself at a dismal dead end. She was twenty-one and faced with the prospect of spending the rest of her life in a nursing home, just to receive simple assistance with daily tasks like getting out of bed and getting dressed.
“My family couldn’t take care of me,” she says. “They were working. They had other things going on. They didn’t know what to do. If I stayed in Tennessee, I would have wound up in a nursing home.”
At the Memphis Center for Independent Living, a service and advocacy organization run by disabled people, Latonya learned of a far-away, exotic city known as Denver, Colorado. There, disabled people like her lived in their own homes with the support of assistants whose wages were paid by state Medicaid funds.
The first states we would consider building walls around are Colorado and New York, which are magnets for people like Latonya Reeves.
There was no program remotely resembling that in Tennessee. “I had to do something,” Latonya says. So she moved to Denver. There she found the Atlantis Community, an organization that specializes in getting or keeping disabled people out of nursing homes by helping set them up with essentials like affordable, accessible housing and in-home assistance.
When Latonya arrived in Denver, she lived in the home of a man Atlantis helped liberate from a nursing home until she could get a place of her own. “It was scary but I got used to it quickly,” she recalls. “I was upset about leaving my family, but I knew it was best for me.”
Thirty-three years later, she’s settled comfortably in an apartment with a crew of people who help her out four times a day. She says it all works out just fine. And she’s stayed out of a nursing home.
In 2001, when Nick Dupree was nineteen years old and living in Mobile, Alabama, he received Medicaid-funded assistance that helped him live in his family home and even attend college. Nick used a motorized wheelchair, received daily nutrition through a feeding tube, and depended on a tracheotomy and ventilator to breathe.
But Nick knew that in two years all that life-sustaining support would be cut off. That’s because, in Alabama, eligibility for assistance ended at age twenty-one. So Nick started an online campaign called Nick’s Crusade to draw attention to this ridiculous policy and get it changed.
The system as it existed, he wrote in the Nick’s Crusade blog, “points to a broken government, broken health care models, broken state-to-state Medicaid systems, broken nonprofit sector, broken ideologies that do not account for the realities of human frailty, disability, chronic illness and what these really mean day-to-day.”
Nick’s eloquence and perseverance drew a lot of media attention and pressured the Alabama state government to change course. Just a few days before Nick turned twenty-one, the age restriction was lifted and Nick and twenty-nine others were allowed to continue receiving assistance.
But Nick’s fight was not over. In 2008, he wrote an open letter asking for help relocating to another state. “Unfortunately, though my campaign was officially successful, services and support in Alabama remain abysmal,” he asserted. “The assistance I received was so unreliable that beginning in 2005 I was unable to continue attending college classes. There is no way for me to reach my goals of independent living here.”
Later that year, Nick moved to New York City, without any help from Alabama. With the autonomy New York gave him, he found fulfillment.
Later that year, Nick moved to New York City, without any help from Alabama. He raised money through a crowdfunding project dubbed Project Freedom. After spending the first year in a city-run hospital, he moved into a high-rise apartment where he had twenty-four-hour nursing care. In 2010, he and Alejandra Ospina, another wheelchair user, exchanged vows at a ceremony in Central Park. But they didn’t get legally married because that would have reduced both of their monthly Social Security payments.
With the autonomy that New York City gave him, Nick also found professional fulfillment. Though he could move only one finger on each hand, with those fingers he drew elaborate comics such as “Bunnies in Space” using a computer trackball mouse that was last manufactured in the 1990s.
Nick lived in New York City for nearly eight years. Eventually, he and Ospina separated, and his health deteriorated. After shuttling between nursing homes and hospitals, Nick died on February 18, 2017. Five days later, a memorial service was held for him by members of his New York community on what would have been his thirty-fifth birthday.
Lest you think these refugee stories are all tales of the ancient past, let me tell you about the Wygand family, who uprooted from Wellington, Florida, to Broomfield, Colorado, earlier this year. They had no choice, says Carol Wygand. Her two-year-old son, Luke, has a physical disability called nemaline myopathy, which means his muscles are weak throughout his body. That makes it hard for him to eat, breathe, and move, so he’s fed exclusively through a tube and breathes with the help of a ventilator connected to a tracheotomy in his throat.
In Florida, Carol says, there was some home nursing care available for Luke. But she says it was “a very unstable situation,” with gaps in coverage caused by nurse cancellations. “It’s very hard to keep a steady job when you can’t count on a consistency of coverage, and a lot of nurses are not well trained or experienced to care for trachs and vents.”
The Wygands felt they needed a situation where Carol could be paid for the many hours she spends helping Luke so she could concentrate on his well-being without worrying about holding down an outside job. She found a program that would make that possible—in Broomfield, Colorado. So the family moved.
“You are not only moving across the country; you are moving across the country with a special needs kid, and that’s a lot.”
“It was a hard decision to make,” Carol says. “We left friends and clients. My husband has his own business as a health coach and he was able to keep some of his clients online, but he lost a lot of them because of the move. You are not only moving across the country; you are moving across the country with a special needs kid, and that’s a lot.”
In Broomfield, the family had to find new medical specialists for all of Luke’s needs. It was a lot of work, but Carol has no regrets.
“Colorado is a beautiful state and they have so many resources for special needs,” she says. “Luke loves Colorado and after taking some time to adjust to the altitude, he is doing very well. We love Colorado and we are very grateful for all the support we get to care for Luke.”
I’m searching in vain through various thesauruses for an antonym for the word “refugee.” I need that word to characterize the flip side of the phenomenon I’ve just described—people, myself included, who feel compelled to stay in their states.
We’re afraid to lose what little we have if we make a move, so we stay put. There appears to be no appropriate word for us. Are we the static? The stuck? If we aren’t the displaced people, are we the placed people?
Believe me, here in Chicago there are many brutally cold nights in deepest, darkest January when I say to myself, “What the hell am I still doing here?” I fantasize feverishly about chucking it all and moving somewhere warm. Anywhere!
But the problem is, I receive state-funded home assistance. I have a crew of people I’ve hired to help me and the state pays their wages. If I moved, it would have to be to a state that is at least as generous as Illinois is in this regard. And there can’t be any residency requirements or waiting lists. I can’t wait months or even years to get out of bed. I have to be eligible for service as soon as I arrive.
If I were to leave Illinois, there’s no turning back. If I remove myself from the program that pays my workers, I may never be able to rejoin. The rules say the upper age limit to start receiving services is fifty-nine. I’m sixty-two. Because I enrolled many years ago, I remain eligible indefinitely. But if I leave and later return, I’d be too old to reapply.
It’s all so daunting. So when I’m steamrolled by the January blues, I just pop open another beer and hunker down.