Ally Bruener starts her set bluntly: with a joke about suicide.
“I’ve realized I’m the worst degree of disabled,” she says, “because I’m too crippled to kill myself but not crippled enough to convince someone else to do it for me.”
On stage, Bruener stands out from many other comics. She’s 29 and hasn’t walked since she was seven, due to congenital muscular dystrophy (CMD). She has a wheelchair that she stays in 24 hours each day. She uses comedy as an outlet, a chance to talk openly about what it’s like to live with a disability.
Bruener came to comedy at a difficult time; she’d just dropped out of college, and she was unsure where her life was headed. She took a stand-up class at a comedy club in Louisville, thinking it would be a short-lived indulgence. Five weeks later, the class held a graduation show, and she was hooked.
Audiences may come to her shows with preconceived ideas about disability, and Bruener’s aim is to challenge those perceptions. Whether it’s sex or dating or relationships with parents, her comedy sheds light on the richness of disabled people’s lives.
“It’s always been important to me to make a point to make sure people know I’m not who you would expect me to be, and I’m proud of that,” Bruener says. “So I like to use my comedy to make people a little bit uncomfortable, because I think you have to be a little bit uncomfortable to open your mind.”
Suicide in particular became a personal challenge in her comedy. In 2009, she lost one of her best friends to it. Here was this topic that was suddenly not funny at all, she says, a test of her philosophy that humor could be found in anything. As long as suicide was untouchable, then that idea was false. So she started joking about her own suicide as a way to prove that anything can be funny.
Bruener poured herself into comedy in the years that followed that first class, traveling from her home in Alexandria, Kentucky, across the Midwest and as far as New York City to perform, with the help of her dad, Ron.
CMD is a degenerative disease that keeps muscles from rebuilding, primarily affecting the skeletal muscles. As a result, Bruener has severe scoliosis, diminished lung capacity, and can’t achieve basic tasks without support from another person. Ever since she was a kid, Bruener’s dad has helped her get up in the morning, use the bathroom, get dressed, and move about her daily life. For the past six years it’s just been the two of them, since her mother left.
“He’s probably the hardest working person I’ve ever met, I can definitely say that,” Bruener says. “He’s very dedicated to his family and his community; he always wants the best for everybody. He’s the kind of person that would give a stranger the shirt off his back. So if he’d do that for a stranger, imagine what lengths he’ll go to for his own kids.”
But last year, Ron started having knee problems, and he needed a hernia surgery, leaving him less capable of helping his daughter. He’s a maintenance worker at an apartment complex, and due to his own health problems, can only now work part-time. It became clear that just getting through the day-to-day would be a challenge for Bruener, let alone traveling for shows, which she put on hold.
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Bruener decided it was time to apply for Medicaid-funded home health care. What followed was a long and still unfinished battle to receive even basic help, a process that has left her feeling helpless. While the country has debated loudly about health care in recent months – and repeated announcements from the Congressional Budget Office have shown that tens of millions of Americans would lose their health insurance under Republican plans to repeal Obamacare – Bruener’s story is indicative of what happens when funding is inadequate for even some of the most clearly established recipients of Medicaid.
Even as dramatic Senate scenes have played out, ultimately killing promises to repeal the Affordable Care Act, Medicaid beneficiaries like Bruener are already struggling with an underfunded system.
People with disabilities are clearly covered under Medicaid for home health care, but Bruener has run up against considerable problems in receiving basic assistance. She’s dealt with overly complicated applications, a lack of information, unreliable services from nursing agencies and a lack of options for caregivers. When Bruener calls the state, people taking the calls can’t even understand her well because of her breathing machine, which affects how she talks.
Lately, Bruener has been stuck at home while all of this plays out, unable to leave the house or even use the bathroom and shower regularly.
“My health is on the line because only peeing five times a week is going to result in internal infections, kidney disease, and probably pressure sores,” she says. “Beyond the medical issues, I am losing every sense of myself. I have no access to my community. I have no way to contribute to the greater good. I’ve invested so much of myself to building my comedy career and it’s feeling irrelevant. It’s left me questioning my value and purpose. If nothing changes, I will be in a nursing home before I turn 30. If it comes to that, I fear for my mental and emotional health.”
Her fight has been underscored by a lengthy political showdown in Kentucky over the state’s application of Medicaid, the government-subsidized program that supports health care for low-income people, pregnant mothers, elderly adults, children in foster care, and people with disabilities.
Months before President Donald Trump was elected to office and Congressional Republicans began a campaign to repeal the Affordable Care Act (ACA), Kentucky Governor Matt Bevin released a controversial Medicaid plan that would cut some entitlements and refocus the program around “personal responsibility.” At the time, Bevin, a Republican, was rolling back a Medicaid expansion that had been put in place through the ACA by his Democratic predecessor, Steve Beshear.
While Bevin has suggested that his plan is aimed at getting able-bodied adults to work, disabled people are losing access to care, as well, because home health agencies have seen a cut in their funding from the government.
When she began looking for help in the spring of 2016, Bruener couldn’t get straight answers on how to apply for the service.
“I’d call the numbers the state had listed online and would get transferred multiple times before ending up back at the person I had called initially,” she says. “I submitted my online application in mid-July and never got a response.”
A couple months later, she was told her application was effectively invalid because she hadn’t included newly required paperwork that no one had asked her for. Her application was eventually approved in October, and then she had to set about finding an agency to take her case. She waited for information from the state, but got none. But by that point, her dad needed surgery and couldn’t assist her anymore. She had to use her savings to pay strangers from social media to help her in home, and quickly ran out of money.
“It’s hell. It just is the closest to hell I’ve ever felt,” she says. “There’s no faster way to feeling like you don’t have control of your life than dealing with the government. When I started the process to try to get help, I was optimistic. I thought if I took a few bullets, it wouldn’t be this huge headache or this huge battle. And I wasn’t mentally prepared for what it turned into and what it’s still being.”
After talking to a network of people with disabilities, she found out how to receive care, but was told she only qualified for nine hours of care each week. When she signed up with a home care agency, she found that understaffing meant assistants were only available for about an hour each day. She’s since become eligible for up to twice as much assistance from her agency, but says it’s irrelevant because the nurses can only come when their schedules allow. But that covers only the most basic needs – as she puts it, enough just to not die. And as a person with a disability and no college degree, job prospects are limited. Comedy doesn’t pay that well, she says, unless you have a massive fan base.
“I mean, one thing is, I could decide to do porn. That’s not out of the question,” Bruener says somewhat jokingly, referencing GimpsGoneWild.com. “It could be kind of poetic, actually, if it came to that – in my mind, the handicapped girl who can’t get adequate health care doing porn just so she doesn’t die. That would be a good slap in the face to all the good Christians in our government.”
But beyond being stuck at home, unable to move around and take care of errands, let alone take care of herself, Bruener is also having to forgo her main creative outlet. Without comedy, she can’t interact with her community or support friends who are chasing their dreams. She can’t vent through stories she tells on stage to turn hardship into humor.
“My voice isn’t one that gets heard all that much,” she says. “[Comedy] was a way of kind of coping with that fact of making myself heard, making myself be listened to by a bunch of strangers, just because I never really had a lot of normal human interaction… It was kind of a way for me to fill my quota of feeling like a part of the world.”
Most days she stays home and uses the computer, waiting for either one of the home care workers or her dad to help her achieve some basic chores. She uses Facebook and writes about her situation, shares articles about Bevin’s health care plans and tries to stay connected to her friends.
But until she can get back on stage, she’s stuck fighting to get the assistance she needs just to get through the day.
Recently, she was able to make a trip to the state capitol addressing expected changes to the home care program. Despite having limited mobility lately, she managed to travel the nearly two hours to Frankfort for a public meeting, where she said the government was acknowledging that the system is broken.
Bruener says they were taking their time with a decision, trying not to make mistakes with any new changes. At the meeting she attended, administrators simply listened to people’s stories. Kentucky is already plagued by a contentious health care debate as Bevin attempts to cut Medicaid for poor adults in the state.
She’s optimistic, but doesn’t expect changes to come any time soon or to improve her situation too much.
“It’s frustrating. It doesn’t have to be this way,” she says. “But society continues to allow this sort of behavior, and they don’t see the issues and therefore they don’t see the need to fix the issues. Even though there’s been a lot of back and forth about how society views people with disabilities, there’s still a long way to go. I’m still not seen as socially equal as an able-bodied person. That’s not saying there aren’t people who do see me as equal, but society as a whole still sees me very much as a second-class citizen.”
Bruener posted on Facebook recently that she’s decided to leave Kentucky in search of a state that will better meet her needs. She’s narrowed the list to six states, all of which have favorable Medicaid rules and more opportunity for her to get the help she needs and, hopefully, get back on stage.