Robert and Kim Vaughn in their home. Robert has low vision; Kim is blind and partially deaf.
Robert Vaughn met his wife, Kim, when a friend called him to help fix her computer. “And the rest is history,” he says. In the nine years they’ve been together the Vaughns have gotten up to a lot; recently, they went to Hawai’i together and climbed a volcano. He’s the president of the local chapter of a national organization, an IT professional and a musician who “runs the gamut from bluegrass to hard rock,” while she fundraises and sells candles through Scentsy.
They also both belong to St. Louis’s often-unseen community of deaf-blind people.
Katelyn Mae Petrin
Robert Vaughn, tech nerd, describes himself as his wife's "guide dog."
The Deaf-Blind Community consists of anyone who has some degree of deafness and blindness, partial or complete, and anyone who helps them—friends, family, and Support Services Providers, also known as SSPs. Kim is deaf-blind; she has been blind her whole life and became deaf in the last 15 years. Robert is visually impaired, but not totally. “I’m her guide dog,” he jokes.
Of his wife, Robert says, “You’ll have to speak with Kim on her right side. It’s funny, I always say, ‘She can only hear on her right, and her left ear she always turns to me.’”
Kim Vaughn laughs, responding, “He’s just a comedian.”
Like her husband, Kim keeps busy. She is a member of several local organizations that work to improve conditions for the Deaf-Blind Community (including United Workers for the Blind, where she has been chairman and Robert is currently president). In the past few years, she has also found a passion in fund-raising—recently, she helped a local non-profit with their trivia night. Her work for Scentsy, the candle equivalent of CutCo and Pampered Chef, left her frustrated with their most recent catalogue, which is mostly pictures. Her JAWS reader—a computer system that reads text out loud—can’t do much with it.
But she wants to be even busier. “My ultimate goal is to be independent and be able to work and contribute to society,” she says.
Katelyn Mae Petrin
Kim Vaughn keeps herself very busy; she says she wants to work.
In the past, she worked at Burger King preparing food and cleaning dishes (“it wasn’t any big deal,” she adds). She left that job looking for something that suited her interests more, and she’d like to get back into the workforce. She’d like to work in a bakery.
“I wish we would be given a chance. It’s hard enough when you’re blind trying to find a job. But when you’re deaf-blind, it’s like, ‘Oh my gosh, what can you do?’ If someplace gives me a chance, I would even be willing to say, ‘OK, give me 90 days and let’s see how it works out, and then you can start paying me.’”
Kim bakes just like anyone else, although her process requires some special tools (a medical syringe to measure out liquids in bottles, a computer that reads recipes out loud). She’s not fast, but her cookies are delicious.
“I just want a chance, just like anybody else. I have dreams of working, and so hopefully that will come to pass,” she says, adding, “It’s not that we can’t do these things, but there are some things we need help with.”
It’s hard to track the exact employment rates for deaf-blind people. The most recent Disability Status Report, published in 2013 by Cornell University’s well-regarded Employment and Disability Institute, surveyed 3 million United States citizens. Of those citizens, 2.3 percent reported “difficulty seeing” even with glasses and 3.5 percent reported “difficulty hearing.” This study—like most—does not consider people in both categories. But even so, 59.8 percent of blind people and 49 percent of deaf people reported that they were unemployed. That’s between six and seven times higher than the average unemployment rate in the year of the survey.
And that’s even though many are eager to work.
“I just want people to understand that with a little bit of adaptation, with patience, we can be just as good as the next person,” Kim says.
Over the past few months, the Deaf-Blind Community has been working to pass a bill that could improve the quality of life for deaf-blind people by providing funding to train and pay Support Service Providers, who are often called the “eyes and ears” of the deaf-blind.
Unlike more than 20 other states, Missouri has no system that improves access to SSPs, which a deaf-blind woman named Mary Hale was shocked to learn when she moved here from Ohio. Hale began a non-profit organization, Sight and Sound Impaired St. Louis, to serve as a networking and support group for local deaf-blind people.
Hale explains it like this: if you’re blind, you rely on your ears; if you’re deaf, you rely on sight. But if you can’t hear well or see well, you can’t drive (as Hale says, “You don’t want us driving”), you don’t know who or what is around you, and you might need a voice interpreter to help you hear or someone who can “tactile sign” sign language into your hands. Even if you can go grocery shopping or go to the doctor (not everyone can), it’s hard to find community and easy to become homebound.
“Without help, not only how do you get places, but how do you interact with people? You can’t,” says Hale.
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Bill Koppelmann offers advice at SASISTL's monthly meeting.
The issue gets more complicated when you consider that deaf-blind individuals don’t share one need. As Bill Koppelmann, who himself is deaf-blind, explained at a recent SASISTL meeting, “You’ll notice that some blind people cruise in this room like they’ve known it all their lives, and other people come in here real softly and slowly. That all has to do with their ability to see or their lack thereof. You know. There’s a lot to perceive—“ here, he cackles at his joke “—if you know what I mean.”
And sometimes, says Kathy Rennekamp, it’s difficult to navigate normal life when you slowly lose your sight, as she has. She has had to slowly accept that she can no longer do many things herself, which she discovered when she tried to walk to the grocery store from her house on one occasion. She found herself stuck in the middle of the crosswalk between lanes; after someone helped her across, she couldn’t make out the products on the shelves on her own. Before that, she’d been able to grocery shop on her own.
But Rennekamp doesn’t want that to stop her from living life. “I do not want to be a burden on anybody. I still want to give and participate and be part of the community,” she says. And she also says she wants to make sure her children don’t worry about her.
Part of the problem, she explains, is that deaf-blindness is not a well-known condition. “We're not visible. We have an invisible handicap.” If you look at her, you might be able to guess her impairment if you notice her cane, but “you don't know I'm hard of hearing unless I tell you.” Many people begin as either deaf or blind, then become deaf-blind with old age.
In fact, the Deaf-Blind Community is so invisible that no one has really counted them. Many studies consider deaf people or blind people, but don’t analyze the category of people who fall under both. For the purposes of the SSP bill, the Missouri Commission for the Deaf and Hard of Hearing estimated 2,000 to 5,000 deaf-blind individuals live in the state of Missouri. It’s just an estimate, though.
For those individuals, an SSP could mitigate some struggles. Depending on the person’s training, an SSP might be able to help Kim Vaughn, for example, with everything from driving her to work and picking her up to helping her get accustomed to the workplace environment. For others, SSPs could make it easier for them to maintain their health, interact in public, and get out and about. Rennekamp, for instance, hopes she could become more involved with the community and rely less on her children.
Dana Scott, who volunteers as an SSP, stresses that the people she works with are “not disabled. They’re able.” She says, “Their senses are just different."
The vocabulary can be a minefield. Scott says that most people should be called "hearing impaired" and "sight impaired" and don’t like to be called "disabled" or "deaf-blind." Not everyone shares this perspective; although “hearing impaired” was once a preferred term (and is still used by some, especially older, people in the community), it is now considered offensive by others. Visually impaired, however, still seems to be a preferred term.
Katelyn Mae Petrin
Carol Moody retired from social work because of her declining health.
“People who have disabilities—they want to know others and they want to known for who they are, not just for their disability,” says Carol Moody. Moody has been legally blind all of her life and began losing her hearing slowly over the last 20 years. Recently, other health issues (asthma, carpal tunnel, arthritis, lipedema, and lymphedema) forced her to retire from social work, where she rehabilitated blind people with the state of Missouri.
Moody has the perspective of both someone who has been considered disabled her whole life, as well as the perspective of someone who is trained in helping others and sensitive to broader needs.
“I think it would be really helpful if people who don't have disabilities would be more willing to take a chance and ask questions,” she explains. “A lot of times, people who don't have disabilities are afraid they're gonna insult somebody, and so they don't interact.” Moody says she might not even know someone is around her, depending on which side they stand on. Without others taking initiative, she says she could be considered rude or evasive—when really, she enjoys talking to people and wants to make friends.
And experience has made Moody aware of the ways in which—as much as the Deaf-Blind Community wants to live independent lives as members of society—barriers block full participation in society: “The more multiple issues you have, the more challenging everything becomes.”
Many of her ailments require surgery and medical technology. But her surgery isn’t insured, so she has been fighting her way through her insurance company’s appeals process. In the mean time, she has to pick and choose what services she can afford. And as an adult living on long-term disability, she doesn’t have a lot of income. A listening device (like a hearing aid) might make it much easier to hear her instructor in her aqua class, which would make it easier for her to exercise. Exercise is important because right now, it’s keeping her mobile. But she says she has to pay $1,500 out of pocket before insurance starts to help. That amount of money is prohibitive.
“You know, I've got all these other medical conditions that are actually more critical right now, so that one has to go on the back burner,” Moody says.
She adds, “Getting anywhere is so difficult. A lot of times I have to evaluate between the logistics of how difficult it is, how expensive it is, and how consuming it is time-wise.” Recently she was stood up by the van she scheduled; any time she goes to the YMCA, they provide transportation, but she waits anywhere from 45 minutes to two hours. She has to bring a mug of protein powder to hold herself over.
“If you plan to do one thing, you might as well consider your whole day shot because you don't have control over so many of these things,” she says.
And while the SSP bill sounds great to her, depending on where the funding comes from, she might not be able to benefit from it. If the service were offered through Medicaid, she wouldn’t be eligible since she isn’t part of the program.
But if the SSPs are offered based on need, she says, “It would be a tremendous help, a tremendous service.” She hopes it could decrease her social isolation and communication issues, help her get places, travel, join the community, be more mobile, and exercise more—all of which could improve not just her physical health, but her enjoyment of life as well.
Katelyn Mae Petrin
Cindy Gates has faced numerous medical challenges, one of which caused her deafness.
Cindy Gates is in a similar situation. Chemotherapy for breast cancer damaged her hearing, but since she has tinnitus (a buzzing in her ears), a listening device would not help. Her medical history is fraught: in addition to physical conditions like Cushing’s Syndrome (a disorder related to improper levels of the hormone cortisol), she has major depression and does not respond to medication. “The grim reaper has visited me on more than one occasion,” she says.
With all of her conditions, she says, “I fall between the cracks.” This makes her need for an SSP even more pressing. Right now, she says she doesn’t often make doctors appointments. “I am a cancer survivor,” she reminds. “So you get scared.”
“It slows my independence down; it makes me look like maybe I'm not as contributing to society. But I very much am.”
Gates adds, “I've seen people that don't even get out as much as I do. They're profoundly deaf and blind. And I think a lot of times in society, we put a lot of people aside that can bloom if they even had a chance.”
And in the long run, having an SSP could save money by letting people like Gates and Moody take better care of their health. “We get sicker more often, we present in the ER later, which is more costly. I think, bottom line, we would save this country some money and be more productive citizens.”
Karl Cook didn’t used to read much. For him, it was in part an unwillingness to acknowledge his limitations. “Psychologically, people who are losing their sight are still in denial,” he explains. “’I can still read in print, I can still read that print, I can still read that letter, I can still read part of that letter.’” He admits, “I can’t read that letter.”
He adds, joking, “I’m not sure you’re familiar with denial.”
For Cook, denial was a long process. He says he was born “practically with a hearing aid.” He didn’t realize, though, that his sight was decreasing. “When I was a kid I’d sleep outside, I’d look at the stars. But when I got older in junior high, I thought, ‘Hey, where’d the stars go?’ I thought maybe that was normal, that they’d turned off or something like that.” Instead, it was Usher’s Syndrome, whose major symptom is retinitis pigmentosa, or a deterioration of rods and cones.
He's since faced reality and become a client of Wolfner Talking Book and Braille Library. He says he’s read more books and magazines than he had in the 40 years before. (About this, he jokes, “I feel smug,” then quickly takes it back.) He enjoyed reading so much that he started working with Friends of Wolfner, a group that raises money and awareness for the library’s services. Now, he’s the group president.
The library offers braille books, books on tape, radio shows, movies, braille maps—any number of reading materials to anyone who has any sort of condition that prevents them from reading print. Some patrons don’t have hands; others, like him, have dyslexia, but unlike him, still have their sight.
When it comes to the SSP bill, his sentiments are simple: “I want it.”
Right now, he can’t do some things or socialize without his wife, Jenny. “People always take for granted—’Well, here, your wife can read this to you,’” he says. But often, Cook feels like it’s just too much to ask.
The couple met by chance in 1993 at an American Association of the Deaf-Blind convention in Anaheim, California. Karl had no SSP; Jenny was acting as an SSP for a woman who didn’t really need one. The association group leader offered Cook a choice: work with Jenny, or work with a “grouchy” couple. Cook remembers thinking “Jenny! Jenny!” while Jenny was thinking “Not him! Not him!” because she says she thought he was too much of an extrovert. “And I am not,” Jenny adds.
But they ended up spending time together all week, hit it off, became pen pals, talked on the phone, and got married in 1998. Jenny hasn’t officially been an SSP since they married, but was learning to interpret when they met.
Cook says, “I would like it very much so if I could have more activity, where she’s more of a homebody. I like to go dancing, and she’s not that crazy about the idea. I like to go to comedy things where the standups tell really off-color jokes. Or just hanging out. I would like to be able to get something without my wife’s involvement, so I can buy her something without her knowing what I’m getting her. In other words, I wouldn’t have to depend on her so much.”
And Jenny agrees. She doesn’t always want to go out—crowds bother her at the Muny, for instance. But Karl loves to go. If someone could take Karl to do the things he enjoys, she says, “I wouldn’t feel so guilty.”