The Key That Unlocks All the Doors
Macon, Georgia (Senate District 26)
On a sticky, hot day in July, Amber sits in the open space between the front door and staff desk in the central hall of the nursing home where she lives. Like many residents of such facilities, she’s waiting to see if anyone will come visit her today. Even though her face shares the same mix of searching and feigned passivity with her neighbors, it’s very different. It lacks the lines of age.
(Story continues below after slideshow.)
Amber Davenport is a 24 year-old woman with cerebral palsy (CP). Due to an unfortunate and cascading series of events, she now lives in a nursing home in Macon, Georgia, and has been there for a more than a year. Amber grew up in Perry, Georgia, primarily living with her grandmother because her parents were in jail for armed robbery.
Amber is miserable in the nursing home and has no real friends there. She has gotten to know and appreciate Quan, who is the unit manager for the suite she’s on. She likes to go and sit out near the nurses’ station and talk to the staff. She says, “It’s not really fun at all.” The other people here are all older; they don’t share her interests. “Sometimes people are nice. Sometimes they’re mean and hateful. They have attitudes.” She means both the staff and other residents. She says sometimes the other residents even get up in her face, which she says is really bothersome. Amber tells a story about a time when an older resident took an unwelcome liking to her. He started making advances and getting really close. She said the hard part was that the staff said they couldn’t do much about it except to tell him to leave her alone. “I try to avoid people like that,” she says.
If Amber could choose her living situation, she would love to have a house, perhaps out in the woods where it’s quiet. As the sound of people screaming in the other room carries on, it’s easy to understand why she longs for quiet. “I’m not exactly a people person,” she says, “but I’d like people to come visit me.” She also talks about how it would be important to have a house that’s wheelchair accessible. She loves just hanging out. Amber’s favorite thing is reading, particularly fantasy fiction such as the Harry Potter books, "The Twilight Saga," and "The Vampire Diaries."
A participant in the Citizen Advocacy program, Amber has a citizen advocate, Tiffany, who works on her behalf and helps her socialize in the community. The thing they share most in common is a love for eating out, which Amber says with a huge grin, “sort of works out!” She goes on to describe some of the restaurants where the two have sat and enjoyed a meal and conversation. More importantly, Tiffany is helping her search for her birth certificate. That would help in the application for a Medicaid waiver, which would then open up other services and maybe even get her out of the nursing home.
If given the chance to speak to a legislator, Amber would want to talk to that person about the fact that she’s 22 and has to live in a nursing home. “It’s not really fun at all, having to deal with people who are so much older. It’s really boring.” She also says that legislators should do a better job listening to the people whose decisions they affect. “We may want to have a part in that decision,” she says. Amber feels there needs to be more of a mechanism where people can participate in decision-making.
On a typical day, Amber wakes up at 5 a.m. She does this intentionally so she can use the restroom and have the staff’s attention before they get swept away distributing trays for breakfast and other morning routines. If she misses the window for when they’re available, it could be between an hour and an hour and a half before they get back to her. She says they are actually not allowed to provide patient care while in the process of doing food. It’s against regulation.
Sometimes, Amber doesn’t even eat breakfast because the food is so bad, instead choosing to read or take a nap through breakfast. If she does eat breakfast, she might have cereal or grits and bacon. Amber says, “I’ve gained weight because the food’s so greasy. It depends on who’s cooking it and how much they care that day. Some of the lunchroom staff are really nice. Some of them of them can get rude, depending on how they feel. It’s typical.”
After breakfast, if she doesn’t have anything particular to do, Amber continues to nap or read through the morning. Then she goes to hang out in the hallway around the staff desk, especially Quan, or other nurses on different halls. “Usually I just sit there,” she says.
Then comes lunch, when she goes to the dining room with about fifteen other residents who have the option to gather. All the other residents eat in their rooms. She says that some days, lunch might consist of potato salad, pea salad, and some other mayonnaise-based salad. “It doesn’t go together. Like, I don’t know where they come up with some of these meals!” Amber says the menus come from a corporate headquarters that run the nursing home facility. Occasionally, they’ll have other options like sandwiches or soups.
After lunch, the staff start laying people down for naps and bathing. They make three or four rounds a day.
Do they ever make an effort to help residents get out into the community? “Not really,” says Amber. She says that they used to take those who were able about once a month for shopping trips and such, but staffing is currently low; there’s no one at this time who is even able to drive the van. Only a few people in the facility would be able to go or be interested. When they used to get out, Amber remembers she went to the fair once last year. She got sunburned really bad.
She does look forward to the weeks when her uncle can come and take her to church on Sundays. They alternate between going to a church in Lizella, about 25-30 minutes away, and one in Warner Robins, half an hour away. She genuinely appreciates her uncle making the effort to get her out of the nursing home and take her to church. She gets to take a break from the nursing home food. Because she doesn’t usually make it back in time for lunch there, her uncle packs a picnic, and they have sandwiches on the road. However, he has a huge truck that’s high up off the ground, so the effort to get Amber in and out of the vehicle is cumbersome. In other vehicle transfers, she’s able to help with her body weight, but this is a situation where she feels powerless. It’s definitely the things she looks forward to least about their outings.
Amber has a striking tattoo on her arm. It is a memorial to her brother, who passed away when he was 15. He was at a cookout at the lake when he drowned. Amber says she feels that his drowning might be attributed to the fact that it was early March and probably too early to be in the water. The theory is that he likely got cramps in his legs from the cold.
Along with her late brother, Amber also has other siblings. While they used to be a very tightknit family, they’ve drifted away from each other, both physically and otherwise. She attributes some of that change to her brother’s untimely death but says some of it probably also stems from other parts of their complicated lives. Amber’s mom was in jail for most of her childhood. When she got out, Amber went to live with her mom, but things did not go well. “She cared more about her drug habit than she did her kids,” Amber says, reflectively. “She’s gonna continue to mess up until she wants to do better.”
“We didn’t have a bad childhood, but I’d say it was rough," Amber says about her siblings. "We always got what we needed, but we probably saw some stuff that we shouldn’t have seen or that normal people don’t see every day.” She says that by the time they’d all graduated or left home (because not everyone graduated), they’d seen house fires, drug abuse and multiple early deaths. “It only made us stronger, but I think some of it has pulled some people away from each other.” After the last attempt to live with her mother was unsuccessful, she was abandoned to live with another family member and 21 dogs. Unspeakable things happened to Amber during that time. She wound up hospitalized for two weeks, malnourished and dehydrated, which is what led her to placement in the nursing home.
Amber says that her CP was caused by lack of oxygen at birth from the umbilical cord being wrapped around her neck. She doesn’t know much more about that story, but sometimes wonders if her mother’s persistent drug use may have played a part in her disability. Ultimately, she feels lucky because she’s met a lot of people with CP who have less mobility or use of speech than she does. She’s glad she can communicate for herself.
If she could have a job, Amber would like to work with animals, her favorite being dogs. She’d like to get a support animal but thinks they’re too expensive for her. Amber believes a dog would not just help her with tasks, but also help with her anxiety issues. She likes dogs because they’re loyal, not mean. They don’t judge, and they don’t take anything for granted. Occasionally, someone will bring a well-behaved dog through the nursing home. These are her best days.
A high performing student, Amber graduated from Perry High School in 2015. She was in a classroom for students with functional needs much of the day, but she enjoyed getting out into other classrooms for electives, including culinary arts and computers (which she hated). She felt like she got a good education. She struggled in math and appreciated that she was able to work in a quiet place for that class. The thing she excelled at most was reading. Overall, she felt like she could have been challenged a little bit more. She made almost all A's in school, graduating with a 3.5 GPA (grade point average).
Amber would very much like to go to college, or take classes online through Full Sail University, but she feels hard pressed to figure out how she’s going to do that. She has no computer and knows that she can’t do classes just through her phone. When she does get to take a program, she’d like to explore creative writing and fiction, or maybe even theology.
Morning has given way to afternoon, which is stretching on and on. Because she has no intellectual impairment (or senility, if she were age-appropriate for this place, Amber can come and go from the facility as she pleases. But she doesn’t. There is a long and frustrating process for signing yourself out at the nurses’ station, across from where she sits. Because writing is made difficult by her CP, it would take her a very long time to sign herself out, even just to go sit outside on the patio as other residents do, in order to enjoy some fresh air and shade trees. Instead, she sits inside a locked door that should be opened to her easily enough.
There are some aspects of the nursing home that are clearly not helping with Amber's disability, as she grows increasingly comfortable in her environment. She likes that her medical needs are met quickly. After having been abandoned for so long, she fears moving out on her own because of this very particular and persistent need in her life. Still, other things have begun to change.
Amber says separation from her family of origin has been good for her. “I’ve learned to speak up for myself more,” says Amber, although sometimes her family says she’s just being “a brat.” “They can’t control every aspect of my life anymore,” she says, which means that her family goes through phases of talking and not talking to her. She doesn’t even know how they feel about her being in the nursing home. Some of them participated in the decision, along with Adult Protective Services (APS), to put Amber here. At this point, though, she is her own guardian, so she gets to decide what happens to her next. Using the same philosophy of superheroes, she cites Uncle Ben’s reminder to Peter, or Spiderman: “With great power, comes great responsibility.” Amber is glad to have the responsibility of her choices. But sometimes she wishes she weren’t doing it alone: “I really don’t like someone making my decisions, but it would be nice to have some help. I’m just going to have to learn how to do it on my own.”
About the nursing home and her future, Amber says, furtively, “This is only temporary. I will get out of here eventually.”
* * * * * *
Four months later, the heat of summer has given way to chilly fall. There’s no visible difference inside the nursing home, although Amber has moved to a different room. The pursuit of her Medicaid waiver is still on hold. There’s one thing, a constant distraction, on her mind: her mother’s pending court case, pertaining to Amber’s abandonment. She worries she’ll have to testify. Working on the Medicaid waiver with this hanging over her head just feels like too much.
Additionally, representatives from the Georgia Advocacy Office (GAO) came to help with her paperwork, but she knew no one on the team. It made her uncomfortable and felt overwhelming. “It was like, yeah, I’m not ready for this,” she says. “I’ve seen the people coming in and out of the building before, but I guess it was just how they approached me. It kind of made me nervous.” She needs someone she trusts to be there to help facilitate the conversation. Amber expresses her desire to keep working with Tiffany, the volunteer she’s been paired with through Citizen Advocacy. Tiffany is who she knows and trusts. The problem is that Tiffany works full time and can only help Amber with her Medicaid waiver application when she is free. Amber says they haven’t seen each other in person in quite some time, though they do talk on the phone occasionally. To date, the holdup is that they still haven’t been able to secure a new copy of Amber’s birth certificate.
It’s the key that unlocks all the rest of the doors.
Writer: Shannon Turner, Photographer: Irene Turner