“Every moment of every day is about survival,” says Melodie, who’s in her early 60s, unemployed, and lives in an RV in one of the wealthiest cities in the world, San Francisco. Aspects of her story are shockingly common. She lost her housing around the same time that millions of others in the U.S. did, during the housing market crash of 2008. Now she never gets enough sleep or feels safe, and she complains of police and city workers harassing her and perpetually asking her to move. She’s part of a large Bay Area homeless population who are having their human rights violated according to a recent United Nations report, which criticizes city officials for denying access to water, sanitation, and health services. The experience that led her into homelessness is also common: a traumatic brain injury (TBI).
“When I was two I was asleep in the top bunk of a bunk bed,” she says. “I rolled off and I woke up as I was falling.” After landing on the floor Melodie decided to go back to sleep. Her mother found her immediately and woke her up as Melodie vomited, a symptom typical of concussions. She was taken to the doctor but the doctor gave her a completely clean bill of heath. Though no one knew it at the time, her fall would change her life forever.
In 2013, representatives of the American Psychological Association reported to Congress that about half of all homeless people in the U.S. have suffered a TBI. These experts speculated that those who have experienced a TBI often have cognitive defects that make economic and housing instability more prevalent. Melodie says her experiences match those speculations. When I asked her why she thought she was homeless, everything she talked about pointed back, directly or indirectly, to her fall.
In 1997, after experiencing memory difficulties that caused her to be fired from every job she ever held, she had her brain scanned. The scan revealed an injury to the left temporal lobe, an area associated with memory. She now believes her fall caused her memory difficulties. That knowledge would be helpful for her if we lived in a society that consistently makes accommodations for those who have difficulties associated with TBIs. But Melodie thinks that’s not the case, and she’s never gotten the aid she needs.
“I don’t have thousands of dollars to pay someone to find out what I actually need,” Melodie says, “but as I understand it I don’t have skills of daily function.” Although Melodie can get out of bed, brush her teeth, get dressed and eat food, she says these tasks take her an exorbitant amount of time. She can’t cook, so her diet is limited to nuts, fruits, or prepared foods. Even making a sandwich is impossible.
“I’m constantly losing what I’m using as I’m using it,” Melodie says. Once, after writing a letter to a friend, she stood up and immediately lost the letter before even stepping a foot away from it. Then she got a new sheet of paper, wrote the note again, and immediately lost it. She ended up writing the letter four times.
Though, in a sense, Melodie’s disability is invisible, it shapes how she dresses and presents herself to the world. Objects attached with strings and fasteners dangle off of her clothes. “Everything I need has to be attached to me,” she says. “That’s my main coping mechanism.” At any given moment she has about 15 objects attached to her including a flashlight, keys, earplugs, a tire gage, a swiss army knife, a cell phone and a cell phone charger.
Melodie survives due to her own coping mechanisms and the accommodations and help she gets from a few friends and volunteers. These individuals occasionally bring her prepared foods. She showers at a local church where she is given extra time due to her condition. In the past, when she accessed other shower services that the city and non-profit groups offer, those running the services would bang loudly on the door to rush her along. She couldn’t get clean in time and she found the situations scary.
Melody thinks the aid that the city of San Francisco has offered her isn’t helpful. Though the city has provided her with talk therapy, which she attended from 1974 to 2014, she thinks it only addressed the effects of her brain injury. It didn’t get to the root of it. Instead of helping with skills of daily function, the therapists would address her anxiety. But her anxiety comes as a result of her lacking skills and the help she needs to function.
“I read as anxious” she says, “but if you can’t do all the things that a normal person has to do to survive, you’re going to feel pretty anxious. So when I try to talk about my injury it’s dismissed as being anxious.”
People with TBIs have a higher propensity for depression. But it’s unclear how much of that propensity is a direct result of the injury and how much is shaped by a society that doesn’t make accommodations for people with TBIs. When I asked Melodie if she was depressed, she asked me, “How could I not be?” She talked about how constantly struggling with tasks that come easily to others contributes to depression. It’s hard to say whether, if Melodie got the aid she needed, she’d still be depressed.
Since Melodie has struggled with her injury since she was two years old, it deeply affected her experiences in school, making it harder for her to learn the academic skills needed to function as an adult. She found academic tasks intimidating and frustrating, so she never did them. Even though she never did her homework and would just sit in the back of the room, her teachers never addressed the issue.
“I did not get the help I needed in school,” Melodie says, “because little girls who sat still were rewarded.” When Melodie would tell her teachers that she didn’t know how to do academic tasks, she says they would tell her she was bright and that she’d pick it up eventually. To this day, she feels those who can help her are still dismissing her.
“Accessing city services is 100% about what you qualify for and not about what you need,” Melodie says. “What I need is appropriate TBI rehabilitation and people to help me build up skills of daily living.” But she says she doesn’t qualify for those services and has never received them. Melodie has met many homeless people who have had TBIs and has asked about their experiences. She says none of them have gotten help specifically for their brain injuries and they’ve always been sent to talk therapy.
Melodie thinks her medical condition has been treated as a character defect. She complains of being bounced around like a human ping pong ball between city agencies that aren’t equipped to deal with TBIs. She says that sometimes when she’s brought her brain scan in to show those who were supposed to help her, they’d deny it was a problem. Sometimes homeless people themselves don’t even know they’ve had a TBI.
What would it look like to give homeless people more control over the aid that agencies provide them?
“Our society dismiss TBI to such a harsh degree” Melodie says, “that people don’t know how to even recognize that their brain injury contributed to their being homeless.” She knows several people who have had a brain injury several months before becoming homeless but didn’t make the connection even after they talked to her.
Melodie and other homeless people with TBIs will continue to suffer more than they need to until we live in a society that takes their injuries seriously. Talk therapy alone isn’t helpful, as people with TBIs often need help with life skills and sometimes need physical rehabilitation. Since TBIs are under-diagnosed, the Brain Trauma Foundation is doing important work to improve diagnosis with education outreach. The Brain Injury Association also helps people with TBIs by advocating for rehabilitative and physical therapy treatment options.
As citizens, we need to remember how often disability contributes to homelessness, and that, often, those disabilities are invisible. Individuals and organizations who work to help homeless people need to ask those people specifically what help they need. City agencies tend to create aid plans for homeless people to fit into. But a lot of people, like Melodie, don’t fit into those plans. What would it look like to give homeless people more control over the aid that agencies provide them? Since so much energy is wasted on “help” that isn’t helpful, like Melodie’s talk therapy, wouldn’t including homeless people in planning make city aid more efficient and effective?