I’ve been listening to “Baby One More Time,” a lot lately. When I was a little girl, I nervously sang the Britney song at a concert recital, completely ignorant to its sexual undertones. I was naïve to a lot then. Around the same age, my single mom had a brain aneurysm that put her in a coma, leaving my guardianship up for question. While my mom’s friends knew my grandparents, my legal guardians, were probably not the best replacement parents for me, the law said they were next of kin, so I moved across the country to live with them. Thankfully, mom woke up. Eventually, we moved out on our own. But her new physical limitations meant that, in many ways, our parent-child roles were reversed.
Shortly after moving out on our own, we watched I Am Sam, about a single dad with an intellectual disability fighting to retain custody of his daughter as she starts to reach an age that surpasses his mental ability. There’s a heartbreaking scene where the dad (played by Sean Penn) makes the case for why he should raise his daughter,
“I’ve had a lot of time to think about what makes a good parent: it’s about constancy, patience, listening, pretending to listen even when you can’t listen anymore; it’s about love. I’m not a perfect parent, but we built a life together and we love each other.”
Mom and I cried in silence, knowing these were the words we could never exchange, that the unspoken narrative of our life was that she couldn’t fulfill the traditional role of a parent, but she still loved me all the same.
After the infamous shaved head mental breakdown, Britney was considered unable to provide for her kids and she lost custody. Many close to her say she is a great mom, that she would never hurt her kids. But in the eyes of the court, her mental illness deems her a threat to her children. Clearly, there is a gap between the rigidity of the law and complexity of the human experience, one that can have profound consequences.
Referred to as a “civil death” for people with disabilities, a conservatorship means being stripped of some of your basic rights—from medical decision-making to holding a driver’s license to the right to vote. And the legal arrangement is not just limited to the elderly or severely disabled—most young people with intellectual and developmental disabilities are expected to enter one immediately upon graduating school.
What makes someone capable of taking care of themselves? Of raising a child? The criteria changes as perceptions of normalcy shift over time. A century ago, my mom could’ve been institutionalized for having me out of wedlock, as happened to Carrie Buck in the famous Buck v. Bell case. “Many women in the 19th and 20th centuries—especially impoverished, disabled and chronically ill, and ethnically diverse women—were robbed of their reproductive freedom in the name of social improvement,” writes Elinor Cleghorn. From the 1920s to 1950s, tens of thousands were sterilized in state institutions in the United States.
We’ve come a long way from the eugenics movement, but our institutions still fail to adequately support people with mental health issues and disabilities. More than one third of people with mental illness do not receive medical help and they’re likely to die 15 to 30 years earlier than those without a mental health condition. In the United States, most people struggling with their mental health are not found in treatment centers, they’re housed in jails. While approaches to mental illness and disability might be less barbaric, our systems still maintain the same undercurrent of ableism.
Britney’s trajectory over the past two decades has been so tragic because it reveals how the system can damage a person. From the paparazzi scaling her palm trees to the conservatorship controlling her reproductive rights—it’s no wonder she’s become depressed; anyone under her circumstances would break down over time. When a vulnerable person at their lowest point surrenders their trust to an institution that—despite having their “best interests” in mind—fails to recognize their dignity and agency, they can end up worse off than when they sought help in the first place.
I know because I’ve experienced it. Ever since my month stay in the hospital last fall, I’ve been thinking about the ways in which our institutions pathologize us. While we were all there “voluntarily,” the ward was locked; if we wanted to leave, we’d have to seek medical clearance first. One night, a young man had a panic episode at the front entrance. His father had visited that day and he wanted to see him again. Instead of being attended to or allowed to call his dad, he was left kicking and screaming by himself in the hallway. Eventually security guards locked him away in the ward’s equivalent of solitary confinement—fluorescent-lit, single cell rooms with giant windows that put the patients on display like lab rats. Was this treatment really in their “best interest”?
People without disabilities or mental health are allowed to make decisions that aren’t in their best interest all the time. The difference is that their privilege protects them from scrutiny. Minorities aren’t granted the same freedom of independence; afforded the leeway to make mistakes. But every human being—regardless of their health, race, gender or ability—has the right to self-determination, so long as they’re not harming anyone else.
My mom became disabled in 2000, the same year Britney’s “Lucky” topped the Billboard charts. We no longer see Britney as “so lucky,” we know why she “cry, cry, cries” in her lonely heart. Would my mom’s parental proficiency be questioned in the same way now, 20 years later? Slowly, but surely, mental health and disability is becoming we’re opening up to I’m hopeful the conversation around disability and mental health will keep evolving.
I spoke with several adaptive fashion designers and disability advocates on how the industry can be more inclusive. What I heard repeatedly was how big brands looking to go beyond performative inclusivity need to start incorporating people with disabilities into every step of product development. Why bother making adaptive apparel if it’s not functional? They spoke too of the stigma that still plagues the disabled community, one that often manifests as social media algorithms misinterpreting images of adaptive clothing as medical devices, and banning their company accounts (on which they heavily depend since they don’t have large advertising budgets).
Still, these designers won’t give up. I was so inspired to hear of their dedication to empowering and bringing together people with disabilities.
“Why does it have to be ‘adaptive’? It should just be ‘fashion’; it should just be something that whether you have a disability or not, you can find the product you need.” - Helya Mohammadian, founder of adaptive underwear brand Slick Chicks.
What is radical visibility? It’s a dress-reform movement founded on the idea that rather than conceal the body or only be functional, clothing can be used to highlight all the unique identities of the person wearing them. It’s at the heart of designer Sky Cubacub’s inclusive, adaptive clothing line, Rebirth Garments, and everything they do. Growing up queer, disabled and mixed Filipinx-white, the designer knows what it feels like to not feel seen, and is making it their life’s work to make other minorities visible.
Cubacub’s humble devotion to helping others is truly inspirational, “My goal is to fulfill every single need for queer crip joy in life,” they say.
Whether it’s actors playing disabled roles (like aforementioned Sean Penn in I A Sam) or able-bodied writers, like me, writing about physical paralysis—stories about disability still, too often, don’t come from lived experience.
Which is why I’m loving Alice Wong’s collection of personal essays, Disability Visibility: First Person Stories from the 21st Century. From being deaf in prison to living with chronic illness as an Indigenous person, I appreciate the breadth of experiences Wong has included: how they don’t fall into disability storytelling tropes and instead recast disability from an individual issue to a systemic set of barriers.
The anthology is a crucial force, carving room for disabled writers in the literary world.
As A.H. Reaume, a brain injury survivor, writes in their essay, “Disabled voices are needed to change the narratives around disability—to insist on disabled people’s humanity and complexity, to resist inspiration porn, to challenge the binary that says disabled bodies are less important or tragic or that they have value only if they can be fixed or cured.”
🥼 I’m not the only one who knows what it’s like to have my sanity questioned by the medical system.
👫 Introverts fared worse than extroverts in isolation, turns out we need collective effervescence too.
“If we want that pursuit to bring us bliss, it may be time to create a Declaration of Interdependence. You can feel depressed and anxious alone, but it’s rare to laugh alone or love alone. Joy shared is joy sustained.” - Adam Grant.
🌏 The problem with our TED Talk approach to treating societal problems.
“It ignores the bigger, more structural forces that do far more to influence human behavior (from our exposure to early-life trauma to how much money we have to whether we grew up in a segregated neighborhood),” writes Jesse Singal.
🧘♀️ Do meditation apps really help us?
“Wellness, health, and spiritual practices might help a person work through incidences or periods of stress. But they often fail to—and indeed have no way to—address the underlying source of that stress.” - Annie Lowrey.
🗣 Should we cancel “hey guys” or can the common slogan become gender neutral?
👨👨👦 Bart Heynen’s beautiful portraits of queer fatherhood.
💻 Disabled students want to keep learning virtually after the pandemic.
“When COVID-19 hit, we had to find new ways of doing things. Sometimes, just like an old computer, when you reboot it, things run smoother and better than they once did. Looking through a screen, I finally saw and experienced an education that worked.”
👩🍳 The return to restaurant dining is forgetting about people with disabilities.
“We’re now witnessing the able-bodied world moving back to social spaces after their blip of being housebound, without recognizing that we are here indefinitely.” -Jacqueline Raposo.
🍽 Restaurants have shortened menus during the pandemic. Let’s keep it that way.
“The ultimate luxury, after all, is not making your own choices, but rather having other people make better choices for you.” - Rachel Sugar.
🥗 And for people in assisted living facilities, the pandemic has taken the joy out of eating.
“We don’t even get to complain about things like, ‘I didn’t order French, I ordered ranch’,” writes Lois Pritzlaff.
🔥 It’s hot boy summer for Lil Nas X.
I’ve been obsessed with Special (Netflix): a semi-autobiographical comedy about navigating life in LA as a gay man with cerebral palsy created by and starring Ryan O’Connell.
Rather than depicted as inspiration porn or a sympathy case—as disabled characters so often are—O’Connell gives his character complexity. He’s a selfish brat towards his protective mother and an asshole when he gets set up on a blind date with a deaf guy, but he’s also vulnerable when losing his virginity and a devoted work friend to Kim, played by Punam Patel.
Kim might be equally as lovable as Ryan. Her dating escapades and comical frustrations towards her Indian-American family feel like a corrective to The Mindy Project. The other equally enjoyable subplot follows Ryan’s lonely mom as she navigates finding herself as a caregiver (played by actor Jessica Hecht, aka Susan from Friends). I love that they dedicate an entire episode to her grief, one many caregivers can relate to.
With episodes capped at 15-minutes a piece, the first season left me hungry for more. The second season has flushed out the story with full 30-minute episodes, that allow the show to find it’s confidence and affords more space for diving deeper into its refreshing subject matter. It’s a little more sunny than I usually go for, but I don’t mind—how often do we see overly optimistic stories about people with disabilities?
If The New Yorker’s investigative reporting on Britney is too long and detailed to hold your attention, check out their interview with journalists Jia Tolentino and Ronan Farrow instead. I found it much more interesting.
“Part of being an adult in the free world is that you are legally allowed to make bad decisions. We are comfortable when male celebrities gamble their fortunes away, nobody thinks we should save them from themselves. From the beginning, something that has defined Britney’s life is this question of what people think is best for her.” - Jia Tolentino.