Disabled, Black, Female, and Queer: The View from ‘the Bottom of the Barrel’
People still ask Tiffany Porter when she is going to finish college. She stopped attending 10 years ago, three courses shy of earning a degree in social work, because she was in too much physical pain to continue. While Tiffany, who lives in Fairport, New York, may look fine most of the time, simple everyday tasks can be excruciating and exhausting. These days, she would like people to be more sensitive and stop asking her to do things she is unable to do.
“Enough is enough,” she says. “I’m not going to feel bad for being disabled.”
Owning her disabilities was a 13-year journey. The 39-year-old mom lives with fibromyalgia, arthritis, tendonitis, polycystic ovary syndrome, and Type 2 diabetes. Over the years, she’s tried various medications, diet changes, trigger point injections, and even morphine—but they didn’t help. She even underwent two unnecessary surgeries—one for weight loss and another for her knee—when doctors wrongly attributed her symptoms to those conditions. She was finally diagnosed with fibromyalgia, a condition that causes pain throughout the body, in 2014, after years of constant pain.
“My diagnosis should not have took that long. Black women are constantly dismissed by medical professions,” she says. “My fibromyalgia wasn’t diagnosed for nine years. My best friend, who is white, got diagnosed in high school.”
That wasn’t the only time Tiffany’s doctors didn’t take her seriously. In 2015, after six months of fatigue, she insisted that her doctor run a full blood panel. “I saw many physicians and told them about my extreme fatigue, and everyone just brushed it off and attributed it to my fibromyalgia,” she says. When the test results came back, she was rushed to the hospital to treat an abnormal blood count due to the heavy menstrual periods caused by her polycystic ovary syndrome. She received three blood transfusions at the hospital, she says, followed by regular iron infusions for a year and a half.
“If I didn’t go in there and say, ‘I need you to do this panel,’ I would’ve been dead,” she says. “That’s the story of my life. Being Black and female, I don’t get listened to.”
As a single, Black woman supporting her family on disability benefits, Tiffany has experienced a range of disparities—from her pain not being taken seriously by doctors, to not being able to afford healthy food, to not having access to necessary spaces like bathrooms.
“When you’re disabled, you already are at a lower level,” she says. “When you add race to it, you’re at the bottom of the barrel.”
LIVING WITH DAILY PAIN
Tiffany is in constant pain. She can’t walk long distances, everyday tasks deplete her energy, and simple household chores are enough to cause debilitating flare-ups.
As the arthritis in her knees and tendonitis in her hands worsen, the fibromyalgia brings on whole-body pain and exhaustion that can last for days, weeks, or months.
“Trying to cook a meal every day, I can’t do it,” she says. Pots and pans are too heavy, she can’t open jars, cooking is fatiguing, and loading the dishwasher wears her out. Her sons—ages 9, 15, and 16—help, but the frustration with her own limitations is evident in her voice.
“I get very emotional about it,” she says. “I’ll think, ‘I got this,’ and I’ll be in the middle of shopping and then I flare and I have to sit down.”
Tiffany uses canes and braces, and an electric wheelchair when she goes grocery shopping. She intentionally shops later in the day, when she’s less likely to have neighbors ask about the wheelchair or strangers stare at her.
The emotional toll has also shown up in other areas of her life. It’s depressing for her not to work a full-time job, and dating has been difficult and lonely.
“Dating with a disability is hell,” she says. “Disclosing that I am disabled to potential partners was difficult.” Last year, Tiffany came out as queer, and since that time, she has been upfront about her sexuality and her disabilities.
“I’m not hiding that anymore,” she says. “I just feel more comfortable with who I am now and what I’m looking for.”
ADVOCATING FOR SOCIAL JUSTICE
Tiffany has been teaching friends and family how to advocate for themselves in the medical system, because receiving good health care can be a matter of life and death.
She notes the necessity of mandated anti-racism training as part of the medical school curriculum, as well as education for current medical professionals. “We have medical books that still say things like ‘Black people have higher pain tolerance,’” she says.
And a delayed diagnosis and lack of proper care can significantly impact a person’s life economically. Tiffany didn’t qualify for disability benefits until she was diagnosed with fibromyalgia, and even with this support, she can’t afford medically necessary glucose-free foods for her diabetes, or fresh vegetables for her family.
She says the idea that the poor can eat healthy is a myth: “You really can’t budget your way out of poverty. You can do all the budgeting you want, but it is not going to equate to you eating healthy.”
Tiffany started an online Facebook group in 2020 called Being Black in the Burbs. The group shares tenant resources, provides community stands with toiletries and food for low-income neighbors, and advocates for state and nationwide efforts to stop racism, such as protesting police brutality.
The experience of Black people is “out of sight, out of mind,” Tiffany says, and anti-racism education is needed in all school subjects, in all grades. She is also advocating for curriculum changes that teach children about disabilities and chronic illnesses.
But her advocacy on these social justice issues has not been well received in her suburban neighborhood. She says that there are Facebook pages that criticize her, she’s been shamed for her disabilities, she’s been verbally attacked at school meetings, and she’s been doxxed, with the names of her kids and their address published online—all in an effort to intimidate her from speaking out against racism.
Her focus is to draw attention to issues so there can be change. “We can say something is wrong with someone or the community and give them a chance to rectify it,” she says. “It doesn’t mean we throw the whole person or whole community away.”
ADVISING OTHER PEOPLE WITH DISABILITIES
Tiffany urges others living with disabilities and disorders to remember that the society and bureaucracy they’re struggling with were not created to benefit people with disabilities.
“You’re working with systems that are just not built to make your life any easier,” she says.
She encourages joining support groups, finding ways to reduce stress, and showing up to doctor appointments prepared with questions. Talking with others can be a great resource for advice on meal plans, exercises, specialists, assistive devices, and medications. After years of experience, she has found chiropractor visits, massage therapy, yoga, and ketorolac injections are helpful for her.
Tiffany leans on her family for support and acknowledges that it took a village to raise her three sons. But for people to truly be supported, there needs to be more understanding in society at large.
“Even though I don’t need assistive devices all the time, I need the accessibility 100% of the time,” she says. “When you make stuff accessible for one demographic of people, it’s really making it accessible to all people.”
People with disabilities need accessibility in all spaces—bigger bathrooms, wider walkways, and more—which she says would help everyone, especially as people age. And yet, our society doesn’t make this a priority.
“This country couldn’t care less about the disabled people in it. Imagine being disabled and Black,” she says. “We need our children to understand what disabilities are and break down the many stereotypes and stigmas attached to them.”