Not Like the Others

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I connected with a childhood friend, whom I’ll call Angel, who has experienced the journey of learning how to live with a permanent disability while navigating the complicated maze of inhabiting a body and brain that are not like others in the United States healthcare system.

Those of us who are neurodiverse and differently abled often know from a young age that we are of a different kind.

One of Angel’s earliest memories is waking up in a CT scan as a scared, vulnerable, skinny four-year-old, with nothing protecting her from the rest of the world but a pair of underwear. She was a baby who didn’t feed well, then grew into a teenager who struggled at the onset of puberty with debilitating menstrual cycles accompanied by mental distress. Medical professionals repeatedly told her she was imagining her symptoms and that nothing was wrong.

They claimed that it wasn’t her body that was feeble; it was her mind.

They insisted that she be tougher, stronger, and have some guts.

Years later, when blood flow to her internal organs was restricted, doctors discovered holes in Angel’s abdomen caused by a congenital condition. There, she finally found the guts they had told her she needed all along- guts floating around as a bag disconnected from her intestinal tract.

Worldwide, disabled people comprise the largest minority population, and disability is the only minority status that anyone can join at any point in life.

Many disabilities are non apparent. My own identity lives at the intersection of being a mixed-race woman with a non apparent dynamic disability diagnosed in 2009. The COVID-19 pandemic exacerbated my symptoms, and long COVID combined with medication mismanagement eventually left me incapacitated.

In February 2022, I woke up one day in a New York City public hospital covered in bruises. I had requested sedation in the emergency room, and the hospital staff did not tend to my body delicately. When I regained consciousness, my first memory was of a fellow patient getting close to my face and saying, “They threw you in here like a rag doll.”

The recovery that followed required activating short-term disability benefits through my employer.

During my hospitalization I connected with a peer who suffered from a panic attack and similar trauma. We leaned on each other for support, and said our goodbyes when we were discharged on the same day.

Every day is an opportunity for healing, which is an ongoing and painfully beautiful process.

I am not Angel, but I know what it means to be feeble. I know what it means to feel dispensable.

Some people say their worst nightmare would be losing their vision, losing a limb, losing their mind; a loss of any kind of everyday ability. For disabled people, we are familiar with many kinds of loss, including relational losses: isolation, disconnection from community, safety, stability, and the feeling of being unseen and misunderstood.

When someone asks, “How are you feeling?”

Honest people who don’t feel well say, “I don’t feel well.”

The average response is often, “But you look great!” instead of, “What can I do to support you?”

Disabled people can steadily grieve a life they may never live because of health disruptions affecting family planning, professional careers, and the ability to access what society considers a typical life. (btw wtf is “normal”???)

Everyone has a story and life struggles that deserve empathy. Yet belonging to a marginalized group can cause an already vulnerable person to feel walled in, labeled undesirable, or discarded as an “other” because they are not like everyone else.

Over the last decade, Angel has spent her thirties recovering from internal reconstruction surgeries; eight surgeries in ten years, some lasting more than ten hours.

“This is life-saving,” the doctors insisted.

“You can live without this,” they reassured her.

Angel now lives without her uterus, ovaries, colon, and gallbladder.

She can live without them.

But she cannot live well without the vital organs and systems that sustain her.

Among her surgeries, Angel has also survived chemotherapy for her pituitary gland, an elective procedure that remains an uneasy reminder silently whispering: the process of healing can kill you.

Her response plan for living with multiple disabilities and disorders has been so complex that her treatment has repeatedly crossed state borders. Aside from her home state of Georgia, she has received care in Ohio, Oklahoma, North Carolina, and Florida.

Living at the intersection of her identities in the American South, she was once told by legal professionals that she was a “Yankee Jew,” leaving her feeling helpless in the face of workplace discrimination over accommodations. She endured accusations about her productivity and was told to just be grateful that she had a job.

Angel is like, “Sis, I’m just grateful I’m able to wake up and be present for the moments of joy in my life.”

This is why disability disclosure can carry such a heavy burden: people may fear discrimination, stigma, or lack of support.

Angel’s life is not lived through the lens of pain. She has a long list of accomplishments, including an advanced degree in historical preservation, a loving spouse, and achieving upper-management status in an office job before ultimately choosing Social Security Disability benefits to sustain her life.

The process of applying for Social Security Disability took more than two years of denials and appeals. During that time, she had to refinance her home multiple times, accumulate credit-card debt, and spend what she estimates to be hundreds of thousands of dollars to stay alive.

She receives a monthly benefit of approximately $1,400 and is insured through her husband’s employer. Without that coverage, she estimates she would pay more than $300 a month for health insurance.

Earlier in my career I worked with children who had language-based learning disabilities like dyslexia. Dyslexia-friendly editions of books have enlarged text and cost more than regular editions. Disability comes with hidden taxes.

The American social safety net can be extraordinarily difficult to navigate for people whose bodies require ongoing care. A monthly benefit of $1,400 is difficult to stretch across treatment, medication, housing, food, and bills. Angel fears a future of destitution while knowing that the public housing system itself can be unsafe and under-resourced.

Angel does not have one primary diagnosis. Her diagnoses include endometriosis, adenomyosis, fibromyalgia, treatment-resistant depression, generalized anxiety, obsessive-compulsive disorder, complex post-traumatic stress disorder, autism spectrum disorder, and connective tissue disorders. She also experiences severe central nervous system complications and has experienced symptoms of psychosis in a body that often lives in threat mode.

The truly unspeakable dysfunctional body is the failure of the United States medical system.

Insurance structures can leave providers with limited time per patient. Specialists often operate within separate silos, dividing related body systems into completely different categories that can result in deferrals, dismissals, and looping displacements. Hospitals are frequently under-resourced and understaffed, limiting even talented physicians’ ability to provide meaningful care.

The United States healthcare system is difficult to understand even for the average healthy and neurotypical person. The amount of strength, will, and fortitude it can take to self-advocate, educate yourself, and fight for basic rights and care is at a superhero level.

The Chart is not an accurate capture of the mind, body, and spirit of a human being.

Sometimes, the healthcare system feels like a monster that will swallow you whole.

Angel attends programs at the Mayo Clinic in Jacksonville, Florida, where she has found support in navigating her disabilities while receiving treatment from specialists including neurologists, pulmonologists, physical therapists, occupational therapists, speech therapists, gastroenterologists, cardiologists, and others.

She lives with a light-filled, golden heart, caring deeply about social justice and serving as board secretary for the nonprofit organization Justice Unites Savannah Together (JUST), which brings different houses of worship together to pursue justice by responding to community problems and advocating for equitable policies and initiatives in Savannah-Chatham County.

I deeply care about and relate to how trauma imprints on the nervous system, and about the social justice work needed to advance disability advocacy and rights. Many of us who have survived trauma and live with mental disorders experience violent flashbacks, memories of feeling lost and broken, panic attacks, and paranoia; experiences that can be perceived as something frightening or even spiritually sinister, separating us from our Creator.

Three years ago, Angel lost a friend to the deadly disease of depression. This tragedy inspired her to value her own life because she recognized so much beauty in her friend that she couldn’t see in herself.

The Ram Dass mantra she repeats is, “I am loving awareness.” It is her answer to bad or hateful thoughts.

She also tells herself, “Say yes and show up.”

You can feel like shit, but it’s better to feel like shit with other people around.

Angel’s faith has deepened over time. She recently celebrated the Jewish New Year, Rosh Hashanah. The New Year culminates in Yom Kippur, a day of atonement when Jews traditionally understand themselves to be especially close to God.

For this occasion, her worship community invited her to speak about her experience in sanctuary. She shared a profound experience of feeling included, restored, and loved, with children running around joyfully blowing shofars and echoes of Leonard Cohen’s Hallelujah resonating with her story.

The work of living with a disability is exhausting. Yet regardless of her limitations, Angel uses her voice and art to make a difference for others, feeding other people’s souls through righteous action and reflections on how to move forward with courage, greeting each day with: “Here I am.”

Angel is a talented artist. “Drifting off to Dreamland” soft pastels and colored pencil on sanded paper, 2025.

Angel says her life has been filled with lessons but not in a punishing way, in an enlightening way.

Belonging is the best medicine and healing means looking ahead.

We arrive here to learn, to become, to believe, and to embrace ourselves and others as human. Our existence and this one life is so precious.

In the Holy Bible, the poor, sick, disabled, imprisoned, widowed, orphaned, foreigner, and socially powerless are not peripheral to the story, they are central to it. The people pushed to the margins are the center.

The meek shall inherit the earth.

What does God ask us to do when we discover a person in need?

I don’t think it’s to save them. It is to listen.

Kalyn’s recommended readings:

• Demystifying Disability (2021) Emily Ladau

• The Anti-Ableist Manifesto (2024) Tiffany Yu

Disability advocacy is the work of advancing the rights, dignity, access, inclusion, and self-determination of disabled people. It can take many forms: challenging discrimination and ableism; advocating for accessible healthcare, education, housing, transportation, employment, and public spaces; supporting disability justice and policy reform; improving representation; and ensuring that disabled people have meaningful authority in decisions that affect their lives. At its heart, disability advocacy asks society to move beyond viewing disability solely as an individual medical problem and toward understanding the environmental, social, and institutional barriers that can create or intensify disability-related inequity. The disability rights movement has been shaped significantly by disabled people themselves, including the principle “Nothing About Us Without Us.”