Photo showing a person kneeling down, assisting a person sitting in a wheelchair with putting on a sock.

Home Health Aides Help Me Live My Life. We Need to Pay Them Better.

When I decided to begin living on my own after my mother’s stroke, I knew I would receive an increase in the number of weekly attendant hours assigned to me. Since I required assistance with several activities of daily living,…
two hands holding together on blurred green background

Sex Education is for Everyone. Even Disabled Kids.

We live in a society that desexualizes disabled bodies. This allows the topics of sex and sexuality to be left out of the educations of many young disabled people. As disabled students head back into the classroom this year, this…
Close up of doctor and patient sitting at the desk near the window in hospital

Doctors Need to Believe People Who Are Disabled and Undiagnosed

When you’re disabled, people expect your story to follow a predictable trajectory: you experience a symptom (or a litany of symptoms), you see doctors and specialists, tests are run, and at some point, you receive a diagnosis. Though it might…
A spilled bottle of different types of medicine on top of $100 bills.

We Need to Think About the Future Beyond “Miracle Drugs”

On December 23, 2016, the FDA approved a drug treatment for Spinal Muscular Atrophy (SMA). Two days before Christmas. I wished the timing was different, a month earlier or later would have been better. So close to Christmas, the approval…
Transgender flag pattern on the fabric texture

Navigating the Twists and Turns of Healthcare as a Trans Disabled Person

Statistics on the transgender community are hard to come by — we can’t even agree on how many people in the United States are trans. We do know, however, that trans people experience significant health care disparities, particularly in…
A deep blue tinted photo of a person's torso. The person's hand is on their back, indicating pain.

Stop Telling Chronic Pain Patients That We Should Just Accept Our Pain

The “pain acceptance” movement has begun to gain traction in the wake of deaths from the opioid epidemic—at its most basic, pain acceptance counsels that people in chronic pain should accept that they will always be in some level of…
A hand resting on a wooden surface holding a zebra-print awareness ribbon.

May is Ehlers-Danlos Syndrome Awareness Month. Here’s What You Should Know.

When I tell people I have Ehlers-Danlos syndrome (EDS), they usually give me a blank stare or reply, “What does that mean?” Answering doesn’t clear up any of their questions, and it actually creates more: How did I get EDS?…
An outline of a woman with her hands on her head, looking up in despair.

First Doctors Told Me My Pain Was All In My Head, Then They Told Me I Would Die

My disability requires me to carry memory foam pillows with me everywhere I go.  My disability is invisible — the pillows are not. At a recent cardiology appointment, a nurse made fun of my memory foam pillows, assuming I was…
Two silhouettes of heads connected back to back. Each has a speech bubble coming out.

I Needed My Caregiver to Keep Me Alive. She Exploited That Power.

Content note: this post discusses the concept of caregiver abuse. I have a fear of becoming a statistic. I made it through four years of college without being 1 in 3 disabled women sexually assaulted on college campuses, a number…