The Cody Unser First Step Foundation

So I’ve been a little restless... imagine that. 😏
First, thank you from the bottom of my heart to everyone who reached out after my recent ER visit for autonomic dysreflexia. The messages, comments, and encouragement meant more than you know. Recovery from my breast reduction surgery has been tougher this time around, and you all have been my extended pit crew helping me through some challenging days. 💜

One thing this experience reinforced is that we still have a long way to go when it comes to disability competency in healthcare. So instead of just being frustrated, I decided to do something about it like always haha.

I just submitted a proposal to present at the American College of Emergency Physicians (ACEP) Scientific Assembly in Boston, October 25–28, 2027:

Title: Wheelchair Barbie Goes to the Emergency Room: Autonomic Dysreflexia, Disability Competency, and the Cost of Not Listening

If selected, I’ll share my lived experience as a woman with a spinal cord injury and use autonomic dysreflexia as a case study to explore what happens when patients become the educators, why listening to disabled patients can be a matter of life and death, and how emergency medicine can better serve our community.

For the last decade, I’ve been helping future physicians understand disability through Wheelchair Barbie Goes to the Gynecologist. After my recent ER visit, I started wondering if it’s time for Wheelchair Barbie to make a pit stop in the Emergency Room.

💥 No patient should have to educate the medical team during a medical emergency.

💥 Disability competency is a patient safety issue.

When I see a problem, I have to try to fix it.
Crossing my fingers this proposal gets accepted. I’ll be submitting to more ER conferences. This conversation is too important not to have.

Rock ON, friends. 💜🤘🏁

Welp. Landed in the ER last night with another episode of Autonomic Dysreflexia while recovering from my breast reduction surgery.

I’ve written about AD before, but it never gets less scary. For those of us with spinal cord injuries, it’s like the dashboard suddenly lights up and every warning alarm starts going off at once.

🏁 Heart rate climbing.
🏁 Blood pressure skyrocketing.
🏁 Sweating through your clothes.
🏁 Headache.
🏁 Nausea.
🏁 Goosebumps.
🏁 That unmistakable feeling that something is very, very wrong.

The scary part? You never know how severe an AD episode is going to become. Left untreated, it can lead to stroke, seizures, cardiac complications, and even death. Studies have found a 300–400% increased risk of stroke among people with AD, and severe cases have been associated with significant mortality.

The exhausting part isn’t just the symptoms. It’s arriving at the ER and realizing you’re about to teach the lesson.

After 27 years of paralysis, I know my body. Yet I still find myself explaining autonomic dysreflexia to healthcare providers who have never seen it before. Many disabled people learn a strange survival skill: You stop speaking like the expert.
You soften your voice. You make yourself smaller.
You try to sound scared enough, sick enough, vulnerable enough to convince people to give you the care you already know you need. Speaking clearly and confidently doesn’t get you anywhere with them, never worked for me.

Most people don’t know but I recently took a year away from my PhD at UNM to focus on my health, but nights like this remind me exactly why disability competency education matters. If healthcare professionals aren’t taught about spinal cord injury, paralysis, and disability, patients become the educators during medical emergencies.

Honestly, I’m starting to think I need to put together a presentation for ER physicians, nurses, EMTs, and first responders.

Thankfully, I’m home and back to recovering from my surgery. And a special shoutout to my badass nurse AJ. Nurses really are the MVPs. And thank you to my brother in law for taking me home! My pit-crew rocks!

Rock ON! 💜🤘🏁

This July, I’m excited to represent New Mexico at the 2026 Annual Conference on Independent Living presented by the National Council on Independent Living

This conference is an incredible opportunity to connect with advocates, leaders, and changemakers from across the country who are committed to advancing independent living and disability rights. I’m looking forward to learning from inspiring speakers including the incredible disability activist, Mia Ives-Rublee , exchanging ideas, building new connections, and bringing back valuable insights that can help strengthen our communities.

The theme of NCIL’s 2026 Annual Conference on Independent Living is Protect. Persist. Prosper.

I can’t wait to be part of the conversations, celebrate our successes, and explore new ways to promote independence, inclusion, and accessibility for all.

Let’s GO! Rock ON! 💜🤘🏁

For more information about the conference visit: https://ncil.org/2026-conference/

See you in July! 💜🏁🤘

💜 June is Transverse Myelitis Awareness Month.💜

At 12 years old, I went from playing basketball to becoming paralyzed in less than 20 minutes. The diagnosis was Transverse Myelitis (TM), a rare neuroimmune disorder that changed my life forever.

When I shared my story with U.S. News & World Report in 2015 (link in BIO), I wrote that my race wasn’t over. Eleven years later, and 27 years after my diagnosis, I can tell you that’s still true. The dark days continue to show me that the light ones are brighter and trust me, I’ve seen some dark days.

TM took away the feeling and function of my legs, but it gave me a complex identity and purpose. It led me to advocacy, public health, adaptive sports, scuba diving, disability rights, fighting for reproductive justice and a community that taught me what resilience really looks like. You guys are the best!

This month, I celebrate everyone living with Transverse Myelitis and other rare neuroimmune conditions. Whether you’re newly diagnosed, a longtime survivor, a caregiver, clinician, researcher, or family member…YOU ARE part of this story. Remember, To Get Through This Life, We All Need a Pit-Crew! 💜🤘🏁

If you or someone you love has been affected by TM, know that you are not alone. Resources, research, support groups, and a powerful community exist to help navigate the journey.

Transverse Myelitis Resources:

💜 The Johns Hopkins Myelitis and Myelopathy Center

💜 The Transverse Myelitis Program at UT Southwestern

💜 Siegel Rare Neuroimmune Association (SRNA) 

This Transverse Myelitis Awareness Month:

💜 Connect with others living with TM and related disorders.

💜 Share your story.

💜 Help us raise awareness for better treatments, research, and accessibility

Rare doesn’t mean insignificant.
The race isn’t over. For me. For our community. For the next generation. Rock ON 💜🏁🤘

Hey everyone… last month I launched my Substack and my first article “Wheelchair Barbie Gets a Mammogram” 🤘🏁💖

This is about disability, medical trauma, accessibility, aging, early detection, and why disabled women deserve to be seen.

If you’ve ever felt unseen by medicine, this one’s for you.

Disabled women age.
Disabled women screen.
Disabled women matter.

Check it out, share it, and help spread the word. Rock ON🤘🏁💖

27 years ago, life threw a red flag I never saw coming.

At 12 years old, life was just beginning but I indeed thought the race was over. All the hard work learning how to live with a paralyzed body redirected me to a different track — one that would take me underwater, speaking on stages to OBGYN Departments, and into the lives of people who needed someone to prove survival could still be beautiful.

These 27 years have taught me how to navigate and feel this life differently — through the red flags society waves at disabled bodies as well as the green flags that remind us the race is still worth driving.

This isn’t just my story.

This is about science, medicine, politics, disability justice, women’s health, and the body politic — because disability is not just medical…it is deeply social, cultural, and political.

My body is not just medical. It is political.

The body politic movement teaches us that how society treats disabled bodies reflects how society values human dignity. Accessibility, inclusive research, equitable healthcare, and representation are not luxuries — they are markers of justice.

Women with disabilities are still vastly underrepresented in research, reproductive healthcare design, and preventative screening access. Many of us face physical barriers, provider bias, and assumptions about our sexuality, fertility, and autonomy.

This is why I advocate. Because disabled women deserve healthcare systems that see us, respect us, and design with us — not around us.

Since becoming paralyzed at 12 years old, my life’s race has been about expanding quality of life, adaptive scuba diving, disability education, and shifting how medicine and society understand the disabled body.

Transverse Myelitis itself is rare, unpredictable, and often misunderstood. It is a neurological condition caused by inflammation of the spinal cord that interrupts communication between the brain and body. It can cause paralysis, sensory loss, chronic pain, bladder and bowel dysfunction, and life-long medical complications.

No race car driver crosses the finish line alone. And I could not have driven 27 years down this unpredictable track without my pit crew. My family especially my amazing mom, friends, caregivers, medical professionals, the dive community, disability advocates, and mentors who refuel me when the tank is empty, change tires when life blows one out, and help rebuild my race car after every yellow caution and red flag.

You are the reason I am still in this race & you know who you are. Thank you from the bottom of my heart!

27 years ago, I thought my story was ending. Instead, I was handed a different track — one that took me deeper into humanity, into the ocean, into advocacy, into community, and into purpose.

The red flags taught me what must change.

The green flags remind me why I keep racing forward.

The race continues. Rock ON! 💖🤘🏁

Transverse Myelitis and Paralysis Resources:

Johns Hopkins Myelitis and Myelopathy Center: https://www.hopkinsmedicine.org/health/conditions-and-diseases/transverse-myelitis

UT Southwestern Medical: https://utswmed.org/conditions-treatments/transverse-myelitis/

Siegel Rare Neuroimmune Association: https://wearesrna.org

The Christopher and Dana Reeve Foundation: https://www.christopherreeve.org

American Spinal Injury Association: https://asia-spinalinjury.org

🏁 TO THE DISABILITY COMMUNITY OF NEW MEXICO—START YOUR ENGINES 🏁

Every movement needs a pit crew. Every race needs drivers willing to take the wheel. And every fight for justice ends with the same goal: that checkered flag where our rights, stories, and lived experiences are finally seen and heard.

We are a vast, powerful disability community—disabled people, caregivers, families, allies—and we are strongest when we line up on the same track. Our bodies, minds, and experiences may be different, but our destination is shared: dignity, access, independence, and equity.

I’m fired up to join members of the New Mexico Disability Coalition, caregivers, families, and fellow advocates this Saturday for the Pre-Legislative Forum, as we prepare for Disability Rights Awareness Day on February 11th at the New Mexico State Capitol.

🏁 This is where the pit crew comes together.
🏁 This is where your voice matters.
🏁 This is where we race toward real change.

Start 2026 by using your voice. Bring your story. Bring your lived experience. Bring your fire. Advocacy doesn’t require perfection—only participation. When we show up, we change policies, shift narratives, and remind lawmakers that disability rights are human rights.

✨ EVENT DETAILS
-Pre-Legislative Forum: Saturday, January 10, 2026: CNM WORKForce Training Center at 5600 Eagle Rock Ave NE, Albuquerque, NM 87113.

-Disability Rights Awareness Day: February 11, 2026: New Mexico State Capitol Building

Whether you’re a first-time advocate or a seasoned activist, there’s room for you on this track. We all need a pit crew—and New Mexico, this one is ours.

Let’s roll. Let’s race. Let’s cross that checkered flag together.

Check out the link below and See ya there!
💖🤘🏁

https://givebutter.com/Y2leKt

My ribs are bruised, maybe a hairline fracture. After my “Wheelchair Barbie Goes to the Gynecologist” presentation on Thursday, roared in at 2:30 am. Heart rate through the roof. Chills. Vomiting. Headache. My pain had hit the red flag. I ended up in the hospital for pain management. Living with paralysis means you’re always racing on data your body sometimes hides. Sometimes it’s internal. Other times, it’s the race car (your wheelchair), a cushion off, a wheel misaligned, a pressure point you can’t always feel.

So to my single wheelchair peeps flying solo, especially those with or related autoimmune disorders, this is a tip to have your “Pit Crew” check your race car. Whoever’s in your corner, have them sit in your chair once in awhile. They’ll feel things you can’t, even when you’ve done your own inspection. In racing, performance depends on teamwork, technology, driver input, & specialized roles. Engineers & mechanics study the telemetry: lap times, braking, tire wear, fuel usage. The driver gives crucial in-car feedback. Together, they find what needs fixing before it fails. Living with paralysis is the same kind of engineering. Our telemetry comes from pain spikes, spasms, bowel/bladder issues, sleep disturbances, skin breakdown, etc. Our family, friends, caregivers and doctors are the race engineers who interpret our signals when we can’t. But let’s be real, it’s exhausting to constantly monitor, manage and decode our own systems. To keep racing through chronic pain, medical complications in an ableist world that was never built for us. To stay strong, brave, and inspiring not just for ourselves, but for everyone watching. Still, that mission to educate, to represent, to make a difference…is my race fuel! The engine oil, transmission fluid and brake fluid that keeps me going when the body wants to stall.

This driver is extremely grateful for her “Pit Crew”. I know not everyone has one. I don’t always take my own advice to slow down. My DNA runs through my veins like the mountain winds at Pikes Peak or in the heartbeat of the Indianapolis Motor Speedway. I was built to go full throttle, not idle.