The Cody Unser First Step Foundation
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Dedicated to raising awareness of Transverse Myelitis and advocating for people with disabilities.
08/01/2026
As Disability Pride Month comes to a close, I can’t believe everything this month held! ♿️💜♿️
It began with this photoshoot…thanks again Sis Shannon Lee Unser for the encouragement and the man behind the camera, Alan Osterholtz for the opportunity to get wet!
This was a celebration of finally embracing the body I once fought so hard against and to explain to the world. A body I used to criticize. A body society often tells us isn’t beautiful enough.
Then came one of the biggest challenges I’ve taken on in a long time: traveling solo to Washington, D.C. and Baltimore. I was nervous. I was scared. But I did it. I am so proud of myself!
I advocated beside disability leaders from across the country. I learned, laughed, danced, made new friends, and proved to myself that I am capable of more than fear would have me believe.
To every woman living with a disability...do yourself a favor.
Do a photoshoot. Somehow. Some way.
Not because you need validation from anyone else, but because you deserve to see yourself through a different lens. One that captures your resilience, your confidence, your beauty, and your story.
Your body is not something to hide. It is the body that has carried you through every challenge you’ve faced.
I used to reject mine.
Today, I’m proud of her. She’s been through fire!
Happy Disability Pride Month. Keep taking up space, keep pushing boundaries, and never let anyone convince you that your body is anything less than extraordinary. Full Stop!
Stay Sexy!
Live to the fullest!
Rock ON 🤘♿💜🏁🔥🧜♀️💋
Part 2: Baltimore. Johns Hopkins. Myelitis & Myelopathy Day 2026.
What an incredible way to end this unforgettable trip.
It was so good to be back with my myelitis family…patients, researchers, physicians, clinicians, and advocates all working together to improve the lives of those of us living with neuroimmunological disorders like MS, MOGAD, NMOSD, and the condition that changed my life at 12 years old in 1999 Transverse Myelitis (TM).
TM is a rare autoimmune neurological disorder where inflammation damages the spinal cord, disrupting communication between the brain and body. It can cause paralysis, changes in sensation, pain, bowel and bladder dysfunction, and many other secondary conditions that impact quality of life.
It was wonderful seeing my incredible physiatrist, Dr. Cristina Sadowsky, from the International Center for Spinal Cord Injury Kennedy Krieger Institute. She has been such an important part of my journey. If you or someone you love is living with paralysis, I can't recommend this program enough:
https://www.kennedykrieger.org/patient-care/centers-and-programs/international-center-for-spinal-cord-injury
It was also great catching up with Pines Cabahug, who I've worked with through the American Spinal Injury Association (ASIA):https://asia-spinalinjury.org
It was also amazing to see Dr. Stephanie Van, one of my pain physicians and an absolute badass when it comes to helping people live better with chronic pain…one of my biggest enemies!
A huge thank you to:
Dr. Carlos Pardo, the Director of the Myelitis and Myelopathy Center at Johns Hopkins: https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/myelitis-myelopathy
Dr. Cristina Sadowsky, and Dr. GG deFiebre, Executive Director of the Siegel Rare Neuroimmune Association for hosting such an outstanding event. It was great seeing you ALL! If you or someone you know is affected by a rare neuroimmune disorder, SRNA is an incredible resource.
The day was packed with updates on myelitis and myelopathy research, spinal cord injury, pain management, bowel, bladder and sexual health, mental health, neuromuscular retraining, stem cell therapies, and where science is taking us next.
This trip challenged me in every way imaginable…traveling solo, pushing through chronic pain, long days, and stepping outside my comfort zone. But it rewarded me even more.
My new motto: Do It SCARED. But Just Do IT.
Thank you to every single person who followed along, checked in on me, and sent messages of encouragement. I truly read them all, and your support became my fuel. You helped me push a little farther every single day.
Science matters.
Community matters.
The race isn't over.
Rock n' Roll 💜🤘🏁♿️
Today marks the 36th Anniversary of the Americans with Disabilities Act ♿️🤘♿️
I want to honor one of my greatest heroes and previous mentors, Judy Heumann the Mother of the Disability Rights Movement. She was a badass! Fierce. Relentless. Unafraid to demand what disabled people had always deserved: equal rights.
Judy once said, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives.” She didn’t just change disability history, she changed America.
I’m so excited that “Being Heumann” premieres on Apple TV on November 13! I can’t wait for this!!! I hope everyone watches it, because celebrating Judy’s story is celebrating all of us and every disability activist who fought to get us where we are today.
But our work isn’t over!!! Our rights are still under attack, and progress is never guaranteed! The ADA wasn’t the finish line, it was the starting line! How about some real enforcement of it?!?!
We owe it to Judy and those who came before us to keep fighting, keep showing up, and never stop demanding full inclusion.
Thank you, Judy from the bottom of my heart. We carry your legacy forward. Happy 36th Anniversary, ADA. Rock ON 💜♿🏁🤘🔥
Part 1…Buckle Up Everyone 💜🤘♿️🔥🏁
The National Council on Independent Living Conference was intense, overwhelming, soul-building... and exactly where I needed to be!!!
I spent the week with some of the boldest disability leaders in this country who refuse to accept a world where disabled people are hidden away in institutions instead of living full, messy, beautiful lives in our communities like everyone else.
We will NOT go back!
I met THE Theo Braddy! He has been a dynamite advocate for our community for over 40 years! He is the Executive Director of NCIL and wrote the book From Shack to White House, total badass and hero of mine!
One of the most powerful workshops focused on emergency management and disability preparedness. I also sit on the board of the nonprofit “MyHealthID Global” which focuses on emergency preparedness and disaster response, so this lit a fire in me. In New Mexico, we deal with fires and floods so this was an important workshop to learn from. Disabled people deserve to survive disasters, emergencies, and crises, not be forgotten because no one planned for us.
Accessibility isn’t charity. It’s infrastructure.
I learned. I connected. I plotted change. And yes... I danced my wheelchair ass off with amazing people! Ladies, we rocked it! 💜🤘💜
Shoutout again to Hyatt for proving inclusion is in the details. That lowered bar counter? Chef’s kiss. Nothing says “welcome” like designing a space where I don’t have to ask for permission to belong.
Then it was full throttle onto Amtrak and off to Baltimore for Myelitis Day at Johns Hopkins... but that’s Part 2…Stay Tuned!
To everyone who commented, cheered me on, and believed in me throughout this trip…THANK YOU. I read every single message. You became part of my pit crew. I wore your encouragement like armor! HUGS to you all! 💜
I missed my mom. I know she’d be telling me to quit overthinking and just hit the gas haha!
Rock ‘n’ Roll.
Happy Disability Pride Month.
Here’s your reminder:
Don’t shrink.
Don’t apologize.
Don’t wait for permission.
Expand. Take up space. Make some damn noise!
Haha…didn’t know there was an Albuquerque, NE
Happy PADI Women’s Dive Day 💜🧜♀️🌊🤿🪼
*More from my wet photoshoot with Alan Osterholtz
Every July, I celebrate 2 things: Disability Pride Month and PADI Women’s Dive Day. This collection of photos is dedicated to all my sea sisters around the world who have ever taken a giant stride into the unknown and found a piece of herself beneath the surface.
To the divers exploring vibrant reefs...
To the scientists advancing marine research...
To the conservationists protecting our blue planet...
To the underwater photographers capturing wonder...
To the instructors inspiring the next generation...
To every mermaid, every jellyfish, every ocean soul who simply feels at home in the sea...
Thank you for reminding the world that courage and curiosity can coexist.
As a PADI AmbassaDiver and a proud member of the Women Divers Hall of Fame, I’ve witnessed firsthand how the ocean transforms us. It doesn’t care what your body looks like, where you come from, or what challenges you face. Underwater, we are all humbled by something greater than ourselves.
The ocean has been my freedom, my teacher, my sanctuary, and my reminder that life is meant to be explored.
So keep diving.
Keep protecting our oceans.
Keep asking questions.
Keep chasing adventure.
Keep inspiring one another.
Water is life. And together, let’s continue…
“Changing the World, One Dive at a Time”
Happy PADI Women’s Dive Day
💜🧜♀️🪼🌊🐙🤿♿️
www.padi.com
www.wdhof.org
If this image feels absurd...you’re beginning to understand what air travel is like for wheelchair users.
We would never just toss your legs into the cargo hold.
We would never tell you, “Sorry, your legs were damaged.”
Yet every day, airlines treat wheelchairs this way.
My wheelchair isn’t luggage.
It’s my legs.
My independence.
My freedom.
This Saturday, I’ll be traveling solo for the first time in a long time, to Washington, D.C. for the National Council on Independent Living Conference and then to Baltimore for Johns Hopkins Myelitis Day.
I’m excited but the second I transfer to the aisle chair leaving my wheelchair in the hands of strangers to be taken into the belly of the plane, fear and a question entangle my insides…
Will my wheelchair make it to my destination and in one piece at that?
For us wheelchair users, that’s not a hypothetical. It’s reality. My wheelchair has been lost and damaged a few times and it isn’t cheap!
What makes this even harder is that we already know how to do better. I had the privilege of helping draft legislative language with my state’s congressional delegation Senator Martin Heinrich and Senator Tammy Duckworth’s office on the Air Carrier Access Amendments Act, legislation designed to strengthen protections for wheelchair users in air travel.
It’s been 3 years!
Congress…Accessibility can’t stay parked in committee. It’s time to move this bill forward.
My wheelchair isn’t baggage.
It’s part of my body. Rock ON!
♿️✈️🤘💜🏁
07/14/2026
Today is the deadline to submit a public comment on the proposed federal rule governing Federal Financial Assistance by the Office of Management and Budget.
I just wrote mine!
If you believe scientific merit, disability expertise, and evidence based evaluation should remain central to research and innovation, make your voice heard before 9:59 p.m. MT / 11:59 p.m. ET. I know it’s quick!!!
This photo represents something I deeply believe in: science, curiosity, and the power of nonprofit innovation.
Years ago, my foundation partnered with my doctors who worked at Johns Hopkins at the time and the PVA to study the Neurological and Psychological effects of scuba diving on the paralyzed body.
Dr. Sanjay Gupta came to learn about our study for a news segment because we believed disability innovation deserved to be studied, not simply admired. I was having sensations in my bladder and legs at depth when I went scuba diving that would last for a few minutes above the surface so I insisted to my doctors, “We Must Study This”!
I've spent the last 27 years living with paralysis.
I have lived the science.
I've felt it.
I've studied it.
I've dedicated my life to advancing it.
Let's keep scientific merit, disability expertise, and evidence based evaluation at the heart of research and innovation.
Link for Comment: https://www.regulations.gov/document/OMB-2026-0034-0001
06/29/2026
💜 Thinking about extending my East Coast trip...💜
After spending the week in Washington, DC advocating on Capitol Hill during the NCIL Conference, I'm thinking about heading over to Baltimore for Myelitis & Myelopathy Day at Johns Hopkins.
It’s been awhile since I’ve seen my family! Miss you all! 💜
If you're living with Transverse Myelitis, NMOSD, MOGAD, or another myelopathy or if you're a caregiver or healthcare professional, this looks like a wonderful (and free!) opportunity to learn, connect, and build community.
What to expect:
* 🧠 Leading experts in myelitis and myelopathy
* 🔬 Updates on the latest research and emerging therapies
* 💙 Lived experience panels and interactive Q&A sessions
* 🤝 Networking with others in the community
* 📚 Resource booths from advocacy organizations
Topics include:
* Spinal cord injury and rehabilitation
* MS, MOGAD & NMOSD
* Bowel, bladder & sexual health
* Pain, spasticity & gait
* Bone health & mental health
* Neuromuscular retraining
* Navigating the healthcare system
* Spinal cord stroke & pediatric myelitis
* Stem cell therapies and other emerging treatments
Hosted by Johns Hopkins, Kennedy Krieger and SRNA.
Free. RSVP by July 15th. Register at srna.ngo/j9b
After 27 years living with transverse myelitis, I'm reminded that there's always more to learn.
Who all is going? Rock ON 🤘💜🏁
06/26/2026
🏁 We Crossed the FINISH line. We are Published! 🏁
Today, our iGRACE study, “Comparative Perspectives: A Cross-Sectional Survey of Key Stakeholders Regarding OB/GYN Accessibility for Women with Disabilities,” was officially published in Frontiers in Public Health.
Looking at this publication, I can't help but think about where this journey began.
About 3 years ago, my friend and colleague, Ashley Hilton, attended one of my "Wheelchair Barbie Goes to the Gynecologist" Grand Rounds lectures. After hearing firsthand about the barriers women with disabilities face in accessing reproductive healthcare, she reached out with a simple but powerful idea:
“Let’s study this." That conversation became a partnership.
Together, we built a survey, assembled an incredible interdisciplinary team, recruited participants from across the country, collected the data, revised the manuscript (more than once!), and today, our work is published!!!
If you recognize the iGRACE recruitment flyer in this post...THANK YOU.
You helped make this happen.
Your lived experience is now part of the scientific literature and will help educate the OB/GYN community about improving healthcare for women with disabilities.
Women have historically been underrepresented in medical research. Women with disabilities have been even more overlooked. And if you are a woman of color with a disability, your voice has too often been left out entirely. We hope this research helps change that.
A heartfelt thank you to my amazing co-authors: Ashley Hilton, Rishika Kartik, Ashira Greenberg, Amy Ewing, Murphy Kaphing, Lizbeth Grado, Jeanelle Sheeder, and Marsha Guess. It has been an honor to work alongside each of you. 💜
We're excited to share these findings with medical schools, residency programs, healthcare organizations, and conferences committed to improving reproductive healthcare for women with disabilities. If your organization is interested, we'd love to connect.
As Christopher Reeve, Marilyn Hamilton, and Judy Heumann taught me: One voice has power. Harness it.
This is for every woman with a disability who has ever felt unseen.
Your lived experience has value. Rock ON 🤘💜🏁
Link to Article: https://doi.org/10.3389/fpubh.2026.1812493
06/22/2026
An Open Letter About Olmstead
I became paralyzed in 1999, the same year the Supreme Court decided Olmstead v. L.C.
For my entire adult life, Olmstead has represented a promise: that disabled people belong in our communities, not institutions.
On June 18, 2026 just days before the 27th anniversary of Olmstead, the Department of Justice's Office of Legal Counsel released a memo that has sent shockwaves through the disability community.
Today, I am outraged and I am deeply disturbed by an interpretation that seeks to undermine decades of disability rights protections and legal precedent.
To some, this may sound like a debate over legal interpretation. To me, and to millions of disabled Americans, it feels like a direct challenge to our autonomy, dignity, and freedom.
Olmstead wasn't about special treatment. It was about recognizing that disabled people have the right to live, work, learn, love, and participate in our communities alongside everyone else.
We know what came before. We know the history of Willowbrook and countless other institutions where disabled people were hidden away, neglected, abused, and stripped of their humanity.
That history is not ancient history. Many people who survived it are still alive today.
As America prepares to celebrate 250 years of independence, I find it absolutely heartbreaking that disabled Americans are once again being forced to defend our right to live in our own communities.
Disability does not discriminate. It does not care who you voted for, where you live, how much money you make, or what you believe. Any one of us can become disabled at any moment.
What kind of country do we want to be?
One that invests in inclusion, independence, and community?
Or one that turns its back on decades of progress and tells disabled people that our place is somewhere out of sight?
I became paralyzed the year Olmstead was decided.
I never imagined I would spend 2026 defending the promise it made.
To our federal leaders: protect Olmstead.
To our state leaders: be prepared to defend it.
I am calling on elected officials at every level to stand with the disability community and reject any effort to weaken the right of disabled Americans to live in our homes, our neighborhoods, and our communities.
The right to live in our communities should not depend on a ZIP code.
It is a civil right.
We know our history.
We will not go back.
— Cody Unser
Founder, The Cody Unser First Step Foundation
Board Member, New Mexico Statewide Independent Living Council
The United States Department of Justice
Senator Martin Heinrich
Senator Ben Ray Luján
Rep. Melanie Stansbury
Rep. Gabe Vasquez
New Mexico Division Voc Rehab
Rep. Teresa Leger Fernández
NM Governor's Commission on Disability
Governor Michelle Lujan Grisham
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