Josh LaBarge is a personal trainer, the owner of Conquer Fitness, and an epilepsy advocate. Throughout his life, he has struggled with a genetic form of epilepsy. Josh uses his own story and fitness journey to empower others to “conquer” their own fitness and wellness goals. Josh recently sat down with our Different & Able President and Founder, Alexandra Nicklas to chronicle his life with epilepsy.

In the interview, Josh discusses the challenges of his medication regimen, the injuries he has sustained during seizure episodes, the support of his family and friends, his life-long mission to stay active, and succeed in seizure self-management. Josh’s charismatic personality and honest manner is evident through the course of the video. His attitude towards obtaining and sustaining a healthy lifestyle is paramount for him and his clients.

Like most, Josh looked for structure and wellness in his college years. He knew he had to curb his unhealthy routines; and he succeeded to forge a future, that has enabled his inner and outer strength. His “lick your wounds and move on” mentality, has helped him earn role model status and be seizure free for three years.

Mindy Scheier is a mom of three, an entrepreneur, and an authority on accessible fashion. She is also the founder and CEO of the Runway of Dreams Foundation, which she started in 2014 with the help of her son Oliver, who has a rare form of muscular dystrophy. Oliver wanted to wear jeans to school like his peers; so Mindy took on the request and modified a pair of jeans for her son to wear the next day. Being in the fashion industry and inspired by Oliver's new jeans, Mindy began her journey designing adaptive clothing that enthuses people with disabilities.

As a renowned leader in adaptive clothing and advocate for inclusion, Mindy collaborates with mainstream brands to make modifications for their present and future apparel lines. These adaptive pieces are wearer friendly, stylish, and encourage conviction, autonomy, and self-expression for people with difference. Her design work has also earned her the award for Ark Catalyst Marketing Influencer of the Year; Mindy also kicked off New York Fashion Week in the fall of 2019 with a runway show, featuring models of all abilities.

Recently, Mindy chronicled her fashion vision and the Runaway of Dreams Foundation mission, of “working toward a future of inclusion, acceptance and opportunity in the fashion industry for people with disabilities,” with our Different & Able President and Founder, Alexandra Nicklas. Mindy’s design modifications enable people with difference, by giving them the power to choose their own fashion. With a flaunt forward fashion mentality and her contagious exuberance, Mindy’s philosophy on accessible fashion shines, “Where there is a will, there is a runway.”

We recently had the good fortune to interview Jim LeBrecht and Nicole Newnham, co-directors of the celebrated documentary Crip Camp, which tells the story of how a camp for children with disabilities became a training ground for a whole generation of disability rights activists, including Judy Heumann. Enjoy! 

Many people make it a point to not define someone by their medical condition or disorder that they endure. As much as I agree with that standard, there are so many parts of my life that I look back and think, “If I did not have this condition, would I be a different person?” The truth is, I would not be who I am today if I did not have epilepsy.

I was formally diagnosed at 11 years-old after having countless absence seizures and tonic-clonic seizures. Throughout most of my adolescence and teenage years, my family and I held on to the hope that maybe I would outgrow this condition like some children. Taking my medication twice a day seemed to do the trick and throughout my teenage years, the medicine worked properly.

Unfortunately, I began having seizures again my first year of college; I had multiple tonic-clonic seizures sporadically that year. The only people who knew were the people closest to me. I felt very isolated, delayed and powerless. All my friends were packing getting ready to go away to school and there I was, at home, trying a new medication hoping that it was successful. I realized then that my life was altered. The path that I had planned had taken a complete left turn. I despised having epilepsy. I was forced to acknowledge it and I hated that the most. I just saw myself as a burden to the people around me, and it made me embarrassed. Despite the lack of control in my life, that year surprisingly ended up being one of my most memorable. I attended a community college where I had no seizures during school hours, which was such a relief.

After I went six months seizure-free, I decided to try out for the 2008 Philadelphia Eagles cheerleading squad. I never thought I would actually make the team, but when I did, it truly felt like I was being given a break from all that had been happening in the past year. I felt that my life was finally back where I wanted it, but I couldn’t shake the feeling of failure. There was so much of that year to be thankful for and I was too busy focusing on how to act like everything was “normal." The positives seem to slip on by.

I went five years with no seizures -- it was the longest I have ever gone without having any. I reached a point where I was able to disconnect myself from the condition. I still took my medicine twice daily, but I began to get careless. I had a terrible diet, awful sleep schedule and took my medication at different times during the day. I know that there had to have been moments where I forgot to take it.

Finally, my body and brain had had enough of my careless ways. I ended up having eight tonic clonic seizures in the past two years, along with a few atypical absence seizures. I would go months where everything was fine and then all of a sudden, I'd have another seizure. I was forced to acknowledge it, again. But this time, I welcomed it. Instead of disassociating myself, I had learned to accept this condition, who I was and who I wanted to be. I didn’t realize how it truly was controlling my life. By me trying to ignore it, I had lost sight of taking care of myself.

I am so thankful for the supportive people in my life. I would be nowhere without my family. They have been there for me since the start of it all and words cannot express the level of gratitude I have for them. I am a firm believer that whatever someone’s situation may be, good or bad, it is going to shape you into who you are as an individual. I would be lying if I said that I still don’t fear certain risks or outcomes that I know exist with having epilepsy, but I think that’s what opens my eyes to the beauty of my life.

These past two years have been my most trying experiences with epilepsy. However, once I recognized the reality of my situation, everything seemed to fall into place. I am happier, accepting and at peace. I found who I was and discovered who I want to be. There are definitely nights where I cry and pray that eventually the right treatment will come along. After recent seizures that have occurred this year, my level of appreciation and life itself has gone up tremendously.

I want others to understand epilepsy and truly understand the facts about it. There is so much we can learn from this condition that I know it could open many doors into learning more about other mental differences. For individuals who live with epilepsy, seizure disorder or have had a seizure in their lifetime, understand that just because you lose control of your brain and body, does not mean your condition should control your spirits. The strength that one possesses after a life-altering experience such as epilepsy determines more of your character than you know. The struggles that you withstand today are only the beautiful beginnings of the life you encounter tomorrow.

Crip Camp: A Disability Revolution is one of the most important documentaries about disability ever made and one of the most human. Directed by Jim LeBrecht and Nicole Newnham, it tells the story of Camp Jened, a summer camp in Upstate New York that gave young people with disabilities something most of them had never experienced before: a space where they were fully expected to participate, fully accommodated, and fully themselves. What grew out of that camp changed the United States forever.

What Is Crip Camp About?

Crip Camp follows the story of Camp Jened, a unique-for-its-time summer camp run by young, counter-culture counselors who believed that people with disabilities deserved the same freedoms, experiences, and opportunities as everyone else. For many campers, Jened was their first experience of genuine accessibility, a place where accommodation was the expectation, not the exception.

The first half of the film is told largely through the eyes of co-director Jim LeBrecht, who attended Camp Jened as a teenager. What he found there was a community unlike anything he had encountered, one where campers held democratic votes on everyday decisions, where counselors created accommodations on the spot, and where nobody was left out simply because participation required a little more thought or creativity.

The second half shifts focus to the disability rights movement that grew directly out of Camp Jened's community. Many of the camp's alumni, including the remarkable Judy Heumann, went on to become the leaders of one of America's most important civil rights movements, fighting for federal legal protections for people with disabilities at a time when none existed. No ramp requirements. No anti-discrimination laws. No legal recourse if the world simply would not make room for you.

We won't spoil where that fight led, but the United States would look very different today without the activists who first found each other at Camp Jened.

Why Crip Camp Matters

What makes Crip Camp extraordinary is not just its history, it is how it tells that history. People with disabilities are shown in full dimension: funny, angry, sexual, political, complicated, and deeply human. This is rarer than it should be. Popular culture has a long history of reducing people with disabilities to inspiration props or background characters. Crip Camp refuses that completely.

For anyone who has ever felt unseen, unaccommodated, or underestimated, this film is for you. And for anyone who hasn't, it is an essential window into an experience and a movement that deserves to be understood.

About the Director: Jim LeBrecht

Jim LeBrecht is not just the co-director of Crip Camp, he is one of its subjects. He attended Camp Jened as a teenager and went on to become an accomplished filmmaker and sound designer. His decision to tell this story from the inside gives the film an authenticity and intimacy that is rare in documentary filmmaking. Crip Camp was produced by Barack and Michelle Obama's Higher Ground Productions and premiered at the Sundance Film Festival before being acquired by Netflix.

About the Americans with Disabilities Act

The activism documented in Crip Camp ultimately contributed to one of the most significant pieces of civil rights legislation in American history — the Americans with Disabilities Act (ADA), signed into law in 1990. The ADA prohibits discrimination against people with disabilities in employment, public accommodations, transportation, and government services. It is the legal foundation that makes accessibility a right rather than a favor.

To learn more about the ADA and what it means for people living with disabilities today, visit our dedicated ADA resource page.

Key Takeaways from Crip Camp

• Accessibility is not a special accommodation, it is a basic expectation that benefits everyone.
• The disability rights movement was built by ordinary people who refused to accept that their lives were worth less than anyone else's.
• Representation matters deeply. Seeing people with disabilities portrayed as full, complex human beings changes what we believe is possible.
• Community is where movements begin. Camp Jened was just a summer camp, until it wasn't.
• The fight for disability rights is not finished. Understanding its history is the first step toward continuing it.

Crip Camp is not a film about what disability takes away, it is a film about what people with disabilities have given the world when the world finally got out of their way.

We know that many of our community members are feeling a little bit pent up lately. It's really hard to quarantine, especially as the weather grows nicer. So today we're offering Kathryn Jenkins reading her wonderful book The Inclusion Alphabet for you and your families. This is a book for all ages and abilities, and as Kathryn explains in this video, there are different ways to read it depending on your wishes and needs. 

Follow @inclusion_project on Instagram to learn more about Kathryn's work, and stay tuned for more collaborations between Different & Able and the Inclusion Project! 

Editor's Note: We are working on adding closed captioning to all our videos, and hope to accomplish this in the next few weeks. If you would like a transcript of this video before then, please contact espampinato@differentandable.org.