When facing any type of challenge in life, there are two paths presented before you- you can let it defeat you, or you can find purpose within the hardship. For John Munnis Jr., the latter was the obvious choice, but it hasn’t always been an easy road to get there. As a young child growing up in Philadelphia, John often felt isolated due to not having connections to people with spina bifida and hydrocephalus. What he didn’t know at the time was this feeling of loneliness and being misunderstood within his community would later become the catalyst for finding his purpose and passion. Today, life is much different for 55-year-old John. For one, he now lives in Lebanon, Ohio. What’s more, his feeling of isolation has transformed into empowerment.
While John enjoys his job at Kroger, he one day realized he wanted to do more with his life and really began thinking about advocacy work and getting connected to people with spina bifida. He had heard of the Spina Bifida Coalition of Cincinnati and in 2002, at 38 years old, a new world was opened to him through this organization. Describing the relationships he’s made through SBCC as “life changing”, John jumped right in to making connections and even joining the Board of Directors.
In 2008, John was invited to a Presidential Forum on Disabilities in Columbus, Ohio where the host had a son with spina bifida. As he listened to her speak and met others through the forum who were involved in advocacy, a spark of passion was ignited. As these new connections began inviting him to additional events and programs, John began to realize the difference he could make.
Describing his main goal for his advocacy work as “ending the stigma of disabilities,” John, who is challenged by the every day consequences of having a disability, realized the effect his voice could have. Jane Gerhardt, Policy Specialist at the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program and University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD) reminds us “The self-advocate is in the very best position to educate us about their lived experience. That’s the most well-informed, impactful, and passionate voice out there. The medical specialists, policy wonks and concerned citizens all have a place in the disability discussions but the self-advocate knows and lives the story the rest of us need to hear and understand. John has the life story, the deep understanding of policy, and a unique ability to genuinely connect with people as he shares his concerns.“
To date, John has attended a plethora of events and seminars, where he has had the opportunity to meet with legislators to address key issues such as inclusion for people with disabilities in the workplace and society in general and universal design to make things accessible for everyone. Furthermore, he continues to educate others about visitability and the minimal accessibility standard, which promotes making the home accessible by having a zero-step entry, accessible half bathroom on the first floor, and an accessible hallway to the main room. Locally, he has met with former Cincinnati Councilman Kevin Flynn to push for the Visibility Ordinance in Cincinnati and continues to report back to the Spina Bifida Coalition of Cincinnati on important happenings here in our community and nationally.
As he has gotten more involved, John has seen the impact of teamwork and the strength in numbers. He maintains, “It takes a team, not just one person,” and strongly promotes cross-disability advocacy due to the similar issues they face. Lack of accessibility, inclusion, and transportation are barriers that affect the disability community as a whole, not just those with spina bifida. Of advocating for the disability community, John states, “I enjoy being a part of a bigger effort. It makes me feel better because I’m not just helping myself; I’m helping other people. That’s where I derive my satisfaction, trying to make the world a more accessible and inclusive place for people with disabilities.”
And John is seeing results of his efforts. Through his participation in one advocacy group, an Accessible Taxi Bill was passed. This bill states that taxis do not have to be licensed as ambulettes to transport some wheelchair uses- increasing the supply of accessible taxis.
However, there is still much work to be done and John has no plans of slowing down anytime soon. While he enjoys doing other things in his free time, such as spending time with family and friends, and listening to live, local music, advocacy is where John’s heart is. Just this year, he has gone to a disability policy seminar as well as the Developmental Disability Awareness and Advocacy Day in Columbus. Next year, he plans to revisit those conferences and hopes to attend a Presidential Forum on Disability Issues in Austin, Texas. His passion for advocacy has spilled over into other causes such as the right to life and low-income families, making John a very busy man.
Today, John is a testament to the way your life and the lives of others can change when you choose to find the purpose in your struggle. He is also a reminder that we all have the capability of making those changes. For anyone who has considered advocacy work, John reminds us, “You don’t have to be an expert on every bill. You just need to know your story and know that it is important.”