Nico Meyering is Blazing a Trail of His Own
Image of Nico Meyering wearing a grey t-shirt that has the chemical make up for caffeine and yellow hoodie. He is smiling and wearing dark-lens glasses. Background is a brick wall. Courtesy of Nico
By Arielle Dance, Writer at Diversability
Nico Meyering is a disabled advocate living in Philadelphia, where he chairs the Philadelphia Mayor's Commission for People with Disabilities. Roughly 17% of Philadelphia's population is disabled and the Commission is leading work in this space. Nico and his team have successfully advocated for over $200 million in public transit funding, trained over 16,000 city employees on sensory disability inclusion, installed over 1,000 inclusive wayfinding and navigational signs, and won a public vote to make the Office for People with Disabilities a permanent part of city government.
Nico is no stranger to the needs of disabled people. He has lived with the rare disease Congenital Central Hypoventilation Syndrome (CCHS), since birth. With only about 2000 diagnosed cases of CCHS, there is a significant amount of research that is still needed. But Nico recognizes that CCHS patients are now living fuller lives with families, careers, and accomplishments. As one of the oldest surviving CCHS generations, there is limited knowledge about the futures of these patients but they are forging a path and learning from those before them. Nico takes time each day to remember and honor all the CCHS friends that the community has lost over the years and allows their memory to ignite his passion for advocacy.
Nico admires the support of his parents and doctors who sprung into action to get a diagnosis and provide treatment in the late 1980s. “I can't imagine how my parents must have felt as their new baby went into respiratory arrest and got taken away by doctors for testing and an emergency tracheotomy.” His mother was his biggest advocate when he was growing up with CCHS – writing to doctors, medical journals, and even taking out newspaper ads to find other families dealing with CCHS. Nico’s heart for advocacy stems from the advocacy of his mother all those years ago. Nico says, “I honor my mother’s disability activism by calling myself a second-generation disability activist. She believed then what I believe now: community support and peer support helps connect one another.” With this motto, Nico has become a strong advocate and mentor in the disabled community.
Throughout his years advocating for disabilities, Nico has learned to trust himself and his skills. “Managing a disability is a full time job, but managing a rare disability is like two full time jobs!” He has become a strong self-advocate as well as an advocate for those with CCHS, rare disabilities, and disabilities overall. He continues to seek equity and equality for every disabled person. He aims to address challenges of disabled people from financial hardship to making his city more adaptive and accessible. He promises to never give up.
Acknowledgement: Thank you to Nico Meyering, a member of the Diversability Leadership Collective, for sharing your experiences with us.