Philadelphia, PA, USA
Nico Meyering loves to make the world a better place for disabled people. He became a Congenital Central Hypoventilation Syndrome (CCHS) advocate. What helped him to do that was growing up with close support of CCHS Family Network when he saw how much good can come from people coming together and sharing resources.
Congenital Central Hypoventilation Syndrome is a very rare genetic disorder where the body’s automatic impulse to breathe is absent. This means that people with this condition need lifelong mechanical ventilation when they are asleep or sick. Nicko Meyering assures me that people with CCHS can live a full, healthy, and happy life. "It is is not a death sentence! People can graduate college, hold jobs, get married, and have families."
Nico says that his mother began the CCHS Family Network so could see what it takes to run an Institution like that. In college and afterwards he joined many groups and began volunteering. Eventually Nico went to graduate school to learn about running charity organisations. He even spent two years traveling the US and volunteering with different charities full time. He says: "This was a really valuable experience! Volunteering is a great way for people to develop leadership skills and independence skills."
Nico says that CCHS is not stopping him to pursue his dreams of making the world a better place for disabled people and traveling overseas. He says that it just makes it a bit more difficult when it comes to travelling but never impossible. "I think it is very important to show people that a full, healthy, and happy life is possible with CCHS."
"Living with a disability has shown me how much we rely on each other. As a disabled child I relied on my nurses and doctors. As a disabled student I relied on the government to pay me disability income that helped me devote time to studying. As a disabled adult who leads several disability groups I rely on my fellow volunteers. As I always like to say: we tend to the communities that tend to us."
Congenital Central Hypoventilation Syndrome can be diagnosed by a geneticist and a blood test. Only about 2000 people worldwide have CCHS, so it is up to us to raise awareness and funds for medical research. Please visit www.cchsnetwork.org to learn more.
Nico believes that "Disabled people are 99% like non-Disabled people. We pretty much want the same things and have the same goals as the rest of you. We deserve the tools, treatments, medicines, and support to succeed and be fully involved in every part of our communities. Disabled people are experts in their own lives, and Disabled people deserve to have the final say in their own medical care and their own lives."
"Disabled life can be difficult and lonely. You deserve compassion, support, and a community that celebrates your strengths and successes!"
When it comes to accessibility in Pensylvania, USA where Nico lives he says: "I think Philadelphia can do some basic things to make the city more accessible: improve uneven sidewalks and cracked or bumpy roads. Install audio-visual crossing signals at crosswalks. Install more benches and public seating. This will help Disabled people as well as able-bodied people. However, CCHS is not a condition that means I have to think about accessibility often."
Nico also has some ideas how we could all help to reduce the amount of discrimination and ableism around us. "On a national level, the US can pass and enforce anti-discrimination laws that specifically protect Disabled people. Companies can offer Disability-centric and Disability-led resource groups for their employees. Even adequately enforcing the Americans with Disabilities Act (ADA) would be a great start! We also need to see more actors with Disabilities portraying characters with Disabilities. When we normalise Disabled life we reduce Disability discrimination.