The summit in rural southwest Virginia had around 100 attendees. Some in the crowd were former coal miners who are suffering with black lung disease. Others were widows of former miners who died with black lung disease. The rest of the crowd were a mix of doctors, lawyers, respiratory therapists, nurse practitioners, nurses, or politicians that all advocate for miners (and their families) who are affected by black lung.
One key part of this advocacy is helping miners and widows apply for federal black lung benefits. If a miner meets a federal standard for disability, they are entitled to a health insurance benefit and a small monthly stipend for the rest of their lives.
Last year, the amazing team at the Stone Mountain Black Lung Clinic, where I work in southwestern Virginia, helped more than 250 miners qualify for federal black lung disability benefits. The number of disabled coal miners reflects an ongoing epidemic of an entirely preventable disease. These miners who become disabled are universally struggling with their incurable lung disease and the impact it has had on their lives.
At clinic visits, I hear about how hard it is to no longer be able to work, mow their lawn, shower, keep up with their kids/grandkids, or hunt or fish with their friends. Many of these miners aren’t much older than I am (43 years old).
A central part of my care of many coal miners is helping them navigate through a complicated, frustrating, and long legal disability process. When miners with severe black lung do receive federal disability benefits, their health care and quality of life almost always improve.
The summit last week was a space for advocates to come together and share their knowledge, experiences, and expertise. But due to my recent back issues, the summit was also the first time in my life I had to experience challenges in mobility and reliance on others for things I usually take for granted (eg, driving). And because of my injury, I was quicker to notice others in the crowd who were struggling. For example, in the large, at-capacity conference room, some people had to climb stairs to access seats—and many of the miners with black lung who were toting oxygen tanks struggled to do so.
This issue of CHEST Advocates focuses on advocacy for both patients and providers with a range of disabilities and from a variety of viewpoints and experiences. I found that reading these articles helped me better appreciate more practical steps I can take to advocate for those who have a disability.
Now I know what I need to do better at next year’s summit to be more accommodating to those who are disabled. I’m optimistic that I won’t have to ask my brother for a ride next year; but due to my own injury, I’m also newly appreciative of the challenges that others who are more permanently reliant on accessibility accommodations face. I’m also more aware of how critical these features can be to allow full participation in life’s important events and activities.