Michigan Disability Resistance

However, the audience was a bit unusual for me. Among the 25 physicians in the room, nearly all were in their 70s and 80s. All were retired, and none were actively involved in patient care. I guess that explains why they had time in the middle of the day for an hour-long presentation.

I gave my talk, but there were no questions.

I had a few moments afterwards to speak to my audience. Since the physicians were not involved in patient care, I wondered why they wanted to hear a talk about new advances in heart failure.

The response surprised me: "We no longer care for patients, but we care about what's going on. You see, most of us are employed by insurance companies to do preauthorization for drugs and medical procedures."

I was really curious now. "So did I say anything today that was helpful? I talked about many new treatments. Did I say anything that you might use to inform your preauthorization responsibilities?"

Their answer hit me hard. "Oh, we've heard about those drugs before. We're asked to approve their use for patients all the time. But we don't approve most of the requests. Nearly all of them are outside of the guidelines that we are given."

I stammered. "I just showed you evidence that these new drugs and devices make a real positive difference in people's lives. People who get them feel better and live longer."

The physicians agreed. "Yes, you were very convincing. But the drugs are too expensive. So we typically reject requests, at least the first time. We figure that, if doctors are really serious, then they should be willing to make the request again and again."

Americans with disabilities have always been on the front lines of the fight for civil rights and progressive causes, from education and health care to employment, transportation, and other issues. Leaders such as Fannie Lou Hamer, Sen. Paul Wellstone (D-MN), and others have all brought a connection to disability into broader movement work. Yet stigma still plays a powerful role in isolating disability in its own silo.

While concepts such as self-care and flexibility in paid leave are often discussed as cutting edge proposals, they have existed as cultural norms across the various disability rights movements for decades. Ongoing pushes for community-based mental health care have demonstrated the ability of people with mental health conditions to contribute to society and live with dignity. And most recently, ADAPT protesters’ actions to save the Affordable Care Act and Medicaid have reignited discussions on the value of civil disobedience at a time when lives are truly on the line.

In an age in which President Donald Trump and his conservative allies have operated a virtual whack-a-mole game rotating attacks on marginalized communities, much can be garnered in the way of promising practices, solidarity, and perseverance in the work of the disability rights movement.

In junior high, I had my heart set on attending a famous performing arts sleep-away camp in upstate New York. All I’d ever wanted from the time I was 4 and saw a local production of Oliver! was to be a Broadway star. I could barely contain my jealousy of all the child actors who were making it big in musical theater that year, 1990: the orphans of Les Miz, the orphans of The Secret Garden, the orphans of Annie. I had the talent to be an orphan too! I just needed a chance to go away from home, I reasoned, because very few successful orphan characters are discovered living with their parents.

If only I could attend French Woods, the place where Natasha Lyonne and Zooey Deschanel had spent their summers — a destination for suburban preteens on the East Coast who had Broadway ambitions, kids who perhaps idolized Bernadette Peters (me) and had strong opinions about Andrew Lloyd Weber’s early work (also me). I had always fit in just fine in my New Jersey town, but I knew I would find my people at French Woods.