Disability Rights March

Today I attended a disability rights March in Indianapolis sponsored by the Global Accessibility Project. Those who turned out – on a hot day that threatened thunderstorms – both with and without disabilities, are committed to promoting disability rights. A guy from Iowa even stopped by and joined us for a while, sharing that he stood in solidarity with our frustrations about the lack of inclusion of people with disabilities in the broader social justice landscape.

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Photo credit: Global Accessibility Project

As we marched around Indiana’s Statehouse and Government Center, numerous accessibility fails were witnessed:

  • Our permit was for gathering on the south lawn of the Statehouse. It’s impossible to get there without climbing stairs.
  • To enter the Statehouse, those who cannot climb stairs are required to enter in the back, via the basement.
  • Accessible parking is nowhere near the accessible entrances of either building.
  • Flower planters are placed about one foot from the edge of the curb where those using accessible parking are required to parallel park. This makes it impossible for those using the parking spaces to deploy ramps or lifts.
  • One ramp was ridiculously steep, clearly outside Access Board requirements.
  • Many ramps were in poor repair, with potholes at the edges.
  • One ramp was completely inaccessible, as construction materials covered it. There was no opportunity to detour, as construction cones were dumped in the possible detour pathway.

Think that’s a lot of problems? We walked less than two blocks! Perhaps some of our frustration can now be understood…

Review: An American Sickness

You know by now that I love reading and sharing information that I learn from a good book. Elisabeth Rosenthal‘s An American Sickness: How Healthcare Became Big Business and How You Can Take It Back is truly one of the most interesting books I’ve read all year! Especially now, as Senators discuss repealing and/or amending the Affordable Care Act, read this book!!!

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Rosenthal, a former journalist and physician, begins by thoroughly describing how the medical-industrial complex takes advantage of patients and legal loopholes. She devotes a chapter each to the ills of insurers, hospitals, physicians, pharmaceutical companies, medical device companies, ancillary service providers, billing and coding contractors, medical researchers, conglomerations, and patient complacency. The facts presented are fascinating: for example, “[t]he average hospital cost per day in the United States was $4,300 in 2013,” more than triple “the cost in Australia and about ten times the cost in Spain”!

The concept that irked me the most is “venture philanthropy.” Of it, Rosenthal writes:

The problem is that many charitable foundations no longer see themselves as funders of research for knowledge propelled by donor dollars to cure a disease, but instead as inventors in new treatments.

When insulin was developed in the 1920s, researchers did not stand by patent protection to reap income, but instead shared their knowledge with the community. When the March of Dimes helped fund vaccination research, it did not bill children or their families for inoculation. Now, medical charities are investing money in research. Because any successful discovery will likely result in royalties to the charity shareholder, the charity has no financial incentive to advocate for the cost of that discovery to be accessible to those served by the charity. Talk about conflict of interest!

Rosenthal devotes the second portion of the book to offering both systemic reform, as well as individualized, methods to save money on medical treatment. Again, this section was disturbing, given that neither Republicans nor Democrats are proposing many of the reforms proposed by Rosenthal. Although concepts like tort reform have been initiated in states like Indiana, contemporary federal reform efforts appear completely off the mark.

Last, but most certainly not least, the end of the book contains multiple appendices patients can use to arm themselves in price negotiation. Although options for comparison shopping for medical procedures are limited, Rosenthal provides links to those options that are available. She also includes template letters patients can use when objecting to healthcare charges.

This book contains good stuff, all around. I’ve been bugging my coworkers about it all week long, eager to share stories about how we are all getting ripped off. This book, however, is not a ripoff, but a real gem for the bookshelf!