Michigan Disability Resistance

Introduction: Disability Rights Under Siege

This issue of Human Rights is dedicated to exploring the landscape of disability rights law in 2017. This subject could not be more timely given the current political climate in which not only the rights but the very lives of people with disabilities are under severe and constant threat.

Whither the Disability Rights Movement? The Future of Disability Rights Law

With the changing political atmosphere, what does the future hold for civil rights laws protecting the disability community? In her article, Hill discusses legislation currently in place and how changes could damage the rights of those with disabilities.

The Promise of ABLE

The LA Times is reporting that the  death of a disabled 8-year-old boy in 2013 is currently under investigation by Los Angeles police and the DA office.

Back in 2013, Cole Hartman’s father found his son with his head submerged in their washing machine. Cole went into cardiac arrest, but paramedics were able to resuscitate him.

From the story:

Physicians at UCLA’s pediatric intensive care unit told Cole’s family that the child was not brain-dead but “would never recover normal neuro function and … could never awaken,” according to an entry in his medical chart.

The Hartmans decided to take Cole off life support and donate his organs. He was removed from the ventilator and, 23 minutes later with his family at his bedside, pronounced dead by an anesthesiologist.

Before getting into why there’s an investigation into Cole’s death – and why it’s happening four years after his death – here’s some info on Donation after Cardiac Death (DCD),  and what we call “rush to judgment.”

I recently attended a medical ethics seminar held at the Rehabilitation Institute of Chicago that reaffirmed medical practice guidelines about brain injury. Doctors continue to agree that it is necessary to wait before they can predict brain injury outcomes with reasonable, though they also admit not total, certainty. For traumatic brain injury (e.g. car accidents), the waiting period is one year. For anoxic brain injury (e.g. stroke or heart attack), it’s three months.

And, experts say that children are more likely to recover from brain injury than adults, as discussed by doctors regarding the “end of life” case of Haleigh Poutre. Here are excerpts from a story by Joe Shapiro after 11-year-old Haleigh Poutre’s brush with an “end of life” judgment:

Dr. JANE O’BRIEN (Chief Medical Director, Franciscan Hospital for Children): Children’s brains are amazing. They are very plastic. There is often a lot of potential to reach levels that nobody expects.

SHAPIRO: There are 39 children living on the inpatient unit. They’re kids but with a difference. Most depend upon some piece of technology.

In charging Michigan’s public health chief and four others with involuntary manslaughter,  Attorney General Bill Schuette has refocused attention on why it took a year or more for state and county officials to alert the public about a deadly outbreak of Legionnaires’ disease in the Flint area.  

hree design students in Taiwan teamed up for the Polluted Water Popsicles project, which contrasts art aesthetics with environmental activism. The group went to 100 different polluted water sources in Taiwan, collecting samples that they then froze into popsicles.

These popsicles were then turned into 1:1 poly models and wrapped in beautiful packaging to contrast our tendency to overlook that which is ugly and problematic for the sake of aesthetics. The award-winning pollution art project has gained viral attention in Taiwan—a look at the group's Facebook page shows exhibitions in museums and interviews with national news.

I have a tracheostomy and use a ventilator to breathe at night. It works well for me, and I have no regrets, but every couple of years, I wind up in the hospital with some kind of upper respiratory infection. As Congress tinkers with health insurance like a Jenga player on six espressos, a recent stay in the hospital for a nasty but manageable bronchitis led me to think about the various awkward personal experiences of actual health care when you’re disabled.

Most of us can remember times when a doctor or nurse acted like they didn’t believe us. Sideways looks and prying, investigative questions often suggest that the medical profession regards patients with disabilities as vaguely compromised.

While I have never had a doctor or nurse directly doubt or contradict me, medical professionals often talk to my family or friends instead of me to gather information when I’m sitting right there. That’s why I prefer to meet with my doctors alone.

Lately, this type of ableism has gotten better, with medical professionals looking to me for guidance on treatment, especially when it relates to my disabilities. In the hospital last month, I never once felt like my word, competence, or intelligence were doubted. That’s a big improvement.

Weird stuff still happens though:

• A nurse’s aide taking my blood pressure jokes, “Your arm is so thin, I could break it!”
• I ask a nurse to take my tracheostomy tube over to the sink and clean the gunk out of it. He hems and haws, finally says he’s not allowed to mess with it, and will call Respiratory to do it instead.
• A discharge planner wants to know whether I drive, if I live alone, and who helps me take care of my ventilator.

The social justice term for these is “microaggressions,” the kind of small humiliations that don’t do much harm on their own, but over time can poison even the most resilient souls. You could also call it “amateurism,” a mix of passive ableism, thoughtlessness, and inexperience.