Disability Futures

Objective: To investigate the impact of disability simulations on mood, self-ascribed disability stereotypes, attitudes about interacting with disabled individuals, and behavioral intentions for improving campus accessibility.

Conclusions: Simulating disabilities promotes distress and fails to improve attitudes toward disabled people, undermining efforts to improve integration even while participants report more empathetic concern and “understanding of what the disability experience is like.”

Virtual reality is quickly gaining steam in the gaming industry. But an MIT startup is now aiming the technology at a different demographic, putting it to use as a health care tool for the elderly.

At last night’s MIT Sloan Healthcare Innovations Prize pitch competition, Rendever earned the $25,000 grand prize for creating a virtual-reality platform that gives residents in assisted-living facilities the chance to explore the world virtually. The platform also provides cognitive therapy and tracks movement data to aid in early diagnosis of dementia.

“We’re using virtual reality to improve the way we age, so you don’t become isolated, don’t become depressed, and you can keep your mind happy and healthy,” said Rendever co-founder and CEO Dennis Lally, an MIT Sloan School of Management student who launched the startup with classmate Reed Hayes.

But Corby, who lives in Pottsville, Pa., is autistic, suffers from several psychological conditions and takes 19 medications. When he applied to the transplant program at the University of Pennsylvania in 2011, he was rejected because of his “psychiatric issues, autism, the complexity of the process . . . and the unknown and unpredictable effect of steroids on behavior,” according to the denial letter sent to his mother.

“I couldn’t even believe this would happen,” Karen Corby said, “that this would be the reason in this day and age.”

In fact, mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.

Beyond some restrictions imposed by laws such as the Americans With Disabilities Act, the doctors, nurses, psychologists and social workers at 815 U.S. transplant programs are free to take neurocognitive disabilities such as autism into consideration any way they want.

As a result, there is wide variation from program to program. Some teams weigh mental and psychological issues heavily in deciding whether someone should be eligible for the precious gift of a heart, liver, kidney or lung. Others do not. A few even admit that they automatically rule out people with certain disabilities. Some patients are rejected at one medical center but accepted at another.

“As a society, we want individual transplant centers to maintain discretion about putting people on their list or not. We don’t want government playing doctor at the bedside,” said Scott Halpern, an ethicist at the University of Pennsylvania medical center that rejected Corby. “Having said that, the current system lacks the accountability that we might wish it to have. There are virtually no checks and balances on the decisions that transplant centers make.”

Shane Stoner’s addiction began in 2008. He lost a factory job, his parents divorced, his father died — and then a relative introduced him to heroin. “I felt like heroin gave me confidence,” Stoner says. “I could get out of bed in the morning and do the day. No matter what happened, it made me feel like it was going to be all right.” It erased his constant anxiety.

Stoner, now 44, eventually entered detox in 2013 after he was arrested for stealing copper from an abandoned house. It was obvious at that point that he was addicted to heroin. But it would take several more years for him to get the diagnosis that truly helped him understand himself: autism.

The new label came as a relief. It explained Stoner’s sensitivity to things such as tags on his T-shirts, and his succession of obsessive interests. It clarified why he had such a difficult time fitting in as a child, his problems with roommates in college — and why he continued to struggle with social connections as an adult. “I can’t believe nobody ever mentioned it before, because I started thinking back and there’s pictures of me, like, 3 years old, and I’m honestly flapping my hands.”

Approximately once a week, a person with a disability is murdered by a family member or caregiver. We have found that when these murders are covered, they are often called “mercy killings” which perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life. Such coverage simply must stop. It is dehumanizing and dangerously continues to stigmatize disability. We’ve found that the voices of the victims are nearly always erased to favor the perspectives of the perpetrators. This too must stop.

The following is an interview with Canadian writer Adam Pottle on his recent work of fiction, “The Bus.” Please note that there will be spoilers about the plot and characters of this novella and a discussion of genocide, eugenics, and euthanasia.

Tell me a little bit about your background and what led you to become a writer. Who are your literary influences/mentors? 

Adam Pottle: When I was sixteen, I had a wonderful English teacher named Ian Kluge. He was a big, bald, burly dude who told stories with magnificent bombast. On the first day of class, he read Poe’s “The Tell-Tale Heart” aloud, and after that class I knew I had to try telling stories too, to try and capture that effect.

My key influences are Toni Morrison, Mordecai Richler, Albert Camus, Elie Wiesel, Ann-Marie MacDonald, Cormac McCarthy, and William Faulkner.

Wonder the Goldendoodle was the Supreme Court plaintiff of 2016 most likely to deserve a scratch behind the ears, especially since the Supreme Court just ruled 8–0 in his — or really his owner’s — favor. Thanks to a favorable decision in Fry v. Napoleon Community Schools, children with disabilities and their caregivers will now be able to sue schools when they believe their rights civil rights have been violated. This doesn’t affect only those who depend on service dogs, but arguably also cases involving life-threatening and abusive practices of restraint and seclusion. Better yet, it bodes well for an even more significant case before the court, about the fundamental basics of educational quality for disabled children in America.

That was the decision before the Supreme Court, and the justices unanimously agreed with the Fry family’s attorneys. When a person with disabilities encounters alleged discrimination, it doesn’t matter whether it takes place in a school. Under the Americans With Disabilities Act, the disabled person can sue.

The U.S. Supreme Court on Wednesday questioned the validity of arbitration agreements used by nursing homes in a case involving Kindred Healthcare.

The justices recently ruled in favor of arbitration agreements in two separate cases but they appeared to take a more critical approach to the practice when questioning Andrew Pincus, a lawyer representing Kindred Healthcare.

"The context here seems different from the arbitration cases that we've had in recent years," said Supreme Court Justice Samuel Alito. "This doesn't involve an arbitration about the amount that you were charged for your cable bill or for your telephone bill. This involves a situation where an elderly person needs care."

The cases the Supreme Court ruled in favor of arbitration agreements involved technology companies like Direct TV, not people. This appeared to be an important distinction for the court, said Imre Szalai, a professor at Loyola University New Orleans with an interest in arbitration agreements.

“(The justices) were more aggressively searching for a reason to favor the little guy,” Szalai said. 

Nursing home arbitration agreements increasingly have drawn scrutiny as a number of lawsuits challenging the practice make their way through the courts, and judges more often are striking down the practice.

As part of a nationwide Day of Mourning, disability rights advocates in the Edison area will be holding a vigil on Wednesday, March 1, to honor the lives of disabled people murdered by their families and caretakers.

More than 50 such murders have been reported in the United States in the last five years, over 20 in the last year alone. The total number of killings is likely higher than the amount which are reported in news media, said Carole Tonks, executive director of the Alliance Center for Independence, in a news release.

The Autistic Self-Advocacy Network, Not Dead Yet, and the National Council on Independent Living held the first Day of Mourning in 2012 as a response to the murder of George Hodgins, a 22-year-old autistic man from California, by his mother. Day of Mourning is a national event, with around 15 participating cities each year. Little public attention is paid to the disabled victims of these violent acts. Media coverage and public discourse about such killings frequently justifies them as “understandable” and sometimes “merciful,” rather than appropriately condemning these crimes and those who commit them.

Have you seen this yet?”

I receive a post starting out this way on my Facebook timeline at least once a week. It’s always accompanied by either news about some miraculous multiple sclerosis study, or more frequently, some super-cool high-tech Iron Man-looking electronic contraption that is supposedly going to revolutionize my life as a person who can’t walk. The short videos showing paraplegics standing and wounded veterans walking look pretty amazing, but I have just one thing to say to my well-meaning friends: STOP.

Technology is a wonderful thing, and there is no question that I wouldn’t have the freedom of movement I enjoy today without my power wheelchair, electric scooter, or accessible SUV. The tools available now to quadriplegics to help them drive and individuals who have cerebral palsy to help them communicate are pretty amazing. But I want to explain why sending someone like me a video of a person riding in a wheelchair with Caterpillar treads, rolling into a modified motorcycle, or using an off-road chair that goes over rocks and tree branches isn’t likely to induce much enthusiasm.

It seems obvious that people who are nondisabled view the world differently than those of us who use mobility aids. What isn’t obvious to the nondisabled, however, are the practicalities (or lack thereof) associated with some new high-tech devices designed to either help us get around more easily, or encourage us to have more fun. Because nondisabled people don’t use mobility aids, they don’t think about things like their size, weight, maneuverability, ease of use, or transport. They just look at a few seconds of video and think, Hey, I bet Jane would get a real kick out of this! without thinking that Jane has no practical use for it, or the thousands of dollars needed to pay for it.