Disability Futures

Paris Summit: Rethinking 2°C

From November 30 to December 11, there will be the historic COP21 United Nations Conference on Climate Change in Paris, France. The conference will create an international agreement with one overarching goal: to keep global temperatures from increasing more than 2°C above preindustrial levels. But as Alex Ghenis argues, we should address the issue in a different way. Instead of setting a concrete target, we should recognize that there will be many potential levels of warming, and then push for the best one possible with urgency and effort.

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Climate Migration and Disability Part 3: What to Do

In the future, millions of people will be displaced by climate change and will have to find new homes. This post looks at what we can do to ensure that people with disabilities are able to relocate safely, and to the same extent as their able-bodied peers

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Climate Migration and Disability Part 2: Our Experience

As climate change hits, there will be large-scale migration for a number of reasons. And when it does, people with disabilities will face a number of difficulties that the able-bodied population will not, such as needing to find accessible housing. This post covers how we will experience each type of migration, raising issues and thoughts for the future.

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Climate Migration and Disability Part 1: Global Relocation

6/30/2015 - As climate change progresses in some areas become harder to live in, many people will leave their homes and migrate elsewhere. This post discusses how and why people will move, what projections we have for global migration, and what impacts that migration will have on humanity.

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Climate Change, Extreme Heat, and People with Disabilities (Part 2)

2/26/2015 - Part 2: Emergency Planning for People with Disabilities

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What the Research Says

Studies and surveys on inclusive education seem to conclude that students with disabilities stand to gain a lot from placement in general education settings. In addition, those without disabilities may see better outcomes, too.

• Cole, Waldron, and Majd found that students who do not have disabilities made significantly better progress in both math and reading when they were educated in inclusive settings.
• Cushing and Kennedy wrote that kids who helped out and supported their peers with disabilities in general-education settings illustrated positive academic outcomes (in the form of improved academic achievement, completion of assignments, and participation in classroom discussions).
• Two studies (one by Ruijs, Van der Veen, and Peetsma, and one by Sermier Dessemontet and Bless) found that there were no major differences in outcomes among students without disabilities who were taught in classrooms either with or without inclusion.
• A meta-analysis of research relevant to this topic conducted by Kalambouka, Farrell, and Dyson found that the vast majority (81 percent) of outcomes associated with inclusive education suggest either positive or neutral effects among students without disabilities. And they found that, broadly, the exposure of students with disabilities to a general-education curriculum is “strongly and positively correlated” with better performance in math and reading.
• Sermier Dessemontet, Bless, and Morin explained that full inclusion in general-education settings (as compared to special schools) for students with intellectual disabilities resulted in their improved literacy skills.
• Kurth and Mastergeorge, studying students with autism, found that those served in inclusive classrooms rather than in special ed settings earned “significantly higher scores” on academic achievement tests.

If you aren't familiar with the last historic watershed, the Section 504 Sit-in marks the day in April 1977 when more than 150 disabled men and women did something unheard of. On crutches and in wheelchairs, they converged on the US Federal Building, struggled up to the fourth floor and began a 25-day sit-in at the office of the Health, Education, and Welfare department to demand that the Carter Administration implement a four-year-old law protecting the rights of people with disabilities. 

If you think it's an inconvenience to spend a single night on the hard floor of a federal office building, imagine doing it for nearly a month. Now imagine that you arrived at the sit-in courtesy of a wheelchair. 

The protesters didn't bring food to last for a month-long siege so they were supplied by supporters on the outside—including the Black Panthers, who showed up with home-cooked meals. 

The sit-in galvanized disabled Americans across the nation and is still remembered as "the heart and soul of the disability rights movement." 

The specific target was Section 504 of a 1973 law intended to guarantee the rights of people with disabilities. Finally, on April 28, 1977 (with disabled activists still holding their ground in the Federal Building), HEW Secretary Joseph A. Califano signed the Section 504 regulations—a major victory on the path to passage of the 1990 Americans with Disabilities Act, which provided full protections against discrimination. 

In addition to the printed material, the exhibits also feature video screens that come alive at the touch of a button with background information on the sit-in, scenes from the extended occupation, reports on the spread of other protests across the country, moments of political theater, interviews with occupiers and activists, "untold stories" and, finally, "victory speeches and protest songs." (See video clips below for one of these enthusiastic hand-signed sing-alongs.) 

A quote from organizer Kitty Cone, emblazoned on one of the exhibit panels, reads: "In the face of government ignorance, we persisted and won." In another quote, activist leader Judy Heumann recalls how "blind people, deaf people, wheelchair users, disabled veterans, people with developmental and psychiatric disabilities and many others, all came together. . . . We overcame years of parochialism." Also on display is a popular campaign button that insists: "Nothing about us, without us." 

The life expectancy of a person with Down syndrome has more than doubled from 25 years of age to 60 years of age. People with Down syndrome no longer languish in institutions as the norm. They hold jobs, live independent lives and marry. Others do not, just like their non-Down syndrome counterparts.

Down syndrome did not get better, our humanity with regards to them did. Like all people, when treated better, fair better.

Given the routine treatment of neglect and torture of people with Down syndrome throughout history and the relatively recent change in our treatment of them, we have very little understanding what someone with Down syndrome is truly capable of accomplishing.

During the same time as we have allowed the advancement of people with Down syndrome we have also created less invasive and cost effective means to identifying them prenatally through genetic testing fulfilling Reagan's hope toward ultimate prevention.

Down syndrome is a victim of a diluted and compromised narrative. The messengers with the most money and most concision are the medical and scientific communities supported in part by profitable genetic testing companies, all touting the same compelling message: people with Down syndrome are defective. Here humanity does not accept individuals with Down syndrome instead it sees them as a problem to solve.

The most vocal messengers who have a vested interest in preserving Down syndrome -- other than actual people with Down syndrome -- are parents who have children with Down syndrome. The dominant public narrative of parents is the reporting of their initial devastation at their child's diagnosis coupled with grief and finally acceptance of their child who has enhanced their over-all life experience.

The problem with this narrative from purely a human rights perspective is Down syndrome as acceptable shows up halfway through someone else's story. It was a message likely more potent closer to de-institutionalization when most children with Down syndrome were beginning to be raised in their family's homes rather than institutions.

The project, titled “Understanding and Increasing Supported Decision-Making’s Positive Impact on Community Living and Participation Outcomes,” aims to enhance quality of life outcomes for people with intellectual and developmental disabilities by improving the way they live in communities and participate in daily life, according to an SU News release.

The project is based on historical evidence that, according to the release, people with intellectual and developmental disabilities have been personally affected by others’ low expectations about their decision-making capabilities. These low expectations of people with disabilities in “substituted decision-making frameworks,” such as guardianship, often diminish their self-determination and lead to devalued life outcomes, such as less community integration, according to the release.

“This exciting project will provide new knowledge about the ways that individual decision making positively impacts life outcomes,” said BBI Chairman and University Professor Peter Blanck in the release.

The project will involve an experimental model to examine whether training individuals with intellectual and developmental disabilities and those close to them to use a specific, supported decision-making approach actually has a positive impact on their life satisfaction, integration in community living and daily life outcomes, according to the release.

Asylums and institutions have long been a source of fear and curiosity. Asylums, along with other institutions such as soldiers’ homes and prisons, were common tourist attractions in the 19th century, mostly for their beautiful grounds and architecture but also for able-bodied visitors to catch a glimpse of the patients. More recently, asylums entered into pop culture as a setting for scary movies and television shows, including the successful American Horror Story: Asylum. A new development includes using the asylum as a form of haunted house attraction during the Halloween season. Buffalo’s own Fright World features an “Eerie State Asylum” attraction this year, which challenges guests to “escape from the lunatics” and survive the attack of “demented doctors and patients.”

I like a ghost story as much as anyone, but the patients who lived in institutions like Willard and Pennhurst weren’t spooky spirits — they were human beings with complex lives. I don’t find the stories of John or Elsie or the patients of Willard exciting or thrilling — I find them repulsive. As Emily Smith Beitiks has deftly noted, “while the field of disability studies still struggles to gain access to resources in universities and disability activists still have Americas with Disabilities Act compliance denied on the grounds of expense, this commercial playground of fetishized disability thrives.”4 Haunted attractions that use asylums as settings rely on reductive and offensive portrayals of the mentally ill as horrifying, dangerous, and evil people that must be kept within an asylum for the protection of the public. They exploit the ways that the real patients of mental institutions were treated for cheap thrills — “patients” are often depicted in restraints or undergoing medical procedures and experiments.

Justin’s letter reads:

The Assurance Plan is a lifetime advocacy program that will provide activities, financial oversight, make visits and attend planning meetings, and ensure the wishes of the individual and families remain in place. The Assurance Plan is a replication of a program that’s been around for 30 years on the southeast side of Michigan, and Finn is ready to make sure this resource is available in West Michigan. “I’m very excited to bring this to Kent County so that families can be assured that their loved ones will still have the quality of life we’ve worked so hard to maintain.”

Along with the new Plan, The Arc also provides advocacy, resources, and information across the lifespan. There is a parent mentor to help families understand the special education system and helps facilitate meetings at school. They help adults navigate the community mental health system and access and maintain needed services. There is the Community Participation Initiative, which helps adults connect with activities in the community such as volunteering or recreation so that they can be as independent as possible. And they advocate at the state and federal level to ensure that the voices of the families and individuals with disabilities are heard and their needs are met.