Disability Futures

No one knows how to approach it, especially since I do not use a wheelchair, hearing aid, or any other signifier that communicates my Otherness. But as I have evolved throughout my collegiate experience, I’ve realized just how much my disabled body has shaped that experience: specifically, I’ve observed just how others see, think about, and react to me being in space, which has led me to the sad realization that my body will always be a barrier. It is a barrier for colleagues, for friends, for students and professors — populations who often seek to remedy disability by way of technology, rather than personal inquiry or relationship building.

What these statements show is that just because someone is educated or has known you for a long period of time, it doesn’t mean they even begin to understand you. Moreover, what these statements demonstrate is not only ignorance, but a critical lack of willingness to understand, to empathize. I don’t want people to “feel sorry” for me, but rather to holistically and analytically consider my position as a PWD: my body doesn’t have to be a barrier. My body—like the bodies and minds of other marginalized groups—could be a bridge like the one from the Harry Potter set, a way to learn about the issues people with disabilities face from someone who is disabled. But there are not attempts to learn our stories, to treat us like people.

when it comes to mental disorders, including autism, dyslexia, attention deficit hyperactivity disorder, intellectual disabilities, and even emotional and behavioral disorders, there appears to be substantial uncertainty concerning when a neurologically based human behavior crosses the critical threshold from normal human variation to pathology.

A major cause of this ambiguity is the emergence over the past two decades of studies suggesting that many disorders of the brain or mind bring with them strengths as well as weaknesses. People diagnosed with autism spectrum disorder (ASD), for example, appear to have strengths related to working with systems (e.g., computer languages, mathematical systems, machines) and in experiments are better than control subjects at identifying tiny details in complex patterns [1]. They also score significantly higher on the nonverbal Raven’s Matrices intelligence test than on the verbal Wechsler Scales [2]. A practical outcome of this new recognition of ASD-related strengths is that technology companies have been aggressively recruiting people with ASD for occupations that involve systemizing tasks such as writing computer manuals, managing databases, and searching for bugs in computer code [3].

Valued traits have also been identified in people with other mental disorders. People with dyslexia have been found to possess global visual-spatial abilities, including the capacity to identify “impossible objects” (of the kind popularized by M. C. Escher) [4], process low-definition or blurred visual scenes [5], and perceive peripheral or diffused visual information more quickly and efficiently than participants without dyslexia [6]. Such visual-spatial gifts may be advantageous in jobs requiring three-dimensional thinking such as astrophysics, molecular biology, genetics, engineering, and computer graphics [7, 8]. In the field of intellectual disabilities, studies have noted heightened musical abilities in people with Williams syndrome, the warmth and friendliness of individuals with Down syndrome, and the nurturing behaviors of persons with Prader-Willi syndrome [9, 10]. Finally, researchers have observed that subjects with attention deficit hyperactivity disorder (ADHD) and bipolar disorder display greater levels of novelty-seeking and creativity than matched controls [11-13].

Such strengths may suggest an evolutionary explanation for why these disorders are still in the gene pool.

Removing barriers and enhancing your organizations capacity to effectively serve survivors with disabilities is only the beginning of a growing movement to end domestic and sexual violence against people with disabilities and Deaf people. Success and sustainability of these efforts relies on tracking progress and measuring effectiveness. The Vera Institute of Justice’s Center on Victimization and Safety developed a practical performance indicator tool, to meet the growing need for straightforward and cost-effective ways for disability organizations, domestic violence programs, rape crisis centers, and programs that address domestic and sexual violence to track their progress in serving survivors of domestic and sexual violence who have disabilities.

This one-of-a-kind resource helps practitioners track their organization’s progress over time by capturing point-in-time snapshots of their organizations overall commitment and capacity to serve survivors with disabilities, and allows them to measure their efforts against field standards. It is also designed to help organizations track their progress towards specific goals and refine their capacity-building efforts to better meet those goals. The performance indicator tool draws upon data and resources that these types of organizations typically have access to, without requiring previous knowledge of statistics or evaluation methods. Guides for this tool have been created for each organization type provide step-by-step information on implementation, including how to collect, analyze, and interpret data.

Three years after the U.S. Department of Justice found Portland police had a “pattern and practice” of using excessive force, including unjustified stun gun use, against people with mental illness, the ongoing case of Matthew Klug begs notice.

“That pattern and practice – it happened to me personally,” Klug said.

Klug, 46, is a Portlander with a diagnosed mental illness, traumatic brain injury from a car accident decades ago, and epilepsy. 

In March, he filed a tort claim in U.S. District Court of Oregon, alleging police used a Taser on him multiple times without probable cause. 

A remarkable thing — perhaps even historic — happened in a Hollywood casting office last week. The team for the TV show “Criminal Minds” took the extraordinary step of rewriting a character in an episode from a hearing role into a deaf role solely so they could hire a deaf actor. The “Criminal Minds” casting director had seen deaf actor Troy Kotsur on stage in our smash hit production of Cyrano at the Fountain Theatre and was so blown away by his performance that he convinced the TV team to change the role in the upcoming episode from a hearing character to a deaf character just so they could hire Kotsur.

Stereotypes affect how other people think about and treat autistic people. Fictional portrayals of autistic characters often reflect and amplify these stereotypes. There’s no research on how fiction affects real-life stereotypes about autistic people, but we know fiction affects attitudes toward people with mental illness, and television shows with positive gay characters increase support of marriage equality.

Fiction very likely influences attitudes toward autistic people too—meaning that harmful portrayals can have damaging effects on actual autistic people, whereas more realistic, richer portrayals can have positive real-world effects. Portrayals of autistic characters also affect how real-life autistic people view ourselves: Are we shown as real people with both strengths and difficulties, people with meaningful internal experiences who undergo realistic character growth, and who are as human and as valuable as non-autistic people?

In this article, I review common tropes in fiction (mainly kid lit) that mirror and reinforce real-life stereotypes, with links to book reviews or commentary, to blog posts describing relevant real-world experiences, and sometimes to news stories or research. (Note that these are by many different people, and I don’t always agree with every point they bring up or every way they talk about autistic people or disability in general.)

Denmark was the first European country to introduce routine screening for Down syndrome in 2006 as a public health-care program. France, Switzerland and other European countries soon followed. The unspoken but obvious message is that Down syndrome is something so unworthy that we would not want to wish it for our children or society. With the level of screening among pregnant Danish women as high as 90 percent, the Copenhagen Post reported in 2011 that Denmark “could be a country without a single citizen with Down syndrome in the not too distant future.”

The real danger lies in voices that claim our children need to be tested before we can decide who is worthy of life. Women are not incubators of socially preferable descendants.

The irony is that for a baby with Down syndrome born today, the outlook has never been better. Medical and social advances have radically changed what it means to live with Down syndrome. Most people with Down syndrome are included in schools and communities. They live healthier, longer lives, and many adults live independently, have jobs and enjoy a rich social life. In 2013 a young woman with Down syndrome became Spain’s first councilor. One study showed that the majority of people with Down syndrome report being happy and fulfilled, regardless of their functional skills. This is why Downpride is calling on the United Nations High Commissioner for Human Rights to stop systematic screening for Down syndrome as part of public-health programs and to regulate the introduction of prenatal genetic testing — testing should be used to enhance health and human well-being instead of discriminating against people based on their genetic predisposition.

Screening and selection say nothing about the inherent worth of people with Down syndrome. They say everything about the elevation of the capacity for economic achievement above other human traits. My children are fascinating, demanding, delightful, present, annoying, dependent, loving, cuddly, different, unpredictable and completely human, just like other children. They are not a mistake, a burden or a reflection of my “personal choice,” but an integral part of society.

Autism is such a hot-button issue that it’s dangerously easy to frighten and mislead people. Infamously, a fraudulent 1998 study purportedly linking autism to the measles-mumps-rubella vaccine stoked a mass panic that resulted in lower vaccination rates, lower herd immunity, and the return of measles. I recently investigated how the debunked pseudoscience of facilitated communication persists in large part by feeding on the desperate hopes of autistic children’s parents, some of whom are quietly shepherding such junk science into public schools. So it is not surprising that other researchers have stressed a note of caution about the new antidepressant study and its methods. Yet even these dissenting voices do not, I think, go far enough.

According to the Iraqi activist blog Mosul Eye, sharia judges have ruled that ISIS followers are authorized to kill infants with Down Syndrome or congenital deformities. Already since the religious decree (fatwa) was issued, militants have killed at least 38 children between one week and three months old by lethal injection or suffocation.

In a post on the Mosul Eye Facebook page, the group claims that any child with a disability is now at risk of being killed, and released a brief video showing disabled children. The killings reportedly took place in ISIS strongholds in Syria and Mosul, the northern Iraqi city seized by ISIS in June 2014.

Mosul Eye claims to report directly from Mosul, and has reliably reported on Islamic State incidents in the past. It has been called “one of most accurate chronicles of life under Islamic State rule.”

The group says it has monitored the deaths of several children with Down Syndrome and congenital deformities. They learned of an “Oral Fatwa” issued by the sharia board of the Islamic State authorizing its members to “kill newborn babies with Down’s [sic] Syndrome and congenital deformities and disabled children.”

The Fatwa was issued by a Saudi sharia judge named Abu Said Aljazrawi.

On June 1, 2015, the U.S. Department of Justice Civil Rights Division sent a findings letter to Gov. Tomblin stating that the Mental Health System in West Virginia failed to adequately protect and treat children with disabilities. This failure was found to be a direct violation of the Americans with Disabilities Act and a directive set forth by the U.S. Supreme Court in Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999).

In the Olmstead case, the U.S. Supreme Court held that individuals who had disabilities, including children with mental illness, were required to receive supports and services in the most integrated settings appropriate to their needs. This means that states are required to establish programs for individuals with mental illnesses or disabilities that are integrated and are proven to work.

The problem lies in the fact that West Virginia fails to implement these programs and instead relies on a system of residential treatment facilities which remove children from their families and communities.

According to the Department of Justice findings, children with disabilities represented only 17 percent of the overall West Virginia School population during the 2009-10 school year, but they represented 34 percent of all school related arrests. Many of those arrests were then processed through the juvenile justice system with most of those juveniles being placed out of their homes to receive the “personal and social growth” that they need. One might wonder why this matters, and the answer to that is two-fold.

First and most importantly, studies from across the nation show that placing youth out of their homes is not effective in helping them learn appropriate behaviors to deter them from re-offending.

In August, the U.S. Office of Juvenile Justice and Delinquency Prevention released a bulletin “Studying Deterrence Among High-Risk Offenders.” This bulletin analyzed The Pathways to Desistance study which tracked over 1,300 serious juvenile offenders for seven years after their convictions in both Philadelphia County, Pennsylvania and Maricopa County, Arizona.

Some of the important conclusions from that study include:

•  Incarceration, as well as longer stays in juvenile facilities, did not reduce reoffending. In fact, for those with lower level offenses, placement in those facilities had a tendency to raise their rate of re-offending.

•  Juveniles who received community-based supervision and services within their communities were more likely to attend school, go to work and avoid further offending compared with those juveniles that were placed in facilities. This leads us to the conclusion that treating juvenile offenders in their homes and communities helps prevent them from re-offending more effectively than removing them from those situations.