LEND faculty member Carrie Sandahl has helped to coordinate the Bodies of Work disability arts and culture festival taking place from May 15 – 25. The festival includes many different performances and shows taking place at various venues across Chicago. In a recent profile by the Chicago Tribune Sandahl explains that the purpose of the festival is to “‘illuminate disability experience in new and unexpected ways’” (Ise, 2013).

Sandahl says popular culture typically portrays characters who are disabled or ill ‘as an inspiration, or a villain, or a charity case,’ and that the roles they play are ‘largely symbolic … to teach nondisabled people lessons about themselves.’…Instead of seeing disability as a flaw, advocates like Sandahl argue that we should instead consider it ‘part of natural human variation.’ Through art, says Sandahl…’we are expressing our perspectives on the world gained by having a unique body, a unique mind, sensory differences, mental health differences. We don’t see these as obstacles to overcome, but as experiences to be explored.’ (Ise, 2013).

To read more of the Chicago Tribune article click here.
To see the schedule of festival events visit Bodies of Work.

Ever wonder what LEND experiences are like in other centers? Read the reflections of a recent LEND graduate from Cincinnati Children’s Hospital.

Jessica Lester (2012) recently interviewed parents about their children’s autism labels. Here is the article’s abstract:

“Not so long ago autism was the province of a small group of individuals. Yet it is now everywhere, working to shape the public’s imagination and ways of talking about the construct of autism. Public stories told about autism often conflict with and contradict one another, particularly as public stories meet the private, everyday practices of individuals with autism labels and their families and friends. Drawing upon discursive psychology, I share the findings generated from a discourse analysis of 14 interviews with parents of children with autism labels focused on the meanings of autism. I illustrate the ways in which the participants constructed autism as: (1) untenable and apt to receive multiple meanings; (2) representative of a different or non-normative way of thinking; and (3) minimally relevant, as the ‘truth’ of autism was overshadowed by bodily realities.”

To read the rest of the article, click here.

Reference:
Lester, J. N. (2012). A discourse analysis of parents’ talk around their children’s autism labels. Disability Studies Quarterly, 32(4).

With help of a NIH grant an Arizona autism center is developing a smartphone application to help with the diagnosis of autism. The app is aimed at widening access for those who may not have a pediatrician with autism experience in their area. Theoretically families would be given the app and then use it to record videos which will be sent to specialists for examination. Although this app has the potential to serve more families, one also has to wonder about the complications, such as misdiagnosis, that may occur.

To read more about this application click here.

Autism Shines is a project that aims to remove stigma from people with ASD. Parents post photos of children with ASD along with little stories about the children’s favorite things to the website. The goal of the project is to highlight how children with ASD are more than a label – they are multidimensional.

Since autism is relatively new disability it is possible that older adults with autism have yet to be diagnosed. Research by Niekerk et al. (2011) indicates that very few studies have actually examined older adults with autism. According to the authors the first step in changing this is to create a greater awareness of the possibility of older adults having autism (Niekerk et al., 2011). More research is also needed to aid understanding. To read more see:

Niekerk, M., Groen, W., Vissers, C., van Driel-de Jong, D., Kana1, C., and Oude Voshaar, R. (2011). Diagnosing autism spectrum disorders in elderly people. International Psychogeriatrics, 23(5), 700-710.

A piece of very restrictive abortion legislation recently passed in North Dakota. Included in the bill was the prohibiting of abortions if it is suspected that the abortion is occurring due to the potential presence of a disability (Diament, 2013). This bill is the first such ban on selective abortions in the United States. It is also the strictest anti-abortion legislation to date.

Some are celebrating North Dakota’s decision. One mother commented, “’it felt like a small victory seeing that abortions based on Down syndrome were banned — like saying, see, individuals with Down syndrome are valued and protected’” (Piepmeier, 2013).

However, Alison Piepmeier (2013) says, “Repeatedly women told me that they ended the pregnancy not because they wanted a ‘perfect child’ (as one woman said, ‘I don’t know what ‘perfect child’ even means’) but because they recognized that the world is a difficult place for people with intellectual disabilities.” Piepmeier (2013) also suggests “If North Dakota…wants to prove that ‘a civil society does not discriminate against people for their sex or for disability,’ it should make the state a welcoming place for people with disabilities.”

Whatever your opinion is on abortion this controversial issue will certainly be one to watch.

References:

Diament, M. (2013, March 27). In First, State Bans Abortions Related To Disabilities. Disability Scoop, Retrieved from: http://www.disabilityscoop.com/2013/03/27/in-first-abortions-disabilities/17593/

Piepmeier, A. (2013, April 1). Outlawing Abortion Won’t Help Children with Down Syndrome. The New York Times, Retrieved from http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/

According to the most recent U.S. Census employees with disabilities, who make up 6 percent of the workforce, are earning 75 cents for each dollar others are paid. Moreover, of those people with disabilities that are employed the average salary is less than $25,000 a year.

It is also important to remember that people with disabilities often face employment disincentives because of policies that require low incomes to continue receiving services, some of which are life sustaining.

Reference:

Diament, M. (2013, March 15). Census: Income Gap Marked For Workers With Disabilities. Disability Scoop, Retrieved from http://www.disabilityscoop.com/2013/03/15/census-income-disabilities/17504/

April is autism awareness month. However, self-advocates are pushing to have it be considered autism acceptance month instead. According to those self-advocates, autism acceptance should be “geared toward inclusion, understanding and supporting those with autism” (Diament, 2013). To read more about the push towards autism acceptance month click here.

Reference:

Diament, M. (2013, April 1). With Autism Awareness Month Comes Push For Acceptance. Disability Scoop, retrieved from: http://www.disabilityscoop.com/2013/04/01/with-autism-acceptance/17609/