Call for Participants

I am currently conducting extended qualitative research for my dissertation in anthropology and I am looking for parents, siblings, family members, caregivers, allies, and professionals who would be willing to participate in a short interview about their experiences with disability and diagnostic journeys.  My work examines changing understandings of multiple disabilities, and I am especially interested in rare and undiagnosed syndromes.  What does it mean to be part of a small or unrecognized disability population?  How can it be that up to 40% of all children with disabilities lack a clear diagnosis, yet there is such little knowledge of their experiences or those of their families?  What might society learn from your story and your family’s diagnostic odyssey, or from your insights or struggles as a professional serving this group?     

My research and goals are intimately shaped by my experiences as a sibling, since my younger sister has CHARGE syndrome.  CHARGE occurs in approximately one in every 8,000-10,000 births and is now a leading cause of deafblindness, yet very little was known about the diagnosis when my sister was young.  She lacked a diagnosis for much of her childhood and seemed to fit in nowhere.  I now know that stories like ours are far from unique, and I am deeply committed to using my work to gain a better understanding of and also spread awareness about such complex encounters with disability and diagnosis.  

My research is grant-funded and I have received IRB approval from my home institution, The University of Texas at Austin.  Unless specifically requested by participants, I will use pseudonyms for all interviewees in any notes, publications, or presentations based on this research to ensure anonymity.  

If you have any questions or would be interested in speaking with me, please contact me at emlewis [at] utexas [dot] edu.  Your participation is greatly appreciated!    

Thank you!

Rethinking Inclusion

Please check out my new piece for BLOOM, “In The Community, But Alone,” on the incomplete project of community living efforts for adults with ID/DD and multiple disabilities.  True social inclusion is much more than living in an anonymous house in a neighborhood!  

I am so grateful for the relatively recent development of government programs to ensure that people like my younger sister are no longer warehoused in institutions.  Still, there is much work to be done.  Individuals and their families deserve a much fuller form of social inclusion.  There is irrefutable evidence that social connections make us happier, healthier, and safer, and, as I see it, benefit society as a whole.  

I welcome any feedback on the piece, including ideas for how to effect on-the-ground changes.  That’s the goal, after all.

Let’s Talk About Sex (and Disability)

I will begin this with a disclaimer: my research does not focus on sex.  It’s simply not my area and, for whatever reason, the subject hasn’t pulled me in as a scholar.  That said, sex and sexuality have been recurring themes in my dissertation fieldwork.  People want to discuss them.  Parents, families, educators, psychologists, physicians, policy folks.  As with any population, sex talk in the context of disability brings up anxieties, curiosities, and questions; it sparks discussion of risk (real or imagined), agency (ditto), gender, health, and the unknown.  While none of this is unique to a particular group, the lack of space for conversations surrounding sex and disability as a whole gives pause.   Continue reading

Autism And Alcohol: reflections on an anniversary

lizlewisanthro:

A beautiful piece on the intersections of alcohol, parenting, disability, and everyday life.

Originally posted on Living with Autism:

The Old Horns, Bradfield

I often mention pubs in my posts about living with autism. Perhaps I should clarify: Dylan’s drink is a pint of blackcurrant cordial made with tap water and served with ice and a straw. Dylan won’t touch anything with bubbles, or even a barely perceptible fizz, nor will he drink anything which is warm or tastes bitter. This leaves only water and non-carbonated soft drinks. As there are also rules about juice (no bits, cloudiness or tropical fruits) Dylan is limited to apple juice at home and blackcurrant when he’s out. There is no danger that he will ever be drunk or addicted to coca cola.

Dylan’s interest in pubs is, I think, primarily social. He enjoys the ambience of a pub garden in summer and an open fire in winter. He likes the quiet hum of voices and the sudden bursts of laughter, the activity…

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Guest blog post: ‘Coming to terms with disability’ by Meriah Nichols

lizlewisanthro:

Check out this guest blog post by Meriah Nichols on the always amazing Disability Visibility Project’s blog!

Originally posted on Disability Visibility Project:

There are so many awesome bloggers who write about disability. The Disability Visibility Project is fortunate to have several as our media partners. One of them is Meriah Nichols, creator of A Little Moxie blog.

Screen shot from A Little Moxie blog: http://www.meriahnichols.com

Check out one of her recent posts, “Coming to Terms with Disability in My Life”:

When I first see that phrase, I get an image in my head of a body wrestling with this unknown blob and the blob is “disability”. It’s like, we have this notion in our culture that “disability” is this big baddie, this sick, weak, unsexy unknown – and that we need to ‘overcome’ it, wrestle it down to the ground, stand with our foot on its chest and proudly say something Scott Hamilton-ish like, “there is no disability in life but a bad attitude.”

Or… we get to some point where we see the value in what people with…

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Week in Review: 06/29 – 07/06

Sports, National Heroes, and Recognition of Difference

Disability issues loomed large in the news this past week, thanks in part to the incredible performance and surge in popularity of USMNT goalie Tim Howard at the World Cup.  I wrote about this in my recent post, Let’s Talk About Tim Howard, which includes a collection of links to recent media attention to this brilliant athlete who also happens to have Tourette’s syndrome.

The State of Special Education

DisabilityScoop published an important piece for anyone interested in the educational realities of children with disabilities, “Most States Deficient in Special Education.”  The U.S. Department of Education has announced new measures for assessing special education performance at the state level.  Based on data from the 2012-13 school year, a mere 15 states meet the current requirements.  California, Delaware, Texas, and the District of Columbia received a “Needs Intervention” classification.  These data were released in conjunction with Arne Duncan’s announcement of significant changes to come in the oversight of special education, which you can read about here and also in a more nuanced piece here.  The Huffington Post also published a piece on topic here.

Does Disability Make Somebody Homicidal?  Answer: No! Continue reading

Disability Visibility Project- Interview with Alice Wong

lizlewisanthro:

An excellent interview with Alice Wong about the fantastic new Disability Visibility Project.

Originally posted on Criptiques:

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Alice Wong

What is the disability visibility project and how did it get started?

Disability Visibility Project: A Community Partnership with StoryCorps is a year-long grassroots campaign encouraging people with disabilities to record their stories at StoryCorps (3 locations: Atlanta, Chicago, San Francisco and a mobile tour) celebrating the upcoming 25th anniversary of the ADA in 2015.

As a public radio nerd, I love listening to NPR and one of my favorite segments on Morning Edition are stories from StoryCorps. Last year StoryCorps San Francisco had an event at the Contemporary Jewish Museum where they brought together the actual people featured in some of their most popular stories. At the event the presenter talked about community partnerships and it made me think about the disability community. I went up to someone from StoryCorps and asked whether they had any current community partnerships with a disability organization and they said no. I…

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Let’s Talk About Tim Howard

For perhaps the first time ever, it seemed like the whole country had World Cup fever last week.  The U.S. Men’s National team was doing great, the media was abuzz, and massive watch parties popped up in major cities.  It was a far cry from the 2006 games, when I watched with friends in empty Chicago bars.  I distinctly remember one game where two valets kept popping in, fingering continuously shifting sets of keys as they sipped Coronas in between retrieving peoples’ cars. Continue reading

Sibling Resources

I’ve had sibling issues on my mind recently.  This week, I am so excited to have the opportunity to meet the writer Rachel Simon, whose memoir Riding the Bus with My Sister  traces her relationship with her sister, Beth, who has intellectual disabilities.  Riding the Bus is something of a modern classic in disability literature and is particularly notable for its focus on the sibling relationship over the life course.  It is truly a must-read.

In addition to this upcoming event, I have been reflecting over a recent (impromptu) conference discussion I led on sibling issues.  I was volunteering at the annual disability conference last weekend when the scheduled speaker canceled at the last minute.  I received a call asking if I could fill in as I drove to the event, literally 20 minutes before the panel was to begin.  Although I was unprepared, in terms of handouts or anything beyond a vague outline of what to discuss, I felt pulled in my the audience.  There were mainly parents, which intrigued me, but a few adult siblings also spoke up.  I would love to help create more local spaces for sibling voices, moments for us to share our thoughts and experiences without having the narratives shaped by others.

There is so much to learn from us, both about disability dynamics in the family and also, more generally, about what it means to be a sibling.  I am adamant that disability sibs must not be pathologized – marked with a big red ‘D’ for disability! – since I am unconvinced that our anxieties, sadness, confusion, or other responses are distinctive to the disability experience.  I struggle with toeing the line between acknowledging the specificities of my sibling experience while refusing to be other-ed, to be set apart from the supposed mainstream.  Are aspects of our lives distinctive and do we perhaps feel underlying connections with other sibs?  Sure, at least some of the time.  Does that make us fundamentally different from our peers?  Does it follow that we should define ourselves – or our families, for that matter – largely in terms of disability, to mark ourselves as “different” from the mainstream?  Absolutely not.

Below, I’ve attached a short list of online resources for and about sibs, which I will be sending out to the people who attended my recent panel.  It is worth noting that nothing like this existed when I was young (if only because the internet was in its infancy!), yet I vividly recall longing to find a community of other sib.  Empowered, honest, questioning sibs.  Sibs living full lives, sibs who insisted on carving a space for themselves.  If you know anyone with children or other family members with disabilities, please send these resources their way.

 

Resources for Siblings of People with Disabilities

Sibling Leadership Network

The Sibling Leadership Network (SLN) seeks to provide siblings with information, support, and advocacy tools. Their website has a wealth of good research on the sibling experience, which might be of interest to both siblings and parents. It also includes a list of blogs by sibs.

The SLN has this resource page for information regarding young sibs, including the link to its SibKids listserve. It also has this page for information for teen and young adult sibs, and hosts SibTeen, a private Facebook page for sibs in this age group.   For adult siblings, SLN resources can be found here. SLN cohosts SibNet, a fantastic listserve for adult sibs, with the Sibling Support Project.

SLN has an active Facebook and Twitter presence.

Sibling Support Project

The Sibling Support Project (SSP) is a national organization directed by Don Meyer, who is essentially the guru of all things sib. I would strongly encourage parents and siblings alike to learn more about this group, as this type of resource would have been an incredible to asset to me when I was younger. No sib should feel like they are alone or like their experience is singular; groups like the Sibling Support Project help ensure that sibs can come together and not fall into feelings of isolation.

Don Meyer and the SSP are best known for their SibShops, a trademarked model of sibling support and celebration. Click here to search for a SibShop near you. (For those of us in the Austin area, I should note that SibShops are fairly limited. I would love to see these expand in the coming years.)

SSP offers a short list of sibling-related books and movies here and also information regarding disability-related websites and resources here. It also maintains an active Facebook page.

BLOOM

This fantastic Canadian magazine and blog for family members of people with disabilities has an excellent collection of pieces devoted to sibling issues.  In terms of disability publications, I find BLOOM to be such a breath of fresh air.

The Arc

The national branch of The Arc hosts a National Sibling Council, which you can learn about here.  This offers networking and support opportunities, primarily for adult siblings.    

Sibs

This UK-based organization is another excellent resource for siblings, as well as for parents who are curious about the sibling experience.  The UK has long been a hub of innovation in disability research and scholarship, and this is no exception.

Growing Disability Studies

I would encourage anyone who is interested in disability studies at all to read the current issue of Disability Studies Quarterly (DSQ).  Edited by Alison Kafer and Michelle Jarman, this special issue focuses on the theme of growing this exciting interdisciplinary field.

If you are curious about the articles – which are all open access, by the way! – please check out my write-up on the special issue for Somatosphere.