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.

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.

Anthropology of Disability: Summer Reading

The past few years have seen a wave of new studies relating broadly to disability and the body, and I’m woefully behind on my reading.  Although many of the books listed below are not by anthropologists, they relate closely to many of the dominant themes in my work and would likely be useful for anyone interested in the anthropology of disability.  Here’s a closer look at my summer reading list, in no particular order:

A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan (Karen Nakamura, 2013)

The Question of Access: Disability, Space, Meaning (Tanya Titchkisky, 2011)

Don’t Call Me Inspirational: A Disabled Feminist Talks Back (Harilyn Rousso, 2013)

Staring: How We Look (Rosemarie Garland-Thomas, 2009)

Raising Henry: A Memoir of Motherhood, Disability, and Discovery (Rachel Adams, 2013)

Sex and Disability (Robert McRuer and Anna Mollow, 2012)

Feminist, Queer, Crip (Alison Kafer, 2013)

Additional suggestions are welcome and encouraged!