The Diner

“Aunt K. used to be happy when she was young. Now, she’s angry.”

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Aunt K.’s doll avatar, as imagined by a three-year-old..

My head snaps to the side, surprised by my three-year-old son’s statement during his after-school snack. Had he gotten this from me? Undoubtedly. Aunt K., my younger sister and his only aunt, has Charge syndrome and is largely isolated from the world around her. She has no community activities, and interacts almost solely with my parents, the staff at her house, and her roommate. She and I connect less and less with each visit. The erosion of personhood is a curious thing to witness.

She used to be happy when she was young. Now, she’s angry. It’s an oversimplification that glosses over many years in the middle, but it’s not incorrect. I would not say she’s angry, though. I would say done. Now, she’s done.  Continue reading

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Siblings and Disability – Part II

This is the second installment in a two-part series about siblings and disability. The first part can be found here.

What does Disability Mean for Typical Siblings?
First things first, I want to be very clear about one thing: existing research does not support the widespread assumption that having a brother or sister with disabilities leads to negative outcomes for the typical sibling or that it is an inherently negative experience. It simply does not support this claim. More to the point, the literature indicates that, as a group, siblings cannot be distinguished from their peers. (See this piece for more.) Moreover, one finds no causal link between disability and negative outcomes for siblings. This is critical.

Perhaps a more interesting question is this: why do some siblings have negative experiences a while others do not? What is the role of disability here? What might this teach us about facilitating positive sibling experiences with disability? How might this enrich understandings, both scholarly and applied, about families and disability?

Disability, Behaviors, and Sibling Experience
It is important to note that research indicates a possible link between negative sibling experiences and the presence of behavioral challenges in the brother or sister with disabilities. Sadly, based on my personal experience I can say – anecdotally – that this resonates. My sister’s disabilities became a much bigger challenge for me once she became self-abusive. It was difficult to take her to many public places, as she was prone to throwing herself onto the ground, banging her head, and getting into an emotional and bodily space that was difficult to break.

While I was never overly concerned by the responses of strangers, I simply did not feel comfortable showing letting most of my friends see this. It was too unsettling and, to be honest, violent. Did this place additional strains on me as a sibling, particularly as I moved through the social mazes of high school? Absolutely. By the end of high school, I essentially did not let anyone in the door if Katie was awake. This is tragic and should never have had to happen. Did it have a lasting impact on me? Nah. But if I could do it over again I would make sure that my childhood friends had maintained their relationships with my whole family as we got older. With supports, knowledge, and communication, I believe that our isolation could have been mitigated.

Moving Forward: Key Points Regarding Siblings and Disability
Ultimately, what do we know about the brothers and sisters of people with disabilities? Not enough. But there are some positive glimmers. In a nutshell, here’s what I would say:

First, disability must not be mistaken for the primary determinant of a sibling’s well-being. Families are complex, as are individuals of all ages. We have the right to this complexity in all of its messiness, quirks, strengths, weaknesses, successes, failures, difficult spells, mistakes, and chance. It is a fallacy to explain a particular trait or tendency in terms of having a sibling with disabilities. This has been used all too often as a scapegoat and, frankly, I’m tired of it.

Second, more studies need to focus on – or, at least, include – siblings. That’s it. We need to know more.

Third, research must account for the diversity of family types and individual experiences. We need to unpack big, scary categories like race, ethnicity, and class. These are all too often ignored or glossed over in disability research in general, which I see as a massive problem. Our work must reflect our world. As a researcher and a sister, I have to stress the diversity of both family setups and sibling relationships. These are not monolithic categories, which makes (or should make) it difficult to generalize. For instance, my experience was shaped significantly by the fact that my sister is my only sibling. Also, we were four years apart. Someone with a sibling 10 years younger would likely have a different dynamic.

Four, just like parents, siblings deserve access to a community of peers. We must not be isolated. Family disability organizations need to prioritize sibling programs – not just once a year at the retreat, but as a regular and ongoing feature.

Five, siblings need self-determinism and independence. We need to be able to speak for ourselves in the literature, rather than continue to be told how we should think/feel/act. We need to muddy the waters and break out of the biases that continue to skew assumptions of what it means to have a brother or sister with disabilities.

Siblings and Disability – Part I

Disrupting Assumptions and Digging Deeper
Growing up with a sister who had CHARGE syndrome and was deafblind, there were many times when I felt alone in my experience. While I did not know other siblings in similar situations, there was never a shortage of adults who thought they understood how my sister had impacted me. For instance, I was “supposed” to feel jealous of the attention she received or anxious that I, too, might somehow contract her disabilities. Those are the two that stand out in my mind, but I recall a slew of well-meaning “experts” – whether in person or in the literature on families and disability – whose models of “typical” experiences for typical siblings never matched my reality.

I am now a disability researcher and, although my work does not focus on siblings, the topic remains important to me and is one of my many side projects. Below, I want to dispel a few myths about sibling experiences. This is the first in a two-part series, so please spread the word and stay tuned. I welcome comments from other siblings and am happy to share more of my work and thoughts on the subject, upon request.

Why Siblings?
Siblings are a neglected topic in the disability research, despite the fact that the sibling relationship can easily be the longest one many of us have. Why have we been so largely neglected in the literature on families and disability? While it is widely recognized that parents of kids with disabilities need to connect with other moms and dads in similar situations, this is all too often overlooked for siblings. As someone who never connected with other siblings until adulthood, I’m going to say categorically that this is not acceptable. Everyone deserves to know that they are not alone.

Why Now?
The contemporary social and historical context of disability has created a new era of long-term sibling experiences. As Americans with disabilities live longer, there are new roles for brothers and sisters. We are in the age of de-institutionalization (except in Texas, ahem!) and community living, which means that many adults with disabilities now have different living arrangements than in the past. Finally – and I cannot stress this enough – social media has engendered levels of organization and community formation among siblings that were unimaginable until quite recently. Siblings can connect with one another, network, share stories, brainstorm, and disseminate the critical knowledge gained from their experiences.

Existing Literature: Issues and Inconsistencies
When studying this body of literature, the first thing we see is a history of scant attention to typical siblings. What’s that all about?! (I have some thoughts.)

The next and perhaps most salient trend that emerges is the widespread assumption that having a sibling with disabilities is a negative experience. But based on what evidence? As someone trained in research methods, I have serious questions about many of the existing studies. All too often, I see siblings of people with disabilities pitted against a hypothetical, ideal sibling relationship – one I have rarely witnessed in real life. For instance, researchers lament the lack of emotional closeness between typical siblings and their brothers or sisters with disabilities. But how do they define closeness? What do we mean hereby intimacy and condoned or socially validated relationships? And are we so certain that typically developing siblings share such innate intimacy? These questions demand further inquiry.

I am also concerned by the fact that positive sibling outcomes are not prioritized in much of the research. Again, this relates to the underlying assumption that disability is an innately negative experience likely linked to (or correlated with) undesirable outcomes. Any good researcher knows that, if you go looking for a particular outcome you can likely find it. In regard to much of the work on siblings, I suspect this is precisely what has happened.

The next post in this series will outline some perhaps surprising findings about sibling experiences, as well as critical areas for future research. Stay tuned!

Silence and Noise

Confession time: I’ve been unable to write for the last two months. It’s been a time of side projects and talks, plus lots on the personal end, but in terms of disability writing I’ve done virtually nothing. What I did complete was somehow deleted by Scrivener, which, in my writer’s block haze, I took as an obvious sign that I shouldn’t be writing. So I took a break.

After spending over a year doing continuous research, I found myself frozen in a state of paranoid introspection. Why was I doing this at all? Why dredge up my own memories of rare and undiagnosed disability in the family? What if people found out that my sister and I have grown sadly distant – that I live hundreds of miles away and, within the parameters of her abilities, I do the best that I can but have a nagging awareness that our modern relationship fails her? Would I have to face my own terror about what will happen in the future, when my parents can no longer help with my sister, when she finds herself in a city with no kin and few personal connections (somehow, after 30 years), and here I am in one of the absolute worst states in the nation for adults with disabilities? Continue reading

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.

More Than Just “Typical”

A curious thing happened to me recently.  At a meeting of disability parents and professionals, I began chatting with a father about my experiences with Katie.  He was clearly interested, as are many parents when they learn that I’m a sibling, and I felt the security of the instant connection I encounter with so many family members.  He spoke of his second daughter, who is much younger than his child with disabilities.  “It’s almost as though she doesn’t notice the disability at all,” her marveled, “yet I know she knows.”  I nodded, not very surprised.  I tell him that that’s the way it is as a sibling.  “For me,” I said, “ disability was all I knew.  Having a sibling with disabilities was all I knew.  My family was just…” I paused, searching for the right word. It takes a moment. “Normal.  It was just normal.”

“Typical,” a voice quickly corrects me from the side.  “Typical,” echoes the father, a half-step behind.  “Typical,” I repeat dutifully.  And then I pause.   Continue reading

Bounced

“But I’m a family member.”  He gives me a blank look.  “A sibling,” I clarify.   “Really?” his eyes widen, surprised either at my statement or at his failure to recall.  I nod and smile, assuming the situation is settled.  I’m mistaken. 

I cannot believe that I got bounced from the family mixer.  I don’t even know what to think about it.

I find the words waiting, fieldnotes that I forgot I dictated after attending a disability conference for families and professionals.  I recall feeling so energized after attending a session on family, rights, and community inclusion, presented by a father from Spain.  I approached him afterward and introduced myself.  I explained about my research and touched on my family background as I always do – just enough to assure parents that I, too, am coming at this from the inside.  A few minutes in, we realized we had some friends in common in Guatemala, Argentina, and Boston.  “Of course we know each other,” he said, once we discovered the mutual connections.  “We are all family members.”

Continue reading