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!

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4 thoughts on “Siblings and Disability – Part I

  1. Our daughter is 9 and has autism. Her 8 year old sister goes to a great program called the Young Carers Program. It’s for kids who have a family member with a severe illness, a disability, a mental illness – any condition that would cause more than the regular amount of family stress. It’s a great program where kids can meet other kids in the same situation, have a space that’s all theirs, do fun activities and learn strategies to help them look after themselves.

  2. I’m so glad your daughter has access to such a great program! I wish there were more sibling initiatives around the country, since it’s such a critical area. I’d love to hear more about Young Carers!

  3. Pingback: Siblings and Disability – Part II | Disability Fieldnotes

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