Our Voices are Rising: Siblings of People with Disabilities Speak Out

Siblings of people with disabilities – or “sibs” – have been a feature of the news recently, and it’s time to start paying some attention.  From Canadian skier Alex Bilodeau, who dedicated his recent Olympic gold medal to his brother with Cerebral Palsy, to op-eds in the Huffington Post by WNBA star Elena Delle Donne and Olympic snowboarding medalist Hannah Teter, sibs are speaking up.  Our stories are as diverse as our brothers’ and sisters’ disabilities, yet I am always amazed by the near automatic connection I feel with most siblings.  Often, it resonates before I even know of their brother or sister.  I simply pick up on a shared something, a certain chemistry that I don’t quite understand initially.  Once they mention their sibling status, I immediately tell them about my own sister, who was born with a rare condition known as CHARGE syndrome and is on the deafblind spectrum.  The connection is instantaneous.

Although there are nearly three million children and tens of millions of adults with disabilities in this country, there is surprisingly little good research on siblings like me.  Most existing studies manage to be both vague and alarmist, which helps absolutely no one.  Siblings might feel a heightened need to achieve, the researchers like to say.  They might resent their siblings with disabilities or experience jealousy, bitterness, or embarrassment.  It’s possible, they warn, that we might experiment during adolescence.  A highly publicized 2013 cautioned that we sibs have general problems functioning.  Now, that’s just insulting.I have read these so-called expert assessments of the sibling experience for years and they never capture my life with Katie, my sister.  This is the inevitable result of other people – psychologists, parents, and other-well meaning individuals – speaking for sibs.  Just as I cannot truly understand what it means to parent a child with disabilities, non-siblings simply will not be able to explain the world of sibs like me.  Childhood disability diagnoses are higher than just a decade ago and public awareness is beginning to increase, so it is time that siblings step up and demand to be heard.  Nearly everyone has been touched in some way by disability – perhaps the child of a family member, friend, neighbor, or coworker – and siblings can shed critical insights into these increasingly commonplace disability worlds.

Aside from the guilt, jealousy, and pressures that we are said to face, or the empathetic, mature, and ambitious tendencies we might display, siblings are united at the most basic level by a simple truth: we cannot remove disability from our fundamental notions of family.  Do I remember life before my sister was born?  Sure, I had a great first four years of preschool, Big Wheels, and chasing dogs in the backyard.  But you know what?  I continued doing those things after Katie’s birth.  Having a sister with disabilities – severe ones, no less – is the only sibling relationship I know.  It differs from the assumed norm, but it is not to be dismissed or fetishized.  “Oh, you’re basically an only child,” I’ve been told multiple times.  What could be more disrespectful to Katie or to me?  My blood boils.  On the opposite extreme, countless peers have felt that my sister enhanced my biography immeasurably, making me much more interesting that they previously thought.  “Your sister is deafblind?” I recall one guy saying with awe in my early-twenties.  “That’s awesome!”  We didn’t talk much after that.

Perhaps it is true that siblings like me are more likely to experience depression, anxiety, addiction, or feelings of loneliness or isolation, as the sibling fact sheets and research summaries love to say, and maybe I have just been lucky.  But more likely than whom, I would ask?  More likely than the typical family of real life, rather than fiction?  More likely than my peers who have grappled with a sea of personal and family challenges, some bordering on the tragic?  I am a happily married mother with an active social life and a (hopefully) budding academic career.  My biggest issue at the moment is that I almost never get enough sleep.  Perhaps I am the exception to the rule of the at-risk sib, but I’ve met far too many others like me to believe that I’m an isolated case.

My status as a sibling is not a medicalized one.  It is not a clinical diagnosis that confers a particular pathology and course of treatment.  To be a sibling is a fundamentally social identity based on love, obligation, and cultural understandings of kinship.  It is learned and anything that is learned involves teachers, both individual and collective.  For sibs like me, parents are the primary teachers.  Far and away, parents are the determining factor of sibling experience.  Parents model for us and, when they model tragedy and grief, the dutiful sibling will often follow their lead.  Siblings benefit enormously from parents who socialize them to approach disability as a form of diversity, rather than a medical tragedy.  We are less likely to experience the dreaded loneliness and isolation so commonly cited in the literature when we have strong networks of relatives, friends, neighbors, and allies in the disability community and beyond.  We do not experience shame and embarrassment about our siblings or families because these are innate reactions to disability.  We learn these responses from the world around us and, as such, parents absolutely must counter this.  For those parents who aren’t quite sure how to do this, you too can learn.  Read disability studies literature.  Reach out to other parents.  Refuse to stay at home and withdraw, to apologize when your child gets a bit too loud at a restaurant or when the teachers complain about the extra work of an IEP.  Push back against the insidious forces of marginalization that creep into so many social scenes.  Push back hard.

I will close with an eye to the future.  I am cautiously hopeful that society is becoming more accepting of people like my sister.  There is greater awareness of disability than ever before and I cannot shake the feeling that our country is just a bit more open than it was when Katie was a child.  As a sibling, I say it’s time to bust that world open in the name of social change.  There are millions of us with stories to share and it is high time that we made our voices heard.  The aftershocks might surprise us all.


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