“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.”

After chatting with the father from Spain, I made my way to lobby and began chatting with the conference coordinator, a nervous young man in his early twenties.  I planned to head to the meet and greet for family members, which had just begun.  It seemed like a great way to relax, meet other attendees, and see if anyone was interested in my research.  I mention it to the conference coordinator.

“Ohhhh,” he says.  Pause.  I feel him searching for the right words.  “The mixer?  Well, that’s just for family members.”

“Right,” I reply.  He nods.  “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.  “A sibling?  Who?”

Now I’m the startled one.  “What?”

“Who’s your sibling?” he says.

“What?”  I repeat.  He’s staring at me hard, but I cannot read his face.  Does he want a name?  Some sort of verbal proof?  I dutifully tell him my sister’s name.  It’s more of a question than a statement.  I’m quite certain that he doesn’t know my younger sister.  “She doesn’t live here.”

“Oh,” he says.  “Well, the mixer is just for family members who are at the conference.”

“Right,” I say.  What’s happening here?  I’ve seen maybe three children at the event.  It’s virtually all parents, with a few siblings and professionals in the mix.

“So, you know…” he trails off.  “But I can go check and see if there’s space for you.  I don’t know how crowded it is, but maybe if there’s room?”

I’m beginning to steam.  Does he think I’m making it up?  Breathe, I remind myself.  Do not lose it.  I paste on my toothiest smile and say. “That’s okay, don’t worry about it.”

“Are you sure?” he asks, visibly relieved.  “I’ve had to bounce some folks and break some hearts today.”

It’s an odd response.  “No, it’s fine,” I tell him.  “I completely understand.”

We part ways.  My hands are trembling and I struggle to understand.  Did I really get bounced from the family member mixer?  I vow to write about this the moment I get home, but I do not.

This was the first time that my researcher status trumped my role as a sibling, and I had no clue how to respond.  The parents need a safe space, I try to tell myself, but I don’t buy it.  I start to get mad; then, I turn vindictive.  Who the hell does this kid thing he is, telling me I’m not a family member.  Demanding to know who my sister is.  I’m flailing as I try to make sense of my failure to navigate the socially meaningful spaces of research versus personal experience.  Bounced.  Rejected.  As if these parents know anything, I say to myself.  They’ve known deafblindness for what – a year or two? – but I’ve been living it for almost 30 years.  There’s some truth to my words, but little utility.

Use.  Form.  Potential.  I need to process the exchange, to make sense of it without making it into something it’s not.  I turn back to my fieldnotes after several weeks, attempting to tease out new understandings of this brief encounter.  Nothing comes to me.


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