This month, I’ve been absolutely privileged to enter the amazing ROI Community, a project by the Charles and Lynn Schusterman Family Foundation aiming to promote and empower young Jewish leaders and changemakers from across the world. Initiation comes at the ROI Summit. It was probably the best conference event I have or ever will participate in. Even so, there were obstacles that made it difficult at times to fully access everything – and though I don’t usually write quite so honestly about my deafness, it would have been out of character for me not to have processed things rather publicly…
It’s always exciting to begin with. And then I remember that conferences and seminars are hard. I remember that I’ll be lipreading for hours longer than usual, I’ll find the piercing pain of prolonged concentration between my eyebrows screaming, “your day is over, forget the schedule”. That I won’t figure out what the question really was until I’ve already given an answer. That the lights will be too dark or too coloured and I switch precariously to listening as luminous shadows distort the faces around me. My neck will hurt as I twist around trying to see others in a room when we speak collectively. Some people have accents or moustaches. I’ll nod – smile when others do, gear up to laugh when I see intake of breath. That there’ll be background noise my brain doesn’t filter out for me. There will be speeches but I won’t always know what language they’re in. That heavy vibrations from loud, loud music will flood my body and tire it. The boom of artificial noise through my hearing aids. Is that what the birds sound like here? How many people will I call by the wrong name? There will be moments when everything is too quiet before hours when everything is too loud. I’ll manage my expectations, I’ll get sixty, seventy percent of this session maybe? Eighty percent of the next? I remember that I’ll be exhausted and everyone else will say they are exhausted too, because nobody notices and nobody knows. I’m the same on the outside so everything on the inside must be the same too.
I’m excited and call my parents and ask them, “guess where I’m going next?” They’ll Google the hotel and we’ll agree how lucky I am, and they’ll remind me to pack my hearing aid batteries and for God’s sake, will I just get round to renewing my travel health insurance? I tell them that I’ll get to it while wishing they’d do it for me. OITNB is dropping on Netflix so my priorities are different.
I fly without my bra and my aids and it’s the best. The patriarchy, crying babies and roaring engines don’t exist. The sound of life dulls and all I have to do is look out the window. We’re flying low so I can see snow-topped mountains that look beautiful and really fucking cold.
I arrive at the conference and the deaf sitch list pops up in my head again; in the back of my mind I worry what will happen if I don’t hear. I know it’s happened before and will happen again and I’m not afraid to ask for help so I keep smiling – people will care more if I make a good impression, right? Everyone is impressive and I’m not sure that I should be here too. Maybe I shouldn’t have turned down those jobs, I have no answer for “who are you, what do you do?” yet. I introduce myself as an activist, smooth my shirt and make a deal with God that if He makes me look less fat I’ll probably bring something to the synagogue potluck dinner next time.
ROI kicks off and I realise there are other people with disabilities here and they’re powerful. More powerful than me and they know themselves inside out and they know how to speak about it and I don’t know how to feel without a microphone or within myself. Maybe I wasn’t alone all this time, maybe today I don’t have to be the poster child. They don’t try to make people laugh to diffuse tension when they talk about disability. Do I need to either? Is the tension real or mine?
The days are long and I think people are uncomfortable when I tell them about the pain between my eyebrows. I think they don’t understand but then when I am at the bottom of my pit of fatigue I find out there’s another one who they say is just like me. I think that it isn’t true because no one really understands what it’s like to be me, right?
She speaks up and I hear my story in her words, I realise I was wrong and I feel deeply, deeply sad. It occurs to me that maybe all along I could have had friends who stood one foot in the hearing world and the other in another, quieter one. Maybe they came knocking but I was so busy thinking about my list of memories that I didn’t hear their knuckles tapping on the door. It feels like I got a flashing light alarm instead of a doorbell but I’m still not sure how I feel. Why didn’t I try harder to get here sooner?
I tell myself to be happy I have good eyeliner because it would be a waste to smudge this cat-eye. The tears make me feel less British, and I remember the mess of Brexit and a new wave of un-British feelings washes me out again. I make a mental note to check up on whether my Irish grandma has registered me as a foreign birth yet, and hope no one is taking the wrong kind of photos. This is a new dress, l got nut butters for my birthday, and I don’t trust how my body looks in it yet.
During all the goodbyes I feel embarrassed, and I realise there’s a lot of things that I don’t really trust yet, even though I’m beyond grateful for the new friends and lessons I’ve gained. On the flight home I start to think that maybe that’s ok. Maybe for now, confusion is best.