In lockdown with special needs

Anton out for a walk during lock-down. Paris, 2020. Photo by Léa Hirschfeld..

When I understood there was going to be a COVID-19 lockdown, I called my mother to ask if I could move back home. I am 25 and have lived on my own for seven years. This was before I understood the gravity of the situation, before hospitals were flooded, before so many people started dying, before over half of the planet was immobilized, before wild animals were seen strolling down avenues, when Johnson and Trump still happily shook hands with everybody, it was just a month ago. Throughout all of this craziness, my life changed. This is how.

My main concern was not loneliness, it was that being alone is a trigger to anxiety and eating disorders which I have been battling for more than half of my life. I needed to be with someone. I needed to protect myself and be protected. I know how lucky I am to have a family that supports me always. 

Home for my parents’ is also home for my brother Anton whose needs are more special than mine. Anton has a neurological birth condition. He is autonomous to a considerable degree, but he cannot live on his own. The term “COVID-19” means next to nothing to him. We explained that there was “a virus” that was causing a lot of distress in the world and therefore Léa (me) was moving back home to be with family because from now on we would not be able to go out as we like, to see people, have a drink, go to work, kiss, hug, shake hands; we even had to make sure we were at least one meter away from people while walking on the street. All of those things that Anton and most of the world loves and needs were suddenly forbidden in order to survive. We described social distancing. 

They just did not know how to have a conversation together. Somebody had to lead, and nobody could.

There again, the expression 'social distancing' doesn’t mean much to someone who has limited capacity to reason and to give verbal expression to thoughts and feelings — someone who understands and learns through actions. Anton needs to see and feel. He needs to live a situation to integrate it and understand it. 

The truth is, social distancing is to some extent his everyday life - let alone the sanitary part. Anton does not have friends he can connect with on a daily basis to go for a drink or see an exhibit. We set up a phone date for him to speak to a friend from the group home he usually goes to everyday, but they did not get further than “Hello, how are you?” They just did not know how to have a conversation together. Somebody had to lead, and nobody could. It was heartbreaking, and heartbreakingly beautiful; they appeared so pure and vulnerable. I heard the expression “collateral beauty” in a movie, and I liked it. Anton can go to two places in Paris on his own. Two. Every single other journey out in the world requires accompaniment. Anton needs people to live. Anton needs people to survive. 

My parents dedicated their life to making sure he would find a place to fit in this world, excluding institutionalizing him from the very beginning. They knew they could only help him so far, and that he would have to do the work. When no one else believed in him, they did.

Anton showing his lists. Vermont, 2016. Photo by Léa Hirschfeld.

It did not make our lives easy at all. It made our lives very difficult actually, emotionally and physically. But they did it, they took us a very long way. I doubted everything about Anton’s capacities, even as his sister. I could not see because I was too hurt, and I never imagined we would make it as family. It was one of those impossible dreams.

I never thought I would ever enjoy living with my family. I never thought I would be busting 150 abs a day on a carpet with my brother, baking scones or teaching him how to cross the street on a one hour, authorized, lockdown escape, singing along to Beatles songs. I never thought we would stop fighting. I never thought pain could make space for deeper love. I never thought I would stop crying over all I have missed. I never thought I would have a relationship with my brother by letting him be himself, and see him as my brother and not my strange, wild, sibling whom I’ll miss forever and who makes me cry. I never thought I would just see him as simply and beautifully special, and leave all the other sabotaging feelings aside.

Anton has grown a lot in a month. He has changed. I thought he changed because he suddenly had three adults around him who showed him how to do things and who cared that he did them well. We challenged him and he developed an unprecedented consciousness of the world. But my parents have been doing that forever. The changing element was me. He changed a lot in one month because I was there. I challenged him differently and I saw the difference I could make.  

I ran away in travels. I ran away in parties. I ran away until I had no choice.

I was running away from my story until this lockdown. I ran away in endless conversations and monologues, I ran away in travels, I ran away in parties, I ran away in work, in therapies, in living a fast life, I ran until I had no choice but to live with my greatest pain, and it turned out to be the life changing experience I needed. 

Now this is a sketch of many visible and invisible moments that happened and that I would like to share too. Nothing prepares you for life, but encounters can give it a whole other meaning.

The world of special needs is a challenging and miraculous place, and we need to talk about it. For people who are 'different' and for their families. Mothers, fathers, brothers, sisters, uncles, aunts, cousins, grandparents, spouses, partners. Living with such incredible beings, physically or in our minds, is very difficult to put into words. It holds so much. All of us, we, imperfect beings, have feelings we cannot control. We need examples, we need models, we need support, and it is showing in unprecedented ways throughout the planet today. 

WE CAN MAKE A DIFFERENCE

Thank you for reading all this way. I can finally tell you the purpose of this storytelling. It is a question: WOULD YOU LIKE TO SHARE YOUR STORY WITH ME? I would love to hear it, and talk about it. You can be anyone; my only requirement is that your story relates to the subject of special needs.

My goal is to gather personal stories related to our special needs and abilities world and make a written and visual documentary about it.  

Brother and sister at the Arts Cafe. Montreal, 2016. Photo by Jonathan Hirschfeld.

I would like to do this through any type of visual communication — FaceTime, Zoom, Skype, whatever works. And if you don’t feel comfortable speaking to me live, you can send me vocal notes answering questions I have prepared for you. It is important for me to hear your voice. 

If you would like to be a part of this journey, please reach out to me here: www.leahirschfeld.com

Your participation can stay confidential.

With love, truly,

Léa Hirschfeld

LÉA HIRSCHFELD describes herself as 'a work in progress' — writer, photographer, storyteller, and world traveler. She lives in Paris.