Maya Sinclair lives with an extremely rare genetic condition. At six months old, she was diagnosed with Axenfeld-Rieger syndrome, which stunted her growth, kept her teeth abnormally small and forced her to have multiple eye surgeries for glaucoma.
Despite these challenges, and being bullied for them at school, Sinclair has written two children’s books, spoken publicly about her condition, danced competitively and starred in a recent documentary. And she’s only 12.
On Feb. 16, she and her documentary costars are taking part in an event in Montreal for Jewish Disability Awareness, Acceptance and Inclusion Month. They’ll be talking about Sinclair’s challenges and what it was like making the film. To give a sneak peak, she joins The CJN Daily with her mother and their rabbi to discuss what life has been like with this rare disorder.
What we talked about:
- To attend the Zoom interview on Feb. 16 with Maya, the rabbi and her mother, register at jlive.app/events/1540
- Watch all four episodes of Becoming Big on YouTube
- Find Maya on Facebook and Amazon
Read a transcript of this episode:
Note: Transcripts are generated automatically by a computer. Because we can’t always read them through entirely, they may contain some errors.
Rabbi Mark Fishman and Maya Sinclair:
What are some of the things you’re looking forward to about your bat mitzvah? I’m excited to see all my friends because some of them I haven’t seen like over a whole year. I’m excited to see family.
Ellin Bessner:
That’s a clip from the documentary “Becoming Big”. It’s about twelve year old Maya Sinclair of Montreal. They follow her on her journey to becoming a bat mitzvah. Maya lives with an extremely rare genetic condition. It stunts her growth and also affects her eyesight and other things. “Becoming Big” shows Maya as she studies with Rabbi Mark Fishman of Beth Tikvah Synagogue in Dollard Des Ormeaux, Quebec, and brings the cameras right into her big day last November. The movie is gaining wider attention for an already accomplished teenager. Maya has written two children’s books. She dances competitively, and this Wednesday, she and her costars in the film are part of a Jewish Disability Awareness, Acceptance and Inclusion Month event in Montreal. They’ll be talking about her challenges and what it was like making the film.
Maya Sinclair:
Bigger doesn’t really mean in size, but it means, like, developing for me. A lot of people think of me as small, if you’re talking about being a bat mitzvah, I feel very excited.
Ellin Bessner:
I’m Ellin Bessner and this is what Jewish Canada sounds like for Wednesday, February 16, 2022 welcome to the CJN Daily, sponsored by Metropia.
Maya Sinclair was diagnosed with Axenfeld-Reiger Syndrome when she was six months old. It’s not a Jewish genetic disease and nobody else in her family had it. Her medical problems are a lot for any child to handle. She’s had multiple eye surgeries for glaucoma, and she’s been bullied for being smaller than the other kids in her grade. Two years ago, Maya wrote a book about what it’s like going to the hospital. It’s called Operation Eye.
Her second book came out soon after. It’s called “Shining Star”, about her wanting to be a dancer like her older sister Erin. Coming up, Maya and her mother and their Rabbi will be here to talk about the new film “Becoming Big”. But first, here’s what’s making news elsewhere in Canada right now.
Primrose Madayag Knazan:
I’m Primrose Madayag Knazan in Winnipeg, Manitoba, and this is what Jewish Canada sounds like.
Ellin Bessner:
Canadians are being asked to take part in the first annual National Kindness Week this month. The Canadian government passed a law in June establishing the third week of February as Kindness Week. It’s in honour of the late Ottawa Rabbi Reuben Bulka, whose brainchild the initiative was. Bulka died shortly afterwards of cancer. On Tuesday, his son, Shmuel Bulka, and an old friend, Senator Jim Munson, held a media conference to invite people to do acts of kindness, especially now, as the country is dealing with the truckers protests and political division over covert measures.
And joining me now from Montreal are Rabbi Mark Fishman, Maya Sinclair, and her mother, Janet Popliger.
Why don’t you tell me and anyone can start how this all came about.
Rabbi Mark Fishman:
Every bat mitzvah girl that comes in learns with me in the course of this very special learning. I thought it would be a powerful idea to capture aspects of this journey along the way on video. And that led to the creation of a documentary titled “Becoming Big”, where we explored what it means for Maya to become a but mitzvah, what it means to become big in the eyes of Judaism.
Ellin Bessner:
Maya, if we can talk a bit about the process of going through the documentary, what was that like for you? Did you have to memorize lines? I mean, besides your speech and everything that you gave ins hulk?
Maya Sinclair:
No I didn’t have to memorize lines. We would basically meet up once in a while to do the video, and the rabbi would ask me questions and I would have to answer them.
Ellin Bessner:
So was it a lot of Take 1, Take 2, or you nailed it right at the beginning?
Maya Sinclair:
Well, there was no Take 1, Take 2. He just didn’t stop filming. And then they just edited it with bloopers.
Ellin Bessner:
With the bloopers. What was your most embarrassing blooper?
Jana Popliger:
I dont think you had any.
Maya Sinclair:
(Names two friends).
Jana Popliger:
Your friends did and my mom did. My parents did. They were asked about Maya’s name, and they both blanked on who she was named after. (Laughing).
Ellin Bessner:
People got nervous. Were you guys nervous about having cameras around Maya and all this?
Maya Sinclair:
Yes and no, because I’m used to cameras because I’m a dancer, so I’ve performed in front of like, a thousand people.
Jana Popliger:
She’s used to performing. So it was okay.
Ellin Bessner:
The dress, the makeup, the hair that you had on your big day. I really love the shoes! I want a pair, just like you and your mom had, the sparkly shoes! I had to wear boring black patent leather ones on my bat mitzvah. I did watch the film, and of course, the speech that, the D’var Torah speech that you gave, Maya, it impacted me a lot when you mentioned the figures from the Torah, Moses, people that walk with a limp, people who stuttered. How did you make the decision to talk about that? And what did that mean to you to highlight those characters from our religion?
Maya Sinclair:
Well, my mom and the rabbi had a meeting, and my mom asked me if I wanted to do that, and I said “Yes” because it sounded interesting. And my mom said that they had like, disabilities, so I wanted to learn about them.
Ellin Bessner:
We hear about great leaders in the Torah, great stories, but we don’t know much about, it’s, not taught much about the disabilities that people have in the Torah. Where do they fit in, if at all, in Jewish culture?
Rabbi Mark Fishman:
I think that the messages in the Torah are there for all to learn, and it is a case of, to what degree do we stress and focus on certain values at the expense of others? And I think it’s actually a reflection of our community. That what is taught and what is not taught promotes the values that we feel are a part of our ordinary, acceptable life. So it was very natural and ordinary for me to discuss those aspects of how they are portrayed in the Torah.
Ellin Bessner:
Since the video has been played, how has the audience received it? What feedback have you had?
Jana Popliger:
The response has been really overwhelmingly positive. And people have told me, “Oh, Maya is so inspiring”, and “It really puts things into perspective for us” and things like that. For me, I always find Maya inspiring. She’s an incredible, incredible girl. It’s really an honour to be her mom. So it was really nice to know that now other people have a chance to see how amazing Maya really is.
Ellin Bessner:
Let’s move away a bit from the documentary and talk a bit about, Maya, your books and your writing. Tell us a bit about the inspiration for your books.
Maya Sinclair:
The book Operation Eye, and it was my first eye surgery, and I was scared, so I wanted to help other kids that need surgery be less scared. And that’s basically how I wrote it.
Ellin Bessner:
And then about your dance book?
Maya Sinclair:
Well, I have like a special dance category at a dance competition for kids with physical challenges and developmental challenges, and I wanted to write about it.
Ellin Bessner:
How have you been able to promote sales? What challenges have you had?
Maya Sinclair:
I don’t promote.
Jana Popliger:
It’s been very hard. The publisher was supposed to organize a book signing, but because of all the restrictions, we weren’t able to. And then we were actually thinking of doing something about a month ago, but then COVID, of course, resurfaced. And then we had news of Maya required a bit of an emergency surgery. So that sort of derailed us. She has her own Facebook page and word of mouth. And of course, I’m hopeful that once things resolve reopen, we will be able to have a book signing. I think it would be great because all of the money from the books, we don’t keep any of it. It all goes to two different charities, (Dr. Clown, and Camp Simcha) and I want those organizations to benefit.
Ellin Bessner:
So is there going to be summer camp this summer in person? Is that going to be a thing? Are you going back to camp?
Maya Sinclair:
CAMP SIMCHA!
Ellin Bessner:
So that’s a yes.
Maya. Popliger:
She hasn’t been to Camp Simcha in two years because of the pandemic, but she can’t wait to go back. I don’t know if you know about Camp Simcha, but it’s the best place, so special there, and obviously
Maya Sinclair:
I actually feel like I’m normal.
Jana: Popliger:
Say it.
Maya Sinclair:
I actually feel like I’m normal there because everybody is like me.
Jana Popliger:
Everybody has something.
Ellin Bessner:
So what does that look like, feeling normal?
Maya Sinclair:
Well, I’m not the only kid that’s weird-looking (laughing) because everybody there has, like, some in wheelchairs, some are missing body parts, some are blind.
Jana Popliger:
I think Maya really struggles a lot with feeling different. Appearance wise. She feels very different. She is much smaller than the other kids her age. She always feels like she has this X on her and that everyone is always staring at her and she doesn’t quite fit in. And everybody has something at Camp Simcha. So she’s not the only one in the room, the only one in the school, the only one at camp, who is different.
Ellin Bessner:
Black History Month comes once a year and everybody gets speakers and spotlights and then they kind of go away. How do you feel about the spotlight, but then it’s only once a year.
Maya Sinclair:
I didn’t know it was a month:
Jana Popliger:
Yeah, I didn’t know if. it’s embarrassing to say I had actually never heard of it. Now that I know about it, I’m glad that I do. But you were saying there’s one month a year that there’s attention brought onto this, but I really don’t see it that way. I guess for us every day is this day. I mean, it’s just our normal life. We’re always trying to bring awareness, educate people around us who don’t know about the challenges that Maya might face, whether it’s just in a conversation with a teacher, with a friend, with whoever. I feel like we’re always educating people. And even if there’s just one month a year that the community is maybe more involved, maybe that ripple effect that “Oh, yeah, we took part in this February activity and Oh, remember that movie that they were interviewing or Remember so and so or so and so? Maybe they’ll just sort of keep it more in the back of their mind. It’ll give them food for thought to get through the next twelve months. But like I said, maybe, just maybe they’ll be out with a friend and they’ll notice something or they’ll see a person who is physically challenged or is having some type of an intellectual issue. And maybe instead of turning a blind eye, maybe this will inspire them to maybe be just that much kinder or that much more helpful.
Ellin Bessner:
If you want to learn more about Maya or buy her books or watch the documentary or attend the live event, all the links are in our show notes.
And that’s what Jewish Canada sounds like for this episode of the CJ and Daily, sponsored by Metropia. Integrity, Community Quality and Customer Care.
Today’s listener shoutout goes to all of you who wrote in to give us feedback about the truckers protest episodes we did this week. Some of you said we shouldn’t have covered both sides. Someone said, “Shame on me” for highlighting people who supported the trucker’s views. Either way, we’re so glad you’re listening and engaged in these important conversations.
Please continue to support the CJN and our Canadian Jewish journalism. Go to TheCJN.ca/circle and join. Listeners can use the promo code TheCJNDaily to get a 30% discount on the annual price.
And we’ll end the episode with this clip of Shmuel Bulka launching National Kindness Week.
Shmuel Bulka:
I remember coming into his apartment that day and he was sitting in a recliner, his eyes closed and I told him that Kindness Week is a go, that the bill passed and his eyes closed and he raised his hand and gave me a big thumbs up with a crack of a smile and I will forever remember that. But that leaves us with a great responsibility and the responsibility to carry on that legacy of kindness and to make sure that National Kindness Week is not the end of the discussion. It’s only the beginning of the discussion and that we redouble our efforts not just during this week, but every day of the year, to make sure that we make Canada and, frankly, the rest of the world a much kinder place.
Credits
The CJN Daily is written and hosted by Ellin Bessner (@ebessner on Twitter). Victoria Redden is the producer. Michael Fraiman is the executive producer. Our theme music is by Dov Beck-Levine. Our title sponsor is Metropia. We’re a member of The CJN Podcast Network; find more great Jewish podcasts at thecjn.ca.