You have landed on Décalés - Out of Sync, an independent podcast of open conversations about life through the prism of disability.

Décalés is a French word that embraces the feeling of being out of sync, along with individuality, acceptance, perspective, quirkiness – all in all: marching to the sound of your own drum.

Embark with us on a journey across the United States, led by the raw, sincere voices of the people of Zeno Mountain Farm, parents, siblings, friends, and others I’ve met on the road in early 2023.

this chapter was created with the support of Villa Albertine, Zeno Mountain Farm and Unapei.

Trailer.

#1 Krista - the art of letting go. **listen to Krista’s daughters Hannah and Isabelle in episode 3 and episode 5**. Krista talks about the art of letting go. Becoming a mother of twins at 35 inevitably rocks your world, and even more so when one of them suffers a brain injury at birth. As she entered the realities of parenting and disability, she sought for balance between problem solving mode and grief, leaning on her husband and standing up together, trusting schools and professionals when she knew how to help them at home. Current situation: the twins are leaving for college, and number three is in full adolescence. As the neighbor of Zeno Mountain Farm, she shares how this community broadened her perspective on possibles.

#2 Will - shifting narratives. What Will Halby and his family envisioned many years ago exists today as an alternate reality: Zeno Mountain Farm. The dream was for adults with and without disabilities to meet around theater and film projects. What started as a small non-profit in California became a year round camp community in Vermont that ensures all bodies and minds are represented on stage and on screen, participating in life to the fullest of their abilities. It is free, secular, grounded in friendship and common sense: we all have needs that must be met, let’s see if we can take it to another level. Zeno creations tell original, whimsical, quirky stories that are not about disability, shifting the narrative and blurring the invisible boundaries between disabled and non-disabled.

#3 Hannah - learning is an experience. **listen to Hannah’s mother Krista in episode 1 and to sister Isabelle in episode 5**Hannah talks about embracing her full identity through theater, community and learning how to ask for help. The theater is where she feels most at home. “Nothing can be erased or edited on stage. I can come as I am, my mobility aids are just a part of my character and I am a part of the story, just like everyone else”. She and her twin were born 27 weeks premature and Hannah was diagnosed with cerebral palsy after having a brain injury at birth. Not so many kids shared their experience in rural Vermont where they live, making it hard for her to embrace her full identity... Until she discovered Zeno Mountain Farm and later on a women’s empowerment program where people with disabilities were expected to help each other. For the first time, it wasn’t the able bodied’s job. As she thinks about college applications next year, her top priority is to find a fully accessible campus.

#4 Kate - life as an extrovert. Kate describes herself as so friendly and extroverted that social boundaries can be difficult to process. People with Williams Syndrome all share that outgoingness. She reflects on independence and the importance of taking the same steps as her peers. There have been obstacles but she feels lucky to have grown up in a time where “people with disabilities are finally seen as capable”. As a swimmer, she won gold at the 2019 Special Olympics World Games in Abu Dhabi - among many other awards throughout her career - and she has a special relationship to music.

#5 Isabelle - finding balance. **listen to Isabelle’s mother Krista in episode 1 and to sister Hannah in episode 3** Isabelle talks about siblings relationships and the feeling of a parallel evolution with their twin Hannah who has cerebral palsy. It’s an interesting balance to find, they say, to know what we are responsible for, if we are supposed to stand up for the other and how to. Between love and guilt she questions how siblings should respond to their feelings when they are - from a societal point of view - the ones who are supposed to be okay. Accessibility is what parted them in the playground - as they think of college next year, this question remains central and they remain very close.

#6 Ila - the school of life. Ila talks about the school of life like you’ve never heard of it before. Ila is an occupational therapist and the co-founder of Zeno Mountain Farm, a camp for people with and without disabilities based in Vermont. As an occupational therapist, she helps people live independently. As a camp director and founder she offers a place for community to people for which it can be hard to come by. She explains « Zeno is not just a philosophical space, we make original plays and movies to take concrete steps to have better exposure for disability in the media, because people grow with culture. » and I couldn’t be more aligned with this thought. Think of this podcast as a toolbox and enjoy the ride!

#7 Grace - nothing down about Down syndrome. When I asked Grace what is was like to be a single mom raising a toddler in a teepee with no running water or electricity, she laughed and said she was lucky because Ian didn’t toddle very much. In fact, babies with Down syndrome tend to take it slower than most kids and as Ian grew, Grace made a point at taking everything slowly but seriously and to focus on life skills. As an educator, she had worked with many kids before advocating for her own to get what he needed educationally. Looking back, she couldn’t stress enough the power of community and common sense. If you check our instagram you will see that Ian may have begun his life in slow motion, but he surely turned into one serious showman.