March 2020
With COVID-19 affecting all of us, our physical bodies and emotions are on high alert. I am moved to see the voices rising from the tumult that are finding ways to help, uplift and unify to balance out all the uncertainty. Every one of us, if we're honest with ourselves, knows vulnerability. Isolation, canceled plans, financial uncertainty and putting dreams on hold because of health issues is nothing new for those of us who live with chronic illness. But with the COVID-19 pandemic, we are now sharing these experiences together. My hope is that this crisis brings the best of human nature forward and the inherent resiliency of our hands and hearts leads the way.
So while our documentary location production schedule is on hold our Unfixed Community engines are running smoothly from the safety of our own homes and will continue to do so for another 10 months. We cherish their voices more than ever now. Weeks before the World Health Organization proclaimed our global pandemic, our Unfixed Community started setting up their smart phone tripods and sharing their thoughts for this month's theme – Advocacy. We wanted to learn how people with chronic illness self-advocate and what barriers and pitfalls prevent this from happening. Right now we all have an opportunity to advocate for each other and especially the medically vulnerable so hearing their thoughts on this topic firsthand especially hits home.
CLICK ON THE VIDEO BELOW TO HEAR THEIR STORIES.
Advocating for filmmakers with disabilities
Even though you might assume I have a Ph.D in self-advocacy making this film, the truth is far from reality. I feel shame speaking up for my peculiar neurological needs, assuming people don't want to hear it, I will be a burden or seen as weak and complicated. I also don't tend to lead with "I have a condition called MdDS" because I don't want to be identified with it.
When Mal de Débarquement, or MdDS, hit me five years ago, I was certain my career in film was over. The constant perception of rocking and swaying make even my low-symptom days challenging. Add to this the typical rigors of filmmaking - long and unusual working hours, travel, managing large teams, heavy screen time and juggling endless details - and I question whether my sanity dissolved alongside my perception of solid ground as I begin to re-engage with my chosen craft.
But just as much as this collision of experiences is challenging me, it is also giving my life shape and purpose which is key to anyone learning to thrive with chronic illness.
On set filming my last major production 9. While this film was still screening globally, my first symptoms of MdDS struck.
Once we are able to resume our location filming I am committed to advocating for myself and anyone else who is compelled to tell stories through the medium of film by following these guidelines. They may seem decadent when you compare them to current industry standards but it is my hope that making these minor changes will inspire others to follow suit, opening doors and encouraging people with chronic illness and disability to get behind cameras and make films.
Filming days are eight hours max and six hours if a subject or crew member is medically fragile
Emergency travel fund for last minute changes in crew if someone is sick or contagious
Built-in "wellness" check-ins each filming day so crew and subjects can debrief, integrate and metabolize the intensity of the subject matter
Audience accessibility is also a top priority so we are taking inclusive measures here as well - no shaky, handheld camera movements, no strobes, no fast edits, open captions, audio descriptions for blind viewers, a detailed transcript for deafblind viewers and of course, wheel chair accessible screenings. I'm certain I'm forgetting things here but the list is growing so if you have ideas, please send them our way.
Need some relevant and inspiring Netflix medicine? Sundance Audience Choice winner Crip Camp about a groundbreaking summer camp for teens with disabilities and the movement they ignited was released on March 25th and is making giant waves in the filmmakers with disabilities community. We need stories of humans persevering, organizing and bringing good into this world more than ever now so queue it up!
Member spotlight - Brian Nice
Gorgeous footage still by Unfixed Community producer Mia Allen - who incidentally wields a camera as proficiently as she does everything else.
Brian Nice is a world-renowned photographer, athlete, and Traumatic Brain Injury survivor. He has had two brain bleeds as a result of a condition referred to as cavernous malformation in the pons area, caused by an abnormal capillary that slowly hemorrhaged. Most people do not survive this condition, but after two surgeries the world is still blessed by his infectiously joyful, comedic presence. Brian often jokes that he is a "method actor" - that his physical limitations and presentation is just his way of rehearsing for a starring role in a Hollywood film.
For thirty years Brian had been a professional photographer, shooting advertising and fashion in the US, Australia, and Europe. He also has a deep, heart-felt passion for landscape photography. His TBI left him with double vision and instead of throwing away his camera, he decided to photograph the American landscape as he sees it now: through the eyes of a traumatic brian injury survivor. His first public exhibition will be announced later this year and once some sense of normal in the world has resumed, we'll be there with our cameras to celebrate with him.
Brian uses a medium-format 120mm film camera to capture how he sees the world. The camera is retrofitted with a counter weight to help steady the image.
Stay tuned
Next month our members will become advocates for all of YOU and create a COVID-19 Emotional Survival Tool-kit video. There is no one more versed at living and thriving with uncertainty, grief, anxiety and disruption than the chronic illness community so we're excited to empower their voices of leadership during this global crisis.
Inspired? How can you help? Please forward this newsletter, subscribe to our Youtube channel, follow our social media accounts and spread the word with anyone in your community who might resonate with our vision. You can also help our Unfixed projects continue to progress through a tax deductible donation to our fiscal sponsor or by becoming an investor. We also need an EXECUTIVE PRODUCER who will actively help us achieve our funding goals so we can keep the Unfixed Community and documentary afloat. If you have questions or suggestions please message us using the email icon at the bottom of the newsletter.
Stay healthy and keep caring for yourselves and your communities,
Kimberly Warner
director/producer