Has humanity changed? When I was younger, it mattered if someone in our neighbourhood got sick, was hospitalized or just disappeared. They were a staple in the community, you said hello in passing and asked how they were doing. Suddenly they’re gone without explanation. Life changes in milliseconds. One day we’re neighbours and the next day they’re gone. Unless you talk to the family, you’re left to fill in the blanks. What we later learn is that they had a stroke, it caused paralysis and they won’t be returning to the community. It’s devastating, you were good neighbours and part of your day revolved around your daily conversation. The pandemic is in full swing and a visit to see them is unachievable. They have sustained a life changing injury and now they’ve been forced into a long-term care facility/institution surrounded by new faces. How are they feeling and how do they manage to stay hopeful for better days?
It’s not a big secret that long term care homes are always understaffed, ill equipped and seemingly invisible when it comes to quality of care concerns. The government is always boasting how great this country is but yet, they allow the very same people that built this great country to be forgotten in a room, down a long corridor of a wing in some institution. An institution that’s been waving the white flag for years. Perhaps if this country had better representation, if the right people were actually in a position to evoke change and if pipelines were long term care homes, we wouldn’t be having this conversation. The people that built this country shouldn’t feel invisible or forgotten, it’s inhumane.
A government, if run properly and fairly should be putting health as a top priority. Other developed countries do this because they recognize that a person’s dignity, quality of life and mental health actually matter, especially as they reach the end of life or have lost their independence. Having better staffed long-term care facilities is one solution but allowing a resident to go home and receive regular health care visits is another. How nice it would be to have a place to call home again, rather than an institution. The government can make it happen but it takes many voices to make them listen. It’s about quality of life and giving respect to those that gave so much of themselves.
Perfecting the Art of Longing, is a short documentary from acclaimed filmmaker Kitra Cahana. It’s a powerful collaboration with her quadriplegic father, Rabbi Cahana. Using footage from security cameras, video calls and home-video archives, this experimental short film leads us on a journey through memory, family and faith, exploring the nature of connection and distance. A philosophical film unlike any other, it’s a tribute to the human spirit and a reflection on longing itself.
In 2011, Rabbi Ronnie Cahana suffered a devastating brainstem stroke that left him ‘locked in’ and only able to communicate through the blinking of his eyes. In the years that followed, the beloved poet and community leader regained some power of speech but remained paralyzed, requiring round-the-clock assistance at a long-term-care facility in Montreal, Quebec. When the pandemic lockdown hit, he found himself completely isolated and cut off from his loved ones, connecting only through screens. A devastating predicament that would break most spirits… but not Rabbi Cahana’s.
This film is 12mins long and it’s received a remarkable number of views on the New York Times Op Docs website, was selected as a Vimeo Staff Pick for May 16 with almost 15,000 views within two days after its launch on the platform… and it was awarded Best Canadian Short Documentary at the Hot Docs Canadian International Documentary Festival. If you have loved ones in a long-term care home, this film will resonate with you!
Kitra has started a non-profit that uses film and photography to amplify the voice of seniors and people with disabilities. If you’d like to get involved, you can find them on Instagram @artists4longtermcare.
You perfect the art of longing by knowing where your soul is intended to be.
– Rabbi Cahana
I had the amazing opportunity to speak with the Award-winning filmmaker Katrina Cahana about this very personal collaboration with her father. It was outstanding, it was intimate and it was resonating. Roll the tape!
HNMAG “Your father lives with paralysis. What level is his injury?”
KITRA “It was a brain stem stroke. He has movement of his head and a little movement in his arms and legs. He uses an electric wheelchair that he controls with his head and he holds a joystick in his lips to go online.”
HNMAG “It must be very difficult for people that are immobilized and in institutions during a pandemic. I think it’s important that you chose to shine a light on the struggles and the isolation that one faces, through your father’s experience.”
KITRA “I became very involved in activism after becoming concerned about the goings on in the long-term care facility. I was advocating for the families, the employees and residents at my father’s facility – which is one of the largest ones in Montreal. As a storyteller and filmmaker, I wanted to share a voice from within the chaos and the tragedy. It made sense to work with my father because we’ve been artistic collaborators from the start of his stroke. We started to tell his story through his photography, his poetry and when the opportunity to make a film came from the National Film Board, I knew it was important to share his story and have a voice from within these buildings. We read news stories and its very rare that you hear from a resident or worker about what’s going on inside.”
HNMAG “Was there a catalyst that prompted you to begin the documenting?”
KITRA “A producer from the NFB, Kat Baulu had reached out to me to inform me that they were commissioning some short films about the pandemic looking at the present situation. They had seen some of my activism work online. I had started an Instagram account called, Long Term Care – where I was working with artists, coming up with slogans and creating art work to advocate for residents and workers in long term care. They were the epicenter of so many deaths that we were witnessing, especially in Canada. There was a lot of focus on long term care, but yet there didn’t seem to be anything being done to improve the conditions they were in. I even got the sense that young activists were disinterested in that space, maybe perhaps they’re elders. I don’t know why there’s a paucity of activism around long term care amongst younger activists, but I thought it was important to have an online presence advocating for them.”
HNMAG “Has your father been able to see the film and what was the process of shooting the project?”
KITRA “I involved him throughout the making of the film. The text of the film was put together from many different interviews that I conducted with him throughout lockdown and the pandemic. The interviews and filming were all done remotely – I was in Tucson at the time and I would film him on 2 security cameras that we had installed. It’s quite normal for a family to have security cameras installed in their loved one’s room in an environment where these facilities are severely understaffed. As a family member, it’s important to be that extra eye to make sure that they’re receiving care and they’re ok and not falling out of bed at night. Even at a distance the care is extended – we care from afar.”
HNMAG “How has your father’s mental health been during the pandemic? Have you seen a change?”
KITRA “I’d say that there were acute moments of stress at different moments of the pandemic. At one point they had moved him out of his room and it wasn’t clear if he’d be returning to it. There were some chaotic situations that brought on some acute stress but he himself is quite strong minded. He enjoys his solitude and doesn’t mind being alone. He’s quite introspective and meditates – as I mention in the film, he spends time suspended in this spiritual longing state, where he can envision his perfected self. He does a lot to maintain his internal joy, regardless of his circumstances. Since the beginning of his stroke, he’s been putting into effect, his spiritual beliefs as a Rabbi. Being institutionalized is really inhumane and there’s no other way to say it. Living in an institution and being an object of care in an environment where workers are completely stretched to the limits and completely understaffed. Despite a very trying circumstance, he tries to build close relationships with the people that he works with. He manages to live an extremely dignified and graceful life. When you’re being institutionalized, your dignity is being challenged every day.”
HNMAG “When did your father have his stroke that caused his paralysis?”
KITRA “It was in July of 2011 – we’re coming up on 11 years.”
HNMAG “From my knowledge, the damage from a stroke is more severe the longer it takes to receive medical attention. Was your father’s condition not discovered immediately?”
KITRA “Quite often with brain stem strokes, they’re misdiagnosed as Guillain-Barré syndrome because there’s a lot of similarities. When they brought him to the hospital, they had misdiagnosed it as the syndrome. He eventually ended up in the neuro and they inserted a stent, which saved his life. Because the stroke happens at the brain stem, it doesn’t affect any cognitive abilities, it’s completely physical. Initially, he’d lost his ability to speak and we would communicate through him blinking. As the swelling came down, he regained his ability to breathe on his own after being intubated, as well as being able to speak again.”
Kitra expands on her concerns revolving around acute care facilities and says, “I’ve observed a vacuum of care around the space and they’re seen as very disposable in our culture – the pandemic has made that very clear.”
HNMAG “You had organized a non-profit initiative to bring more attention to acute care patients. Did you start it before or after the making of the film?”
KITRA “It’s not officially a non-profit, it’s something I devote a lot of time to. I started it before the film and I was commissioning different artists, coming up with campaigns, developing slogans, curating and finding different art work related to the topic online. I find that a lot of younger activism takes place on social media and Instagram these days. When I looked at the landscape of art work created around the pandemic, very little of it had to do with elders, people with disabilities, or support for workers in long-term care facilities that are on the front lines. There was a lot of focus on hospital workers but very little focus on long-term care workers. I thought it was important to connect various networks that were also concerned with this issue. We created different art works that reflected different aspects of it. We encouraged people to reach out to long term care homes near them to see what the workers needs are and raise money for them… all kinds of things.”
HNMAG “This film has been able to open peoples’ eyes and was awarded Best Canadian Short Documentary at Hot Docs. Congratulations on that.”
KITRA “It was a Vimeo select/Vimeo of the Day select, it was also selected as a New York Op Docs and it also qualifies for an Oscar through the Hot Docs Award. That’s pretty exciting!”
HNMAG “Where does the film go from here? Is it still being screened at other festivals?”
KITRA “I still have various festivals reaching out to me to enquire about programming the film. I continue to receive a lot of messages from people that were touched by the film. Every day I’m excited and refreshed with the new and interesting direction the film is going. It seems to be resonating with a lot of people.”
HNMAG “Your dad has a remarkable attitude for someone in his current situation. Do you believe it’s because he is a Rabbi with devout faith or has he always had a strong willed attitude?”
KITRA “He’s always been a very ‘individual individual’ lets say (laughing). He has a very strong inner voice and sense of who he is. He has a really unshakeable sense of himself and his own personhood. I didn’t expect him to be so strong in extreme circumstances. His biggest challenge living with quadriplegia, is fighting daily to have his humanity recognized within institutional living. He’s been able to advocate for himself but from the beginning, it’s been his dream to be at home and to not be so separated from the community. There’s really no reason why he should be because it’s a political decision, based on where our funds go. Other models exist, where its possible for him to live at home. It feels like young disabled residents of long-term care are seen as disposable and aren’t allowed the option to live at home. There are disability activists fighting to change that. Crip Camp is a wonderful film about the American Disabilities Act. They were fighting to not be institutionalized and to live within their communities – it should be a human right.”
Kitra continues to explain that this is not just a disability problem, it’s the majority of us that will face life in a home at the end of years. “It’s all of us and there’s many reasons for people to demand a better state of long-term care. It’s almost all of our futures, so how do we want to be cared for and how do we want our parents to be cared for? During the pandemic I heard the word ‘care’ come up a lot but yet, we continue to not see the people that have always been invisible.”
Perfecting the Art of Longing should be an alarm for our future long-term care. We should all be concerned and we should all want better care for our loved ones. Ensuring that our final years are not spent in suffering should be a basic right but it’s not, so let’s change it. Please go to Instagram @artists4longtermcare to help promote change and to help reform how we treat our elderly, their dignity deserves it.