We’re excited to introduce you to the always interesting and insightful Tara Rule. We hope you’ll enjoy our conversation with Tara below.

Tara, thanks for taking the time to share your stories with us today. Can you tell us about a time that your work has been misunderstood? Why do you think it happened and did any interesting insights emerge from the experience?

As a disabled entertainer and creative, I spent a long time hiding my disability as I feared it would impact my ability to find work, especially as an actress and filmmaker. I was surprised at how well received I was in the film community despite my condition. As I became more comfortable talking about my condition publicly, I decided to integrate disability rights and awareness into my work as content creator. I feel most misunderstood as a content creator – my content is such a small glimpse into my life. People don’t see the constant doctors appointments, days in bed, and the years I spent in physical therapy learning to walk again. My symptoms ebb and flow, and there are times in my life where my condition is more of an “invisible condition”. There are so many people who think I’m lying just because I don’t always look disabled or sick. As frustrating as that can be at times, the support I have online has helped me get through some of the most challenging times of my life. I think the visibility of being a content creator and showing others that you can have a disability and still pursue your dreams is more important than ever. I’m really grateful for the opportunity to teach others about Ehlers Danlos Syndrome and the challenges those with this rare genetic condition face.

Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers?

My dream was always to be a star – an actress, a musician – an artist – something! Growing up I spent my time doing all things creative. Singing lessons, guitar and piano lessons, acting lessons, theater, band, chorus, art classes, you name it. Despite being raised by a single mother with very little income, I never went without and I was privileged in that my mother did everything she could to provide me with opportunities, even if it meant she went without. I continued to pursue my dreams even through college – touring in a Woodstock tribute show, acting in little things here and there. Eventually I felt like maybe my dreams were a bit silly and it was time to grow up. I went to school for funeral directing and worked as a mortician for a year. My health started to rapidly decline.

I was only diagnosed with Ehlers Danlos Syndrome, a rare, genetic connective tissue disorder in June of this year. Due to the poorly understood nature of the condition and strange symptoms that accompany the condition, I spent over a decade searching for answers and, unfortunately, repeatedly misdiagnosed and given dangerous treatments that resulted in encephalitis and multi-organ shutdown. I lost my ability to walk, use the bathroom, eat, read, or take care of myself in any capacity. I remember laying on what I thought was my deathbed in the neurological ICU. I made a deal with the universe, God, whatever you want to call something larger than us – that if I survived, I would pursue my dreams and be an advocate for others.

Years of physical therapy and corrective treatments later, here we are. I am keeping my end of the deal.

I had a very narrow view of the world and how it operated. Like many others who grew up privileged, I had a warped view of the injustices of the world around me. My experiences over the last 10 years have shown me some of the darker parts of humanity – especially under capitalism in the United States. I have allowed all the traumas I have endured to inspire my work as a visual artist and filmmaker. Experiencing the full scope of the human experience and being pushed to my emotional limit more times than I can count has made me a better actress. Learning to advocate for myself and fight for my life has inspired me to educate others on how they can advocate for themselves and the resources that are available to them in order to navigate a disability, chronic condition, poverty, and discrimination.

I am most proud of inspiring others to talk more openly about their disabilities. I am so proud of the films I have made in the past year, all of which have an important message regarding social issues and will be released in 2023. Most of all, I’m proud of utilizing my own experience to push for new legislation to prevent discrimination in healthcare.

Let’s talk about resilience next – do you have a story you can share with us?

I was recently denied a safe, effective treatment for cluster headaches/occipital and trigeminal neuralgia. Cluster headaches are also known in the medical community as “suicide headaches” as the pain is so severe that many patients chose to take their life in order to end the relentless pain. I was seeking a preventative (non narcotic) treatment for one of my most debilitating symptoms. Despite not wanting children, having a partner who has a vasectomy, and already being on a teratogenic, life saving treatment, I was denied the treatment due to being of “childbearing age” and having a uterus.

I was outraged that my pain was being deprioritized over the life of a hypothetical fetus that would never exist. When I posted the recording of my interaction with the doctor as he berated me on the topic of abortion, it went viral. I was horrified at the hundreds of thousands of people who have been denied treatments for the same reason, or who have had to jump through dangerous hoops (hysterectomy, tubal ligation, hormone treatments) in order to receive treatment.

As a result of bringing this discrimination to light, I have been blacklisted from local hospitals. I have been thrown out of the emergency room in retaliation for reporting the doctor.

Despite being without treatment or medical care, I am pursuing new legislation to prevent doctors, insurance companies and pharmacies from denying treatments to patients who have a uterus and are of childbearing age.

I have been working with the directors of Change.org, and we are working on the bill as we continue to collect signatures.

What do you think is the goal or mission that drives your creative journey?

My mission is to continue to create works that draw attention to important issues by putting the audience in someone else’s shoes. I truly believe that conflicts between human beings stems from our inability to truly know what it is like to be someone else. After all, none of us truly know what we would do in a particular situation until we have been put in it, as much as we would like to think otherwise.

Conversations are great, but my goal is to create films that put the viewer in a situation that they would not otherwise be in as a way to gain perspective. At minimum, I want my work to spark dialogue.

Screaming into an echo chamber gets us nowhere, and as someone who has had a complete overhaul of my beliefs about the world simply based on being put in a position I never imagined I would be in.

Contact Info:

• Website: https://www.tararule.com/
• Instagram: https://www.instagram.com/tara_rule_/
• Facebook: https://www.facebook.com/tara.rule
• Youtube: https://youtube.com/@pogsyy
• Other: TikTok: https://www.tiktok.com/@pogsyy
  Film Freeway: https://filmfreeway.com/TaraRule
  Change.Org Petition : https://www.change.org/Prioritize_Existence