Fay on a camera screen, and using a camera

An intimate insight into the world of neuromuscular disorders

Guest post by filmmaker Fay Hart. Fay is creating an interactive documentary which tells the personal stories of disabled people.

I am a postgraduate filmmaker and specialise in documentaries. I also just happen to have Cerebral Palsy and Epilepsy, but rather than seeing it as a barrier to my work, I see it as a storytelling tool.

I am a relatively new filmmaker, having previously got a degree in Graphic Communication. My neuromuscular condition impaired my motor skills and movement, so it became difficult to continue communicating through graphics. I discovered filmmaking as a new way of storytelling and a medium that I could access independently. Filmmaking is also very accessible with so many devices that now facilitate it. I am able to use a range of compact and portable devices; smartphones and digital SLRs. Cameras originally designed for extreme sports can be easily attached to my wheelchair.

How Fragmented Lives began

Having been disabled since birth, there have been many milestones that I have reached in life, both good and bad. The only place I have been able to relate to people online has been through written forums. However these can be difficult to access given my motor skills. Written content also lacks the emotion which contributes to neuromuscular Disorders.

I realised that these emotions can be captured through film but I had no platform to share these in a visual and contemporary way. I also began to recognise that others in similar circumstances didn’t have a platform so Fragmented Lives began to evolve.

I intend for the project to continue to grow by getting as many people as possible to capture and upload their own experiences. The project will culminate in multiple stories with diverse experiences but most significantly, multiple lives.

Why Fragmented Lives is different

Many documentaries about disability, lack the honest and raw emotions which often comes with having a disability. Many only focus on the facts and physicality of everyday life and on the conventional. Fragmented Lives offers a unique and incremental perspective. It’s an interactive documentary which focuses on the emotional impact of disabilities and personal stories.

Given it’s a highly accessible and interactive platform, this project will develop into a place where multiple stories can be shared and viewers have the opportunity to become the filmmaker.

Fragmented Lives has the capacity to become an emotive, collaborative community network. Here are two of the first few stories:

Survival

Jonathan lives though his gaming, which offers a world of normality and agility:

Finding my future

An illustration of the social and emotional implications of my journey of embarking on major surgery:

For the other films and to get involved visit the Fragmented Lives website. You can also follow the project on Facebook and Twitter.

One thought on “An intimate insight into the world of neuromuscular disorders”

  1. I am so glad I came across your blog today. I can’t wait for your documentary to come out. My son is 3 and has an unknown neuromuscular condition along with chronic Lyme and many other medical conditions.
    There is still so much that his doctors do not know or understand and I believe that documentaries like yours that shows what its really like will help prepare us for the future and know sort of what to expect.
    Please check out my sons pages.
    We just moved from tx to Ohio so that he can get the medical care he needs. Any help or share is appreciated.
    http://Www.gofundme.com/fight-lyme
    http://Www.Facebook.com/fightingforanswers

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