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.

“It’s simple solutions that make all the difference”: Marie’s story

At three foot six and with brittle bone disease, Marie is constantly adapting to looking after her growing baby Mark. And Marie and her husband Dan are finding often it’s the simplest adaptations that make the biggest difference to family life.

Mark is nine months old now and we simply do not know where the time is going. Every day is magical and he brings us so much happiness. Mark has recently started feeding himself finger food and is really enjoying meal and snack times. He will walk over to me when he is in his walker to high five me, a new trick! It won’t be long before he is walking independently and we have already started moving things up, which is where the seat riser in my wheelchair comes in handy.

We recently had some building work done to improve our bungalow. When we bought our place four years ago we were refused any help with adaptations and alterations from the Disabled Facilities Grant.

Marie in a wheelchair, holding Mark, on their outside decking
Marie and Mark on their new outdoor decking

So we have had to save up for this work – and now the back end of our home is completely wheelchair friendly. I can now drive my chair out from our lounge straight onto the decking and then down into the garden, as we now have full level access. To keep costs down we used standard building materials, standard French windows and lots of inventiveness to make it all work. This now means Dan, Mark and I can make the most of the rest of the summer and start planning garden toys and sandpits and things for Mark next year as a toddler!

Also our local Remap charity (who are awesome) made me some ‘steps’ from plywood covered with soft foam and fabric, suitably sized to push up against our sofa. This very simple contraption now means I can climb from my wheelchair onto the sofa and then from the sofa independently get onto the floor to play with Mark. The ‘steps’ are then moved out of the way so Mark can’t climb up and down them, the cheeky little monkey that he is! Being able to get on and off the floor has been really good and Mark enjoys having mummy play on the floor too. Such a simple and elegant solution to one of life’s problems when you’re 3 foot 6 and can’t stand!

Marie sitting on a soft step next to a lounge
Marie on her new soft lounge steps

We’ve always found that it’s simple solutions like this that make all the difference. It just takes a bit of determination and lateral thinking and you can overcome most of life’s obstacles – that’s something having Mark is making me realise more and more.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People, That’s Life! magazine and Disability Horizons.

For simple tips on adapting your home, check out the new tips feature on our online community.