Telling Craniofacial Stories: Perspectives from the Fine Rolling Team

Written by Fine Rolling Media 31 May 2023

#HeadlinesCraniofacialSupport #ACCORD #UWEBristol #Craniosynostosis #CraniofacialCommunity #Documentary #Series #Premiere #FineRollingMedia #MakingPowerfulConnections

Introduction (Lewis)

Shots?

It’s five thirty in July. I pick up my coffee mug and think better of it as my hand shakes a little. I’ve overcaffeinated over the course of the day in anticipation of an all-important Zoom call. This Zoom call.

On my laptop screen, two young women with craniosynostosis, Laura and Louise stare back at me. They want me to tell them it’s going to be ok. That the filming process won’t attract any negative attention and the interview won’t be taxing. I hesitate. I’d only just learned how to pronounce the word craniosynostosis—let alone be able to promise that the process would be a positive one.

 

A week later, after completing the filming day with Laura and Louise. I’m sitting in a cocktail bar. Louise hovers close to my ear and whispers a question in the form of a single word… “Shots?”

Several shots later, I take a moment to enjoy watching our crew dance and laugh with Laura and Louise. Until then, I’d been hoping our time with our subjects would be, at best inobtrusive, and at worst, a mild inconvenience to their lives. But watching Laura and Louise rave about the day’s filming between frequent trips back to the dance floor, it was clear that the simple act of telling their stories had set something alight inside them. It had set something alight inside us too. I was beginning to understand that this project was about more than making a series of films. As I was pulled back towards the dance floor, I knew that the next time one of our subjects asked if everything was going to be ok, I wouldn’t hesitate for a second.

Headlines

So, what is craniosynostosis? Not being the kind of person that lets research get in the way of a good story, I’m still not ready to touch that question. But, in the words of the charity that set us on this incredible adventure:

 

Craniosynostosis is a rare craniofacial condition where two or more plates of the skull prematurely fuse to each other, usually before birth. This results in the baby’s skull not growing properly and the newborn’s head shape being different at birth. The shape of the head may continue to change after birth as it grows.

Headlines Craniofacial Support

 

Headlines first contacted us over a year ago in the hopes of creating a series of films designed to shed light on what living with craniosynostosis is like in modern society. Much of the confidence they had in us to do justice to a project of this size, came from Dr. Nicola Stock. A Research Psychologist at the world-leading Centre for Appearance Research (CAR). We’d had the pleasure of meeting Nicola some time ago and were thrilled when she accepted an invitation to the premiere of our short film featuring neurodiverse actors called Showdown. Shortly after that screening, Nicola reached out with the hopes of bringing craniosynostosis under the light of a sympathetic lens, in a similar way we’d treated autism in Showdown.

 

Thanks to Nicola’s faith in us, Headlines signed off on our pitch to create a series of documentary films culminating in a premiere event hosted by the charity. But, before all that could happen, we first had to meet the participants that would be carrying each of the films on their shoulders.

Will (Kris)

When we first walked into the university where Will worked and studied, we kind of shook up the place a little. The campus was quiet and, to be frank, I don’t think they knew we were coming!

Will was working at the time on reception with another colleague who looked pretty shocked to see us. At first, I thought Will was shocked to see us too… but it soon became clear that he was just super chill. The crew instantly hit it off with Will. His sharp wit and quirky hand gestures kinda reminded me of… THE FONS, of all people! Eyyy!

 

The fact that Will was studying film and loved documentaries allowed us to have a bit of a shorthand with him during production. We couldn’t wait to put him through his paces and get him out from behind the lens and in front of the camera! Nothing was too big of an ask for Will. Even when the day dragged on and filming got a little tiring, he really committed and gave maximum effort to everything we asked of him. We’ll always be grateful for that.

 

Perhaps the biggest thing I took from Will’s story, was just how confident and laid back he was with his condition. Will is someone who takes life in his stride and doesn’t let anything get on top of him. It was a great lesson for us all. When we met Will again at the premiere, it felt like we’d just picked up where we’d left off. His confidence seemed to have spiked even more. I mean, what film student doesn’t love a good premiere, right? Especially when you’re one of the stars! A few Peronis and Pina Coladas in, we agreed to stay in touch. Will has an open invitation to visit us at our office and join us on a production soon. Perhaps one day he’ll even commission us to make a film. I wonder what that could be.

Laura and Louise (Austin)

Well, where do I start? When I first heard of this project it was still in planning. Personally, I was pretty excited to meet Laura and Louise, but also very nervous about heading into the unknown. I didn’t know what to expect. I approached this project as I would any other, by trying to make our two participants feel comfortable.

 

We’d set up our interview equipment the night before, in our rented apartment in London and, as it’s a Fine Rolling shoot, I’m feeling confident. The next morning, when the girls knock on the door, a few nerves creep back in. But as soon as we greet them into the apartment, my apprehension vanishes. They’re bubbly, fun, and had a confident energy despite their own nerves. I could tell that it was going to be a lot of fun spending time with these two amazing characters.

During the interview, their pure, unique friendship shone through. They were literally bouncing off each other! Massive credit to Headlines for bringing the two together and creating a fantastically ambitious friendship, they told us stories of places they’d travelled and plan to travel. Wow, what a friendship to have to be able to meet up and go on adventures together at the drop of a hat. It was clear that they used their unique personalities to boost each other’s confidence. We saw glimpses of this confidence while we traipsed around central London, visiting the theatre, museums, and rooftop bars for a cocktail. The girls were SO much fun, and we all bonded as a group that day/night (yes, we danced into the night at a very fun bar with brilliant music and a few beverages) It was like we had all been friends for years.

 

I’ve learnt a lot of lessons from this project. About not letting anything hold me back, about being grateful for this beautiful thing called life which we all share, and about inspiring each other despite our differences.

So, thank you, Louise and Laura. Thank you, Nicola, and Bruna. Thank you Headlines.

And finally, thank you Fine Rolling Media for the inspirational opportunity to be a part of a project like this!

Sally (Lewis)

“And I remember seeing my hair on the floor, not knowing what was happening. Because in the ‘60s, people didn’t speak to children. All they needed to do was to talk to me.”

When Sally’s film played at the premiere, it was at that moment many of the audience member’s sniffles turned into outright sobs. As the oldest of our participants, Sally has been forced to wrestle with many things that, thankfully, nobody with a craniofacial condition should have to go through again.

 

When I sat across from Sally during her interview, I asked myself the same question I always do in these situations: How can we curate the most positive interaction for a person that has given up their time to talk to us? Within moments of the interview, it was clear that Sally was asking herself the same question in regard to our well-being. As a Psychotherapist with a specialism in developmental trauma, Sally was forensically attuned to the guilt I was attempting to hide in asking her to dredge up a lifetime’s worth of trauma. She made it easy for us. Sally’s interview was by far the longest out of all our subjects. In all honesty, we probably got everything we needed within the first hour of talking to her. But here we had an opportunity to do what many of the clinicians and doctors had refused to do throughout Sally’s life. We had the opportunity to listen. Whether intentional or not, Sally had told us the key to unlocking her story’s potential within minutes of meeting her. “All they needed to do was to talk to me.”

 

And talk we did. Not for the benefit of the film, or even just for Sally. But for us all to truly understand the weight of importance this project held for people. After spending so much time talking to Sally, I’m over the moon with the response people have had to her film.

“When I was younger, my story belonged to everyone else. […] And even now, I think, ‘have I got it, right?’”

As with every single one of the films we produced for this project, we attempted to infuse our participants’ personalities into every aspect of the production. Sally’s uniquely soulful, contemplative persona permeates throughout what could otherwise be a chilling tale of neglect at the hands of those responsible for her care growing up.

Thank you for allowing us to listen, Sally. I think I can speak for all of us when I say, you definitely got it right!

Nammie and Charlotte (Grant)

Today we travel to Eastbourne home to one of Europe’s largest man-made marinas on the southeast coast of the UK. Known for being one of the sunniest places in the UK it’s a seaside attraction with restaurants, boardwalks and all the souvenir shops you’d typically find close to the seaside.

It’s October. So, in typical UK fashion, it’s raining and blowing a gale. The Royal Sussex Memorial of a soldier is in the middle of the street with a traffic cone on his head—courtesy of some merry locals the night before.

It’s a quiet morning, but things brighten up as we enter one of the many old Victorian hotels overlooking the sea, setting up our camera gear in an empty hotel bar ready to meet Charlotte and Nami.

 

To my surprise, this is the first time Charlotte and Nami have met in person. Despite this, their chemistry was instantaneous.

We finish up the interview. The girls have been generous with their stories, discussing their experiences of growing up with similar conditions and then we set sail for the boardwalk and its arcade.

Any outsider would be forgiven for thinking that the girls are best friends enjoying a day out on the pier. They play on the arcade machines—laughing and joking over a friendly game of air hockey. I remember thinking, it’s never been this easy to capture natural B-roll before!

 

We leave the arcade to grab some lunch and in typical seaside fashion, it’s fish and chips to fuel up, before heading to the seafront to capture some headshot photographs.

Most people don’t feel comfortable having their photographs taken but Charlotte and Nami are in great spirits, having spent time with us all. It makes the photoshoot a breeze both figuratively and literally speaking as I capture some windswept photographs of them both.

Off to the hairdressers next for a quick pamper after battling the sea air outside, and we continue to watch the girls’ bond grow. This is where we part ways with the girls after their day of eating, drinking, and having fun together. There is a clear strong friendship forming that I hope continues after this project is over. It’s certainly a day I won’t forget.

Zoe (Tom)

I joined Fine Rolling Media for two of the shoots on this amazing project, each time as B Cam and Gimbal Operator.

The ACCORD project has been a wonderful and rewarding experience to be a part of. Specifically, our time spent in North London with Zoe, who shared her story and the difficulties she’s faced in her life. Despite those difficulties, Zoe showed how passionate and positive she is during the shoot, even proudly stating, “You can never give up, you have to keep going”.

 

During the shoot, Zoe was up for everything we threw her way and fully embraced the shoot. Even joining in and giving us ideas and taking us to useful locations. It was amazing to see Zoe at the premiere event with all the other participants. Keep spreading your message, Zoe! You’re an inspiration to anyone that has ever faced discrimination in an employment situation.

Conclusion (Lewis)

There are far more memories of how this project has forever left a mark on our team—too many for a single blog article to contain. In parting, I want to thank all our participants for the final time. Will, you helped us remember that creativity is a product of having a unique point of view—and that we should never stop striving for more unique points of view to have access to the creative industries. Laura and Louise, you showed us just how important friendship is when it comes to allowing each other to be brave and live authentic lives. Charlotte and Nammie, you reminded us that genuine empathy and emotional intelligence will always win out over preconceptions and intolerance. Zoe, your incredible resilience and contagious optimism in the face of prejudice is a daily inspiration to us all to never give up! And Sally… you renewed our faith in the power of story and its ability to connect us, no matter how different our life experiences have been.

 

We’re excited to see how Headlines Craniofacial Support builds on this project and continues to support people in the craniofacial community. We can’t thank you enough for putting your faith in us and trusting us to help tell these incredibly different but equally important stories. We’ll be on hand any time you need us in the future. Until then, in the words of Will, “Embrace the difference and enjoy life. I think we’re all different really, if you think about it.”

“There is no greater disability in society than the inability to see a person as more.”

– Robert M. Hensel