Creating a documentary: A brother’s take on Down’s Syndrome

“My dad used to say ’He’s got 10 fingers and 10 toes and he’s my boy,’ - I always remember that,” says Nick Bourne, brother to Alex, who has Down’s syndrome. Over the last year, they’ve been creating a documentary about siblings and Down’s syndrome.

“There’s lots of information about having babies with Down’s but there’s very little on what it means to be a sibling,” says Nick, 26. He wants to change that through his documentary, Handsome. He’s creating it with Alex and filmmakers Luke and Ed White.

For their documentary, they went to Cornwall, New York City, Mumbai and Hanoi to meet and interview people with Down’s syndrome and their siblings. As they travelled, they used Starling Bank to manage their money. On their return, Nick and Alex reached out to us to share their story.

Growing up with Alex

Down’s syndrome, also known as Trisomy 21, is the result of having an extra chromosome. Chromosomes are structures that carry genetic information. On average, Down’s Syndrome affects one in every thousand babies born in the UK, according to the Down’s Syndrome Association. Those with Down’s Syndrome need varying levels of care. “Alex needed more care before the trip - washing himself, making tea, walking independently,” says Nick. “But now he can do those things.”

“Alex doesn’t have a bad bone in his body. He’s one hundred per cent joy - I know that sounds sickening but you can wake him at 5am in the morning and he’s like ’Morning!’ and then he’s up and ready to go,” says Nick.

“He’s the sort of person who will give a hug to everyone - the cashier at Sainsbury’s, someone he’s just met at the pub, sometimes I have to say ’Hold on buddy, just a handshake for this one.’”

As a child, Nick was close to both his younger brother Alex and older brother James. But as a teenager, he began to drift apart from Alex. “I didn’t want him around my friends because he was different,” he explains. “At that age, you’re in such a bubble - you’re so focused on yourself, friends, exams, sport. When I went to drama school, I saw how ridiculous I’d been. There’s no reason to feel shame about it - he’s my brother.”

Acting for Alex

Today, Nick works as an actor, a support worker for people with disabilities and a producer for Luke and Ed’s filmmaking company Boxclever Media. “Acting has always been my passion. A few years ago, I was doing these acting classes and the teacher told us that every time we came on stage we should fight for someone: it was always for Alex.”

Several years later, Nick began to reflect on his time at drama school. “I considered doing a book about the relationship I have with my brother but when I talked to my mum, she suggested doing a documentary with the boys.” Nick has known Luke and Ed from the age of 10.

Before they began filming any interviews, Ed and Luke lived with Nick and Alex in their apartment for six months so that they could gain an understanding of what everyday life was like with Alex. It also meant that Alex could get used to the cameras before they began their travels. “They’d see us from waking up to going to bed, warts and all. We were always conscious about making the film truthful. I love my brother but there are difficult times,” he says. Nick took over from his parents as Alex’s primary caregiver throughout filming. The film begins with shots of Nick helping Alex to have a bath and making dinner in their flat.

Growing the idea

The team found other siblings to interview as a result of video that featured on the BBC website in July 2018. It resulted in hundreds of emails of support for their project. “Originally, we wanted to film only in the UK. But to make a big impact, you have to have big ambitions.“

The team filmed in four locations across the world. For the UK and the USA, they found interviewees through the emails and comments sent following the BBC video. But for India and Vietnam, they flew out without knowing in advance whom they’d meet. Their travels were enabled through crowdfunding.

Nick and Alex travelled to New York City to meet other siblings and talk about the realities of Down’s Syndrome

Telling stories through travel

Their trip began in Cornwall. They rented a 1960s campervan and drove across the county, listening to The Beatles as they went. “Throughout our lives, we’ve always been interested in music. Alex finds it difficult to communicate but music is a great way of him being able to express himself,” Nick explains. “He loves dancing and getting up on the dancefloor.”

Alex is a student at Post19, a life skills and support centre for young adults with learning difficulties, funded by Surrey County Council. “They learn how to cook, they can use the gym and they gear up into eventually getting work,” says Nick. Skills taught include gardening, sports, art and crafts and photography. Some students also do work experience with local companies.

“In India, there was this amazing community of adults with autism and Down’s.” Nick had a real sense of people looking after each other, even though the facilities were different to those which Alex has in Surrey.

“Hanoi was the most difficult for us. A lot of the old traditions are quite prevalent - we met a fortune teller who told us that for two million dong, there was a 60% chance that Alex would be cured. Families go to them out of desperation and they genuinely believe it.”

Making memories

“I’m no Louis Theroux or Stacey Dooley, but hopefully a lot of people will relate to us and what we’re trying to do through our documentary,” says Nick. Handsome will be available to watch early 2020.

“Travelling with my brother has meant we’ve grown stronger together and no matter what happens, we’ll always hold on to these memories and stories. It’s been one hell of a journey.”

Alex says, “I liked the chicken noodles in Vietnam. I like the plane, journey and brother. YEP!”