What’s in a Name? – Q&A with Ian Heydon

Ian Heydon is an award-winning comedy writer who, over the past four decades, has written for television, radio, print, online and the stage. He also recently picked up the Best Actor award (Open Entrant category) for his entry into the 2021 Focus on Ability Short Film Festival. The festival aims to showcase the achievements and abilities of people with disability and create community awareness of disability issues through film.

Ian wrote and starred in the short film, What’s in a name?, to share his experiences living with multiple sclerosis (MS). We followed up with Ian to hear more about his story and his journey through the festival.

Tell us a little about yourself

Gosh, I could tell you a lot about myself! But this morning I finished my memoir. Written as a Christmas present for our two children, it is 500 pages (115,000 words) long and is titled Why Don’t You Get a Real Job?

The title came from my mother telling me that “writers and painters have more meal times than meals”, and I became both a painter and a writer. I managed to get to age 67 without missing too many meals.

I have a wonderful wife of 42 years, Annie. The kids are aged 29 (James, who is a naval engineer and officer in Adelaide) and 25 (Laura, who is an Accounts Director for an advertising agency in Sydney). There’s a lot of my life they don’t know about. They grew up on Sydney’s northern beaches, then we lived in Vanuatu for three years before moving to Toowoomba in Queensland.

How did you come to be involved in the Focus on Ability Film Festival?

I received a phone call from our daughter who was on a train heading to work when she saw a poster advertising the film festival. She suggested I check it out as she reckoned I had the “ability to focus”.

I had recently been involved in a Zoom meeting with academics at the University of Sydney and other MSers around the country about the little-known communication complications (losing words) that can be part of the disease, and that became my premise.

Tell us a bit about your journey through the festival

As soon as I had the script written I rang a mate, Shayne Cantly, who owns Shoot ‘N’ Edit studio in Toowoomba and we teed up a time to shoot it. I guess it took about three hours with various camera set-ups and takes in my home.

When I submitted it, Ryan from FOA emailed asking whether I preferred to enter in the Open Film or Documentary section. I had the same dilemma because, while totally factual, it had a lot of creative licence. He suggested the Open Film section so it was eligible for other awards, like Best Actor.

How did it make you feel when you were announced as a winner?

I was totally surprised. I thought the script was okay but I hadn’t considered myself an ‘actor’. It was first time on that side of a camera for me and I guess I only did it because I don’t know any actors with MS that could have pulled it off, especially on a zero budget.

Tell us a bit about what it was like to film your entry, What’s in a name?

As I said, it took about three hours to shoot. I had the words down, probably because the creative part of the brain seems unaffected, pretty much. My short-term memory is shot, thanks to MS, so learning someone else’s words might have been harder. It takes time to re-set lighting for change of camera angles and different takes, so three hours was probably quite efficient. Shayne and I see each other as a team because the time I spend writing a script probably matches the time he spends in the edit suite.

What has being part of the festival meant to you?

It was a bit of fun, and the most rewarding part was the positive feedback from other MSers for getting the information out there and non-MSers who both enjoyed it and learnt something.

What advice would you give to someone thinking of entering the Focus on Ability Film Festival?

Give it a go. Brainstorm an idea if you don’t have one… make it funny, make it moving, but just make it and get your story out there. You will feel good making it and feel good having made it.

Tell us a bit about your MS journey

I was diagnosed in 2010 with symptoms dating back a bit before that. My first diagnosis was from a French chiropractor in Vanuatu. I was visiting, got off the plane and dropped to the tarmac. I didn’t know that heat and humidity aren’t kind to MS. I went to my chiropractor thinking I had pinched a nerve in flight. He said, “Monsieur, you are walking as if your legs are on backwards. My son’s girlfriend walks just like that. I think perhaps sclérose en plaque!” So, on return, it was straight to a GP, then a neurologist and then an MRI and a lumbar puncture and, voila, my French friend was right.

We took a holiday to Dubai, UK and France in 2012 before mobility disappeared (I could still drive and walk with a cane – but I took a wheelchair so I could enjoy things like museums and art galleries). On return, a fall (thanks to a bout of MS fatigue) resulted in a skull fracture and bleeding on the brain, so that was when I decided to transition from a cane to a wheelchair pretty much full-time. And for about eight years it has been completely full-time.

Your film is about ‘losing words’. As a person with MS and a writer, what impact has this had on you and how does it make you feel?

I actually find it funny when I lose words in general conversation but when writing, if I lose a word, I’m appreciative of an online thesaurus. As I said, the creative and long-term memory parts of the brain seem fine. Now, where did I put my glasses?

What does an average day look like for you?

Without writing, very average indeed. I need to occupy my brain during the day. I usually kick-start the day around 6am. I need about 40 minutes each morning with my legs in a pumping device to stop oedema. Inactive legs mean the fluid doesn’t get pumped back up the body as it does with ambulant folk. I write nearly every day. I sometimes chat on the phone with friends. I enjoy a few wines when the day is over to relax and maybe watch some TV.

International Day of People with Disability was celebrated on 3 December. Why do you think it’s important that we recognise and celebrate the contributions and achievements of people with disability?

I don’t like the word ‘disabled’ that much. I prefer ‘ability’ because most of us can do things and contribute and achieve. To me a disabled bathroom means the plumbing is stuffed, I prefer ‘accessible’. I’m also not fond of the word ‘inspiring’. It is what it is and we all get on with life the best we can. It is important, however, to recognise and celebrate contributions and achievements so the general public becomes more accepting of people who have a disability as being a ‘normal’ part of society’s fabric.

What does inclusion mean to you?

That someone who has a disability, whether physical or intellectual, is accepted and feels comfortable within both themselves and society. Having said that, when it comes to employment there’s still a long way to go. Employers need to view candidates through the lens of the skills needed for the advertised position, and not the disability that catches their eye first.

What do you do for fun?

I write. I paint (canvases, not houses). I go ten-pin bowling (my right side works okay and they have a ramp for the wheelchair). I play piano. I used to play adequately until about a decade ago when I lost a lot of dexterity in my left hand. This year I have been taking weekly lessons to get as many good sounds out of my right hand as possible. The two pieces in progress at present are the Portuguese Love Theme and the Glasgow Love Theme from the movie, Love Actually.

What does the future hold for you?

Well, 2022 comes with the prize for Best Actor which involves a lot of acting workshops, mentoring and I even have an agent! So who knows, there may be roles on the horizon for an aging, wheelchair-bound thespian. Prior to Covid, I consulted to a resort in Vanuatu and arranged tropical weddings and honeymoons, so work may be back on the cards when borders re-open.

Is there anything else you would like to add?

Carpe diem (seize the day)! None of us knows what is around the corner and I get joy out of looking back at what I did while I still could – things like scuba diving, playing sport, dancing and shooting pool. I have no sadness at the loss of doing those things because at least I did them and therefore, no regrets. The same advice goes for people who have a disability. Focus on ability, not disability!

To find out more about Ian and his work, go to www.ianheydon.com

To watch all of the incredible films from the 2021 Focus on Ability Short Film Festival, go to www.focusonability.com.au