ME and me: making films about disability to raise awareness

CAIRO - 5 July 2017: Disabled writer and actor Thom Jackson-Wood, who has ME, talks about his films, Awaken and The Black Box, both of which are about disability.

Written after frustrations at disabled people being misrepresented on TV, he hopes the films will raise awareness of different disabilities, and ME in particular.

What is ME and what are some of the issues that you deal with on a daily basis?

Myalgic Encephalomyelitis (sometimes called Chronic Fatigue Syndrome and known for short as ME), is somewhat difficult to explain. Action for ME defines it is a long-term (or chronic), fluctuating neurological condition that causes chronic fatigue and pain.
Imagine being tired all the time, unable to shake it off with a long sleep, and being in pain, even when you do not do any physical activity.

Additional symptoms can include lapses in mental processing (commonly known as ‘brain fog’), extreme sensitivity to light and sound, gastrointestinal issues (with your stomach and intestines), incontinence, partial paralysis and social anxiety. However, this is not a complete list. Generally, the more severely you are affected, the more likely it is that you will have to deal with additional symptoms.

However, this is not a complete list. Generally, the more severely you are affected, the more likely it is that you will have to deal with additional symptoms. Everyone with ME has in different levels of severity, and it can often target certain areas of the body.

In my own case, I would say I am moderately affected. I am able to lead a relatively active life – I can work part-time as an actor and writer. Being able to work from home where I can rest when necessary makes a big difference.

However, as I have serious chronic pain in both legs, I find walking very difficult and therefore use a manual wheelchair, a mobility scooter or crutches to get around. ME has also messed up my bladder control, so I wear incontinence pads all the time. As such, while my ME has only moderately affected my fatigue, I am more severely affected by additional symptoms.

What are your thoughts on how people perceive ME?

The thing I struggle with the most though is ignorance. ME continues to be a very misunderstood illness, and there are even disagreements over what to call it, let alone how to diagnose or treat it effectively. Despite having been listed as a neurological illness by the World Health Organization since 1969, and the first diagnostic criteria for ME being drawn up in 1986, ever since the 1970s ME has been treated as a psychosocial or biopsychosocial illness, ie. It is all in the person’s head. Having lived with the condition for nine and a half years, I can assure you that it isn’t.

ME is also often referred to as Chronic Fatigue Syndrome (CFS). While I understand why people may want to call it that, CFS is only part of the puzzle that is ME. While the two conditions are related, they are not the same. Think of ME as the bigger, nastier brother of CFS and you’re getting there. As I’ve found from my own experiences, chronic fatigue is not the only issue I deal with, and many of my other ME symptoms affect me worse.

What have you done so far in your career?

To date, most of my acting work has been on stage. I’ve toured with Graeae Theatre Company in two of its shows – Prometheus Awakes and The Iron Man. I have also appeared in a number of commercials, including the Channel 4 Meet The Superhumans for the Rio 2016 Paralympic Games. I’ve also done some extra work in EastEnders and The Theory Of Everything.

I’m represented by VisABLE People, which is the world’s first talent agency that is dedicated to supplying the creative industries with disabled actors, presenters and models. Created by Louise Dyson in 1993, it began as a modelling agency for disabled models. But it has now branched out to become the go-to agency for any disabled talent.

I’ve been represented by Louise since 2011. In addition to providing mainstream audition opportunities, she has taught me a lot in how to work as a self-employed artist in what can be a very cut-throat industry.

What made you decide to make films about your condition or disabilities in general?

I began writing screenplays when I got sick with ME, mainly as a creative outlet. It was also a coping mechanism and a way to try and make something positive out what was a mostly negative situation.

I then began writing about disability in general because there was so little material out there that I could relate to. In addition, what did exist wasn’t very original and it relied too much on non-disabled people’s perceptions, or misperceptions, of disability. So, rather than moan about the lack of representation of disabled people, I thought I would do something about it myself and write it.

I feel that I have only just begun to scratch the surface of stories about disability, and how to bring them to life on screen. I want to create something fresh and exciting that does not hinge on clichéd stereotypes of disabled people. I feel I am well-placed to do so from my own experiences.

You’ve said that both Awaken and The Black Box aren’t necessarily documentaries, they’re stories. Without giving too much away, what kind of stories are you trying to tell?

The best way to describe Awaken and The Black Box is to say that they’re fictional films that are inspired by true events, so a docufiction style. I could have told the stories of Awaken and The Black Box in a documentary style, but they would have looked a lot like telethon appeals, which I was keen to avoid. Rather than present my condition as a series of facts, I wanted to use it to tell a story. So they essentially use fiction to tell the truth.

In addition, both of the films are about elements of my life that have been reworked into an abstract setting in order to make ME better understood by people. In Awaken, you see a man trying to achieve his dreams, but he is held back by a number of issues, including ME, an autistic spectrum disorder and benefit cuts. In The Black
In The Black Box the main character is a writer who has been unable to finish a story because of his ME. This creates tension between the man’s muse, who wants him to finish a project, and his ME, which continues to slow him down.

Why do you think it is so important to have docufiction films like this?

The human brain is wired for stories. Before film, television, radio and even theatre, there were stories. Before people could read and write, the only way of education was to tell people by word of mouth, and the easiest way to do this was to tell stories.

Within these stories are characters that we, the audience, are able to relate to, who can subconsciously teach us on a deeper level. My main reason for writing Awaken and The Black Box as narrative fiction was because I wanted to create a character with ME that people would be able to relate to and identify with, even if they didn’t have the condition. For me, it was the best way to spread awareness of the illness.

Have there been a lot of films where a character with ME is the main protagonist?

There are currently three feature film documentaries about ME that have been released to the public: I Remember ME (2000), Voices From The Shadows (2009), and Unrest (2017), which has just won the award for Best Editing at Sundance Film Festival. There are also a couple of short documentary films that have been released.

But, to my knowledge, and also that of several experts whom I’ve asked in both ME and independent film networks, I’ve not yet seen any narrative, short or feature-length films that include a character with ME. I would like to think that someone has done it before, but if not, you have to start somewhere. As such, it’s possible (but not confirmed) that Awaken and The Black Box will be the first narrative films about ME ever.

The films are both set within an actual black box. What was the reasoning behind this?
I felt that keeping everything contained in a single space would visually represent the extreme isolation you can feel when you have ME. It’s also because of the black box theory of computing, science and technology – where you see what goes in and what comes out, but you have no knowledge of its internal workings. This highlights how much we still don’t know about ME.

A final, personal reason was inspired by flight data recorders on aeroplanes and trains, which are commonly known as black boxes. In ME and chronic illness circles, if your symptoms worsen suddenly, this is commonly known as a ‘crash.’ The theory behind this was that if my energy levels ‘crashed’ these films would serve as data recorders of my life – in other words, Awaken and The Black Box would become my own black box recorder.

This article was originally written by Meghan and published in Disability Horizons