Welcome To The Black Box...
My name is Thom Jackson-Wood and right now, I really need your help.
I know that 2020 has been a hard year for everyone. We've all had to self-isolate for large parts of the year, because of Coronavirus. It's a mysterious virus that we don't know much about, and that scares people a lot. And I totally understand that.
But for you, this is a crisis. For me, this is my normal.
I have a medical condition called Myalgic Encephalomyelitis (ME). This means I've been living in lockdown for over thirteen years.
What is ME?
Myalgic Encephalomyelitis means "inflammation of the brain and the spinal cord" in Greek. In simple English, this means my spine and brain are on fire with pain - which is exhausting. So exhausting. that I have chronic fatigue - which is not relieved by sleeping.
However, there are other symptoms that I deal with, including:
- Memory loss (for certain periods, known as "brain fog")
- Chronic Pain in my legs - which means I need a wheelchair to get around
- Bladder Incontinence - which means I have to wear nappies to stay dry.
- Chronic Anxiety - because at any given point, my body may give out on me.
- Frequent Migraines - which force me to lie down for hours at a time.
However, despite all of these health issues, my ME is considered moderate, compared to what other people with ME face. Much like Autism or MS, ME is a spectrum, where some people with the condition are affected by it worse than others.
People with Severe ME are so badly affected that they are bedbound, and they have to sleep most of the day. They are also more sensitive to light and sound.
More information about ME can be found at www.meaction.net
You started making The Black Box in 2015. Why has it taken so long?
I've not said that much publicly about why it's taken me so long to complete, but there have been reasons:
- Firstly, I've been busy on other projects, This included acting work on Casualty (2018) and performing the lead role in a new musical Sex and Disability (Purple Playhouse Theatre 2019), as well as making a documentary film A Peace Of Europe: Brexit, The EU & The Good Friday Agreement (2020), and filming content for Millions Missing 2019 and EU Flag Proms In The Park. This also involved travelling to a lot of different places within England, Northern Ireland, Ireland (ROI) & Belgium, which wasn't easy for me.
- Secondly, we realised we needed more content. After reviewing the footage we had of the film in 2018, we realised that we had to shoot pickups. After filming these in January 2019, we then struggled to find an editor for a year, due to how complex the film is and how little funds we had available. After meeting Harry Crossman in January 2020, we knew we had found the editor for the project.
- Thirdly, I've had some personal setbacks, My health situation has become more complicated - in 2017 I was diagnosed with a neurogenic bladder and in 2019 I was diagnosed with Fibromyalgia. These were not new conditions, but it underlines how complicated my overall health situation is, and how little we know about it. And it took me time to process everything.
- Fourthly, when you have ME, everything takes longer to achieve. Because of how much time you have to spend recovering from even small activities. It's one step forward, two steps back. Considering how bad my overall health is, the fact that I have been able to make it this far is impressive. Yet again, I am thankful for everyone who has supported us over the years - and their endless patience as I take the time I need to recover.
- Finally, ME has raised another challenge - the blunt fact that a lot of people with ME won't be able to watch this ME awareness film when it's complete. Because it will be too stimulating for them to watch - there's too much info to take in.
And for me, as a filmmaker - that's a real problem
- On the one hand, I want to make a stimulating ME awareness film, that will help people who don't have this condition understand what it's like - one of the biggest problems with ME is that people who don't understand it don't know what it's like. They can't believe that someone could be that sick 24/7, because they've never experienced it.
- But on the other hand, I want to make a film that people with ME can watch and share with their families and friends - which can be a great way of spreading awareness of this condition. The groundbreaking ME documentary film Unrest (2017) does a great job of explaining the scientific causes of ME, but it's 1 hour 38 minutes long - people who don't know much about ME may not want to spend that much time watching it. But something shorter, more visceral, might draw them in, and start conversations about it. It may also help some people as a diagnostic tool - because a lot of GPs/Primary Care Physicians don't know about ME, or the effects that can be caused by it. So this film could help people get diagnosed faster - it could change lives.
- So what this means is, we've got to make the film TWICE - one cut for people who don't have ME, and one cut for people who do.
And this is where I need your help:
How do you make a film accessible?
To make this film accessible, we need to include the following:
- Subtitles - For people who are D/deaf or hard of hearing
- Audio Description - For people who are blind or visually impaired
To make this film as accessible to people with ME as possible, we'll need to take out the following:
- Sudden changes in lighting/contrast (e.g. lens flares or dramatic lighting shifts)
- Sudden changes between shots (e.g. no quick cuts to different footage for effect.)
- Sudden changes in narrative (e.g. only one clear narrative in the story, and one clear focal point. Each of the shots has to flow naturally from one to each other.)
- The soundtrack - instead the only thing we'll have is a steady heartbeat to just keep time. It will propel the story forward in the least obstructive way.
The cut with these access changes is known as the First Light Cut, as a reference to those moments where you wake up, but still feel sleepy - people with ME spend most or all of their day in this state.
Why No BSL/Sign Language?
We'd love to include sign language to our short film too, but at this stage, we can't do it with the funding that we have. But, if you help us go over our target, we'll put sign language in too. It's just a question of time and resources.
Who are you working with?
I'm very fortunate to be working on the post-production of this film with some very talented people:
Rebecca Holbourn - A writer/director from London for stage and screen, Rebecca has created a bold vision for the film which is dynamic and plays with light within the shadows. It was her idea to shoot the film in a black box theatre space, which allowed us to use dramatic theatre lighting, giving the film a bold look that you wouldn't find on a low-budget project. Having written and directed Under The Sheet (2019), and shot footage as a camera operator for the short documentary A Peace Of Europe: Brexit, The EU & The Good Friday Agreement (2020) (Best Documentary & Audience Award, European Short Film Festival 2020) Rebecca will showcase how you can tell a conventional story in an unconventional way.
Harry Crossman A writer, director and editor, Harry is a Met Film School graduate who will edit our film. His previous editing work includes the short films Grasslands (2018, Official Selection Lone Star Festival 2018, Bute Street Festival 2019, Cardiff Mini Film Festival 2019) and Scuttle, (2019, Finalist, Picture Show Panic, 2019, Official Selection, Fantasm's Shock Reel Cinema Film Festival 2019), Harry's strong track record and his ability to shock will mean he is the perfect choice to cut together a film about the real-life horror story that is ME.
Dot Alma: An Audio Describer for Drag Cabaret Shows in London, Dot moved into the world of film due to the Covid pandemic, and is now looking to find new ways to apply their talent of Audio Description. They are particularly excited when disabled people write their own AD (as opposed to someone else do it for them), as this allows the world of Audio Description to become more diverse and authentic.
Justin Edgar & Alex Usborne, 104 Films: Justin and Alex are pioneer indie filmmakers and have blazed a trail to make the world of filmmaking more accessible for disabled people, through their production company 104 Films. They have very kindly offered to serve as Executive Producers and help us steer the film through post-production while in lockdown
So - How Much?
We've done a rough budget and we reckon that we can put these access costs for £1,000.00
I am aware that this is a lot of money, especially right now.
But I wouldn't ask you to do something I wouldn't do myself
I don't have much money, but I am able to put in £150, thanks to Covid self-employment relief.
Therefore the amount I am asking you for is just £850.
We also have a wide variety of perks that we are able to offer you in return for your support.
Why are we doing this now?
- We are doing this now, because 2020 has given you an idea of what it's like to live with a chronic illness - imagine having to self-isolate like this for the rest of your life.
- We're doing this now because people with ME have been ignored for decades. For far too long, people have been unable to comprehend what it's like to live with - now you you've had a taste of what it's like. This illness is real, and it's been denied for decades - so if not now, when?
I realise that 2020 has been a hard year for you, but it's been even harder for people with ME.
For people like me.
Writer, Producer, Actor
Life's Green Pictures
The Black Box: Awaken