The highly acclaimed dramatist and playwright spoke passionately during his 45-minute James MacTaggart Memorial Lecture about disability being the forgotten diversity in the television industry and a call to arms for the way forward.
Jack is a celebrated and multi-award-winning creator and writer of TV shows, films and stage plays ranging from His Dark Materials, Kiri, This is England 88,86 & 90 and The Virtues to Enola Holmes, The Secret Garden, Don’t Take My Baby, The Solid Life of Sugar Water and Harry Potter and The Cursed Child.
As a disabled professional, Thorne is a vocal champion, campaigner and ally of other disabled creatives both in front of and behind the camera.
JackThorne began his MacTaggart lecture as part of this year's Edinburgh Television Festival, which promises to "accelerate change" by declaring his love for television, "My superhero skill as a child was working out ways to watch it for longer. Maximise every second I could spend in front of that precious box. My sister and I would take it in turns to watch the window for my Dad to come home whilst the other watched Neighbours. He didn’t like Neighbours, we liked it so much we would watch a window every other day for 20 minutes in order to get our dose."
Describing the art of creating television as "incredibly important" he went on to say "I think TV is beautiful. An empathy box in the corner of the room. An opportunity to provoke discussion. For me, watching TV with my Mum or my sister was always about talking. Working things out."
Citing Mark's HIV storyline in EastEnders, Russell T Davies' Queer as Folk and Alan Bleasdale's Boys From The Blackstuff as some of the shows that provoked discussion growing up, teaching him lessons he described as better lessons than those at school.
"I think that TV is where we find our place in the world, and at a time of great cruelty, TV is vital at reminding people of what humanity is. We have all lost so much. And, personally, I think the greatest thing we lost was a bit of humanity. Because this year was a year of ableism like I’ve never seen before. This was a year when a lot of disabled people died."
Jack Thorne's upcoming Channel 4 drama Help, starring Jodie Comer and Stephen Graham, is set in a fictional Liverpool care home and tells the moving story of the relationship between a young care home worker and a patient, whose lives are changed forever by the onset of the coronavirus pandemic in spring 2020.
Speaking about the research he did for that series, he revealed "I spoke to people who worked in care homes who anecdotally told me far worse stories – but those are impossible to state here for legal reasons. And it is worth saying that is the only time doing research I’ve ever had someone crying as they tried to deal with their own culpability."
"Through my job I’ve spoken to sexual abuse survivors, to people struggling through adoption, people who have lost huge things and there isn’t, of course, a trauma league, but the rawness I encountered speaking to carers was like nothing else."
"They thought they were responsible, they thought they let their residents down. Of the 48,000 Covid deaths in that first wave, 40% were care home residents. Forty per cent. And it wasn’t just care homes, disabled people all over were denied treatment. They were seen as more acceptable to die, because of conditions that had no relation to Covid 19."
"Friends of mine were told they would not get ventilated even if they needed it. Because their lives were not seen as vital. A new study, partly carried out by the ONS, estimated that, in England, between 24th January 2020 and the 28th February 2021 105,213 people died from causes involving COVID-19, 61,000 of those were disabled. That’s almost 60% of all deaths."
"And how did the country react? By using the term that helped them accept this unnecessary death. Underlying Health Condition."
Speaking about his own disability, Thorne explained how he "was a disabled person for about fifteen years, but disability can be transitory, and I don’t consider myself one anymore. But I do consider myself part of the disabled community and I am very proud to be so."
When Jack was 20, he developed a condition called cholinergic urticaria which made him allergic to outside heat as well as artificial heat, describing the pain he'd feel every time he moved - "Every time I moved, I would develop welts, and was in pain. I had to leave University, I went home, I stayed in bed. Some days were better than others, but most were pretty abysmal. I lay in my room in January in Wales with all the windows open and felt sorry for myself. I didn’t know what it meant, and I didn’t know where I fitted."
Acknowledging his privilege as a "state-educated but well-educated - white man" Thorne explained how because his condition was invisible, he didn't openly "experience prejudice" - "And as such, I have had opportunities that my disabled family have not."
"As a result of that – as a result of that history and my opportunity – I have considered it a vital part of my working life to try and further the disabled cause. And in the most part I’ve failed."
"Mostly because of my own inadequacies. But also, because the TV world is stacked against the telling of disabled stories with disabled talent."
"And that has to change because this is the thing – at a time when disabled people were so recently forgotten, at a time when disabled people were left to die, at a time when disabled people are still being ignored, TV has a responsibility."
"That empathy box has a responsibility. And yet, disability is the forgotten diversity, the one everyone leaves out of speeches. Gender, race, sexuality, all rightly get discussed at length. Disability gets relegated out. In conversations about representation, in action plans, and new era planning, disability is confined to the corner, it remains an afterthought."
"Actors – actors I admire - have taken roles they shouldn’t have; I’ve been complicit in some of those decisions. Producers have ignored disabled writers. Commissioners haven’t taken the opportunity to tell disabled stories. There are very few disabled people in front of the camera, and even fewer behind it."
Claiming "TV has failed disabled people." Thorne goes on to question how we change it, describing it as "not simple".
"Firstly, there is an attitude change needed. An attitude change as to the importance of disabled drama. This is a prejudice I’ve witnessed first-hand over and over again."
"The first drama series treatment I ever wrote was a wheelchair basketball drama. I was asked to consider writing it about a non-disabled basketball drama team, because it was “full of good ideas” and it needed “the best chance it could”."
"The fact it was disabled was dragging it down. Up to this year I had never made a single disabled story on a full drama budget."
"First I made The Spastic King on Channel 4’s Coming Up budget, then I made a made a full series called Cast Offs on a specific Channel 4 disabled budget, we had to do it for £100,000 an hour, one sixth of normal drama budget at that time, then I made a show called Don’t Take My Baby on a BBC drama doc budget."
"The show I’m making this year – Then Barbara Met Alan – which is cowritten with Genevieve Barr, one of the most talented writers I’ve ever come across, we’re making out of the history department, but thanks to the BBC finding more cash and a Netflix co-pro we have been brought up to normal budget. Yay."
"These are the shows I’ve made, but I’ve thrown many more ideas at commissioners in that time, all have been rejected."
He acknowledged that "There are disabled characters and actors appearing in other series – Liz Carr in Silent Witness, Arthur Hughes in The Innocents, Cherylee Houston in Corrie, David Proud, Rose Ayling-Ellis and Lisa Hammond in Eastenders, Sarah Gordy and Leon Harrop in The A Word, Tommy Jessop in Line of Duty, Ruth Madeley in Years and Years, Melissa Johns in Life. The list goes on. It is happening."
Before adding "But these are disabled people fitting in with non-disabled narratives, sometimes there’s great care taken in telling their stories within it, sometimes there’s not" - recommending that delegates listen to David Morrissey interviewing Liz Carr on her experiences in the industry from his podcast Who Am I This Time.
Pointing out how there are no stats for how many disabled people are employed to tell disabled stories in the UK, Thorne reference the 2018 Ruderman White Paper on Authentic Representation in TV, which found that across "across American network TV a mere 22% of characters with disabilities were portrayed by an actor with the same disability and on streaming platforms it was even worse - 20%."
Adding "since 1988, about one third of all the lead actor Oscars went to actors who portrayed characters with disabilities, yet not one of them had the disability which they played. This is a historical problem but it is a current problem. And very few are making our case, in the press and outside."
"And what is true for actors is also true for writers and directors. The stories I’ve heard from friends and colleagues are devastating. Where directors have been told characters and casting may be “too disabled”. Where people have pointed out ableism and been openly threatened as to their future careers. Where disabled writers invited into writers’ rooms have been unpaid, have been asked to pay for their own support, where commissioners and producers become fixated on their disability and not their range and talent, where they’re castigated and patronised, where they’re made to feel like they’re the one that’s made the situation uncomfortable."
"And in one very horrific case a writer talked about being attacked and bullied for raising a cultural concern, and after suggesting an idea involving disability that the show then used, being denied the opportunity to write or co-write it, in fact being denied any credit at all. Their work was stolen. As this friend wrote to me “if my exact experiences had happened to another type of minority, would they have been taken more seriously?"
Referencing BBC drama Criptales - told exclusively by a mighty team of disabled talent - and upcoming BBC One drama Ralph & Katie - a spin-off of Peter Bowker's The A Word, Thorne did acknowledge that "things are slowly changing. [...] But it’s all quite piecemeal, it’s not undercut with serious thought, it frequently relies on disabled makers being brave and putting themselves in uncomfortable situations and – most importantly - it’s not fast enough."
Talking about what needs to be done, Thorne explained how "Disabled stories need to be told and when they are told they need to be told with disabled people. It’s an obvious thing to say: it isn’t happening."
"Secondly, disability needs to be seen as more than one thing. Disability is scary, talking about disability is scary. I still make mistakes in terms of how someone’s impairment should be discussed. But as a result of that fear, the complex becomes simple. And TV’s greatest power is when it runs towards a complexity, not away from it."
"Disabled people and disabled stories tend to be relegated into two camps, heroes or victims, preferably they’re both."
"There is a difference between disabled stories and stories about disabled people and we need both and we need those people to be people first and disabled second, because that’s the reality they live in."
Reiterating his point on disability being the forgotten diversity in the television industry, he said "...disability is a diversity. Learning, invisible, physical, neuro, yes, but also just a diversity of experience of personality. It’s so obvious to say and yet it is so rarely represented. And it needs to be."
"It’s hard to write to this diversity but in my experience, disabled people are very open and very willing to talk about what their condition means and how it might impact the writing process."
"Don’t be invasive but do be inquisitive. Ask them questions they’re not asked. Ask them how they deal with their guide dog defecating on the street. Ask them about the difference between a wheelchair user and an ambulatory wheelchair user. Ask them about their pain. A lot of disabled people are in pain a lot of the time, do we see it on TV? Rarely. Or better yet, better than asking any of those questions – hire them to tell their own stories themselves."
Spelling out the need for quotas, Thorne made the point that "In order to get this diversity, disability needs quotas. Desperately needs quotas. There is an intention to change, but that intention is not backed up by impositions on the makers to change their ways."
"The stats need repeating again and again and again. 20% of our population are disabled, a mere 8.2% of on-screen talent represents them, and a terrifying awful 5.4% of people work off-screen, of which, and this is most damning of all, the executives at the top are only 3.6% disabled."
"The Creative Diversity Network announced in partnership with broadcasters to set a target of doubling disability representation in front and behind the camera by 2021. Their interim report stated that by 2020 instead of seeing the sort of rapid change that was required for this, the growth was only 0.9% and so it is “unlikely” the target will be reached by end of 2021 and that target, as the report itself states, is not enough to make representation truly proportional."
"According to the CDN it will take until 2041 at the current rate of growth for disability in off-screen roles to truly reflect the make-up of the UK. To get that vaunted 20% representation. I know the Black Lives Matter movement has a long way to go, and that no-one is satisfied with our current state of affairs, but I can’t tell you the difference it has made to casting conversations. That need for representation. The fact that the same white names and faces aren’t presented in every conversation."
"Actors, writers and directors of colour are finally being elevated, and it means that there is starting to be a complexity to the stories being told on TV. However, the conversation on disability representation is nowhere near as advanced, I have had conversations about disabled talent for years where some of the most appalling things have been said."
"A casting agent I really admire said to me once about a disabled actor “we just don’t want to overextend them”. Would you ever say that about a white man? Would you say that about anyone but disabled talent? This casting agent said it out loud, a lot of people think it."
Thorne believes that "Firm quotas behind and in front of the camera would fundamentally alter the stories being told. And these quotas need enforcement. I am firmly behind Lenny Henry’s Representation Tax Relief idea, and feel disability would really benefit from it. I also think the plan David Olusoga outlined on this stage last year for DCMS to use its powers to set up a body to enforce these standards is an incredibly good one. Why not have both?:
"And these quotas need to be everywhere. Because change is required throughout our sector, not just in the making portion. Crucially it needs to be in drama schools and training institutions. Drama schools in particular have been the bastions of privilege for so long. I can’t tell you how important it is that we kick in those doors."
The final thing Jack Thorne believes needs to change, is "...that disability needs the buildings to be different. Sit on a panel with disabled artists and the thing you hear again and again is that no-one considered that the honeywagons – and for those that don’t speak fluent film and TV – honeywagons are toilets – were inaccessible to wheelchairs. Which means when they need the toilet they have to cause a fuss."
"Deaf people are denied conversations with key personnel because there isn’t a good enough communication system in place. Offices are on inaccessible floors and flooring is inappropriate for wheelchair use. These are buildings and outside facilities that are not fit for purpose where disabled people are concerned – and they need an upgrade, everything from fitting lifts with tactile buttons, to disabled parking bays, to visual fire alarms to quiet rooms away from set."
Thorne went on to tell a horrifying story about a good friend of his who cannot walk; having to "crawl up the steps and along the floor to get to her desk", having to sit on a box of printer paper so she could reach her desk, having to drive to Tesco once a day to use an accessible toilet and having to leave her electric wheelchair outside in the rain to potentially break and leave her, in Jack's words "totally screwed".
After telling her story, Thorne asked "Now, you may sit there and say, why didn’t she ask for help, an accessible toilet, a ramp or all of the above?"
Pointing out that "...therein lies your problem. With no funding pool available and the film budget tight she had nowhere to go to ask. And because she, like most disabled people has learnt to fit into a non-disabled narrative - to work hard, to do her job and to not complain, nothing changed. No-one should be treated that way." before criticising the government's Access to Work scheme - which he claims "doesn’t function as it should."
"In reality most freelancers in our industry are on three to six-month contracts and, at best, have a few weeks’ notice before they are required to start work. Access to Work takes months to apply for and get approved, by which time the production has already wrapped, is in post and that individual has missed their opportunity for employment."
Announcing 'Underlying Health Condition', a pressure group set up with Katie Player and Genevieve Barr to look into this, Thorne explained the group's name by declaring "frankly, TV has one."
"We’re about eight months old and we’re not ready to report yet, and for those institutions who haven’t returned the surveys we sent out, please do so. We are currently consulting and researching and working on a plan for industrial support for this industrial change. Because making these changes will cost, and after a pandemic they cannot simply be passed onto the studios, we will need the industry to pay for it."
"With a dedicated fund we can make every space accessible and create rules for the building of further spaces. Not just inside studios, but also outside facilities. This fund will cost us comparatively little as an industry and yet make a huge difference to getting those percentages up behind the scenes."
"We need these spaces to be truly inclusive so that never again will people will be crawling across the floor, never again will people be denied a meeting because of lack of access, never again will disabled people be excluded because of the spaces we work in."
"The fight won’t be over then, the Social Model of Disability requires constant vigilance. The space is one thing, but as many of my examples show, an accessible floor does not make for an accessible experience."
"The 1in4 coalition – a brilliant organisation in the US – talks about the need for a set accessibility coordinator. Similar to the role an intimacy coordinator performs, and what a vital role that has become, it’d be someone to protect conditions and make sure everyone is comfortable."
"It’d give a disabled member of a company a point of contact and an understanding. DDPTV’s amazing report on Disability by Design states “60% of participants reported experience of some form of ableism or discrimination while working or seeking work in the TV industry”. It will take all of us watching all the time to force that figure down."
"These two measures combined will change the experience for disabled people in our industry forever, and perhaps lead to a fundamental adjustment of the type of stories we tell."
As his lecture drew to a close, he described himsefl as "far from perfect" and didn't wish to speak for the disabled community, but rather for himself.
Describing one moment where he failed, Thorne said "I had a disabled actor on a TV show I was making have his part cut in half in front of me. Literally, in a meeting in front of me, by a director I was working with."
"He thought my friend wasn’t up to the job, he was wrong and, in my opinion, prejudiced. I said something, but I should have said more, I should have walked out of the room, I should have refused to be part of it, I should have shown what this actor needed - solidarity. I did pathetically little. Another actor was cast and my friend’s part trimmed to almost nothing. As such they were given an awful lot of standing around to do, but very few lines."
"They later wrote to me “in making those choices, you… relegated the only meaningful disabled actor to the background” . And I tell you, the shame of that…. The shame…."
"I think this last year has been about cowardice. The ignoring of the disabled experience. The ignoring of the unnecessary deaths of tens of thousands. And the time has come for TV to change. To reflect the experience of millions, and to protect – to some degree - these millions through empathy. To do this, requires bravery on all our parts."
"And if that bravery happens – I am optimistic change will happen. Because I genuinely believe in TV."
Ending his lecture with a poem by Jamie Hale from his poetry collection Shield - someone he met as part of the Crips without Constraints scheme that Graeae run - Thorne decribed Jamie as "an extraordinary voice. Like a lot of disabled people Jamie was told the treatment open to him would be limited in a time of Covid, that he was a “low priority” patient. He understood the deadliness of this and wrote this poem about it."
Here's his poem, in full, as read out by Jack Thorne during this year's James MacTaggart Memorial Lecture:
i write an email to my GP telling him please
i love my life telling him please I want to be
the opposite of a Do Not Resuscitate order
the opposite of a patient you’d give a quiet death
o god let me die loudly let my ribs crack
i will arc with shock please i’d rather die
as i’ve lived as i’ve lived filled with love and
i’d rather die fierce as myself, every time
every bloody time, so I tell him what I do
wave my accomplishments my desperate
shield of fragile silk; i hide and tell him
i have value over and over and over
and over as if i wasn’t sat at the keys
crying silently and telling him this
The final words of Thorne's moving lecture explained how "Thankfully Jamie survived. But he survived by not catching Covid. Because if he had, and were he hospitalised, he would likely not get a ventilator. The help we all rely on, was not there for him."
"And now he and many others need venerating by our industry so that he is seen, and heard, and hopefully our empathy box can help make sure he and others like him, will never be treated that way again. So that one day we can look back on this pandemic and the way we treated others with the disgust it deserves."
"The director Nickie Wildin said something that always stayed with me, we are all pre-disabled. So, whether it is in self-interest or in the interest of others, the time has come to scream."
Watch Jack Thorne's sensational, sobering and moving MacTaggart lecture, in full, here...