The Crown's learning disability storyline highlights painful lack of progress

There are 1.5 million learning disabled people in the UK, but they are rarely seen or heard from. Little is spoken of this demographic of people, who in many cases completely rely on others in order to live.

Unless you’re a family carer or professionally involved, you may not know or have regular contact with any learning disabled people.

However, in episode 7 of the latest season of The Crown, viewers learn more about the royal family and learning disabled people. Peter Morgan, creator of the series, writes about two learning disabled women, Nerissa and Katherine Bowes-Lyon.

In Morgan’s fictional depiction, Princess Margaret and the Queen discover that Katherine and Nerissa, their cousins on their mother’s side, are still alive, despite being listed as dead in Burke’s Peerage, and have spent their adult lives in an “institution for mental defectives”.

Despite being born into wealth and privilege, Nerissa and Katherine found that their background didn’t protect them from a harsh truth that still perpetuates today: learning disabled people are, in the main, forgotten.

I would like to be comforting, to ameliorate and to say the Bowes-Lyon sisters were born in another time; an age that lacked enlightenment, far removed from our own. But these institutions are still with us, now called assessment and treatment units, and a recent report showed that within NHS hospitals like these and some specialist schools, learning disabled/autistic people are subjected to prone restraint every 15 minutes.

The world knows how dangerous prone restraint is, because we watched in horror as a version of the technique was used on George Floyd this summer.

Related: Covid-19 deaths must prompt better healthcare for people with learning disabilities

I’d like to be able to look back to another time and place when I reflect on the fate of the Queen’s cousins. I want to say that things have moved on significantly in all areas of life for disabled people. But this month, the BBC is commemorating the 25th anniversary of the Disability Discrimination Act and seemingly only physically disabled people are being featured in the broadcaster’s celebrations.

Learning disabled people are still denied work opportunities; in England, only six in 100 people with a learning disability are in employment, compared with 52.5% of the wider disabled community in Great Britain.

And in the context of the pandemic, learning disabled people in the UK are six times more likely to die of Covid-19 and learning disabled people in the UK aged between 18 and 34 are 30 times more likely to die from Covid-19. Learning disabled people have not as yet been included on the extremely vulnerable shielding list, even though respiratory conditions were the leading cause of death of learning disabled people in 2018 and 2019.

In the episode The Hereditary Principle, Morgan chooses not to forget. He wanted to tell the world that these two women – the Queen’s cousins – existed. I loved the episode, and loved too that the production team chose learning disabled performers to tell Nerissa and Katherine’s story.

It’s key that the representation of learning disabled people onscreen is authentically rendered, which is definitely the case with the writing and direction. There is no sentimentality, no “inspiration porn” on view.

In 2009, I launched a campaign called Don’t Play Me, Pay Me after our then 14-year-old child was the first autistic person in the UK to play an autistic character, in the BBC’s Dustbin Baby. At the time, it was a radical notion.

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The campaign drew attention to the lack of disabled people in creative industries to highlight that disabled people’s ambitions aren’t diminished by a lack of talent, only by a lack of opportunity. I met broadcasters including the BBC and the campaign prompted widespread news coverage. I was diagnosed as autistic in 2014 and went back into the acting career I’d trained for, but if TV and film representation of disabled people is rare for young disabled actors, it’s even rarer for those, like me, in middle age.

In The Crown, Morgan puts the reason for the forgotten story of Nerissa and Katherine Bowes-Lyon’s secret lives and unmarked deaths as being down to the Queen Mother’s desire to protect the monarchy from her own personal, perceived family shame.

My question is that in keeping contemporary learning disabled people’s lives away from the public gaze, isn’t 21st century society guilty of denying and betraying our shared humanity in a world that would much rather forget that learning disabled people exist?

• Nicola Clark is a writer, campaigner and performer