Being Heumann already a big win for disability representation on screen

A key scene in upcoming film Being Heumann features a woman with mousy brown hair and 70s glasses, driving her wheelchair down the middle of the road, flipping the bird to a bus driver as she goes past.

For many, it will be the moment they first meet Judith Heumann and start to learn about the disability rights movement she helped lead.

While the American civil rights and marriage equality campaigns have featured prominently in mainstream school curriculum, it wasn't until I watched the 2020 documentary Crip Camp that I learnt of the American disability rights movement of the 1970s.

It follows a ragtag group of youngsters who meet at a disability summer camp in 1971 and go on to organise protests and campaigns to address the systemic discrimination faced by disabled Americans.

Inspired by the documentary and as a physically disabled person, I immediately purchased Ms Heumann's memoir, and dived into the history of the movement.

How could I not be stirred by key events such as the 504 Sit-ins, at which activists occupied a senator's office for weeks until he accepted their petition to amend the US Rehabilitation Act (1973) to prevent discrimination on the basis of disability.

This amendment would later result in the first iteration of the Americans with Disabilities Act (ADA) (1990).

Ms Heumann died in 2023, aged 75, though her legacy lives on, as does the fight for disability rights.

Being Heumann

In the new film, Ms Heumann is played by British actress Ruth Madeley, who lives with spina bifida. 

The co-author of the screenplay is American disability activist Rebekah Taussig.

Already we have two people involved in different aspects of the storytelling process with lived experience of disability.

This is significant for two reasons.

Accuracy vs stereotypes

Firstly, stories that centre on or even feature disability have historically been written or created with little to no consultation with people who have lived experience.

Non-disabled actors have been encouraged to "crip up", the colloquial term coined by the disabled community to describe when an able-bodied actor changes their physical appearance, mannerisms and speech to portray a disabled character.

Some of these performances have even garnered critical acclaim, such as the Oscar-winning turns of Daniel Day-Lewis in My Left Foot (1989) and Dustin Hoffman in Rain Man (1988).

But this means the resulting product is often inaccurate or can even perpetuate harmful stereotypes.

Take the frustrating movie Me Before You (2016), which is based on a book written by a non-disabled author and was marketed as a romance between a physically disabled man and his female caregiver.

It centres on the caregiver (Emilia Clarke of Game of Thrones) as she develops a relationship with a wealthy businessman (Sam Claflin of The Hunger Games), who is in a wheelchair.

Despite his carer's best efforts to convince him otherwise, Claflin's character seeks to end his life through voluntary assisted dying, because, as he makes abundantly clear throughout the movie, his is a life not worth living.

It is implied that the very act of ending his life is supposed to be a selfless one, meant to save Clarke's character from enduring a life with him.

Many viewers were left with the impression that disability inherently renders a person's life worthless, calling the film "disability snuff porn".

Many different stories to tell

The second benefit of giving disabled people the chance to tell disabled stories has to do with the content of these stories.

Typically, these narratives fall into two categories.

Either the story is one of inspiration: it says, "look how amazing this person is for simply getting out of bed in the morning, look at all they have overcome" (what Australian disability activist Stella Young termed '"inspiration porn") or the story is a tragedy: "look how sad this person's life is, we should all feel sorry for them".

These types of narratives perpetuate misinformation and harmful stereotypes.

They don't acknowledge the complexity and nuance of the disabled experience, and rarely centre on the disabled character themselves, instead rendering them a plot device in another able-bodied character's journey.

That's not to say there are zero examples of good disability representation.

Latecomers (2022) is an Australian TV show that aired on SBS and had multiple writers and actors with lived experience attached to the project.

The comedy, starring Hannah Diviney and Angus Thompson, follows the two characters as they navigate the highs and lows of dating with a disability

The characters, like most people, are not always perfect, but they feel much more relatable to a disabled viewer.

The making of history

Being Heumann promises to be a true story of triumph after years of organising, struggle and advocacy.

It is a story of collective defiance and empowerment, of a revolution and the fearless leader at the centre of it.

Not only that, but it is created by people who, decades later, actively benefit from the change created during that moment in history — people who not only know the story but feel its impact viscerally.

We have to wait until November before the movie hits a select number of theatres and a streaming service.

But I am excited for the world to finally meet Judith Heumann and learn about the extraordinary actions of those behind the American disability rights movement.