Reading time: 11 minutes

Introduction

In my downtime, I often to look to Meetup.com for inspiration and the chance to connect socially.

For some reason, the Meetup app has started prioritising UK events in my feed. This would be annoying, except that the ongoing threat of COVID-19 encourages participation via remote video chat. Timezone issues aside, this means that I get exposure to some great content, which I wouldn’t otherwise.

And so it was that I stumbled upon an interesting sounding event from The Absolute Basics of Photography meetup group. Titled Exclusive Film Screening: Visual Impairment, Social Stigma and Empowerment, it was at 6am local time. I clicked the Attend button and hoped that I wouldn’t sleep in.

The event description contained a link to an interview, titled Documentary and Disability (interview). The interviewee was Dr. Catalin Brylla, a scholar from Bournemouth University. He was being interviewed by Darren Gormley, organiser of the meetup and also the creative director at RIIVE. RIIVE is a volunteer-led community arts agency, based in South-West London and run by people living with disability.

Table of Contents

This post is quite long, so I’ve split it into four parts:

  1. Part 1: Documentary and Disability, which is about the interview with Dr. Brylla
  2. Part 2: The Terry Fragments, which is about Dr. Brylla’s documentary
  3. Part 3: Giving it context, which is about me
  4. Part 4: Summary, which is about what I learned

Part 1: Documentary and Disability

Documentary and Disability (book) is a 2017 publication which Catalin Brylla co-authored with Helen Hughes. In the interview, Catalin Brylla, now Dr. Brylla, discussed the topics explored in their book.

He explained that documentary has traditionally been used to present disability in stigmatising ways:

  • disabled people are under represented
  • when they are represented, the focus is on their disability
  • there’s a perverse focus on their exotic otherness
  • this amplifies their disability, creating a circus-like freakshow

Dr. Brylla thinks there is potential to break this stigma. The first step is to understand how our brains work.

Psychology 101: Affirming identify and hierarchy through ‘otherness’

Our brains are constantly stereotyping and labelling other groups.

The purpose of this is to establish binary opposites. This helps us to affirm our own identities, by identifying the differences between us and them.

When disability is representated in media, art and literature, it is usually dominated by otherness, which is usually visual. This perpetuates a stereotype of what disability is, who it affects and how.

Defining Ableism

In society, there is an implicit bias to oppress minorities. This affirms the identity of the majority. It’s political.

In order to segregate a minority, you need to set some boundaries.

Ableism defines disability as:

  • something physically and visibly wrong with you
  • something physically significant – for example blindness, deafness, being confined to a wheelchair
  • something medically diagnosed and evidenced
  • something that defines who you are as a person.

If you fit this criteria, you are now part of the ‘disabled’ minority. Life just got harder for you.

Defining Disabilility

There are two ways that we further define disability: the medical model and the social model.

The medical model

In the medical model:

  • dis-ability is seen as the binary opposite of a-bility
  • disability is a deficiency, which needs to be treated or cured.

But, Dr. Brylla asks, is a disability negative, positive, or somewhere inbetween?

The social model

The other way to define disability is by using the social model. In this model:

  • some people don’t identify as being disabled, because they don’t see their physical disability as a dis-ability
  • some people don’t identify as being disabled, because they have an invisible disability – which society doesn’t recognise as a disability
  • we build disability into our environment, for example by building cities (and websites) which don’t accommodate people with disabilities
  • disability is a construct, which is used to oppress disabled people
  • since disability is just a construct, the real problems that come with disability are minimised and downplayed.

Defining Documentary

Documentary is often viewed as a chance to peek behind the curtain, to see what’s really going on.

What Documentary isn’t

People assume that:

  • documentary is a medium that represents real life
  • documentary is truthful and objective to some degree
  • documentary is the binary opposite to fiction.

What Documentary is

However the reality can be quite different:

  • documentary blurs boundaries
  • it looks at real life through a particular lens – not a transparent window
  • it’s a skewed perspective on real life
  • it uses creative narrative to convey human emotions, feelings, moods, and experiences of other people
  • it can create intimacy, bringing us closer to the subject, rather than emphasising the distance between us
  • it’s prone to being exploited
  • it can sentimentalise representations of disability, increasing stigma and creating Inspiration Porn for able audiences (see below)
  • it involves filmmakers making assumptions about their subject and audience, projecting their own ideas and stereotypes onto them.

Redefining documentary

Dr. Brylla knows all too well the need for filmmakers to question their own biases.

His first documentary about disability was well received. But on reflection he realised that it too had contributed to the stigmatisation of disabled people.

And so he created The Terry Fragments as part of his PhD. His goal was threefold:

  1. to redeem himself
  2. to change attitudes within an Ableist society
  3. and to provide a methodology to other documentary filmmakers, to help them better handle representations and stereotypes.

Defining Inspiration Porn versus Everydayness

Dr. Brylla explained that disability is often sentimentalised in Ableist documentary. Disability rights activist Stella Young calls this Inspiration Porn.

Inspiration Porn

Inspiration Porn describes a stereotypical narrative, where a person with a disability is portrayed as a super-crip due to some special talent. Its alter ego is the less upbeat narrative, where a person with a disability is simply seen as the sufferer of it.

As the term porn suggests, Inspiration Porn might be enjoyable to watch, but it is not a realistic picture of things. As such, it was an approach that Dr. Brylla was keen to avoid.

However, this created a conflict. It’s no coincidence that the main character in The Terry Fragments is a talented painter who is blind. In fact, Dr. Brylla met Terry through the Royal National Institute of Blind People. Terry didn’t just happen to be a blind person creating visual art, he was intentionally chosen for those attributes.

In choosing a blind painter, Dr. Brylla’s aim was:

  • to challenge Ablelist stereotypes
  • to inspire people with visual impairments to make visual art
  • to create empathy and move away from the medical model
  • and to educate film makers, decision makers and the public.

With the elements of Inspiration Porn already in place, Dr. Brylla had to use a very different approach to achieve his goals. He chose Everydayness.

Everydayness

Everydayness seeks to avoid stereotypes by showing everyday life from the subject’s point of view. It’s messy and fragmented, rather than coherent, and there’s no neat ending. This is seen as more realistic than traditional storytelling.

In Everydayness, the main character is a work in progress. Some scenes have nothing to do with disability. Others bring it to the foreground, to avoid normalising or ignoring it.

Attracting a mainstream audience

Marketing Everydayness to an audience that expected Inspiration Porn was always going to be difficult.

But it was necessary. Challenging any sort of stereotype requires addressing the audience who believes it. To break the stereotype, Dr. Brylla needed to preach his counter mainstream narrative to a mainstream audience – not to the converted.

Briefing his designer on a poster which he hoped would embody his vision of everyday life, he was dismayed to learn that this would not appeal to a mainstream audience. So he compromised, playing up disability stereotypes in the film’s marketing materials. This decision remains an ethical struggle for him, but a necessary evil. He hopes that his underhanded approach will lead to something better.

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Part 2: The Terry Fragments

The Absolute Basics of Photography meetup co-organised the screening event with Bournemouth University and Beyond Sightloss.

The Terry Fragments was advertised as:

an up-close documentary about Terry Hopwood-Jackson, a blind painter who has not let his sight loss dictate his life. Terry’s home is a shrine to his art, a treasure trove of fascinating paintings, drawings and notebooks, and filmed over five years, we are granted access to it and to Terry, with the film capturing the raw and everyday moments of his life, his routines and his infectious character: mischievous, funny, resilient and fiercely protective of his cigarette breaks.

Dr. Brylla was present at the screening. He suggested turning on the subtitles, if we needed help understanding Terry’s accent.

Foregrounding disability

The documentary was filmed entirely in Terry’s home, which he shared with his female partner. Paintings lined the walls of his relatively humble abode.

Sometimes we caught a glimpse of Terry’s eyes, one of which was sheathed in an almost opaque white film. But his disability was most noticeable when he was interacting with the objects around him:

  • using a braille typewriter to label his beloved CD collection
  • using pieces of string and plasticine to scaffold his paintings
  • keeping his favourite paintbrush behind his ear
  • pouring a generous dram of whiskey, then upending a can of Schweppes in to the glass – which fit its contents perfectly
  • asking his partner to describe a painting in a book (she focussed on the visual effect, of a river running towards the viewer, it’s dimensions and orientation – he confirmed his understanding by describing shapes)
  • asking a fellow member of the writers’ club to read his typed A4 contribution.

There was a reference to a time when Terry could see, the faint pink hue of strawberry ice-cream. But that was it.

Backgrounding disability

Conversely, his disability faded into the background when he was enjoying his art or the company of others:

  • describing his painting technique
  • using sighted idioms – “Look at the state of it”
  • playing Christmas carols on his guitar
  • describing his love of music, and his relief that he was still able to hear
  • mentally visualising his answers to the crossword puzzle
  • flexing his wicked sense of humour.

It’s a delicate balance, said Dr. Brylla, neither bringing disability into the foreground nor pushing it into the background. Painting is the background narrative here.

The biggest surprise for me was how Terry viewed himself. When asked why he compared himself to a tree, he replied that:

They’re full of spirit, they’re full of life. Even though sometimes they’re full of death. Strength, power, beauty, colour, things like that.

This is a stark contrast to the shaggy, grey-haired, trackpant wearing man who is usually seated on the floor. “Do it properly or not at all” he says. It’s a strong reminder that we should never judge a book by its cover.

Challenging mainstream stereotypes

After the screening, Dr. Brylla invited the audience to tell him what they did or didn’t like about The Terry Fragments.

It was a clever way to extract lingering stereotypes. I appreciated the ability to pose questions to the filmmaker directly and fell for his ruse.

I said that I liked Terry’s light hearted humour, which peppered his exchanges with his partner and the filmmaker. I’d gained some perspective on how predictability in his surroundings and timetable helped him live his life. I also appreciated Dr. Brylla’s attempt to challenge his audience by breaking with convention.

However, I thought that there was too much emphasis on the physical Terry and less on his thoughts, perspectives and artistic communication. It seemed that the documentary was actively focussing on the uninteresting things that he did. I felt that that devalued Terry as a person. I’m not sure that I wanted to see a super-crip, I just thought that he had a lot of talents. I think I would have felt the same if Terry wasn’t blind.

The others participants stated similar criticisms. They’d hoped to see more of Terry’s artistic process, as the film was about a blind painter after all.

Dr. Brylla responded by reiterating that he’d wanted to focus on the everyday life of his subject, rather than defaulting to the inspiration porn that audiences were used to seeing.

I felt that there were two sides to The Terry Fragments – a portrait of a creative blind man and a very experimental narrative.

Stigmas affect how we see the world

But then, I asked, why did the movie focus so much on the negative activities in Terry’s everyday life?

I was mostly referring to Terry’s regular Fag Breaks. Here we saw Terry sitting on the floor, smoking a cigarette and making small talk with his partner. On another occasion, he made himself a whiskey mixer, a process which he obviously had down to a fine art.

Dr. Brylla quickly replied that my criticism assumed that smoking and drinking were negative activities.

Ouch!

But his response had opened a window in my mind. I could immediately see a parallel between my opinion, of those who chose to smoke or drink, and society’s opinion, of those that had a disability.

I realised that my opinions were based on what society, religion and culture had taught me. They weren’t necessarily based on personal experience, or the result of a logical thought process. Maybe I’d internalised my learnings without doing due diligence on them, never independently reviewed that belief. Yet, I held it near and dear, as if it was beyond reproach.

And yet, I drank. But I didn’t identify myself as a drinker. I drinker was someone else, a lesser person, with a lack of self control. Even though I drank too much sometimes, there was still a basic difference between me and them. But was there, really?

Faced with Dr. Brylla’s counter opinion and his knowledgeable insight, I realised that my way of seeing things wasn’t the only way. And that maybe my personal opinions weren’t even my own. Maybe my brain was playing tricks on me, affirming my identify by highlighting differences rather than similarities.

This was a powerful moment for me. It mirrored my learnings about disability stereotypes in Web Accessibility. It made me really understand what a stereotype was. And, I realised how often I used binary opposites to categorise other people, without really knowing anything about them.

Defining Stigma

I find that giving things the correct names helps my thought process and communication with others.

So I went looking for a good definition of this new word, Stigma.

BMC Medicine use Bruce Link & Jo Phelan’s definition of Stigma. This is similar to Dr. Brylla’s:

Stigma is a powerful social process that is characterized by labeling, stereotyping, and separation, leading to status loss and discrimination, all occurring in the context of power

A more accessible version is provided by The Woodlands Recovery & Wellness clinic. They use examples to explain the three concepts which factor into public stigmas around mental health:

Stereotypes are something most of us are familiar with. It’s a commonly held, negative belief about a group. In the instance of mental health it could be the idea that people with mental illnesses are dangerous, or unreliable, or that the illness is due to weak character.

Prejudice comes into play when people adopt those common beliefs as their own. This perpetuates the stereotypes and leads to individual emotional reactions of fear or disapproval when faced with the topic of someone’s mental health.

Discrimination is the action that may lead from prejudice. This could be denying someone with mental illness housing because the landlord assumes they will not be able to pay rent.

Furthermore, the Merriam-Webster dictionary says that prejudice is:

  1. preconceived judgment or opinion
  2. an adverse opinion or leaning formed without just grounds or before sufficient knowledge

Prejudice: pre-judice. Hmmm.

Recognising my internalised stigmas

Reflecting on these definitions, I can see that:

  • I have adopted negative stereotypes around drinking and smoking
  • I morally prejudge those that regularly drink or smoke.

Several of the attendees had commented that they didn’t see enough of Terry’s artistic process. And yet, with his day seemingly consisting of smoking, small-talk and art, it seems likely that the smoking was as much a part of him as his art was.

Perhaps smoking for relaxation was an integral part of his artistic creative process. With the narrative being so intentionally fragmented, it was hard to know. In my prejudiced mind, those means would have justified such creative ends, but who am I to judge?

I also found it interesting, that a film that aimed to challenge the stigmatisation of people with disabilities, could run afoul of one viewer’s stigmatisation of people who used recreational drugs. The documentary hardly touched on Terry’s physical blindness, but it did devote a lot of screen time to his smoking.

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Part 3: Giving it context

This was all very interesting from an intellectual perspective. But I don’t identify as being disabled, so why did I care?

Well, I’m a web developer with a passion for Web Accessibility. And as such I’ve been struggling with some really big questions for a really long time:

  • why is it that inclusion and accessibility are such foreign concepts to people?
  • why do otherwise good people push back when I try to incorporate accessibility into my work?
  • how can I challenge and convince these people to change their behaviour?
  • how can I personally feel more empathy towards people with disabilities?

To be honest, attending this meetup was a bit of an experiment. I didn’t have any great expectations of actually answering any of these questions. I just hoped for a slightly different perspective.

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Part 4: Summary

If you made it this far, well done! Either way, this is the part where I tie it all together.

As I see it, there are 3 main things going on here – and none of them are pretty:

  1. Politics – we construct minorities in order to gain the upper hand
  2. Psychology – we view the world through a very dirty lens
  3. Discrimination – we actively build disability into our world, in order to maintain the status quo

Dr. Brylla has my eternal gratitude for allowing me to peer behind the curtain. His insights really blew the lid off what was going on. It’s heavy stuff, but I feel much more empowered to call it out for what it is, now that I know its names.

Once upon a time there was no word to describe sexism, or racism – or ableism. Labelling our stigmas helps us to understand our base human nature – to understand it, but also to challenge it, debate it and ultimately to change it.

We need to recognise the dirty tactics that we use to oppress one another, and stop doing that stuff. We need to stop discriminating. Period. We need to stop building in disability. It’s mind blowing to me that we would make such a choice, that it would even be a choice that we allowed ourselves to make.

On a personal level, I learned some pretty uncomfortable truths about myself. But on the upside I managed to answered all four of my big questions!

And I learned to be vigilant about applying stereotypes or parroting common ‘truths’. Even if those were actually true.


Further reading

If you’re interested in learning more about Dr. Brylla’s research, check out the following links:

Note: The Terry Fragments was an exclusive screening, but contact Dr. Brylla if you’d like to view it. I’m sure he’s keen to spread his message as far and wide as possible.

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