I am delighted to bring you an interview I conducted with a group of amazing individuals who volunteered to take part in GeekDis. They agreed to talk about what disability representation in pop culture means to them to give you all a wider perspective of the topic. As I’ve said before, when I came up with the idea for GeekDis I realised it was too big for me alone to tackle, and I when I put out the call these are some of the members of the disabled community that answered.
Before we get to the interview, I’d like to take a moment to introduce you to them!
Alésia, a disabled blogger and youtuber.
Anna Reel, a blogger, YouTuber, and life coach.
Brent Lyles, a mental health, trauma-focused, and addictions therapist based in Florida.
Gem, a disabled cosplayer.
Heather, a freelance content creator, blogger and writer, and the host and founder of GeekDis.
Naoise Gale, an autistic poet from the UK.
1. Thank you for joining me for GeekDis! Could you please tell us a little about yourself?
Alésia: I’ve had health problems all my life, but was still very active, so I never gave it much thought. Once it got to the point where I couldn’t both work and manage going to the store/preparing meals, I realized something was definitely wrong. Over several years and numerous specialist visits, I was diagnosed with eosinophilic esophagitis, fructose malabsorption, histamine intolerance, and mast cell activation syndrome. There might be some others you could tack on there, but at some point I’d had my fill of medical exams and turned my focus to creating content to share my story. The experiences I share and the reactions I’ve gotten to sharing these anecdotes tell me just how lacking authentic representation is. I hope I can do more to better that in the future, because I firmly believe it plays a major role in how we’re treated in society.
Anna: Hi! I’m Anna Reel. I’m a blogger, YouTuber, and coach who helps people learn more about who they are and how to apply it for personal growth and greater success with their goals. We are not cookie cutter people, so I’m passionate about helping people find what uniquely works for them.
I’ve had depression and anxiety for most of my life, but finally sought help for it in 2018. I take medication now that helps keep me out of the darkest pit, but it’s still a persistent struggle in my life.
Brent: I am Brent Lyles, a neurodivergent individual who lives with ADHD and learning disabilities. I also live with MDD, BPD, and PTSD. I am mental health, trauma-focused, and addictions therapist in the state of Florida. I am also a husband, a father, and a full-time geek.
Gem: My name is Gem (she/they), and I’m 23. I have eight (yes, eight) different diagnoses/conditions. Most of these I’ve had my entire life, but they weren’t diagnosed until I was an adult. I have used a wheelchair for the past three years or so.
Heather: Hi, I’m Heather, I’m 35, and I’m the host and founder of GeekDis. I have seven chronic health conditions; Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), hypermobile Ehlers-Danlos syndromes (hEDS), chronic migraines, asthma, depression and anxiety, irritable bowel syndrome (IBS) and rhinitis. I started my blog ten years ago this month, incidentally, as a way to chronicle life as a disabled student when I went back to university to study my second degree. After developing ME/CFS my focus changed and my blog became its current incarnation; a pop culture and disability awareness hybrid. I talk regularly about my disabilities on my blog and social media, as well as other health concerns such as PTSD from an emotionally abusive relationship and suffering from compulsive skin picking (dermatillomania). I do so in the hope that I can be the light in the darkness for someone else.
Naoise: Hi! My name is Naoise Gale and I’m an autistic poet from the UK. I write about neurodivergence, mental health and identity, with a particular focus on addiction and eating disorders. As well as autism, I am diagnosed with social anxiety and cyclothymia, a mild form of bipolarity. I struggled with an eating disorder for five years but am now thriving in recovery. I am always looking for characters and voices I can relate to, so I am familiar with far too many representations of mental health and neurodivergence in pop culture!
2. What does disability representation mean to you?
Alésia: Seeing authentic moments represented on screen. I want to see the moments we can all relate to, but those are moments most people who aren’t in our shoes haven’t witnessed, which is why they can’t portray them. Instead they do the best they can to imagine what it’s like, but what we imagine rarely matches reality, if we don’t have experience to draw upon. So what I get is excitement that I’m seeing something I can relate to and then this weird feeling that I still can’t quite connect with it. I want more moments that leave me exclaiming, “Yes, exactly – this is it!” Those moments bring viewers into our world, which can help people understand us better. If people understand what we’re going through, they can respond supportively instead of making our lives even more difficult.
Anna: To me it means the difference between feeling alone in your struggle and having it more normalized and validated. There are many ways we can relate to a person or character, but for them to have the same disability as you brings a whole other level of relatability and connection. It can often even feel like permission to be yourself or feel the way you feel. In fiction it can help you to feel seen or process your own experiences. In real life media, it can be incredibly empowering and inspiring.
Brent: Disability representation has the space to have a voice to be heard, be seen, be validated, be believed, and be understood by all walks of life. It allows a conversation with the term disability, where everybody can be included in learning more about what it is like to live with a disability.
Gem: To me, disability representation should be characters who are disabled, but who have their own stories. Disabled people are people, and we have our own thoughts, feelings, problems, hopes, and so on. Although disability affects these to varying extents, they deserve to be shown and told like any able bodied character’s would be.
Heather: Very simply, it means being able to see myself in the world around me. Whether it is fictional worlds I enjoy, the media, fashion, adverts etc. I want to be able to see people with multiple disabilities, with chronic and invisible illnesses.
A more complex answer for me is that representation is about feeling like I belong. For example, I’ve been sharing this event on my personal Facebook and hardly anyone has responded. But as soon as I changed my profile photo, I got comments of “beautiful” etc. I exist as a pretty young woman, but as soon as I say the ‘D’ word, people switch off. So for me, disability representation means seeing the whole of me for who I am.
Naoise: Currently, it is often synonymous with misrepresentation. It should be about more than the presence of a disabled character in a TV show. Real disability representation would be seeing someone like me on screen, who was more than a walking diagnosis, whose disability was an integral part of them but was not their entire character. Disability representation shouldn’t shy away from the issues facing us but also shouldn’t reduce disabled characters to plot devices or victims.
3. Do you feel represented in pop culture?
Alésia: Not at all. I sometimes see something similar that I can somewhat relate to, but I would be shocked if I saw my specific illness represented. It doesn’t have to be the exact same diagnosis to resonate, but I do wish I saw more scenes that resonated in any way.
Anna: I’m fortunate to see my disability represented more than many others, but there’s still so much work to be done. I’ve rarely come across characters who have persistent depression and/or anxiety. Usually it’s only situational; they eventually overcome it. Since my depression comes from a chemical imbalance, it will likely be with me my whole life. There are also so many ways that depression can show up, so it’s especially hard to find characters who experience it the way I experience it. With anxiety, I’ve seen more representation of anxiety as a symptom of PTSD, but not many with my kind of generalized anxiety.
Brent: I think we are slowly making progress in films, TV, and other genres like books, comics, animation, and video games. I do believe we still need to make a change in a lot of the genres of entertainment.
Gem: No, not really.
Heather: No, I don’t. Not as someone with multiple disabilities, as someone with chronic health conditions, or as someone with invisible health conditions (health conditions that do not have a visible representation). I feel even less represented as a disabled bisexual woman. If I think specifically of each of my health conditions, only a few of them have actual representation in pop culture. One of them is usually for humour (IBS) and the other is used in horror, crime or drama as a plot device (mental health) and hardly ever accurately represented.
Naoise: Unfortunately, no. The main reason is the unwritten ‘one problem per character’ rule that seems to pervade all of pop culture. I am someone who over the years has amassed a myriad of diagnoses, and I am someone that struggles with multiple disabilities and mental health conditions. Many of us in the mental health community have more than one diagnosis, yet pop culture deems this too complicated, or too ‘unrealistic’.
Disability representation also shows a shocking lack of diversity. Autistic characters are almost always white, cishet young men, who display the more well-known symptoms of ASD, such as a supposed lack of empathy and the absence of a social filter. That is not me. Eating disorder representation discusses anorexia almost exclusively, and focuses on thin, white, middle-class teenage girls – again, that is not me.
4. How does inaccurate disability representation affect you?
Alésia: I strongly believe it’s responsible for how horribly I’ve been treated since becoming disabled. I’ve been noticing how disability always seems to be paired with the villain and then the heroes are excused for using the disability as an Achilles heel. Or the hero has a disability that’s taken away or used as punishment. Now that I’m aware of this, I can better understand why people react to disability the way they do. I think this runs deeper than we realize and fixing it will ripple into other areas, helping bring about other changes that are desperately needed. Just because it’s fictional entertainment doesn’t mean we should underestimate the effect it has on how we view and treat people.
Anna: At best it can be frustrating or simply feel like a disconnect, but at its worst it can cause feelings of shame or trigger my depression.
It can also contribute to stigma and misunderstandings about a disability.
Brent: I think it impacts me to see myself in continued tropes and stereotypes, which allows non-disabled individuals to continue the misunderstanding and misinformation of the disability. It narrows the conversation and doesn’t allow for disabled voices to be heard and understood.
Gem: I think a lot of my self-doubt comes from inaccurate representation in pop culture. I have OCD, but I’m not super clean or afraid of germs. I am autistic, but I am not a boy, I am able to talk about various things…I am, essentially, not one-dimensional. I also can walk and stand, so, when all the wheelchair representation in shows or movies is about people who have no lower-body mobility, it’s very easy to feel like a faker.
Actually, that’s something I could (and may) write a proper post about, but, basically, a lot of disabled characters are in some ways the bad guy, either due to their disability, or, worse, they are faking their disability for some reason, only to triumphantly reveal the trick as the horrified hero looks on. This is very, very harmful.
Heather: It affected by ability to recognise myself as disabled. It wasn’t until I was in my mid-twenties that I began to realise that my chronic health condition (hEDS) meant I was disabled. This meant that I had struggled through my first university degree without any additional support, and quite possibly lost marks on my final dissertation. Until I started to understand my identity as a disabled person, I felt like a constant failure and accepted criticism from other people who told me just to “get over it” or “grin and bear it”. I’d let them push me to my limits over and over. Recognising I was disabled gave me power back over my own welfare.
As a teen with a physical disability that no one could see, I was often bombarded with ableist comments and stares on public transport when I didn’t give up my seat for the elderly. The idea that the young are always fit and healthy was extremely harmful to me, as I’m sure it has been to many disabled teens. It didn’t get better as I got older, and I still get stares whenever I sit in a disabled seat or use an accessible bathroom. This is because people equate what a disabled person looks like with a certain image, and I don’t fit into it. It is one that has spread to the government in the UK, and at our assessment for a blue badge we were told by the assessor that because we could both walk we could be denied. The government had given them instructions only to accept applications from people unable to walk or who were missing a limb. That is how dangerous inaccurate disability representation can become.
Naoise: Most people have very little knowledge about disability. Therefore, what they see on television, or in film, or in a novel, quickly becomes their only sense of what it means to have that disability. The current portrayal of eating disorders reinforces the idea that all sufferers are underweight which is untrue and unhelpful. Although I was underweight at points of my eating disorder, most of the time I was not, and when I eventually sought treatment with eating disorder services, I was not underweight. Due to the stereotypes, I found it even harder to tell people that I was struggling and receiving help, as I didn’t fit their expectations of an eating disorder patient. Many eating disorder representations still pander to the incorrect idea that it is solely about body-image, or is a form of self-centredness, or attention-seeking, or vanity. As a result, people make derogatory comments like ‘just eat’, and some anorexics have been verbally abused in public or on the internet.
When it comes to autism representation, one of the main problems is the infantilisation of autistic people. People tend to group us into two categories – savants or burdens – because that is how we have been historically represented in the media. The TV show Atypical also furthered unhelpful narratives, by showing in one episode the autistic main character being given purposely difficult nigh impossible tasks by a teacher, with no accommodations. This was framed as a learning experience, with the main character’s obvious distress being portrayed as justified by the outcome. Refusing to give us accommodations in education does not help us, it harms us. I worry that more teachers will emulate this, making education less accessible for autistic students.
5. What do you think of the language used by the media when discussing the disabled community?
Alésia: Degrading, patronizing. They tend to focus on the negative aspects while idolizing medical professionals. Or they show the worst cases, so people never see what those in between stages look like. There’s no concept of this grey area where people can’t tell you’re disabled. There’s no talk of how much trauma we endure on top of being disabled.
Anna: I want to believe most people are truly trying but simply lacking understanding. It’s hard to understand that which we have not personally experienced. And sadly there’s a huge lack for the skill of putting yourself in another’s shoes to at least have a bit of a better guess at how it may be received by them. If something is not personally experienced, I think one should (if at all possible) run it by someone (or, better yet, multiple people) with that particular disability. It can be confusing when even different people with the same disability may have different feelings about certain language, but usually you can at least find the most accepted terms and know which ones to avoid.
Brent: I think we are still figuring out the language to what is offensive and empowerment with certain words and wording of how we show up in the world as disabled individuals.
Gem: I think the media, though well-meaning, either dances around ‘disabled’ as if it were a horrific slur, and tends to portray disabled people as sort of inspiring objects, who overcame odds to do something…whether or not their particular disability impeded them.
Heather: If I’m being completely honest, I wish there was a ban on the word “inspiration”. I know how hard it is to avoid using it; I’ve been doing it for the last month while working on interviews for GeekDis! But I still managed to do it! I was also horrified last month when I read a book for a review to see a medical doctor using the “r word” to describe a patient with Downs Syndrome. I keep seeing news articles about celebrities being held accountable for using racist and homophobic slurs (notably Matt Damon recently) but no one seems to care when it’s an ableist one. It just seems a bit unfair when the point is the same.
Naoise: I’m not particularly fussy about what language is used towards me, although I usually refer to myself as autistic, as my autism cannot be separated from who I am. Most autistic people prefer identity first language autistic rather than has autism, on the spectrum etc), so it annoys me when TV shows insist on using person first language, as I feel it is for the sole benefit of allistic people who feel uncomfortable speaking frankly about neurodivergence.
6. Do you think that better disability representation in pop culture would lead to less ignorance in society about disabilities?
Alésia: Absolutely! It’s a great way to explain things people are afraid to ask and it’s even better when you can walk them through it and show them things as they happen. Feeling like you’re there reaches people on a deeper level than a retelling and media has the power to do that by reenacting things.
Anna: I strongly believe so! That’s how we as humans learn. As children we watch and mimic others. Pop culture, especially in the sharing of stories (whether they are real life stories or fictional through movies, tv, books, comics, etc), is a powerful tool for getting a glimpse into another’s life.
Brent: Yes. I believe it can change the conversation and representation that allows for a safe space to be seen and heard. I know for myself, it would validate me as an individual who lives with a disability and not see it as a character deflect or imperfect flaw that I needed to correct to fit into “standard social norms.”
Gem: I do. A lot of people, especially children, learn a lot about the world from what media they consume. If they only see disabled people as one-dimensional, for example, it’s easy to forget about us, whether intentionally or not.
Heather: Yes, definitely because every time I see a video of someone harassing a disabled person for parking in an accessible parking space they all same the exact same thing; “you don’t look disabled”. We don’t get taught in school about disability, so where do people “learn” what “disability looks like”? If it’s not from education textbooks, then that only leaves one answer; pop culture. Whether it’s films, TV, the media corporations reporting about disabled people or on the internet, people are clearly getting ideas of what disability looks like from somewhere. If we can change what they’re seeing/hearing then maybe we can stop some ignorance.
Naoise: Definitely, in the same way that poor disability representation creates more stigma. Pop culture is powerful and can challenge long-held societal beliefs.
7. What are some of your favourite disability representations?
Anna: I recently shared in Allison Alexander’s collaborative post about how I really connected with and appreciated the character named Rome in the tv show, A Million Little Things, as he wrestles with his depression despite having an “incredible life.”
I follow a lot of people in the Mental Health space on Twitter, and I really appreciate the realness of some Mental Health Advocates sharing their own stories about their mental illness. There are so many I could share about, but I’ll leave you with a few…
Two Twitch streamers, Marie of Mxiety (who has anxiety, depression, and adhd) and Mindset by Dave (who has type 2 bipolar disorder) have created safe spaces to talk about mental health and advocate for others. Seeing them be honest about where they’re at and pivot their plans when necessary to take care of themselves has helped me to feel less guilty whenever I need to change up my own plans because of my depression.
Brent: I enjoyed the Young Adult Graphic Novel, The Oracle Code, which did a fantastic portrayal of Barbara Gordon and being disabled, without inspiration porn and a tragedy of living with a disability. The young adult graphic novel also manages to tackle ableism and the world’s desire to cure people in a graceful and impactful way.
Gem: I tend to enjoy content that is actually made by disabled people, like Martina from King Kogi, or Jessica Kellgren-Fozard. As for fictional examples…I can’t think of any at the moment. American Horror Story cast an actress with Down’s Syndrome, but there were some pretty upsetting moments, especially in season 1, or her disability is ignored. Oh, actually, The Rest of Us Just Live Here by Patrick Ness has several disabled characters, and they’re treated like everyone else. Their issues are natural parts of the story (ie OCD symptoms worsening with stress), but they still do amazing things and go on adventures.
Heather: For me as someone with mental health conditions and PTSD, Sarah J Maas’ books are fantastic examples of representations of anxiety, depression and PTSD, in particular her A Court of Thorns and Roses series. But it is something that she has included in all her books to date, in one way or another. I also recommend Legendborn by Traci Deonn for its portrayal of Persistent Complex Bereavement Disorder and bringing that condition to light.
In TV, one of the best representations I have seen is in Magnum, P.I. reboot. The show has been fantastic for its representation of war veterans from the start, and one of the recurring characters is a disabled veteran called Shammy played by disabled actor Christopher Thornton. The show has handled multiple topics of disability through Shammy’s storyline, including a conversation with a main cast member about all the things people say to him as a wheelchair user. It was so on point that I am pretty sure that it was written with Thorton’s input. Shammy’s disability is never used as a plot, and while it comes up as a discussion point from time to time, it’s as it would be in real life.
The other TV representation is Clarissa Mullery played by disabled advocate Liz Carr in the British crime drama Silent Witness. She recently left the role after playing Clarissa, a forensic scientist, for eight years (she joined in season 16). In the role, Carr played some very dark and serious disabled storylines as a part of Clarissa’s storyline, but like Shammy they were never the full focus of her character. As a disabled person, I found some of Clarissa’s storylines very difficult to watch, but appreciated the show for going there because no one else has and not with a disabled actor actively involved in the creative process.
Naoise: Channel 4’s My Mad Fat Diary merits a mention for the simple reason that it features a main character with an eating disorder that isn’t anorexia! Binge eating disorder is the most common eating disorder, yet it usually receives no representation, so finally seeing it on screen was a big moment for me. Saying that, my absolute favourite eating disorder representation comes from the BBC 3 show Overshadowed, which represents anorexia in a way that shows its bullying, torturous nature. Stick with it past episode one – which tries too hard to be hip and peddles some of the same tired anorexia tropes – and you will be rewarded with a touching and honest portrayal. The personification of anorexia is a genius move, and the show addresses some of the symptoms/ effects of anorexia that are rarely talked about, such as conflict it creates with friends, and the way it makes you desperate to be near food, even if you can’t eat it. I have never watched the show without crying, and I have watched it far too many times.
8. What are some of the worst disability representations you know of?
Anna: I can’t think of specific examples, but I know I’ve come across fictional characters with depression who are considered “lazy,” “emotional,” or “tiring” by the other characters. It would be one thing if it was for the purpose of those characters then learning from it, but they don’t. The writers just leave it at that, only perpetuating the stigma and causing harm to people like me who already have to fight these kinds of lies in their minds.
Brent: I think of the victim or pity tropes for disabled characters. A person is seen as pitiful, the victim, or helpless just because the disabled character lives with a disability.
An example was from the classic Disney film, The Hunchback of Notre Dame; Quasimodo is portrayed as the tragic, ugly, and unattractive main character who needs to be saved by the rest of the cast. I use to love this film as a child, then once I grew up and rewatch it, I saw the stigmatized and tropes that reinforced disabled people as victims and sufferers for living with a disability.
Gem: The movie Music, every disabled character in Glee except possibly Becky, the bad guy in Detective Pikachu (that movie made me cry out of anger), Monaca from Danganronpa: Ultra-Despair Girls, Everything, Everything, The Fault in Our Stars, any other story where the sick one is saved by love and then is either healed or dies.
Heather: Me Before You has to be the worst I’ve seen (my review will be coming shortly). For those who have not seen it, I won’t spoil the end of the film only on principle (I don’t spoil anything for anyone) but even the premise of it is bad enough. Essentially, it romanticises disability. It is disability given a romantic soundtrack and made pretty. It’s also not even about the disabled character; it’s all about their carer, Louisa, (which seems to be a running theme with a LOT of films that feature a disabled character) and how her life changes when she meets Will.
What’s wrong with romanticising disability, you might ask because after all aren’t we asking for more accurate disability representation? The problem is that this type of film isn’t accurate; it’s fetishising disability and is filled with tropes. Instead of a film/book that positively represents the concept of a disabled character falling in love, you have a film that isn’t even focused on the disabled character or their life. Will exists primarily as a plot device, and therefore, so does his disability.
Naoise: To the Bone is in my opinion the worst representation of eating disorders in years. The idea that love alone can heal an eating disorder is so incredibly disrespectful to the families of those who are suffering and those who have died. I also hated the fact that the main character miraculously recovered after a near death experience, because in the vast majority of cases, recovery does not work that way – it is not one decision, but a series of decisions.
I’ve already discussed some of the reasons Atypical is a bad representation of autism, but one of the things that irritated me most in the show was the way it portrayed the main character, who studies art and creates gorgeous artwork, as technically advanced but uncreative. This annoyed me a lot, as I have had similar experiences with people assuming I like poetry because it is a structured, controlled form of writing. This is not true (I mostly write free-verse, confessional style poetry) and this is a way of erasing my creativity and marking my art as less authentic or heartfelt.
9. What would you like to see more of in pop culture in the way of disability representation?
Alésia: I want to see more nuance. I want to see the tough topics covered in detail. I want to see bad doctors and good patients. I want to see disabled leads where the disability isn’t used as a convenient plot point, but is always present. I want to see disabilities that are shocking to look at, so we can get more comfortable with them with a screen between us and know how to act when we meet people with similar disabilities in person.
Anna: I’d love to see disabilities of all kinds as part of a character’s story but not the main focus or plot point. So we can see the daily struggles as they fight whatever metaphorical (or literal) dragons any other protagonist would face.
Brent: I would like to see representation of actors who are disabled play characters in films and TV with accuracy. I think there needs to be disability consultants for books, scripts, and video games that help guide writers, artists, and storytellers in the road of disabled representation.
Gem: Stories featuring disabled characters that aren’t about their disability. I’m tired of reading about disabled people being sad for being disabled. Yep, it’s hard sometimes. I read to find new stories and distractions. I want wheelchair-using magicians, depressed kids who still save the world. Anything you can imagine.
Heather: I would love to see everyday stories with things we have to deal with all the time. Planning to go out? Well, that’s going to take 20 mins to plan on its own. Got to make sure you plan for every situation, especially with chronic illnesses, that’s three or four emergency medications to ensure you have in your bag “just in case”. In particular for me having characters with more than one health condition is something I would really love to see. It constantly feels as though a box is ticked for diversity in pop culture and even more so with disability; “ok character has X, good we’re done for that one!”. Real life is not like that.
There’s also the issue of intersectionality. The disabled community is the only community that intersects with all other communities. This means that many disabled people are not just dealing with issues related to their disability, such as prejudice or poverty, just to name a few. You never see a poor disabled person in pop culture for more than a few minutes in a medical or crime drama because it’s too depressing for the audience. They’re always minor characters, seen briefly and used as plot devices to help bolster the storyline for the nondisabled characters. For BIPOC and LGBTQA+ disabled characters, the disability representation is even less. Even adult women are less represented in pop culture, with either adult men or teenage girls being the popular choices for directors and writers. These discrepancies are something that need to go.
Naoise: BIPOC disabled characters! LGBTQ+ disabled characters! Disabled characters in happy relationships, disabled characters who are treated as nuanced adults, capable of a full spectrum of emotions and experiences.
10. Finally, what advice do you have for nondisabled people who would like to learn more about supporting disability representation?
Alésia: GeekDis has inspired me to start analysing disability representation in TV shows and talking about what’s wrong with them on youtube (as soon as I’m able), so you should check out my channel – Project Uninvisible!
Anna: First: LISTEN. Listen to what disabled people are actually saying instead of assuming what they would want or approve of as good representation in media. Help lift up their voices by sharing their work (it’s a free way to support!) or purchasing from disabled creators.
Second: When in doubt, ASK. Actually you probably should still ask even if you think you know because sometimes you may be surprised. Again, it can be difficult to understand that which we have not personally lived with daily for ourselves. Others may have a different opinion than me so be mindful and kind with whoever you’re close enough to in your life you might ask, but I personally would gladly answer a friend’s genuine questions to try to understand me better and see how they can better help me as a friend and become a more aware ally for others!
Brent: I will say have a conversation with a disabled individual. Ask permission and make sure it is safe for the disabled individual who feels comfortable in the conversation. There are a lot of us who don’t mind at all helping and having an interactive conversation with abled-bodied, other disabled individuals and all walks of my life who don’t live our disability. Curiosity with empathy is key.
Gem: Try looking for media created by disabled people. We know our conditions, and portray them accurately. Be wary of anyone claiming to speak for or cure a community if they are not a part of it (cough Sia cough). We don’t need able-bodied heroes. We need allies, listeners who want to hear our stories.
Naoise: You are free to enjoy what you enjoy. I quite enjoyed Atypical, despite it not being a good representation of autism. The problem starts when you defend representations that disabled people have stated are harmful and when you erase disabled voices. So be prepared to accept that representations you have previously enjoyed and considered realistic are problematic. Remember that disability is common, but representation is rare. Listen to disabled people about disability. We know what we’re talking about.
Heather: Start by throwing everything you think you know about disabilities out the window, because I can guarantee at least some of it you’ve picked up from pop culture, and I hope by this point in this interview you understand us when we say most disability representations are incorrect. You might think, “it’s ok, I’ve researched!” but most books about disabilities fall into one major category; they’re written about us, not by us. This is a huge issue and one that is slowly beginning to change. If you were writing an academic paper, this wouldn’t be a problem, but we’re not talking about people from history that you’ll never ever meet. We’re talking about living breathing humans who you will meet at least once in your life and probably have met without realising it; we’re 15% of the population after all. So look out for books written by disabled people. I highly recommend Demystifying Disability by Emily Ladau and The Pretty One by Keah Brown.
As my fellow interview participants have said; talk and listen to disabled people. If you don’t know any personally or don’t feel comfortable talking to them, then look for people on social media and online. There is a huge movement of disability advocates on all platforms. We’re talking, blogging, streaming, creating (buy products from us!) – everything to get people’s attention, all you need to do is look 🙂 If someone you know is a disabled advocate then read/watch what they’re saying, share it. Support starts with you.
More about our Volunteers
A huge thank you to our volunteers for taking part in this interview!
Please do take the time to check out their websites and social media accounts to learn more about them, their work and their projects. If you appreciated their contribution to this project, please do drop by their Patreon’s and Ko-Fi accounts (etcetera) and show them some support. Everyone in this interview struggles daily in a world filled with accessibility barriers, and each of us have had to carve our own way. I was asked recently if compensation was being offered for a GeekDis project and I want to reiterate what I told that person; not a single one of us are earning anything from this, so if you appreciated the time given by our volunteers in this interview please give something back <3
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Over to you
Thank you for reading our group interview for GeekDis! I hope we have given you a look at how important the topic of disability representation is and how wide-reaching the implications of bad representation can be. This interview covers a variety of topics, and each of us that took part have different disabilities. We’re just a brief snapshot of the disability community, so please be aware that we have only covered some of the issues surrounding disability representation in pop culture in this interview.
Don’t forget to check out the rest of the GeekDis content being created! Head over to the GeekDis Information Hub to view everything. Likewise, there are some important discussions happening on social media, so check out the hashtag #GeekDis on Instagram and Twitter.
If you have any thoughts about this interview, we would love to hear them!
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