Why Does Our Culture React So Negatively to Disability Activism?

Why does our culture react so negatively to disability activism?

Disclaimer: This article is written from my perspective as a young, disabled adult that lives in New Zealand. Whenever I mention “culture” in this article I am referring to western culture, specifically western culture as adapted to by New Zealand. I haven’t done much traveling so I can’t say if other countries with similar cultures react the same way, however, I have seen accounts of similar experiences from activists worldwide. 

This is also my experience as someone with an invisible disability. I’m sure that everyone’s experience is different, and some of the readers of this article may not relate to what I have written no matter where they live. This is awesome because we all have our own unique story. I make a lot of generalisations in this article, and those generalisations certainly don’t apply to everyone. I am just expressing my experience in the best way I can.

I have experienced widespread chronic pain since the age of seven. I went from being a relatively “normal” (if accident-prone) girl to experiencing severe pain every day of my life. Slowly my condition deteriorated until I required the use of walking aids for a large chunk of my life (and I still do). I went through years of bullying and what I can only consider being “medical abuse” (mistreatment from medical professionals; such as being called a faker and being forced to take medication that caused severe side effects), which almost broke me.

As I grew into my voice I decided that I would be an advocate; not only for myself but for everyone with similar experiences to mine. I started with the basics: social media. Whenever I noticed an injustice towards people with disabilities, whether it be against me directly or against someone else, I would speak out. I then started writing articles about my experiences, which I love. And now, I’m a part of a panel run by the local Ministry of Education aimed at making education more inclusive to disabled students. This is just the beginning of my advocacy journey, and I can’t wait to see where it leads me in the future.

My advocacy journey on social media

Throughout my advocacy efforts, I have noticed that many people on social media bristle when advocates like me bring up serious issues addressing the disabled community. I have been dismissed, insulted, and verbally abused online by people who will do anything to defend injustices against vulnerable people. I decided recently that I wanted to analyse their viewpoint and understand why, so I thought the perfect way to do this would be to write out my analysis and my thoughts in article format so I can share it with you all. This article addresses the question featured in the title: Why does our culture react so negatively to disability activism?

Ableist preconceptions that exist culturally regarding disability:

When we take a deep look at how the topic of disabilities is covered in the media, it is actually quite shocking. For example, I have an issue with the tv show called “The Undateables”, which is a dating show about people with disabilities finding love. While I believe that disabled people (including myself) should have the opportunity to find love just like everyone else and appreciate the representation this show provides, I don’t support that show because of the title’s connotation and denotation. Using the term “undateable” to describe an entire group of people is downright insulting. You’d never see a media organisation calling someone who’s from any other minority group (but who is not disabled) “undateable”. 

I am not “undateable”. My brothers are not “undateable”. My friends are not “undateable”. No person should be labelled “undateable” for something they can not control. This is just one example of society’s ingrained ableism that many people are blind to.

We’re to be pitied, but not listened to. This is another ableist preconception I’ve witnessed. Often disabled people are portrayed to be these pitied, helpless beings who need charity, not a voice. We must be passive to maintain this image otherwise we are labelled as “trolls” or “entitled”. I’ve been told that if I can walk and/or articulate then I’m not disabled enough to complain about facing injustices. That is so incredibly wrong, especially since if people like us who can speak up don’t, then who will? 

Ableist preconceptions that exist culturally regarding disability

I’ve also been told that I should stop using my disability “as my personality” when I responded to a post on social media. Actually, I’ve been told this multiple times. That is one of the most ableist things I have heard to date. I’m sorry that I can’t “turn off” my disability. I experience pain every single second of my life. It impacts my ability to sleep, my ability to sit, my ability to stand, my ability to walk, my ability to work, my ability to study, and my ability to socialise. Am I supposed to forget that? Not only that, but why shouldn’t I fight for injustices against people with disabilities to end?

Invisible disabilities make people uncomfortable:

Many people feel like they have to see something to believe it, which is fine until you start talking about invisible illnesses and disabilities. If I’m not using my cane, you couldn’t tell I’m disabled just by looking at me. And yet, my disability impacts all aspects of my life, whether I’m using my cane or not. Many times I have had people accuse me of faking my disability on my activism posts, telling me that I don’t “look” disabled and that I’m just “lazy”. I’ve had to grow up listening to this from my peers throughout my childhood so it doesn’t bother me as much as it used to. I’ve become desensitised. However, this behaviour needs to be addressed, because next time it could be said to someone who is not experienced dealing with this kind of harassment.

The disability rights movement isn’t as “trendy” as other human rights movements:

This point may be a bit controversial, however, I think it’s important to talk about. As a disclaimer, I’m not trying to tear other movements down to lift up disability awareness, I am simply comparing current cultural awareness and coverage of different movements in the mainstream media. I am not trying to say that either of the movements I compare disability activism to below deserve less attention, because I believe they deserve all the coverage they are getting, if not more. I also believe that the disability awareness movement should have just as much coverage as these movements so that they’re all at an equal platform.

LGBTQIA+ pride, for example. We have pride parades and Pride Month, events dedicated to raising awareness about discrimination against people within the LGBTQIA+ community, and LGBTQIA+ merchandise specifically aimed at raising awareness and money for charities that support this goal, which is a great cause. Companies change their logos or advertising media to reflect these events to show their solidarity, which is amazing. There are even multiple public spaces in my country that have been painted rainbow to celebrate Pride, such as town squares and selected zebra crossings. Feminism is another example. We have the women’s march, international women’s day, feminist merchandise, and a tonne of events targeted at raising awareness about discrimination against women. Both of these movements are prominent in pop culture and get a large amount of media coverage, as they should. 

The disability rights movement isn't as "trendy" as other human rights movements

I just wish we could see the same effort go into raising awareness about discrimination against people within the disability community, as well as a similar amount of media coverage of these efforts. Where are the disability awareness parades? In my country, there are none. There are disability awareness days, however, I have yet to see the mainstream media address them. The inequities of identity awareness in our culture is definitely an interesting topic to think about.

Disability activism is not “convenient”

Part of disability activism is confronting people who are taking advantage of disabled people just to make their own lives more convenient. For example, calling out people who park in disabled parks without a permit, or sharing public service announcements about misuse of disabled toilets. When I mention the misuse of disabled toilets, I don’t mean them being used by someone with an invisible disability. People with invisible disabilities have as much right to use the disabled toilet as every other disabled person. When I mention the misuse of disabled toilets I’m talking about the people who have no impairment what-so-ever (or aren’t assisting someone with an impairment) who just use the disabled toilet just because it’s there. 

I have witnessed people without disability parking permits parking in disability parking many times. When called out on it, their response is often “I’ll just be a few minutes.” That is one of the most common responses, along with resorting to verbal abuse when someone mentions their lack of a permit. I have made posts about these occurrences on my town bulletin Facebook pages, and every single time I have received abuse from people who see no issue with parking in one of these parks without a permit. I get told that I’m entitled, even though I paid for my permit to use those parks, while the abusers that park there don’t. How am I entitled for asking to use a service that I pay for?

Privileged people who lack empathy don’t like having their privileges, even the privileges that aren’t rightfully theirs to begin with, taken away.

There’s also the issue of inaccessible public spaces or stores. Renovating an area to ensure it is accessible by everyone may not be cheap, but it is necessary. Calling out local businesses that exclude disabled people from their stores and spaces is extremely important.

Disability activism is not “convenient” especially when it addresses the misuse of disability parking and disability toilets

During my advocacy journey (despite it being a short one at this point, I only started about 4 years ago) I have faced a lot of feedback. Some of it good, some of it bad, most of it respectful. However, I have also faced a lot of abuse, mostly online, for standing up for what I believe in. Sometimes, for a brief moment, I consider giving up, but then I remember the people that have thanked me for speaking out. This article is dedicated to them. I long for a day when disability activism is no longer controversial, and people no longer have to fight for their voices to be heard.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

Why We Need More Books Published That Talk About Disabilities

Why We Need More Books Published That Talk About Disabilities

Like many people, I’ve enjoyed reading for as long as I can remember. Reading has always been a passion of mine and it was part of the reason why I decided at a young age to write a book. Throughout my years of being a bookworm, I have read many books that have inspired me to write more about my life experiences with Cerebral palsy; such as Mice of Men by John Steinbeck and Forrest Grump by Winston Groom. 

These books have helped me cope with my Cerebral palsy throughout the most difficult times of my life. As an advocate and author, I strongly feel that we need more authors to write about people with different types of disabilities such as Cerebral palsy, Autism, Muscular dystrophy, and more. I truly think that if more authors start writing about disabilities and inclusion then it would help society have a better understanding of what life is like for someone with a disability.

Picture of Author: Tylia Flores.
How books that talk about disabilities have helped me.
Picture of Author: Tylia Flores

How books that talk about disabilities have helped me:

More books like this will allow children with disabilities to have someone to look up to, even if it’s just a fictional character. For example, when I was in the 5th grade I was asked to read Howie Helps Himself in front of the whole student body to discuss the topic of students with disabilities. At the time, I was a little girl with buck teeth using a quickie wheelchair.

I stood out in mainstream classes like a sore thumb, and I wanted to fit in society as an 11-year old who loved Disney Channel, my Nintendo DS, and pop music, rather than for what people saw on the outside. After reading Howie Helps Himself to the student body I learned to be proud of the young little girl that I was at the time. I also learned to love myself despite the fact I had this health condition, Cerebral palsy, that I would have to live with forever.

How having more published books about disabilities will benefit society

How having more published books about disabilities will benefit society:

We need more awareness about disabilities in literature so that young children, teenagers, and even adults with disabilities don’t feel isolated from society.  Having more discussion and literature that brings up the topic of self-identifying and acceptance when it comes to people with disabilities as well as the different types of disabilities that exist, could help reduce bullying in schools. This is because students would be more aware of people with disabilities and have a better understanding that would help them adapt to communicating with people in society that have disabilities.

That is why I chose this career path of being an author and an advocate, so that I could help people with disabilities through my literature and advocacy work. I continue to work on my writing and my advocacy so that people with disabilities don’t have to feel the loneliness that I felt earlier in my life.

Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.

Painting Pain through Performance Poetry: Disability Activism and Spoken Word


When first diagnosed with Ehlers-Danlos Syndrome Hypermobile Type (hEDS) I was confused. Not only was I confused with my own identity and my place in this world, but I had just found out that the cause of my moderate to severe chronic joint pain and joint instability was a rare and under diagnosed connective tissue disorder. I had never even heard the name Ehlers-Danlos until one of my teachers (who was also the liaison of my Individual Education Plan or IEP) noticed my bulky knee braces and hypermobile elbows. Because of her observations, I was able to find a diagnosis after three years of misdiagnoses. The average rare disease patient is undiagnosed for nine years before an answer is found. Three years for me was a blessing, but what was sixteen-year-old me going to do with a new diagnosis? I desperately needed a creative outlet.


I was introduced to the world of spoken word poetry by a friend my freshman year of high school, however, it was not until the beginning of my junior year that I got a diagnosis. I then wrote my first poem about Ehlers-Danlos Syndrome for the Topsfield Fair slam, titled “Scrapped Stripes”. This family friendly awareness poem was based off the infamous phrase taught to medical students, “When hoofbeats are heard think horses, not zebras.” With a couple months of editing and hard work, “Scrapped Stripes” was able to be used at Louder Than a Bomb, a poetry competition which started in Chicago and is now nationwide. That poem was only the beginning of my disability activism through words.


Since then I have written poems about flare days (“Flare Day”), migraines (“Hurricane”), mental health (“Hacked Hell”, “Hazards of a Miner”, “Asylum of Cards”, “Love Notes in Lunch Boxes”), positivity in disability (“Fan Mail to Barbara Gordon”, “Cripple Swag”, “Acceptance Letter”) and even about healthcare (“Dear Senator Warren”, “Letters From America to Insurance”). With each poem I write comes the energy to create more poetry. It’s like harnessing creative juices as if they were water and using them for energy, or in this case, activism. Passion comes from life experiences and from the heart. I am currently putting together a chapbook titled The Anatomy of a Zebra which will showcase a great chunk of my poetic reservoir. For now, here are just a few examples of how I use my voice through performance poetry to advocate for physical and mental health.


Scrapped Stripes

Badum badum  badadadum
When you hear hoofbeats, think horses, not zebras,
Horses are more common than zebras,
The science of the unknown is still science and zebras still exist, but most people have never seen a zebra in real life , so why should you believe Mulder and think otherwise?
It’s all you know.
So of course folks are going to think that zebras don’t exist,
But that would mean I don’t exist.

They’re calling me a unicorn,
an animal that was left off the ark for a reason:
Because they are lying hypochondriacs,
Always telling tall tales about their long list of symptoms that rotate daily, exaggerating fake maladies.
To them, a subtle tap is like a knife thrust
Insulting us zebras who ACTUALLY have those symptoms
Their horns continuously grow after each word they say like Pinocchio’s nose for each lie that leaves their loose lips
I may be rare but I am very real

I am screaming at doctors to look for zebras like us
But of course we get put out to pasture because horses are more common and we are mistaken for being klutzy thinned skinned unicorns: fictions.
I am screaming EHLERS-DANLOS SYNDROME, a disease where my collagen refuses to work properly
And you still assume that my collection of subluxations, bruises, and cuts are because my father abuses me until I am a black and blue rag doll with stitches coming undone when really I just tripped on the stairs at school
You still think that I am a hypochondriac because there is no possible way I have a chronic illness when I look just like you,
No way I can be ill because I am out living life and not hanging from a noose of wires, tubes, and monitors.

Yes I know that I am a contortionist in the Cirque Du Soleil
Acrobatics may seem like fun, but it hurts
Yes my skin is really a velvet canvas painted with brush strokes of bruises and scars
Yes my body is glazed with fatigue like a Christmas ham gone wrong.
And yes EDS is a real condition
I did not make that up.
Even if doctors need Google to understand it.
Wikipedia being the instruction manual for the cheap broken toy called me.

I wish that they could just understand that I am not a fraud but a human being who happens to have an invisible illness.
An illness that doesn’t define who I am, but teaches me how to be strong.
There will always be wolves cosplaying as sheep
And I will have to fight them off if I want to survive

Badum badum  badadadum
Hey look mommy!
A zebra!
Wow, you’re right it is a zebra.
And that’s one bad ass mother flower fighter right there.

Cripple Swag

I am the epitome of everything beautiful
Awesome rushes through my veins
And I have never felt so radiant
The secret to this youthful glow?
Ehlers Danlos Syndrome
That’s right
A chronic illness
A silent ticking time bomb is the key ingredient in the making of this sexy badass
That’s right
I see you
I hear you
I know you’re jealous of my cripple swag and the way I walk the halls as if it was a cat walk
My cat walk
Because honey, I own this penguin waddle
I know you envy that I have in my possession the key to the elevator
So I can get to my classes fashionably late and in style
And teachers don’t care if I have a pass or not
With a wave of my key they nod with a smile
I am worth interrupting class for
Like Pavlov’s dogs you drool when you see me
Because my physique is the meat you’ve been craving to eat
Skin velvet soft to the touch
Beautiful almond eyes with a touch of blue sclera to accentuate my grayish blue irises
My double jointed skeleton sweeps you in like a siren catching its dinner
Knocking you unconscious with every snap, crackle, and pop
You only dream of surviving being in bed with me
My glasses and orthotics are fashion accessories
Complementing my trendy attitude
And baby,
Don’t get me started on my perks
Preferential seating at every single concert
First class treatment
Wishes coming true by the rub of an oil lamp
The nurses know me on a first name basis
Because I am just that damn popular
So I dare you to call me worthless one more time
Tell me I am a burden
Because I am not
I am just a package too awesome for your dirty hands to handle.


Flare Day

My bone marrow is a sponge seeping with fire ants pinching my nerves in synchronization to my
Overworking muscles and tendons compensating for bones who slack off and leave the work for others to finish
The 9 to 5 agenda need not apply to them

Joints that are made of rice krispies
Just add milk to hear the snaps, crackles, and pops of pain and dislocations with each extension
The song of my people plays loud inside me
Swaddled in barbed wire
Steel spokes scraping my skin
It demands my full attention like a tyrant overruling my body
And to overthrow the government with focus would just be blasphemy

I just want to focus
Have my mind analyzing the board and
understanding the lecture
But only my eyes seem to want to engage
My brain choosing to inflate with oxygen like a balloon instead of listening just to be sucker punched repeatedly by small laughing children
Snickering at my inability to function
My head too heavy for its pedestal
Wanting to detach from its velcro mount so it can roll freely on the floor

Weights hanging off from my arms like ornaments on Christmas tree branches
Lighter ones on my shoulders leaving the heavy meaningful bulbs for the end of my fingers
My stomach braiding ropes to support my spine so it may be used as a punching pad for training MMA fighters
Claws clenching down on my ankles and thighs to keep my leg stable as a saw carves around the kneecaps
My flat footed foundation deemed weak,
Allowing for my garbage body to crush my toes
Yet you call me a lazy millennial for closing my eyes

I am not lazy
I am a worker bee
Waking up
Going to school
Pushing through constraint seating
Educating myself
Playing with words
Playing with cameras
Taking care of my broken body
The day I stop working is the day I stop buzzing is the day I stop breathing is the day that I die
And though I can’t focus
I refuse to die



About the Author

Hana is a 19-year-hana photoold college student with Ehlers-Danlos Syndrome & Co who uses her passions of slam poetry, photography, videography, writing, and music as a platform for self advocacy and disability activism. She is a strong believer in removing negative stigmas of disability and spreading awareness. As a new member of The Unchargeables Twitter team, Hana is excited to get to know all the chargies and help make a difference in this world.