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.

What Cerebral palsy awareness month means to me (March 2020)

What Cerebral palsy awareness month means to me (March 2020)

March is Cerebral palsy awareness month, which is dedicated to the 17 million people diagnosed with Cerebral palsy around the world. 

I first got diagnosed with Cerebral palsy at the age of 2 years old. Growing up with a condition like Cerebral palsy wasn’t the easiest task and I had many obstacles to face.  But I overcame those and now I’m able to share how I’ve overcome the hurdles in my life. These are hurdles that I thought where huge at the time. I can now share my journey through my advocacy work and the stories that I’ve written.

Why Cerebral palsy awareness is important

Getting the chance to spread awareness for Cerebral palsy for a full month is awesome, though I celebrate Cerebral palsy Awareness 365 days a year. While every day is a great day to spread awareness, March is definitely a month that I look forward to because it gives me a chance to educate people more about my condition. I like to share my experiences about what it’s like to live in a world that you constantly have to adapt to, since not everything is accessible to you as a person with Cerebral palsy.   

Why Cerebral palsy awareness is important (picture of Tylia Flores, Author)
Picture of Tylia Flores, Author

For example, sometimes when I go to store with my mom, we tend to get people who stare and point at me like I’m E.T.. It feels like I landed on earth and befriended a boy named Elliott. Meanwhile, I’m just an average 24-year-old that uses a wheelchair and has a passionate, creative mind that I tend to use for my stories that I have to tell.  I’m not any different from anyone else and I just want to be accepted in society as I am and not as anything different. Cerebral palsy awareness month allows me to bring awareness to that. 

Cerebral palsy Awareness month also gives me a chance to reflect on how far I’ve come in my life with Cerebral palsy. I get to look at all the milestones I’ve reached, as well the ones I will continue to reach as my journey with Cerebral palsy continues. I love to look back at the stories that have been written by me and the people I’ve been impacted by, such as many of my friends who are also advocating for Cerebral palsy awareness. We’re all in this together and nothing could break that bond between us all. 

I’m not fighting for a cure, I’m fighting for awareness

Cerebral palsy is the most common childhood disability, yet I feel that there’s very little awareness about the condition in comparison to other disabilities (such as Autism). I’m constantly reminded of the lack of awareness as I wheel around in society and don’t see one touch of green in honor of Cerebral palsy awareness in March, instead of just for St. Patrick’s Day. 

I'm not fighting for a cure for Cerebral palsy, I'm fighting for awareness

My advocacy is not about finding a cure for me, it’s about spreading awareness to the people that are unaware of Cerebral palsy and what it is truly like to live with this condition. People seem to think it goes away when your childhood is over, when really childhood is just the beginning of the difficult journey of living your life with Cerebral palsy. In my opinion adulthood is the hardest part because you have to navigate through life and it’s difficult, but having a month that brings awareness to this struggle is awesome.

About the Author:

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.

The Kate Kronicles: The Great Move of 2016



As Spoonies, I know we can all appreciate the energy and sometimes struggle required to things normies make look so effortless. Well, it took two days and ALL my spoons but I did it! I’m officially moved into a new barrier free apartment. The move wasn’t that horrendous or that bad in all reality. All I did was move from an upstairs apartment to a downstairs apartment within the same building. I really lucked out, unlike the people who have had to move further to be in an accessible home.




This whole move/pushing for an accessible apartment started over the summer as I started having more and more problems with my balance and going up the stairs was becoming increasingly hard for me to do. I kept bugging my landlord telling him I needed an apartment in a building where I did not have to use any stairs. Finally in March of this year I found out the barrier free unit in my building was empty. I went to the manager of the complex and requested a move. The fact that I was requesting a barrier free unit meant I had to do a lot of paperwork and have my doctor fill out papers stating that said I would benefit from a barrier free unit. She even went so far as to write me a script for a walker. The walker has helped me so much and helped me to feel so much more stable on my feet! She also wrote for me to get a hospital bed which has helped with my headaches because I can sleep at an angle that helps my shunt to work better at night.


The move

Finally a month after I turned in all the paperwork I finally hear back! My landlords manager approved my “transfer” to the barrier free unit. I was over joyed; finally, my struggle with the evil stairs was coming to an end. I enlisted the help of a couple from my Church to help me; my dad told me he could help me the next day. So, I asked the husband if he could be available on that day and he could.
When Monday the 25th of April came, I was excited. I got up and finished some packing. After about an hour of that, I went to sign my papers. By the time I started hauling boxes (small, light boxes) I was done, this Spoonie tired herself out faster than she thought she would. Around noon the husband called and asked if I could use some help. “OF COURSE!” with his help we killed it. All the small boxes down stairs and some big ones.

He moved my living room save the furniture, my bathroom, linen closet, after about 2 hours at work on that task, he went home to leave me to unpack and decided where I wanted stuff, when his wife came over after she got out of work, she found me on my floor finishing putting my linen closet in order. I had made quick work of the bathroom so everything was kind of put away. We took a couple boxes back upstairs and started moving my kitchen stuff downstairs and putting that away. In no time, we had moved that and a few other things downstairs, it was getting late so she asked if I was hungry, “OF COURSE!” so we went to a small restaurant and got some dinner, chatted with people from our town, and relaxed. At that point I was running on adrenaline and worry over hitting my head on the freezer door while cleaning out my fridge. The joy of having a shunt, always waiting for the other shoe to drop and end up back in the hospital.

When I got back to my new apartment, it occurred to me I couldn’t sleep there because my new hospital bed hadn’t arrived like it was supposed to, so I went upstairs and slept in my Lazy boy because I had already stripped my bed and was too tired to remake it. I slept surprisingly well and when morning came, I did not want to move! I was sore, so sore!


Day 2

The second day of “the great move of 2016” started with me taking a few small things downstairs then waiting for the delivery guy to bring and set up my new bed. While waiting I unpacked some more things and tried to organize as much as I could. Between you and me I hate, hate, HATE clutter especially my own. As I did that I also made a list of organizing products I wanted to purchase to make my life easier. Most of them I had been thinking about for a while but I hadn’t added to my Amazon wish list or even attempted to purchase. I was still really tired and probably should have been attempting more sleep.

spoon fairy pillowcase


Around eleven a.m., the delivery guy finally showed up and setup my bed. While signing the paperwork my dad showed up and the guy walked him through the bed operations while finished. All I can tell you is when I saw that bed my eyes lit up because I could just imagine the relief of being able to wake up without headaches or a stiff neck because I fell off my mountain of pillows.
Shortly after my daddy arrived I called the guy from my parish who had helped me the day before and him and my dad made quick work of moving the rest of my stuff downstairs into my new place. I was really surprised with how fast it went, then again when you look at the amount of stuff I actually have I don’t have that much. Anyway, after they finished moving stuff down I worked on putting drawers back in my dresser and made my bed with my new purple sheets and my Spoonie pillowcases (which can be purchased at https://www.gearbubble.com/gbstore/spooniesforlife). After I bid farewell to the guy from my church me and dad went out for food then he dropped me off back at home and I fell asleep while he took my double mattress to my grandparents’ house so that my sister can use it in a couple months when she moves into a place of her own. The next day I stayed in my bed all day my legs where so sore and my back hurt so bad that I needed my walker to get around.




While lying in bed for two days only getting up for food and bathroom I did a lot of thinking about how nice it was to finally be in a place where I could have my walker ALL the time and actually USE it when I need it. I also reflected on how much I hated going up and down the stairs and living in the font of the building and listening to all the noise from the parking lot. It really is a blessing to be in the back of the complex, things are quiet! Quiet is nice when I’m having a bad head day. The new bed is also an awesome help, here I am a week out and I’ve only woken up with one headache which is way better than before and no neck pain! I’m in love with this bed! I’ve never met a comfortable hospital bed but this one is pretty nice and I can’t complain no back pain or any other pain at all!
While the move was stressful and even thinking about moving all my stuff was stressful. However now that the move is over with and the last box is unpacked and things are finally going up on walls I’m so much happier and I’m sure that this will help my health so much because I don’t have to worry about blacking out climbing the stairs or getting dizzy and falling down the stairs! So excited to spend the next couple years down here in the back of the building, now to get the rest of my life in order, so many things to do so little time!