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.
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?
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
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.
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.
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.
old 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.