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.

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.

Going to Movie Theatres with Cerebral Palsy and Epilepsy (My Personal Experiences)

My Experiences Going to Movie Theatres with Cerebral Palsy and Epilepsy

Like many people, I have always enjoyed going to the movies with my friends and family. My favorite types of movies to go see are comedies and films based on true stories. However, due to my Cerebral Palsy and my mild form of epilepsy, I also dread going to the movie theatre because of how it can affect both of these conditions.

When it comes to having spastic Cerebral Palsy, I tend not to do so well with loud noises and screaming since it makes me jump. The flashing lights and moving colors that are often on theatre screens are not good for people with epilepsy. As a result, whenever I go to the cinema I have to worry about what may happen if this movie has a scene where there is a lot of flashing lights or moving colors, or if it has loud noises that could make me jump and cause other movie go-ers to stare at me.

Dealing with self conciousness

Each of these disabilities impacts my life in different ways and sometimes it makes me very cautious about going out to certain places because of the responses that I get from the people around me. My body has a mind of its own, which can get out of control when it’s triggered by my epilepsy. It shakes and moves around and I have no idea what’s going on with my body. I don’t know if there will ever be a time where I can go to the theatres and be comfortable to enjoy the movie without a single worry on my mind.

Dealing with self-consciousness when going to the movies with epilepsy
Pictured above: Author, Tylia, at a movie theatre.

How movies could be made epilepsy friendly

It would be nice to be able to enjoy certain movies without having to be cautious about them having flashing lights or loud noises in them. This could be made possible if filmmakers would gain more awareness about epilepsy and other conditons, and how these conditions affect movie goers that enjoy movies but also have to worry about their epilepsy or other symptoms being triggered during the movie.

This would mean that people like myself could enjoy films and head out to the theatre more often without a single worry about their bodies or having to deal with the stress of not being able to enjoy the film because of their health. My combination of Cerebral Palsy and epilepsy together cause me to experience this stress every time I see a movie.

Movies could be made epilepsy friendly

Until filmmakers make efforts to change this I will continue to go to the cinema and watch brand new movies because I refuse to miss out on things that everyone should be able to enjoy.

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.

Why We Need to Talk About Disability Inclusiveness in Schools

Why We Need to Talk About Disability Inclusiveness in Schools

There is currently an international movement for the inclusion of students with disabilities in education. ‘Mainstreaming’ occurs when a child with special needs and/or a disability is taught in general classes while learning from the regular curriculum while receiving additional assistance when needed.

I had always gone to mainstream public schools up until the tenth grade when my parents decided to home-school me. Throughout my years in mainstream schools, there were times where I was the only student in mainstream classes with cerebral palsy and chronic illness. While I had support such as an IEP (Individualized Education Plan), the importance of inclusive learning wasn’t a topic that was really discussed.

Disability Awareness as Part of the Curriculum:

It’s important that the inclusion of children with disabilities and chronic illnesses is discussed in mainstream schools because we need to educate students about the different types of disabilities and chronic illness. This way, able-bodied students can have an idea about what students with disabilities and chronic illnesses have to face. This could encourage them to help their fellow students to have an easier school day.

Teaching students about disabilities and chronic illnesses can encourage them to be more understanding of their fellow students

We should also be discussing the topic of Disability History in schools, while learning about disability advocates such as Ed Roberts, who was the first student in a wheelchair to attend the University of California, Berkeley. He used his platform to speak out about disability rights for all. There is so much history that could be taught to students that currently isn’t.

Disability Awareness In Children:

Some teachers have witnessed that the inclusion of students with disabilities in mainstream classes has led to greater patience and understanding from the other students towards people with disabilities. This patience then transfers to the wider community as the students continue to grow and communicate.

From experience, I know that every time I entered a new school year it would be like starting kindergarten because I would have to constantly answer questions from others about my disability. Sometimes kids in society can be very blunt and sometimes the way kids would ask me questions about my cerebral palsy would be rude. Though I know they didn’t know that they were being rude. 

Educating students about disabilities could help prevent them from saying something rude to someone with a disability

This could be avoided if we had awareness in schools about the different types of disabilities they are and how one can differ from the other. For example, I find that spina bifida and cerebral palsy are two disabilities that get mixed up often. While they both can result in people using wheelchairs, they are two completely different disabilities.

Further education about people with disabilities shouldn’t end with students; Teachers should also receive more education about how to be inclusive towards students with disabilities and chronic illnesses.

Adapting education to be inclusive

Along with having a curriculum featuring disability activism that is taught in all education levels, we should also have adaptive activities for people with disabilities to participate in throughout the school year. This could include certain events that bring awareness to people with disabilities like a disability awareness week.

Raising awareness regarding students with disabilities

This could give a voice to students with disabilities and allow the students that have a hard time fitting in due to their disability a platform to share their experiences. This could allow them to bring awareness to the obstacles they face as students who are in an environment that wasn’t made for them, and how they must adapt, which can be extremely difficult.

I strongly feel that we as a community need to start fighting for schools to teach students about disabilities and chronic illness because knowledge understanding is the key to living in a world where everyone can feel accepted. 

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.

What Helps Me to Stay Strong (Through My Family’s Chronic Illness Journey)

What Helps Me to Stay Strong (Through My Family's Chronic Illness Journey)

I’ve always found it difficult to share my feelings with other people. I would keep it all to myself. This, however, changed when we received the latest diagnosis for both my daughters. 

Let me start by giving you some background information about me and my family: It’s just me and my girls, and we live in Holland. We are also known as the bendy bunch, all three of us have Ehlers Danlos syndrome. And as a bonus, we all have some similar and some different additional illnesses (which we like to refer to as extra toppings). Mine are adenomyosis, dilated aorta, retinal vein occlusions, high blood pressure, and I no longer have my own teeth. Both my daughters have POTS, ME and as we know now since June this year Craniocervical Instability (CCI), Atlantoaxial instability (AAI), hindbrain herniation, and the youngest is close to brainstem compression. When they were giving out chronical illnesses, we were obviously front in line… And I’m pretty sure I forgot to write some of them down. 

The shock of these new diagnoses

The latest diagnoses were a shock. We’ve been dealing with chronic illnesses for quite a while now, but this one really gave me a scare. Not one, but both my girls have a life-threatening and life-limiting disease. And as I usually do when I get stressed, I started planning and thinking about what could be done to fix this. I turned to the insurance company, but the treatment, an operation done in another country, wasn’t covered. This didn’t come as a big surprise, because we had to go to another country for the diagnosis which, as you can probably guess, was also not covered.

The stress of receiving new, life threatening diagnoses

As I continued to process this, my thoughts went in all different directions as my emotions went into a spin. You wouldn’t have known that, though. On the outside I was calm and rational, and I tried to stay that way. I had to be strong for my daughters. They needed to know that everything would be okay, or at least, as normal as possible. When we received the news about these diagnoses, the adrenaline took over and I went into first, second and third gear. I’m still feeling it after two months because if I let go of this adrenaline, I’m afraid I’ll break down. And that’s not an option. 

Creating a Foundation and Establishing a Social Media Presence

In the last two moths following the diagnoses I started a foundation called Help Jane & Rosa battle CCI/AAI. We had to go to a notary office to make it official. As a result of the Dutch tax laws, I found that a foundation is the best way to go. Otherwise, all donations would be considered an income. Friends of mine built the website, and I deliver all of the text and images. We have also created a Facebook page, an Instagram account, a Twitter account and a YouTube channel. Unfortunately, most of the videos on our YouTube channel are in Dutch, however we try to make some English versions too.

How blogging has helped me cope with my family's chronic illness journey

Filming these videos was really awkward for me. In the beginning of this article I mentioned that I’m not a great sharer, but as you can see, I’ve stepped outside all of those boundaries I once had. Writing about what’s going on in our lives is one thing, however filming videos was a huge step for me. If you want a grin you should check it out. Even with me speaking in Dutch you can see how exposed and awkward I feel. Luckily my daughters, especially Jane, are taking care of the video aspect. This meant I could start writing a blog for our website. All this work establishing a social media presence is to raise more awareness and to fight for an operation for both of my girls.

The Support of Friends, Family, and Aquiantances

I always knew I had great friends and family (not all of my family has been supportive, but who has a perfect family?) but what really surprised me is how supportive even my colleagues have been. Not only have they supported me by making a donation, they have also done so much more. One started designing T-shirts, one started developing calendars, and Jane’s old school of is thinking about a project for raising funds. They offer help in any way they can. I know not everyone is so lucky, and for me, receiving all this support was a true eye opener.

I realised that not only was I bad at sharing, I was also reluctant to ask for help. I surprised a lot of people by reaching out for help, and as the time goes by, it gets easier to do so. I still blush when I do, especially when I do it face to face. But I’m managing it and it makes me proud that I do. Today during a coffee break at work, I asked the owner of the coffee bar if he could share our fundraising page and make a donation. And again, the warmth of people was overwhelming.

The support of my friends, family, and acquaintances is very important

On the workdays I’ve been drinking my morning coffee there for over the last five years, my daughters’ illnesses have come up in some conversation. He was very concerned for their health and immediately started thinking about things he could do to help. This shows that even acquaintances are sometimes more than just people you meet now and then. The bond you have with them is sometimes stronger than you think.

All Of This Helps Me To Stay Strong

Blogging and writing about how I feel what’s going on, and where we stand is really helping me cope. Sometimes it puts things into perspective or helps me to channel my emotions in a constructive way. Today I felt sad while I was going to work. I was quiet during a meeting because my thoughts were all over the place and I felt like I could burst into tears at any moment. So, I started writing this article, thinking about all that has happened in the past two months and all that I’ve achieved. And for a chronically ill mum, with chronically ill daughters, I feel like that’s a lot.

So, I’ll keep you posted about how all of these illnesses have an effect on us and our lives, about how the fundraising is going and what difficulties comes with raising funds, and how all of this mixes with work and day to day life. Sometimes it’ll be sad, sometimes it’ll be fun and sometimes it’s just how it is. Because every day is different and life don’t always turns out as planned. And that’s okay, as long as we have each other we’ll get wherever we want to go, eventually. The love in our family will always get us through the rough spots and that’s how I stay strong. 

Monique Blaauw is a mother of two daughters (20 and 19). Founder, chair(wo)man and treasurer of the Help Jane & Rosa battle CCI/AAI foundation. She has been a single mother for 18 and a half years. Works fulltime, as well as being the caregiver for both her chronically ill daughters and older mother and is chronically ill herself. 

Famous People With Cerebral​ Palsy (Cerebral Palsy Awareness Day)

Cerebral palsy, a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth. It is the most common childhood condition in the world. 6th October is Cerebral Palsy Awareness Day I wanted to write about the condition and famous people who have made an impact on how people view people with Cerebral Palsy.

Why Talk About Cerebral Palsy

Spreading awareness for Cerebral palsy is important because there’s very little awareness about the condition. It’s very important that we all come together as a community and as a nation to break all the stigmas about cerebral palsy. For example one of the most common misconceptions about cerebral palsy is that people with cerebral palsy are not likely to accomplish anything because of the severity of the condition. When truth be told this is false take a look at all these amazing celebrities that have cerebral palsy but have made a huge impact on society and the way we look at cerebral palsy.

It's very important that we all come together as a community and as a nation to break all the stigmas about cerebral palsy.

6 Famous Names With Cerebral Palsy

Micah D. Fowler born March 8th, 1998 who is mostly known for his roles in Abc’s Sitcom ” Speechless” Micah also made appearances on Nick Jr.’s preschool shows Blue clues and Sesame street Miach has created a new way for screenwriters and show creators to break the stigmas about Cerebral palsy and give insight on what it’s like to have a condition like Cerebral palsy. 

Christopher Widdows “Steady Eddy ” born on December 7, 1968, is an Australia comedian with cerebral palsy who brings humor to others while embracing his disability in a positive light he made his first appearance in the limelight in 1992. Ultimately Stedy Eddy has taught us that having Cerebral palsy is a humorous journey and we all should embrace it. 

Christy Brown Irish author and poet, painter was born on June 5th, 1932 he was only able to write and paint with his toes of one foot he was most recognized for his autobiography that was adapted into a film in 1989 entitled My Left Foot. Starring Daniel Day-Lewis. 

karen killilea Born august 18th 1940 was born 3 months prematurely later on her parents found out she has Cerebral palsy so her mother Marie Killea decides to write books in honor of her daughter’s journey with Cerebral palsy which is apart of the new yorks best selling list. her mother Marie was an active advocate for Cerebral palsy. 

Abbey Nicole Curran born on July 28th, 1987 diagnosed with Cerebral palsy at the age of 2. Abbey was America Beauty pageant constant from Iowa she is a current chairwoman for her non-profit ” “The Miss You Can Do It Pageant” for young girls and women with special needs she is also an author of a book untiled ” The Courage to Compete: Living with Cerebral Palsy and Following My Dreams.

Dan Keplinger born on January 19, 1973, Artist Dan Keplinger was featured in the documentary short oscar-winning ”King Gimp” Dan is an also is a motivational speaker and currently lives in Maryland and still paints. 

Who Inspires Me The Most

As a 24-year-old woman with Cerebral Palsy I look up to comedian Josh Blue who was born with cerebral palsy but uses his condition to make thousands of people laugh.

As a 24-year-old woman with Cerebral Palsy, I look up to comedian Josh Blue who was born with cerebral palsy but uses his condition to make thousands of people laugh.

Turning a negative situation into a humorous one is something I like to do too. The main thing I want people to know about cerebral palsy is that we can achieve our dreams just like everyone else can! it may take us a while but eventually, we will get there. We will stomp on Cerebral palsy one step at a time. There are many people that have cerebral palsy but hasn’t allowed it to stop them achieving their goals

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.

Is Using My Cane A Mockery Of Old People?

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

Coming to terms with the fact that I needed to use a walking cane was initially very difficult for me. After all, I wasn’t old, and the stigma around walking canes is that they are only for the use of the elderly. I was 16 years old and barely able to walk half the time. The pain of Fibromyalgia consumed every minute of my life (it still does), and I was barely getting out of the house besides going to school.

A letter to the Elderly Lady who called my cane usage "a mockery of old people"

The Reasons For My Cane

I didn’t even have the energy to grocery shop, which is something I had always enjoyed helping my mother with. At that stage, I had been coping with widespread chronic pain for about 9 years. I was struggling my way through high school, and I didn’t know if there was any hope for my future, since the pain has done nothing but get worse. My quality of life and self-esteem was almost nil. 

Getting a walking cane changed that completely. I was able to gain back some of the independence that I had when my pain was less severe. I’m now 19 and attending University part-time. I know for sure that without using a walking cane, I wouldn’t be able to cope with the commute to and from campus (believe me, I’ve tried).

My main fear when it came to using a walking cane was that people would judge me, and I’m not going to lie; they did. They still do. Despite what has been said to me, I continued to use my walking cane whenever I decided that I needed it, which was at least half of the time. As I continued to use it, I become more and more confident about it.

Is Using My Cane A Mockery Of Old People?

Now when I use my walking cane as a 19-year-old, I barely think about it unless someone mentions it to me. It’s a part of me, and I need it in order to be able to function in a semi-normal way. Medical professionals I have seen have approved of me using it, and nothing anyone says will change that.

In this article, I’m going to outline some of the instances where people have voiced their judgements about me using a walking cane, and why I think these judgements are flawed.

Being Accused Of Mocking The Elderly

My mother went to an appointment one morning recently, and in the waiting room a conversation started up between my mother and an elderly lady. My mother is a friendly person, so she enjoys talking to people whether she knows them or not.

At some stage during the conversation, the lady started talking about how there’s a young lady using a walking cane around our town, and how this elderly lady and her friends agree that this young woman is making a mockery of old people.

Is Using My Cane A Mockery Of Old People?

My town is not very big, and everyone knows someone who knows someone. I can confidently say that I’m the only young adult, let alone young lady, in my town who uses a walking cane (that I have seen). My mother had obviously come to the same conclusion because she told this lady that she knew the young woman who used a walking cane.

She told the lady that this young woman was using it for her diagnosed medical condition that she had since childhood, and that she wasn’t mocking anyone. The next day, my mother told me about what this lady had said about me. I was shocked. 

This is the event that inspired me to write this article. I was always planning to write about my experiences using a walking cane as a teenager, however, this gave me both the push and the context I needed.

I didn’t realise that me using a cane as a teenager would bother anyone. I unknowingly, and by no fault of my own, had become a subject of town gossip. And despite me not wanting it to, it hurt me. It hurt me that someone would think such a terrible thing of me when I would never mock anyone for anything that is out of their control.

I would understand if it were children, or even very young adults were the ones being cruel. Having a lack of life experience can result in ignorance. What I don’t understand, however, is grown adults of thirty years or older being so incredibly petty and judgemental.

I can’t wrap my head around it. Having people say these types of things about you can be so incredibly damaging to the self-esteem of someone who is already struggling with chronic illness.

Saying things like this could push someone over the edge, it’s that serious. This isn’t the first, and probably won’t be the last, time that my use of a walking cane has been criticised. 

“Is That [Cane] Really Necessary?”

The first time I walked into my high school’s nurse’s office with my walking cane, I was nervous about the reaction I would get. Looking back, I was right to be nervous. When the nurse on duty that day saw me using the cane, she looked me up and down, scoffed, and said in an amused tone “is that really necessary?”

“Is That [Cane] Really Necessary?"

My friend was with me and heard this too, and I was mortified. I then informed her that my Chronic Pain Team physiotherapist had approved me using a cane instead of crutches and then asked for my medication, holding back tears. Once my mother heard about what had been said, she called the nurse and explained my situation.

While the nurse never made another comment about my cane again, I didn’t feel comfortable around her from then on and I avoided her as much as possible for my final years before my graduation. 

“You Aren’t [Old]”

A month or so ago, I was riding in an elevator at the local train station with an elderly man who also had a walking cane. He was looking me up and down, which is normal for me around older people.

He asked me “why are you using a walking cane? You aren’t my age.” I smiled at him, a bit taken aback, and politely replied “I have a chronic pain condition. It can make it difficult to walk.” I kept it simple, I didn’t want to go into details. He then replied “well I’m old. I’m allowed to use one.” The doors opened just as he finished his sentence, and I exited the elevator thinking about what he had said.

Was he trying to say that only old people were allowed to use walking canes? I didn’t let what he said upset me, I just carried on with my day as usual and kind of pushed it out of my mind. The memory then resurfaced when I was thinking about what was said about me to my mother.

I Won’t Apologise For Using A Walking Cane.

I don’t understand what people have to gain from being so judgemental. It baffles me that someone can have such disdain towards someone they haven’t met or barely know.

Having an invisible disability or illness means that besides any tools or walking aids that are used (such as a wheelchair, a walking frame, or a walking cane), there is no way to tell what I, or any other person with chronic illness, goes through. 

Is Using My Cane A Mockery Of Old People?

I don’t use a walking cane for fun or because I think it’s cool. I use it because I genuinely need it for support when I’m in a lot of pain. I don’t enjoy being a teenager who uses a enjoy walking cane. I don’t the looks of curiosity or disdain I often get from other adults.

However, I will continue to use it because I wouldn’t get through the day without it. I won’t apologise for using a walking aid, no matter what anyone thinks of it. 

Having had a chronic illness since childhood has made my skin extremely thick. It has made me far less mindful of what those who aren’t my close friends, immediate family, or doctors have to say about my health.

Of course, what people say about me does still bother me, otherwise, I wouldn’t be writing this article. However, it doesn’t affect me as much as it used to. I don’t break down and cry when I hear what people say about me, as I would have a few years ago.

My aim with writing my experiences in this article is to spread awareness about young people worldwide who use walking canes due to their health. They do exist, and they certainly aren’t trying to mock anyone. They’re just trying to live their lives, like everyone else. 

Please, if you ever feel tempted to negatively comment on a young person’s use of a walking aid, please don’t. And if you are a young person who uses a walking aid who faces judgement, know that you are not alone.

About The Author

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 I Wish the Public Knew About My Chronic Illness

What I Wish the Public Knew About My Chronic Illness

I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.

My Diagnosis

What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.

Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.

What I Wish the Public Knew About My Mast Cell Activation Treatment

The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.

We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.

The Reality of My Stay in Hospital

Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.

Being chronically ill, I spent my leisure hours in the confines of my four-bedroom walls. I was always a bit stir crazy, craving a change of scenery. But when I was finally discharged after a gruesome eight months, I celebrated the victory of returning to the place I once complained about so often. The nurses cheered as I exited the oncology ward.

What I Wish the Public Knew About the Reality of My Stay in Hospital

Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.

However, I knew that I had the power to eventually find myself again.

The Judgement I Receive from Healthy Outsiders

Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.

Picture of the Author with Her Treatment Tubes

The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.

My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.

About The Author

Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. In her spare time, she runs a small Etsy business and writes about psychology and neuroscience for CogniFit. Although Ehlers Danlos Syndrome and its comorbid diagnoses, Mast Cell Disease, Dysautonomia, and Chronic Intestinal Pseudo-Obstruction present its challenges, she strives to prove that life with chronic illness is still worth living through her blog and its affiliated YouTube channel at hospitalprincess.com.

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.