My Hair, I Care FUNDRAISER

Have you ever walked by a mirror and not recognised yourself?

 

That’s what my new fundraiser is for.

 

A dollar for every hair lost and every time I didn’t recognise myself in the mirror as I lost my hair due to epilepsy treatment and as I recovered. To this day, I occasionally have to do a double take as I walk by a mirror because for a split second I recognised the person looking back at me but, for the most part, I don’t recognise the person in the mirror. I see all the features that make me, I even see my hair again now, but I don’t see me.

 

My sense of identity has permanently warped me into an alien I’ll never truly recognise again. But the minute moments where I do identify the person in the reflection, it’s just as weird a feeling. I still ask, “Who are you?”

 

It makes sense to me as to why this happens.

Hair is a large part of identity to some and I lost it without control or much support.

What confuses me is, how do I get rid of this morphed image I see in the mirror and bring the real me back? It’s been 4 years since I was taken off of that treatment and allowed my hair to grow back and I still don’t know how to fix this. I thought it would fix itself in time but apparently that’s not the case.

I feel disconnected from my body and not in a dissociative manner caused by FND.

 

I’m not alone in this. People with epilepsy often lose their hair due to treatment, testing and surgery. While some own this moment in their life, many of us are left in this scary and confusing state.

 

I want to run the My Hair, I Care fundraiser in honour of my own experience and those of my community. Raising money to help our community through Epilepsy Queensland Inc. and demonstrating solidarity through people altering their hair in our honour.

 

So if you ever been in my shoes this is for you and if you haven’t you can join my team here to fundraise by getting people to sponsor you to cut, colour or even shave your hair. All are welcome here.

The Community History of: Epilepsy

Today we’re having a history lesson. I’m super passionate about the history of my people in all aspects, even if it hasn’t been very well recorded over the years due to the shame the abled world has pushed onto us.

 

The point of this history lesson is to stop people from laughing at the expense of those with epilepsy.

 

Epilepsy has been affecting people at least since the beginning of recorded history.

 

Ancient history believed epilepsy to be a spiritual condition.

The world’s oldest description of an epileptic seizure from the language use by ancient Mesopotamia, Akkadian, text and was written around 2000 B.C. The person described in the text was diagnosed as being under the influence of a moon God and underwent an exorcism.

 

Ancient Greeks saw epilepsy as a form of spiritual possession also but associated it with genius and divine instead. Epilepsy appears throughout Greek Mythology and is also commonly associated with the moon.

 

Ancient Rome didn’t share pottery with people with epilepsy in an attempt to avoid catching epilepsy. People would also spit on the chests of people with epilepsy to avoid being affected as they believed epilepsy was contagious.

 

In 1780 B.C., The Code of Hammurabi lists that slaves may be returned for if the slave were to have seizures in the first three months of ownership. The code also dictates that a person with epilepsy couldn’t marry or testify in court.

 

During the fifth century B.C. of classical Greek a physician, Hippocrates, rejected the idea of epilepsy being a spiritual related disease. He proposed that epilepsy was not divine but a medically treatable problem. Instead of referring to it as the ‘sacred disease’, as was common practice at the time, he decided to call it the ‘great disease’ instead. This decision gave rise to the modern but now outdated term ‘grand mal’ for tonic-clonic seizures. Despite his work of great detail, his view was not accepted at the time and people continued believing epilepsy was of a spiritual, usually negative, nature.

 

Evil spirits were blamed in majority of the world until at least the 17th century.

 

In the 18th and early 19th centuries people with epilepsy were labelled as insane and locked in asylums with incredibly poor treatment. Around 1825 Jean-Martin Charcot found people with epilepsy side by side with the criminally insane in Pitié-Salpêtrière University Hospital, the birthplace of modern neurology. Until the late 1800’s, people with epilepsy were often incarcerated as ‘criminally insane’ despite some stigma easing in Europe and North America due to beliefs shifting from psychiatry to neurology.

 

In 1956, 18 US states provided for the sterilisation of people with epilepsy on eugenic grounds.

 

Organisations like Epilepsy Queensland Inc. were only founded in 1969. The Kemp family were inspired to found EQI due to their son with epilepsy being fired repeatedly on discriminatory grounds. This discrimination was commonplace with no anti-discrimination laws in place.

 

Until the 1970’s it was still legal in the United States to deny people with epilepsy entry to public places such as restaurants, theatres, recreational centres, etc.

 

In the United Kingdom, a law prohibiting people with epilepsy from marrying at all was repealed in 1970.

Before 1971 in the UK, epilepsy was grounds for marriage annulment despite the common vow “in sickness and in health”. To this day in India and China, epilepsy can justify denial of marriage and it primarily targets women in a further act of discrimination.

People with epilepsy in the United States were forbidden to marry in 17 states until 1980.

 

In a 1987 ruling, the United States Supreme Court ruled that “a review of the history of epilepsy provides a salient example that fear, rather than the handicap itself, is the major impetus for discrimination against the people with handicaps.”

 

As late as the second half of the 20th century, in Tanzania and parts of Africa, epilepsy was associated with possession by evil spirits, witchcraft, or poisoning and was believed to be contagious.

 

Today stigma can interfere with timely access to healthcare, early diagnosis, which is extremely important, and treatment.

The negative perceptions of epilepsy among medical professionals and structural discrimination resulting from stigma can impair the service utilization, particularly when there is scarcity of resources for treatment, rehabilitation and research.

In south India, for instance, parents of children with epilepsy tended to isolate themselves from others in their social network.

Around the world a young child with epilepsy may be refused continued access to education because social attitudes in educational institutions are prejudicial and discriminatory. I personally was denied access to continued education during my time in hospital and home care while in high school.

 

While some countries have laws in place where people with epilepsy can obtain a licence after a certain period, typically a year, of being seizure free, people of India simply can’t get a licence.

 

Insurance cover to people with epilepsy in India are issued at disadvantageous rate and are denied benefits in the event of accidents and/or death occurring due to epilepsy.

 

People with epilepsy find it harder to find a stable job as uneducated employers will often find a way around anti-discrimination laws that may be in place, some countries don’t even have these laws, to not employ the potential worker who is fully qualified for the job. If they find a job they may be refused advancement in their role or be treated differently by their employer and peers for having epilepsy.

 

Another obstacle faced worldwide, especially in rural areas, is lack of access to comprehensive epilepsy centres. In 2017 somebody presenting to a rural area hospital was left by doctors and nurses to experience seizures a publicly accessible space outside of the hospital because they believed she was faking for attention when, in reality, they were not accurately educated.

In this same rural area I was personally told that I shouldn’t be an activist because people with epilepsy live perfectly fine lives, so there was no need for what I do.

 

Todays media is just as harmful as the real world.

 

While Grey’s Anatomy is a progressive show that educates as its team learns, in 2005 the show used terms like “fish out of water” to describe somebody having a seizure. This is harmful and hurtful language that is dangerous to use in major mainstream media in modern times.

 

Even more recently a study of Twitter with authors from Dalhousie University in Canada found that of 10,662 tweets containing the word “seizure” collected during a single week in April of 2011, 41% were considered to be derogatory in nature.

 

People still video people having seizures unpermitted to mock the people being recorded. People with epilepsy are constantly the butt of generic, offensive, overly used jokes that have stuck around years upon years.

 

In 2019 after actor, dancer and philanthropist Cameron Boyce died, people acknowledged his death by posting videos of them poorly imitating seizures as the #CameronBoyceChallenge.

 

In 2020 the #SeizureChallenge rose to fame in mainstream media when people used social media platform TikTok to post videos of themselves faking seizures. In the background of the majority of these videos was a song from musician Juice Wrld who died after a seizure that was brought on from drug use. His death made headlines worldwide and this was people’s way of acknowledging that during their already offensive ‘challenge’.

 

Negative stereotypes of people with epilepsy have been so ingrained into society that many with epilepsy accept them. We also sit by silently when things like these TikTok videos arise. I hope by speaking about our own experiences and taking ownership and pride of our history we can change these habits and feel empowered to make change, even if the only change we make is amongst our friends and family.

Good News, Bad News.

It’s hard to celebrate good news when surrounded by bad news.

 

I’m officially epileptic seizure free! After over a decade of epileptic seizures, of medications that slowly drained the life from my body, of neglectful doctors who wouldn’t admit that they didn’t know what they were doing, I’m finally epileptic seizure free.

 

I didn’t give up even though I wanted to many times, my mum never gave up on me and my new medical team of Pete and Sasha never even considered that my case was worth anything less than all the work they put into it. It all paid off because I’m 21 and epileptic seizure free.

 

This is worth celebrating and thankfully, while covid-19 lockdown limits me from doing much, I have people who remind me to not forget the good and I’ve sold a few of the paintings I create to cope with the bad, so I can afford to treat myself in celebration. (Buying a hoodie from my own merch line that you can get here is a good treat, right?)

 

Unfortunately for me, in the same mouthful as the above good news, I was also given bad news. My Functional Neurological Disorder (FND) is worsening and intensifying. I must try a new approach with my treatment plan as what I’m currently doing clearly isn’t working. New things scare me. Treatment for FND can be a lot harder than Epilepsy treatment in certain aspects, which is disappointing as I’m already exhausted. I’ve spent majority of my life fighting with my body and the medical system to be able to get to where I am. I just want to rest but I can’t afford to stop treatment without the high risk of slipping further behind.

 

FND is also making it hard to process that I’m epileptic seizure free as part of it getting worse is my non-epileptic seizures (caused by FND) are beginning to imitate my epileptic seizures. My FND is accessing the part of my mind that holds memories of my epileptic seizure patterns and uses that information to replicate the thing I’m celebrating the end of.

 

It’s hard to feel happy that my epileptic seizures are gone when, quite literally, every other morning I’m waking up feeling like I just had another. At least now I know it’s FND but that doesn’t make it much easier.

 

FND steals my independence and abilities, it takes away my ability to live life rather than just survive, but as if that wasn’t enough it takes away the joy of the miracle I never thought would happen. I’ve spent countless occasions feeling hopeless with tears pouring down face for over half my life, feeling like I’ll never get to feel the euphoria of being seizure free. I was right. I’m epileptic seizure free but I’m yet to share in the euphoria my community experiences when reaching such milestones because I’m not yet truly seizure free and yet again I’m not sure I ever will be.

 

I share this, despite it being quite sad, because there are many stories that sound like the opposite of mine but where’s the diversity. It took me a while to be able to process my feelings into such words but I’m sure I’m not the only one who has such an experience or feels alone in this part of their journey.

It’s also just good to tell the world how you feel sometimes and for the world to have diverse perspectives.

 

P.S. if you could all congratulate the young Renee for making it this far when she never thought she would, that would warm my heart for both young and old Renee.

“You Don’t Look Autistic” Isn’t a Compliment.

My friend Hannah and I look nothing alike but we both look autistic simply because all autistic people look like themselves. Autism is a part of a person’s identity. There is no one look that autistics must have to match their identity.

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When you say “you don’t look autistic” it’s not a compliment and here’s why;

 

  • I am autistic. I know my identity but you’re questioning it. That’s incredibly uncomfortable, especially given that this comment is usually presents itself in a situation where the person receiving such comment feels the need the grin and bare in response. We don’t feel as though we can present a defence against the comment.
  • We must sit with that discomfort in a place where we are masking for extended periods of time until we can process it comfortably.
  • That comment reminds us of our ability to mask despite not wanting to have to mask to begin with.
  • It can be divisive between those who can mask well enough to get the comment and those who can’t when we just want to be a united community.
  • It reinforces a harmful stereotype. Need I say more?
  • It’s a concept that simply does not exist. It’s a misconstrued concept of how you think autism should “look” as compared to the educated knowledge that no two autistics are the same therefore you can’t have any one image to project.

 

Please stop using this harmful language and be an inclusive ally.

 

I am autistic therefore I look like I’m autistic even if it doesn’t fit your stereotype image. Just like I look like a Caucasian without looking like every other Caucasian.

Autism Acceptance Day 2020 – Unmasking

Last April, during Autism Acceptance Month, I told the world I’m autistic and proud. (You can click here to see the original post) That pride stands strong. However, I also said I would do my best to quit masking and that’s been harder than I imagined.

 

When you’ve been masking, without even knowing what masking is, for 20 years it’s hard to just stop. It’s engrained in your day to day systems. While yes, in my last post I mentioned that you can make mistakes while trying to mask it’s still a thing that, at some point, you start to automatically do when faced with situations that you believe involve the need for masking, which is most situations.

 

My masking stops me from stimming when anybody, even my own mum, is in the room, it stops me from talking about my special interests especially to the degree they interest me, it makes me stay quiet when I hear an offensive joke/comment because I can’t go against what society says, it makes me agree with whatever is suggested because I can’t be trusted making decisions as I don’t want to disrupt normality or upset anybody and I don’t make the jokes I want to because I worry only I will find it funny. I mask my emotions in various situations because my emotions aren’t the ones that matter here.

 

All of these places others above myself and prioritises them and their social comfort above my own. It minimises myself as a person and belittles me. Masking creates a new identity that isn’t me.

Those are ideals that are hard to break. Convincing myself I’m worth the same amount of space as neurotypicals (NTs) is a slow process for me and my low self-esteem. Identifying what parts of me come from masking and what parts are genuinely me is a complicated process and projecting my newfound self is possibly the scariest part. I truly do have to dig through all the “socially acceptable” rubbish to find the me I’ve hidden and learn who they are.

 

At times it’s all a thrilling process, getting to learn who I am means exploring new things or things I once had interest in but had to leave behind. I get to unapologetically recreate myself into the person I want to be and feel most comfortable as.

 

At times it’s incredibly uncomfortable. I have to face the feelings I’ve suppressed, and the feelings masking has embedded in my heart. I have to deal with the fact I’ve lost time that I could’ve spent being myself and helping others feel better about themselves instead of hiding like I did. I worry about my loved ones not loving the “new” me. I’m becoming unapologetically myself while still having to be aware that masking is a safety mechanism that protects me from the abuse of ableds and NTs so I realise I can still never be myself at all times.

 

I’m creating a new computer system but have to keep the firewall up.

 

The real Renee wants to focus on the small joys this is bringing me so far though. Therefore, I find it worth continuing to unmask. It’s just going to take more time and work than expected.

Purple Day 2020

A lot of events around the world have been cancelled or postponed and for good reason, but I want to talk about why I’m sad that I’m not spending today at South Bank.

While anybody who knows me knows I love the colour purple, Purple Day is more than just a colour. Don’t get me wrong, I love that one day a year it’s acceptable to wear purple excessively but that’s not the priority.

The priority is the people. We celebrate the workers all around the world who spend their time making our lives easier, the activists who go out of their way to fight for our rights, the people with epilepsy surviving and their support systems.

Purple Day is an important event every year where I, somebody who has spent almost a decade feeling isolated and ‘othered’ by this disorder, can feel like I’m one with others. I get to celebrate in an environment created for me, free from judgement and discrimination. I celebrate somewhere I can unapologetically be myself surrounded by people who understand me, somewhere we’re all equal and worthy and don’t have to fight to be seen as such. It’s a safe space where this isolated and othered person can have fun with others just like them. A safe space I wish I had sooner to combat all the negatives I’ve faced during my journey with epilepsy.

Part of Purple Day is also about educating those who may not be as aware about epilepsy as they should be. This is something I work hard at all year every year however this year I had to listen to my body’s needs and change my approach, so it was important for me to get to still enjoy fun times and feel valid with my community.

This year is my first Purple Day as part of the official Purple Day organisation’s ambassadors, so I wanted to commemorate it with a big, fantastic, purple, day.

Hopefully, in case you didn’t know before, you realise now that Purple Day is more than just a colour, it’s a community.

FND Day 2020

Today is the first time I’m celebrating FND Day and with Purple Day just hours away, it’s a busy week for me to say the least.

 

Today I’m explaining more about FND as even close friends know that I have it but have no idea what that means for me.

 

Let’s start with the basic, FND stands for Functional Neurological Disorder.

FND can be caused by psychological triggers, physical triggers and a mix of both. In my case it’s a mix of both. It’s important to understand all possible types of triggers as this can affect the type of treatment needed.

 

As FND has a long list of symptoms, with each case experiencing different symptoms in a way that’s unique to them and presents in both physical and mental manners it’s important to get the adequate treatment.

For example, I experience extreme anxiety that’s hard to treat but we try with neurpsychology with medication from my neuropsychiatrist.

I also experienced functional limb weakness for 4 consecutive months in 2019 and now need physical rehabilitation to help me walk again. Psychology obviously would not help with this symptomatic problem.

 

It must be understood that FND symptoms can’t be controlled. If it could I’d rather be in dance class or ice skating with my best friend instead of learning how to walk again by myself. I also would never make myself have a non-epileptic seizure, where I can hear and feel everything, as that only adds to my psychological trauma and triggers.

 

For some FND is treated adequately and soon after it’s triggered which can lead them to only having a temporary disability. Unfortunately, not everybody is this lucky.

Sometimes it really is just about luck, some people don’t respond to treatment as well as others, but a lot of the time it comes down to the fact that people can’t be diagnosed soon after being triggered as doctors aren’t as aware of FND as we’d like. Once being diagnosed, people with FND also must face doctors who aren’t well educated but don’t wish to admit it. Some doctors simply don’t know what they’re doing with FND treatment and even try to treat all symptoms with psychological options even if the symptoms presenting have nothing to do with the psyche.

This means some people, such as me, are left with a permanent disability.

 

Despite the fluctuation in how long the disability lasts and the variation in who ends up with a permanent disability, FND is definitively a legitimate disability.

 

However, professionals seem to be behind on the times, yet again.

 

According to the classification guidelines of the International Olympic Committee for para sports, functional impairments are not a recognised/eligible impairment.

This stops talented, authentically disabled, athletes from following their goals.

Something needs to be altered there and I hope when the time comes, I have your support in the fight for change.

 

In the meantime, here are some ways to help those with FND or make things more accessible for us;

  • Make sure everywhere is accessible to mobility aid
  • Keep in mind that for some, some of their symptoms can be triggered by sensory input so consider the environment you’re creating
  • Our symptoms can include or cause fatigue so please be patient with us and please be understanding if we need to alter or cancel plans because of it
  • Be patient with us during dissociative attacks, memory or concentration struggles, speech troubles
  • If we have pain problems caused by our FND (CRPS for example) please be considerate of what could cause us more pain and what our pain limits us from doing
  • No matter how funny you think it is, don’t laugh at the hick-ups our symptoms cause until it has been clearly established whether the person with FND is comfortable with that. (For example, I don’t mind laughing at my speech mishaps in most instances but for some it’s a major insecurity)

 

I hope you learnt something new and now better understand the condition that’s by my side every day this FND Day!

Striving to Achieve

There’s a giant part of me that people either don’t know exists or they don’t understand how it exists within me. That part that coexists with my illnesses and disabilities is my athleticism. That’s right, I’m sick and disabled but I’m also an athlete.

 

Before everything went downhill I was on the Australian Development Squad for Taekwon-Do with big plans for my future.

I was so focused on representing my country and doing my best to win gold in Spain first before moving onto more. But there are people I consider best friends who have never known that I held such potential at some point in my life.

 

Osgood Schlatter Disease (OSD) in my right leg was the first bump in the road to Spain. At first it seemed like a small blip until it came to a point where I had to learn to walk again. I engaged in intense physiotherapy regime, learned how to walk, learned how to live with my knees disease and gained my strength back to be able to return to the sport that owns my heart.

 

Then epilepsy reared its ugly head into the situation along with some symptoms that were undiagnosed at the time but we now know are from Functional Neurological Disorder (FND). Some say that given the high contact level of the sport and the potential knocks to the head meant I had to give up the sport then and there. That wasn’t going to happen on my watch. Protective headgear wasn’t a requirement at the time but it became a personal requirement for me. I trained harderthan my team mates to be able to dodge head attacks specifically. I was already quick on my feet and fast at calculating somebody else’s moves and my countermoves but I worked hard at perfecting the craft so I could truly protect myself. I learned to listen to my body better than anybody else on my team, I had to listen and learn what my body could and couldn’t handle so that I could continue at the sport I adored while staying safe. 

I trained at least twice as hard as my team mates, learnt things they didn’t bother with, just to keep up and keep safe.

Chronic Regional Pain Syndrome (CRPS) made multiple appearances and took me out of the game on many occasions but I always came back. I worked my butt off in intense physical therapy regimes to get to where I wanted to get to. I’d go into remission just to fall back into its evil clutches and have to learn to walk again while my team mates progressed in their learnings and competing. I think this part has been the biggest hurdle mentally. This time I wasn’t working twice as hard to keep up, I was working three times as hard to get back to where I was at. By this point I had been removed from the team with my spot on the team reserved should I ever be able to make it back. Most people would’ve given up at this point and I don’t blame them, I’d be lying if I said I’d never been tempted to give up, but I wasn’t ready to give up at any CRPS hurdle I faced. I currently face the arguably biggest CRPS hurdle yet and you can ask my Sabomnim (instructor) I am still determined to catch up, be the best Jeja(student) and make it onto the national team again. Even as I can’t currently physically participate in classes I still play a big role in keeping my fellow jeja’s on their feet because I spend my extra time studying theory and challenge them to keep up with me. I also have the most competition experience and get to share that with them and push them to do better. I’m forever grateful that I’ve been able to surround myself with wonderful Sabomnimand fellow Jeja who give me these opportunities that keep me engaged and full of determination.

 

I also dance at the most welcoming and understanding studio that I’m also thankful for. Thanks to FND I currently need to learn how to walk and use my left leg again. I’m also still dealing with the aforementioned mess of CRPS. I’ve already missed so much recently but the studio owner/instructor and my dance family are so supportive and remind me to focus on overcoming this hurdle so that I can dance again. They know I’ll make it back to them and don’t rush me which is the best daily reminder I could possibly receive, especially the reminder to not rush myself. In dance I still have to apply a lot of what I’ve learnt throughout the years in regards to my OSD, epilepsy, asthma, FND and CRPS. It’s not an easy sport for anybody but my body has made it harder and thankfully my dance family understand that. They know as much as I do that I’ll probably be back in the studio slightly too early before I’m supposed to be back but I’ll be back and fighting to do my best when the time is ready for me and we all know it.

It’s not easy and I still have to do things differently or pay different attention to my body but I’m still there.

 

The point here is this is shocking news to a lot when it shouldn’t be.

In an era where events like “The Paralympics” exist and are gaining more attention we still expect people to give up all athleticism the second they get sick or gain a disability. The abled society expects us to just give up even when we don’t have to. Some people are in situations where they can’t keep going on with their sporting ventures or they make the decision to put it aside but there are still people that can keep going they just have to do things differently.

 

We also automatically treat the people who continue with their sporting endeavours as irresponsible as though they don’t go above and beyond to keep their bodies safe. The other side of that coin is treating those who don’t have athletic projects as not caring for their body because we believe that yoga fixes everything.

 

We need to listen to people from all unique walks of life and respect that they know what their body can handle, that they know how to adjust things to suit their needs. We need to create a safe environment for ill and disabled people to discuss exercising, or not exercising, in a way that leaves them feeling connected, listened to and respected. The current style of discussion leaves people not wanting to talk about it. There will be people who are shocked but proud that I have persisted and people who believe I’m endangering myself when they know nothing about the extra precautions I take to protect my body while still enjoying what I love to do. Some will simply say I’m faking all of my illnesses and disabilities if I’m able to do what I do. This is not the environment we deserve to be stuck in. I work my butt off to keep up with my peers and I deserve to be able to talk freely about that without judgment and accusations. I should be able to talk about it the way any other athlete talks about their experiences; the highs, the lows and everything in between.

Flame Inside

You can’t make fire feel afraid

But I am afraid for you

As I am filled with embers

You can’t drown out

No matter how much you try to fill me with doubt.

Your words are like gusts of wind

Like gushing gasoline

You do not drown me out

You wind me up

Reminding me of why I have a fire within me.

I know too much of this world

Its’ nasty people

And their horrible words

Trying to mute mine

Trying to take my existence

And drown me out.

But like a fire on a cold winters night

You can still hear

Especially with a keen ear

The fire crackle and pop

With all that I have to say

About what is right

And with all my might

This fire will not stop.

Dirty Word

Disabled. A word that many abled bodied and abled minded people see as a dirty word. A word that disabled people are taught to be ashamed to use. A word that takes too many disabled people on one hell of a journey at varying times in their lives.

Personally I went on a journey at 13 that is still ongoing. The way abled people had handled the word made me feel great shame that I still struggle with at times.

Disabled simply means “(of a person) having a physical or mental condition that limits their movements, senses or activities.” It simply means I operate differently in a way that limits certain abilities of mine compared to the average abled person.

Why should that bring me shame, why should I feel dirty for using a word that was created to describe part of my identity, a word that wasn’t created to spread shame like slurs.

Yet somehow abled people have taken a word that should be safe to use and added so much shame to it that people, both abled and disabled, use the word “disabled” less than actual slurs.

Abled people will tell disabled people that nobody can use the word disabled with so much gusto that they often sound angry and/or aggressive but when a disabled person kindly asks the same people to not call them slurs like “cripple” because it makes them uncomfortable and it has negative history (unlike the history of the word disabled until people brought shame to it) suddenly it’s the end of the word and they get offended, angry, aggressive, argumentative and refuse to listen.

A common problem, between abled and disabled people, that only forces this problem to persist is abled people not listening to the needs, concerns and feelings of disabled. If they listened more they’d know of our journeys we’re forced to go on because of them.

With that being said, let me share some of my journey so that those who are willing to listen can learn that “disabled” isn’t a dirty word, just like I had to learn.

When I was just 13, young, vulnerable, impressionable, I was spending my days in a hospital surrounded by abled and often ableist, even if they didn’t realise it, doctors and nurses. I had grown up in an ableist society but the doctors and nurses I spent so much time with, in the scariest and most vulnerable time in my life, were supposed to take care of me and help me get better but they poisoned me with their ableist mindsets. I wasn’t allowed to use the big dirty “D” word, you don’t want to be called that word, if somebody used that word referring to me it meant I was less than human.

Heck when I tried to discuss my autism a doctor told me to forget about it and that I surely don’t want that label on my record, “Once it’s on your record it’s there forever”. More shame flowed into my soul like water rushing down a creek.

I was quite literally stuck in an environment that bred shame, insecurities and self internalised ableism.

Epilepsy was “the E word” and I freaked whenever somebody said the full word around me. CRPS was “the C word”, Autism was “the A word” and so on. God forbid somebody use the “disability” word in my presence!

This lead to dangerous mindset and behaviours. Everyday I tried my best to prove I wasn’t defined by the dirty word by pushing my body past it’s limits and keeping my mind in a state of denial. This is such a dangerous habit that I’m still fighting everyday to break. The whole time the people who were supposed to be helping and protecting me just encouraged me to take part in behaviours that harmed me physically and mentally.

All of this because apparently having limitations due to a condition I happen to have is extremely shameful and the end of the world.

I’ll tell you what’s actually the end of a world.

Pushing myself to prove I’m not disabled so I’m burnt out and fatigued which triggers more seizures which leaves me victim to SUDEP.

Feeling so ashamed of who I am that I fall into deep and severe depression and I take my life.

There are so many different scenarios where people end up seriously injured or worse due to how we treat an innocent word that shouldn’t be treated the way it unfortunately is and in turn the way we treat disabled people because this ridiculous amount of shame abled society has created about what should be a harmless descriptive word.

Unfortunately the disabled community have quite the battle on their hands, as always, to make the abled society listen to our needs. And this isn’t just a need to feel comfortable, a need to feel listened to or a need to feel respected. This is about a need for safety. As I already said, treating disabled as a dirty word is taking disabled lives that matter just as much as any other life. One thing this isn’t about is abled comfort regarding the topic.

I am disabled! I don’t care who’s uncomfortable by me saying that and embracing the fact. The fact of the matter is I’m disabled and my life has only improved since ignoring the ridiculous notions of an ableist society and embracing part of my identity.

I am Renée, I love music and I am disabled.

Since accepting me for me as I am I’ve started living a safer and more enjoyable life. I don’t dangerously push my body to do things it’s physically incapable of doing as much (it’s a journey to break such habits that were engraved into my mind). I do find myself enjoying life in a way I couldn’t when I was pushing myself to be something I’m not. I now get to enjoy things I either can still do or adjust to be doable for me in the way I need. I also get to be apart of the wonderful disability community who are so supportive of me and have my back.

All I ask from you now is that you reconsider how you look at the word “disability” and you treat the word and those who use it. Please also consider your use of actual slurs and how you react to disabled people pointing out your use of certain words that make us uncomfortable or offended.