Celebrating Cerebral Palsy

Earlier this week, on October 6th, it was World Cerebral Palsy Day. By the time that I realised, it was too late to make any kind of meaningful statement, though I’m proud of myself for taking a moment now. In truth, even my past self from just a year ago would have been shocked that I’m finding something to celebrate. Yet, here I am.

I was born in April of 1997, a whole three months earlier than expected, at twenty-seven weeks. Back then, medical interventions were not what they are now, so my survival was a miracle in itself. I mean, my nurses at the Trevor Mann Baby Unit had a cake when I reached a kilo in weight. One single kilo. Whenever my parents left the hospital after visiting me, I would generally stop breathing. These days, we make jokes that I did this just to be dramatic and get their attention, even though the reality would have definitely been much scarier for them. Eventually, the doctors got used to this routine and discovered that they could bring me back by simply touching my feet, which are still incredibly ticklish now. The idea makes me smile, for some reason. Still, once everything was slightly more stable, attention turned to uncovering how my development might be affected by being born so prematurely. This is where the story gets interesting, I suppose.

It was initially hoped that I would just reach certain milestones a little later than everyone else, especially since my twin brother was ultimately healthy. However, after it became apparent that my situation would be somewhat more complex, scans were able to confirm that I had cysts on my brain. Fun fact: I have only relatively recently discovered that this means parts of my brain are actually now missing. How oddly cool is that? But even getting a diagnosis of Cerebral Palsy doesn’t immediately provide any clarity. There are a few different types, which all present themselves differently in each individual. No person with this disability has exactly the same experience, which is perhaps the most isolating part about it. So, naturally, my parents were hit with all of the worst-case scenarios. They were told that I wouldn’t be able to walk, talk, feed myself or even sit up independently.

If you’re reading this, you know that I have already achieved so much more than anybody first expected of me. My mum had to fight for me to be given a chance in mainstream education, which is maybe why my degree is so precious. Something about it feels very deeply empowering. With that said, I have sometimes felt like the living embodiment of a juxtaposition: so much ability, yet still so dependent. There are so many of the mundane daily tasks that require being able to walk, or at least stand, in order to do them without assistance from anyone else. Whilst I can feed myself, I still find it difficult to cut meals up into manageable bites, despite my best efforts. There is no denying that it can be a frustrating journey.

A screenshot of a Tweet by Eddie Ndopu, which reads: “Ableism doesn’t just dehumanize disabled people, it strips non-disabled people of their own humanity. We’re all harmed by the belief that there is just one desirable way of being human. Disabled people show us more beautiful, more expansive, more honest ways of being human.”
I am working on celebrating the more beautiful, expansive and honest version of this human experience today.

Interestingly, this piece was (at least partly) inspired by mum finding an old copy of HELLO! magazine, which a Young Danielle featured in. Fiona Bruce came to visit Chailey Heritage, where I spent a lot of time growing up, mostly to attend various appointments. As an organisation, they specialise in Cerebral Palsy and other neurological conditions, so she took pictures with some of the children there. In the accompanying interview, she spoke about how she had worried over the possibility of having a disabled child throughout her second pregnancy, revealing that she hadn’t known how she would cope. Although it never happened, she mentioned how spending the day with these disabled children and their families (myself included) had given her cause to reflect upon her comparatively “selfish existence”. I don’t know why, but something about this particular quote annoyed me, even when I tried to think about it from the perspective of society in 2002. See, the implication is that disabled children are burdens. Maybe I could forgive this narrative, except for the fact that nothing has changed. Opinions are still the same.

I used to hate my body and all that it represents. Before you say it, this was not in the same way that everyone dislikes certain aspects of their body. It was gut-wrenching and visceral. Physically painful, at times, too. But now, I have accepted it, in the most beautiful way. Although it’s not the ideal for anyone, it’s my normal. Having Quadriplegic Cerebral Palsy has shaped a lot about who I am, both consciously and unconsciously. You know what? For once, I actually like that person. I think she’s pretty cool.

Owen, loving you is the greatest honour of my life. I am simply never going to shut up about how proud I am. xxx

Surviving Social Situations as a Disabled Person

Throughout the whole of my childhood, I was intensely bullied. To a certain extent, this has continued within parts of adulthood, too. I might have briefly mentioned that here before, but it’s something that I wanted to discuss further. See, I don’t find it especially easy to talk about, since the emotional scars still affect me today. This feels important to be truthful about, in the knowledge that my peers have probably never reflected upon their own behaviour before, nor considered that their attitudes were deeply problematic. Get ready for an education, bitches.

If I think about it for too long, I’ll probably have a panic attack. Still, there is one particular memory that I have never been able to shake, which occurred during a time when things were particularly difficult at secondary school. My mum had arranged a meeting to create an action plan with the relevant staff, in order to try and protect me from all that had been happening. However, she was simply told that it would be better if I left the mainstream education system, instead moving to somewhere with other people like me. In truth, I did consider this as an option for a while, which just makes me impossibly angry now. Of course, the implication is that I’m doing something wrong by daring to exist within a space where I am so obviously different. Almost as if it’s something to both expect and learn to live with. I mean, I’d prefer it if everyone else could just stop being horrible, but okay.

For several years, I had a wheelchair with a switch at the back, which would turn the controls to manual. On more than one occasion, some lovely people did this and literally just left me sitting in the middle of the road. That’s a whole new level of powerlessness, you know? It hurts me to know that they found it so hilarious. Within all of this, it felt like I was running out of options, so I started offering people money in exchange for their friendship. Looking back, I know that this was not real or healthy, but I was so desperate to feel safe. I thought that this would finally turn me into a cool person to hang out with, though it did nothing but ensure that my vulnerability was fully exploited. Anything to survive, I guess.

A screenshot of a Tweet by Hannah Diviney, which reads: “Being a people pleaser when you're disabled is actually not a personality trait but a survival mechanism. We unconsciously absorb that we must do everything we can not to rock the boat because that just makes it awkward & uncomfortable when we need things. It's protection.”
Hannah is so wise and her words are always so validating. It is an honour to tell people that we’re friends — in the truest sense of the word.

Thankfully, I have finally found my people. It has only taken me twenty-three whole years, whilst also embracing the idea that internet friends are real friends. Finding it hard to platonically connect with people in the area does not make me a loser — it’s actually sort of beautiful. I still want everyone to like me, of course. I mean, if they don’t like me, then I find it very easy to become convinced that I’m just a terrible person. With that said, I am learning that liking yourself is a much more liberating goal. Reminder: if my disability makes you uncomfortable, that’s really not my problem. Have fun watching me live my best life all the same.

To the few people that were consistently and unapologetically kind to me back in those days, I appreciate you. You deserve nothing but happiness. To Australian Hannah, you are going to change the world and I can’t wait to see it. To my favourite burrito, Owen, thank-you for bringing such an incredible kaleidoscope of colour into my life. xxx

PS: if you bullied me, I do not forgive you. But I am healing. That journey is not defined by you anymore, no offence.

Learning to Love My Disabled Identity

For so many years, I thought that the key to survival was to run away from my disability, even if only emotionally. I thought that being known as the disabled girl would define my whole sense of self, ensuring that nobody cared about anything else. However, actively pretending that it doesn’t exist only served to send me into a spiral of self-hatred. Once this had begun, it was impossible to escape from and has constantly haunted the edges of my brain for almost a decade, if not longer. However, things have finally started to change over the past couple of days. It is like a dark fog has been lifted, simply from refusing to hide anymore and believing that I am capable of better.

Firstly, I learned that this blog has been viewed over one thousand times already. My weird little blog. If we know each other well enough to be connected on social media, then you probably already know that part. Truthfully, my head is still spinning. It is so difficult to comprehend how so many people care about reading my story, however briefly. My voice has always just felt pretty invisible, you know? It has often been like screaming into the void with nobody to hear. I can’t remember a time where I didn’t feel like a disappointing disabled person because I had nothing especially remarkable to offer the world. However, hitting this milestone proves my brain wrong. It makes me feel like the possibilities are endless, although that probably won’t last long. Still, maybe my existence doesn’t have to be entirely mundane after all. For example: generally, I hate talking about my career prospects because writing has always felt like home for me, but I have always worried that I’m not good enough for it to be achievable. Now, for the first time, there is a glimmer of hope. For the first time ever, I am actually proud of myself. Can you believe it?! If you are reading this, you have collectively changed my life and I’m never going to be able to repay you.

Then, I posted on a disability support group and requested friends in a similar situation. I have never done anything like that before because the idea of being so vulnerable makes me feel physically sick, but I was so horribly alone and sad. Being young and disabled can be horribly lonely and sad — that’s the unfortunate reality. Frankly, I had expected to be completely ignored. At this point in time, it really didn’t feel like I mattered very much at all. Instead, over two-hundred people responded. Over two-hundred wonderful and warm human beings from around the world shared their stories with me, opening their hearts up to a friendship. I still haven’t been able to message all of them properly in the way that I would like, simply because there are not enough hours in the day. Even so, it has felt like I have been floating on a happy little cloud ever since. Until this moment, I had never before been embraced so tightly for my differences. Collectively, these people have saved me in ways that I’ll never fully be able to articulate. I’m still not completely convinced that I deserve each and every one of their beautifully kind gestures, but I’m determined to earn them. Their unconditional acceptance has allowed me to begin extending myself the same courtesy and it so deeply liberating. Being disabled can be a beautiful thing, too.

Also today, I received my first vaccine against COVID-19. I haven’t left the house much at all in the past year, so I was really very anxious about this whole process, but it all went smoothly. Since the pandemic first began, I have wanted to crawl outside of my own skin and be someone else. Anyone else. I deeply resented having to take so many extra steps in order to simply stay alive, so this feels like the beginning of brighter days. As a side note: my favourite mental health YouTuber has now acknowledged my existence on Twitter twice, so it feels like I have made it. Kidding, but still.

A woman (Danielle, the author of this blog) is smiling in the car and wearing a seatbelt. She is wearing glasses, a red jacket and black vest. She has messy hair but she doesn’t care.
This bitch got vaccinated: a picture taken after my appointment.

In short, I am not completely comfortable as a disabled young woman yet. I want to feel attractive and confident, so there is more work to be done. But representation is important to that process, so I’m going to continue to write until the world has changed for the better. I might even start a YouTube channel. Maybe. If I can get over my fear of the camera. But probably not. If you want to help me on this journey, please sign my gorgeous friend’s petition for a film with a disabled Disney princess here and don’t watch Sia’s new film ever. Give disabled actors the roles of disabled characters and don’t be a dick xoxo

PS: an extra special shout-out to my pals Imogen, Sophie, Céline and Jasmine. You will have a piece of my heart forever.

The Trauma of Being Disabled

Unfortunately, being disabled is often associated with some level of trauma, even if only through the way that it has been perceived by society. On a personal level, research has shown that adults with Cerebral Palsy are statistically more likely to be diagnosed with mental health problems such as depression and anxiety than those without.

When I was fourteen, one of my doctors randomly asked about my social life. I had been getting ready to leave the appointment and the question caught me completely off-guard. I couldn’t understand why that was relevant in any way, so tried to lie and tell her that I was generally pretty popular. In reality, I was decidedly unpopular and very depressed about my whole situation, though I didn’t have the language to express that back then. Just a few weeks before, I had started seeing the school counsellor, but left after the first session and never went back. Still today, I remember her looking at me enter the room and saying: “well, I can already tell why you’re here”. The whole interaction was fairly damaging — it felt like the only thing that anyone ever saw when looking at me, you know? So, when this doctor asked about my social life, my mum wasted no time in exposing the lie and asking for help. They promised to refer me to a therapist that specialised in working with disabled young people, but I never heard anything. It has been almost nine years and there was never any follow-up.

When I was about twenty, I cried in front of my GP about how bad my body image was (I had been there for an entirely different reason). Afterwards, we both just pretended that it had never happened. In that moment, the only advice that she could give me was to “focus on self-care and personal grooming”.

As I reflect upon these two examples of pivotal moments in my life, it’s difficult for me to even place responsibility or blame onto these professionals in any way. See, the key problem is that nobody truly knows how to help or understand. They can’t really be expected to, since the circumstances are complex beyond anybody’s imagination, so it’s probably not something that they are faced with on a regular basis. However, what it also means is that I’m left unable to truly understand myself, either.

Last night, I had a lengthy conversation with my good friend, Sonia. She is very wise and brilliant. She reminded me of how illness and being constantly surrounded by ignorance (however unintentional) causes your brain to be shaped differently to everyone else around you. You know, studying in a mainstream school when there are so many voices insisting that you don’t belong in that space kind of forces you to become mature very quickly, for example. It is almost like a protective barrier, which only creates a lifetime of difference, since it’s impossible for anyone else to be on exactly the same wavelength without experiencing those things. This is day one of my journey towards accepting and acknowledging that I have been through some heavy stuff, but that things do have the capacity to be better. To anyone reading this, even if we are not in touch, I want to thank you for coming along on the ride with me.

Reminder to self: I do not have to be defined by other people’s shitty treatment of me. It is possible to grow past that and move forward. I am determined to make sure that these experiences mean something.

My next post is going to be about disability and identity. I have some feelings about that myself, but it’d be cool to get some other perspectives, too! If you are disabled or chronically ill and want to have a conversation about it, send me a message. Let’s change the world. xxx

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The Shame of Being a Disabled Person

Since childhood, I have carried around a sense of shame about being disabled. Alongside that, I have also been disappointed in myself for having those feelings. It’s impossible to watch the Paralympics (with all of these disabled athletes living their best lives) and not feel like I should be doing more. It’s impossible not to feel like I should be happier and more comfortable with my apparent adversity. All of this was true, until I had a recent realisation:

The pressure to feel better is directly related to allowing others to be more comfortable — to create a space where they don’t perceive me to be living a life that is wasted. Of course, this type of attitude is one that I wish could be removed from society completely, but there is some truth to it. Sometimes, pretending otherwise can be tiring, especially when it only serves to allow people not to feel so awkward when staring at me in the street. Like, it’s apparent from my previous posts here that there are some aspects of my life that have been halted or made more difficult by disability, but happiness is not made nonexistent by such a reality. It is possible to find a weird sense of harmony between the two, which I wish could be more widely understood.

For example: in about February of this year, before the pandemic hit in earnest, I went to Starbucks with my cousin and family. We were happily gossiping about the trails and tribulations of our dating lives at the time, when a stranger approached us and handed me a leaflet. He said that he couldn’t imagine how unbearable my circumstances must be, but that he was willing to help me find “a life without wheels”, through the power of prayer. I’m a loser and hate confrontation, so I politely thanked him and headed into the nearest bathroom to cry. At the time, I had been really struggling with my body image and generally didn’t feel great about myself, so the whole thing was very bad timing. For me, perhaps the saddest part of this interaction was that I’d been having a genuinely nice day, until that moment. I had been laughing in the seconds before he spoke to me, yet he was entirely focused on highlighting the glaringly obvious negativities.

When drafting this post, I had initially wrote: to be honest, I wish that he had been right. I mean, imagine if fixing everything really was that simple. But let’s unpack that idea, in hopes of demonstrating how damaging these well-meaning gestures can be. Firstly, there is no cure for Cerebral Palsy, so taking away my wheelchair would truly be no life at all, even when I do struggle to accept my dependence on it. Secondly, isn’t it heartbreaking that one conversation can leave me feeling so broken? Especially when it probably wasn’t at all significant to the other party.

Moving forward, I will strive to live without shame. Your misplaced guilt and pity is not my problem, so I can promise that I’ll be fine without your prayers. This body is mine, for better or worse. Sometimes, that can be a beautiful thing. Please allow me to try and outweigh the bad with the good throughout 2021. Already, this blog has received more overwhelming love and support than I ever could have hoped for. It has brought a certain strength to my friendships, both old and new. Maybe — just maybe — I’ll never hide in a bathroom again. Let that be my New Year’s Resolution, okay? One blog post at a time. xxx

PS: as promised, here’s a shoutout to my brother, Jack. He wants me to remind everyone that he is, in fact, Carer of the Year. Not really, but still.

If you have a question that you have always felt weird about asking directly, hit me up on CuriousCat! Yay for anonymity. I’m all about that education and will do a post on it in January, if there’s anything. https://curiouscat.qa/Disabled_Danielle97