Reflecting on my Disabled Childhood

Today marks nine years since I had surgery on my left hip, pinning it into place. At the same time, I also had at least one other minor procedure, to loosen the tightness in my hamstrings. In truth, my memory of this time is a little hazy, though I can piece together flashes. Mostly about the pain and throwing up when I was given morphine. I have tried really hard to redirect my brain’s focus over the years, to think about something else whenever June approaches, although this has so far been impossible. The two (incredibly neat) scars on my legs are a daily reminder of how different everything would have been if I was born into another body, you know? Often, this is also visually represented to me through the lives of my non-disabled siblings, too. In a first draft of this post, the next lines were: I find myself craving an adult experience that isn’t dictated by my dependence on those around me, even now. I can imagine that it must be so wildly liberating, despite the fact that everyone else gets to make these choices without a second thought. However, whilst I might never be completely comfortable with the permanence of my situation, it’s important to recognise that different is not always synonymous with better. Things have been intense since this fateful day in 2012, sure, but I’m not going to be defined by my experiences. For the first time in probably forever, I am genuinely and consistently happy. I am slowly learning to be proud of my disability. The heaviness that used to sit on my chest has largely disappeared. I feel lighter. I have come so very far, which is why it’s necessary to look back on occasions like this one.

I wasn’t a nice person when I was fifteen — or really any time before that. Not really. It would be so easy to blame the system for its lack of support, but I do have to hold myself accountable. For a long time, even from a fairly young age, I was more mentally unwell than I’d like to admit. If the help had been offered to me, I doubt very much that I would have accepted it. It’s so hard to explain what it’s like to give up on yourself, without really trying in the first place. I couldn’t be bothered with any of it, I guess. I was convinced that my life would amount to nothing, no matter what I did. I was angry all of the time and I put my family through a lot, which I plan to write about in more detail next month. Some of the memories still make me feel physically sick, though.

I hated my time in hospital. More than that, I have some heavy trauma associated with my recovery, which isn’t something that I’ll ever go into detail about here. When this unfolded, I decided that I had to protect the softness of my heart and be unapologetically good, despite how cruel life can sometimes be. I am so proud of my adult self, truly. I’m always trying to make other people’s lives brighter, which is something that I am relatively successful at. I think. You tell me.

Still, with that said, I hate my legs and it would be a lie to pretend otherwise. I have a new physiotherapist these days and when we first met, she asked if she could take my shoes and socks off. I said, “you can if you want, but my feet are really ugly”. She replied, “I don’t think that anybody has pretty feet, Danielle”. I could have cried on the spot. Last week, she asked me to wear shorts, for practical reasons. I cried about this when I put them on. Like, I cried in the most ugly way that my mum later came home with a pair of jogging bottoms to stop me from feeling gross about leaving the house. It’s a process and we can only do our best with these things.

A screenshot of a Tweet by maya circe, which reads “i think we need to move away from the idea within body positivity/neutrality circles that bodies are worthy of love and respect bc they “work.” disabled bodies dont always “work.” disabled bodies are still worthy of love and respect, no matter if they “work” or not”
I’m leaving this reminder here for myself and anyone else who’s in need of it.

So, to recap: I survived! I am happier than I have ever been. I wish that I could tell my younger self. Not every day is perfect, but I am better able to handle the waves without drowning. That’s something worth celebrating.

Owen, you used to live inside of my dreams before we met, I’m sure. I’m not scared of the future anymore, because you’re here. I love you more with each day that passes, which is both clichéd yet true, so I don’t care. xxx

Accepting Help as a Disabled Person

For me, having to accept some level of help from other people with my intimate care is perhaps the worst part of this human experience, especially because I will often feel like it’s some burdensome obligation. I am very deeply aware that this isn’t how adulthood is supposed to look like, you know? With that said, I have been trying so hard recently to become more independent, very stubbornly deciding that I will simply refuse to let my disability prevent me from fully living life. For the most part, I had been succeeding, too. I mean, just a few weeks ago, I was able to cut up one of my dinners without assistance from anyone else. Not very well or anything, but it still felt like reaching a big milestone. Every day was getting better, until I started to believe that the possibilities were endless, with the right amount of work.

Over the past week or so, however, my body has been giving up on me a lot. This isn’t something that I’ll be further discussing publicly right now, simply because it wouldn’t be good for my mental stability, though it has been heartbreaking beyond words. Learning to manage these new expectations has been far from easy — and my brain has been consumed by how cruel it feels. Disabled and chronically ill people are never allowed to get too comfortable with progress in their health. It is impossible to tell how long it will last, so any glimmer of hope can often be devastating. For the record: this is something that we are allowed to feel sad about. That doesn’t give everyone else the right to ignore the good parts of our lives, as if they don’t exist at all.

A screenshot of a Tweet by Ru (she/they), which reads: “the sheer frustration and disappointment at your body when you want to do something but physically can’t because of pain/fatigue is something that can never be adequately explained to a non-disabled person”
It is very easy to feel trapped. I’m not going to pretend otherwise. I’m not always going to have a Good Day.

If it matters at all, I do intend to fight back. I have worked too hard at loving myself to let this ruin my belief that the future can still be bright. But in many ways, that’s not really the point. This fight can be (and is) an exhausting one. It’s not something that I was ready to work with, particularly when things were on such an upwards trajectory. I have every right to take a moment, you know? It can be important to sit with the emotional turmoil on occasion. I will not shy away from talking about the Bad Days in order to make my existence more tolerable for everyone else. Looking back, I’m proud that I can do this now, safely in the knowledge that I’m not defined by these moments. I have never had that before, so I’m absolutely not asking for sympathy. Please, though: I am so happy that the pandemic is largely getting easier and I have even braved visiting a garden centre now(!!!), but let’s not forget that this can be difficult. The world has never been entirely safe for disabled people, but that is especially true in this moment. Let’s take small steps towards better, without forgetting that this can also be associated with a lot of anxiety. Let’s be gentle with each other and not completely abandon virtual interaction. I understand that it is getting tiresome for some, but it’s also a lifeline for others, which I refuse to invalidate. Health is not a guarantee, people.

Owen, you make everything better, always. Thank-you for listening to me cry about it. You are all that is good and I love you more than anything. To my family, thank-you for being on my team at every appointment and offering hugs whenever they’re needed. More than usual lately, I know, but I do appreciate it.

Truly, there needs to be a radical overhaul of support services for disabled young people, which seem to be impossible to find. It would be nice to occasionally feel heard — and it would be nice to find a physiotherapist that isn’t entirely out of their depth when they have me as a patient. I deserve better, but I’m also not the only one.

PS: I look like shit right now, but MAYBE I’ll post a celebratory selfie when things are brighter. My body image issues are not welcome here. xoxo

How to Handle Having a Disabled Child

Recently, someone told me that they wouldn’t publicly celebrate having a disabled child. More than that, they told me that this supposedly joyous event would be tarnished by thoughts of guilt and shame — almost as if it was some kind of personal failing. This conversation has been holding hands with the dark part of my brain ever since, in all honesty. However, it has also brought some empowerment, weirdly enough. I mean, it’s interesting, isn’t it? Despite the fact that I’m a disabled person, it still felt okay to share these feelings with me, perhaps because it’s unfathomable that I wouldn’t resent my existence in the same way that everyone else does. Surprise! I am, in fact, thriving. It’s possible to be happy even when the rest of the world expects otherwise, you know?

This feels like an important message to put across simply because it’s impossible to pretend that it’s an isolated opinion. It runs through the very fabric of our society, often without most people even acknowledging that it’s deeply problematic. Before you say it, I’m not just being dramatic. Throughout my education, there were several moments where I would have to sit and listen as my peers were asked to debate whether or not disabled lives were equal to their own. Some of the responses were, frankly, jarring and left me anxiously picking my fingernails every time.

I would tell myself repeatedly that it’d get better with age and maturity, which I allowed myself to believe until starting university. During one of the first icebreaker social events, someone immediately asked if I was adopted, without doing the same to anyone else. I laugh whenever I think about this, because even if it had been true, it’s still absolutely none of their business. The meaning behind it was clear, though: they couldn’t allow themselves to imagine that my biological parents would want to keep me around, before even knowing anything about me. At the time, I was having many different conversations with members of staff about only managing to build one strong relationship on campus. I was always told “everyone probably feels uncomfortable around you and wants to avoid saying the wrong thing, so they have just decided to avoid saying anything at all”. Not for the first time, I was made to feel like all of this stuff was my fault and not something that could be fixed by anyone else.

Together, all of this becomes an attack on the very essence of my being. Writing is the only way that I know how to fight back in these situations, so here we are, once again.

A screenshot of a Tweet by Jenn M. Jackson, which reads: "Nothing I accept about myself can be used against me to diminish me." - Audre Lorde”
I will not be diminished. The lives of disabled children can be (and are) filled with joy. That should never be something that any parent regrets.

I am eternally grateful to my parents for choosing me every day, even when it meant making sacrifices that wouldn’t otherwise have been expected of them, especially during a time where there was significantly less support available. Fun fact: Cerebral Palsy is widely considered to be a paediatric condition. I’m still waiting to be magically cured since reaching adulthood, though I haven’t had any luck yet. In all seriousness: it does mean that we have had to handle a lot by ourselves over the last couple of years, but my life is still important. My life is good. Having a disabled child is not an overwhelmingly negative experience, even if it doesn’t meet your unrealistic ideals around what a family should look like. Disabled children deserve to not spend their time consumed with feeling like an unwanted burden. Radical, I know.

Dearest Owen, your light is brighter than you will ever know. I love you.

PS: I wrote a piece on accessibility for Scope, which you can read here, if you feel like being a massive nerd about it. I am changing the world, one blog post at a time. xoxo

A Love Letter to My Disability

It’s Valentine’s Day, which means that it’s time for me to be extra vulnerable on the internet again. I have always hated my disability and the way that it leads other people to perceive me. I have also spent an embarrassing amount of time crying over people that cancelled dates with me, after deciding that the prospect of future caring responsibilities was too much to handle. The damage that these experiences have inflicted is too heavy for words to properly convey. It has left me unable to trust in anything good. I’m constantly waiting for it to go wrong. Allowing myself to sit in the happiness for too long just feels dangerous and naive. I am notoriously bad at playing the field, so only have the emotional energy for one person at a time. If I have ever attempted to flirt with you in any way, please know that you are blessed and I am still shocked by the idea that you might have fancied me, however briefly.

Here’s the truth: I was about nine or ten when I burst into tears in the middle of an appointment to mould new splints for my legs, just because the man made some joke about all of the attention that I’d receive on Valentine’s Day. Every February, the words: “that’s never going to happen. Nobody’s ever going to love me because I’m disabled” sit at the forefront of my brain on an endless loop. I was heartbroken and am still trying to unlearn those negative internalisations.

With that said, this is a love letter because I’m learning to be grateful. Before my brother met his long-term girlfriend, there was more than one occasion where women would lose interest in him after finding out about his disabled sister. I really, really wish that I was joking. But this bullshit is a good thing, which is something that I have been trying to remind myself every day. Although impossibly painful for everyone, it is the purest of blessings. I don’t need that ableism in my life, anyway. I am determined to have more self-respect than that. I am worth more than someone that doesn’t see how beautifully radiant a life with me could be. I deserve to hold onto the connections that feel mutually good and healthy, which I’m trying to focus on now. Maybe there is something on the horizon, who knows? My heart is open to the possibility.

A few days ago, Lucy Dawson tweeted me back and called me beautiful. It was a passing comment and she has probably forgotten about it completely now, but it meant the entire world to me. For those that are unaware, she’s a pretty big deal within the disability community. She has been very influential in teaching me that disabled isn’t synonymous with unsexy. It is possible to feel attractive in a body that does not look the same as everyone else’s. I have even bought myself some new bras for the first time in two years, after my sense of self became so distorted that looking in the mirror was genuinely painful. These may sound like small steps, but I’m trying really hard.

a screenshot of a Tweet from Lucy Dawson that reads “good morning beautiful twitter ppl. I am sending you this GOOD MORNING TEXT because no-one sends me them and we could all do with one. SEND ME ON[E] BACK. Added smiles if you call me beautiful”. Danielle’s reply reads “good morning, beautiful lady !!!! you have a gorgeous soul & I hope that today is bright for you (red heart emoji)”. Lucy replies “GOOD MORNING BEAUTIFUL ONE (red heart emoji)”.
Do I have this screenshot saved on my phone so that I can read it before I get out of bed every morning? NATURALLY.

To the reader, if you don’t know much about this stuff, that’s okay. You can learn here and here. If you are disabled, single and feeling shit about yourself for it: know that I’m on the journey with you. You are whole. Falling in love with a disabled person will never be a burden, now or ever. My disability is not all that I am — I am a wonderful person and anyone would be LUCKY to date me. Repeat until believed.

Céline, you are the realest one. I appreciate the pep talks more than you know. Hannah, thank-you for reading this before I made it public because I was too nervous and insecure. I am beyond grateful that your friendship exists in my life. xoxo

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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My Body Can’t Take Care of Itself

In all likelihood, nobody that knows me has ever thought about how the inner workings of my daily routine come together. That’s probably because I have the ability to hold (relatively) intelligent conversations, which gives people the impression that I can look after myself. I’m still trying to decide whether or not this is something to be grateful for, in all honesty. On one hand, it allows me to be treated somewhat normally (whatever that means) by those around me, but it also leads to my circumstances being forever misunderstood. I have decided, though, not to spend the rest of my life being defined by other people’s misconceptions and prejudices. So, I’m writing this post to offer some clarity. It might not be possible to hangout in-person right now, but I’m hopeful that by being transparent here, people might be a little more thankful for my presence than before.

So, let’s start at the beginning. I can get myself out of bed, although this is something that I needed assistance with until the age of twenty-one. From there, it’s not possible for me to safely prepare my own breakfast (or any meal). My hands don’t often do what I want them to, especially when I’m trying to focus on something important. When it comes to showering and personal hygiene, my mum has to help me. Yes, this is awkward and uncomfortable for everyone involved, particularly since I have been getting older. She also helps me to get dressed, too. Most of the time, this includes choosing what clothes that I’ll be wearing, given that I’m generally too anxious to make those decisions on my own. Once all of that has been navigated, let’s not forget that I’m not able to reach my desired destination without her taking me there. (Before you say it: yes, I’m aware of the fantastic things that they can do with cars nowadays, but none of it feels practical or safe for me. I have also tried to independently use public transport a handful of times before, which only ever ended up being a nightmare.)

If we have ever eaten lunch or dinner together at a restaurant, please know that I would have spent hours looking at the menu online beforehand, so that I could ensure that there was at least one option available that wouldn’t require me to cut anything up. If you have ever seen me choose to drink something directly from a bottle, it’s because I can’t pour it into a glass myself without spilling it everywhere. Very classy, I know.

It’s such a weird thing to explain. In many ways, it feels like my brain doesn’t function any differently to other people’s. Once the basic self-care has been done, my life isn’t particularly extraordinary: I have the same wants, needs and goals as everybody else. I like to have a social life, in the same way that most other people do. Still, the process of getting there does take a little more consideration. It’s hard not to feel like my job prospects are limited, when there is so much that isn’t immediately obvious from the outside. (Thanks in advance, but I really don’t need any well-meaning suggestions about this.)

To be honest, most days, I just can’t be bothered to put in the extra effort. I find myself growing tired of it. If it wasn’t for the gentle encouragement from my mum, I would probably just never shower again. I’d survive on crisps and takeaways that are easy to manage. Even before the pandemic, I would only leave the house if my friends were very enthusiastic about it. It’s a lot to sign up for, you know? To the people that are willing to try, you are true blessings. It’s more important than you will ever know. One blog post at a time. xxx