Reflections on Healthy Privilege: An Open Letter from Two Disabled People

I have always found it very easy to resent the healthy people in my life. Honestly, learning to feel any other way about it has taken a lot of work and healing, particularly within the lens of a global pandemic. It’s also a topic with many different and complex nuances, which is why it felt important to collaborate with my dear friend, Lexi. By having these conversations from more than one perspective, it’s easier to see where the wider issues are — and what work needs to be done when moving past them. So, here we go, sharing stories and being vulnerable.

When I was about ten, we were given an assessed group project. Whilst I don’t remember what we were researching, I do remember working on it at a friend’s house. At some point during the day, I had to call my mum about something, so everyone else went outside on the trampoline. I could hear them laughing. Having a good time. As children should — but without me. It was a type of joy that I could never access. For some reason, I found the enormity of these emotions to be overwhelming, so asked if my mum would collect me. When my friends came back inside and I explained the situation, one of them said: “what are you going to do, just never leave the house and cry every time you see anyone walking around town?”. Now, we were ten. It was impossible for her to even begin understanding what my brain was going through, let alone think of a more sensitive way to discuss it with me. I still don’t have the answers myself. Most of the adults in my life have struggled, too. There is no simple solution. Later, a conversation between our respective mothers looked something like this: it’s difficult, isn’t it?”. I have never forgotten my mum’s response. “It is. I think it’s only going to get worse as she gets older, unfortunately”. Spoiler alert, friends: it did, in fact, get worse. Much worse. But then it eventually got better, which is what I want to focus on.

A screenshot of a Tweet by Philippa Ayana, which reads: “Why don’t people understand, it’s not that we don’t want to go out, it’s that we can’t. People with physical or mental conditions want to do things but our bodies literally stop us. 

It’s not a f*cking choice.”
Sometimes, I will reject your social invitation simply because I don’t want to go, I’ll be honest. But you get the idea.

At this point, I will humbly step aside from talking about myself (gasp!) and give Lexi the space to unpack her feelings, too. Buckle up. Side note: you’re welcome to read these words in her New York accent because it automatically makes everything she says infinitely cooler than me:

It is often difficult to put limitations on myself to prevent burnout. On one hand, I’d love to be able to do things the way healthy people my age can. On the other hand, there is the painful truth that I simply cannot fit into that mold. For the longest time, I’d try to water myself down. To make myself manageable to others, as a disabled person. I’ve come to realize that whether it be jobs, friendships, day to day tasks — that I don’t fit the typical mold, and I am okay with that. Different doesn’t mean bad. Disabled doesn’t mean bad. It’s what makes me unique, and bold. These experiences — as much as I’d rather have not had to go through them — as a disabled individual, only prove my strength and resilience. Even when I cannot see that.

When I became friends with Danielle, during 2020, it was during a time that I felt incredibly hopeless. It’s a global pandemic, of a lung infection with no vaccine, and I was an individual with severe uncontrolled asthma. Most people have the knowledge that somehow, asthma is, ‘puff puff inhaler, and you’ll be fine,’ kind of nuance. That has never been my experience. With the persistency of my lungs not cooperating, I was in the hospital for a week or so at a time nearly every month at one point. I didn’t write all of this to be a sad story. The point is this: when I met Danielle through a Facebook group, she brought hope, love, and a different perspective for me to consider. I am thankful every day to have become such lovely friends. You can follow Lexi on Instagram here.

A screenshot of a Tweet by Imani Barbarin, which reads: “Disabled people are my people of the year. Literally, fuck everyone else. 

After the shit y’all put us through.”
& with that, Happy Holidays!!!!

In conclusion: it’s really difficult to feel like a valued member of society, even by our own peers and loved ones, when the struggles of these disabled experiences are belittled for their own convenience. It has taken me a whole decade to feel okay. Don’t take that away from me just because you’re getting bored. Thanks in advance.

Lexi, thank-you for bringing your wisdom to this page with me. I will listen to that voice message of you saying “howdy, y’all” whenever I need a serotonin boost. Éowyn, I feel so blessed to be ending this year with you (and yes, I also have a Big Crush on you. We can get married whenever you want.) xxx

Sometimes, Being Disabled Makes Me Sad (& That’s Okay)

Recently, I started talking with a disabled friend of mine about grief. Not the traditional kind, which is perhaps what makes it even more misunderstood and difficult to talk about. Instead, this feeling attaches itself to the very essence of our hopes and dreams, which are often made somewhat impossible when you exist within a body that refuses to cooperate. Being aware of this, yet simultaneously unable to do anything about it, can be really heavy to carry sometimes.

I have been disabled for my whole life, so it might be easy to assume that I have never had to shift my own sense of perspective. I mean, thinking everything through on a practical level is surely just a sensible thing to do, right? In truth, when I was growing up, I could never imagine living further than past the next day. Even now, whenever anyone asks about my hobbies, I don’t have much of an answer. I promise that I don’t just say this in an effort to sound quirky. My days are almost always very mundane. I spent so long focused on surviving, I never really expected that I would ever dare to hope for more. I never really expected that I would experience any consistent joy. Similarly, other people have never really known what to expect from me, either. Throughout my life, I have always seemed to find the intimidating balance between able enough to recognise my strengths and too disabled to actually put them to use. Even aside from the obvious physical limitations, just attending school every day would give me enough anxiety, it was hard for anyone to believe that I would overcome it enough to ever properly function like an adult. This idea was very easy for me to internalise, as I have written about before (albeit badly). Soon enough, I started to believe that I would never be Good Enough at anything. Sure, I completed a degree and attempted a postgraduate, but all of this was simply to delay what felt inevitable: that I would ultimately end up not doing anything. At first, I thought this might actually be fun. I mean, who doesn’t dream of having endless free time? The reality, though, is very boring.

On a white background, there is: a cartoon drawing of Moss, a nonbinary person with ginger hair and a blonde fringe, falling through a hole in the sky on a sunny day. They are naked and about to land on a blue hospital bed, where there is a blood bag ready for infusion. In the right corner, there is an artist credit symbol for “little jaybird 21”, in reference to their Etsy store.
This drawing depicts the vulnerability that is so often associated with being disabled and chronically ill. How easy it can be for these diagnoses to define us. How hard it can be to recognise that we are not burdens. You can follow the artist, Moss, on Instagram here.

As I have found myself moving forward with a healed heart this year, it has also been hard to know where my boundaries are and what to do with them. I have had to fight every day to accept these limitations without allowing myself to become consumed and defined by them, which is far from easy. Having a disabled body means proving yourself over and over again. Working extra hard to prove that we deserve to take up space.

A few months ago, I was having a casual conversation with my dad when he mentioned that I would have definitely moved out of town to attend university, if I hadn’t been disabled. I have the fiery spirit that makes this feel like a statement of fact – a mere observation of the direction that my life would have taken, if my body had awarded me different opportunities. I know this, of course. I have always had a very independent mind and taken great pride in my ability to have individual opinions, away from the influence of other people. It feels like I have always been destined to take my own path, you know? So, why did hearing these words out loud leave me crying in the bathroom for half an hour? Side note: I can laugh about it now because it was the most dramatic kind of crying, but still, I was genuinely devastated. Let’s unpack it. I know that I can do these things. I know that I am capable of more – for myself. But I also know that it takes the most intricate planning and there will be barriers every step of the way. I know that some things will be too hard. That some options just simply aren’t available to me. But, most importantly: I know that I can live a beautifully fulfilled life regardless. It’s okay to wish that getting there could be easier for disabled people, though.

Éowyn, thank-you for loving me. It is an honour to intertwine my hopes and dreams with yours. To Zoe, I hope that reading this gives you permission to feel sad, whenever you need to. xxx

Having Ambitions and Managing Expectations as a Disabled Person

My life is not defined by any of the boundaries that society places upon me. My existence is too full and beautifully loud to be squished into any boxes. At least, that’s what I have been trying to tell myself every day. I am slowly learning, however, that the reality is not always so idyllic.

My lovely friend, Elaine, recently sent me a screenshot from a YouGov survey and brought my attention to one question in particular. It asked whether or not the general population thought that disabled people were “too reliant” on the welfare system to support them. When I last wrote about this in detail, I didn’t articulate myself very well, so let me be clear. In these circumstances, any money that people receive is truly the very bare minimum, yet even this is being reduced further in October. I have been trying not to think about it too much, if I’m being completely honest. It’s stressful and makes me feel kind of gross about myself. I mean, this is happening despite warnings from various charities that it’s likely to push millions of vulnerable people into debt. If that doesn’t tell you everything you need to know about how little our lives — and the things that bring us joy — matter, then I don’t know what will. Furthermore, in response to criticism, Boris Johnson has said that people should see their incomes rise by making an effort independently. In case it wasn’t obvious, here’s why this is so ableist: many disabled people can’t work, for a myriad of different health reasons. At best, it’s not always possible for them to manage working full-time. Secondly, many jobs and workplace environments are physically inaccessible. For example: I have been trying really hard to find a job, truly. My body doesn’t allow me to do much that is deemed worthy of being paid for, but I saw an opening at a local library. Working from home would be ideal, but I was willing to give this a try, until I saw that you were required to be capable of manual labour. I was so disheartened — and this is only one example. Not only that, but many positions require some level of experience, which has never been available to me. Lastly, disabled people are consistently paid less than their non-disabled counterparts. It is so unbelievably draining to constantly take an unflinching look at your body and feel like nothing will ever be good enough.

The other day, I went on a walk with my family to the park, as a small celebration of my brother’s engagement. When we were there, someone stared at me, which is fairly standard. These moments affirm that the (dis)proportions of my body are jarring to those around me. That my obvious happiness is shocking, confusing and worthy of a second glance. Interestingly, it also reminded me of a conversation that I had with my physiotherapist during our last session. We were in the middle of doing even more work than before, when I mentioned very casually that I hate doing squats because “I feel like I look silly”. She told me that many of her patients have expressed similar insecurities, particularly around going to the gym. She said “I have massive respect for anyone that knows other people are going to have an opinion about the way that they are able to look after themselves and choose to do it anyway, even when it’s difficult”. The urge to shrink myself and hide away is overwhelming sometimes. There is both comfort and sadness in knowing that I’m not alone in this.

A black and white photo of Danielle using a hoist to stand in physiotherapy. She is wearing a mask but her eyes look happy because she is smiling at the camera. She is holding on for dear life.
I thought about using a hoist for transfers when I was in secondary school, but my brother and his friend walked in unexpectedly when I was trying them out. I was literally dangling in the air. I remember leaving the room in tears because I didn’t want them — or anyone — to see me at my most disabled. The shame was indescribable. Now, I’m willingly posting this picture on the internet. That’s a win for personal growth.

As I was writing this, trying to think about how to wrap things up and make sense of how I’m supposed to move forward from here, my sister came into the room to help me have a shower. I couldn’t figure out how to log out of the web browser, so just quit the page instead. “You’re going to lose all of your work”, she said. Her choice of words hit me with a clarity that had been lost before. Work. This, here, is work. It might not make me any money, but it’s my something. The value that disabled people have cannot be measured by their contribution to traditional definitions of employment. This doesn’t mean that we deserve to live a life that is smaller and less open to adventure.

Éowyn, you make it feel like moving mountains to include me will never be too much hassle. I don’t have enough words in my vocabulary to express how deeply important you are. I love you so much. xxx

Finding Disability Pride in a Global Pandemic

Until recently, I have always actively avoided attaching myself to any notion of disability pride. If I’m being completely transparent, I hoped that this defiance might somehow allow me to wake up one morning with the ability to walk — or even stand. There is no logic to this thought pattern whatsoever, I know, but I do still have dreams about it sometimes. It’s hard to describe what it feels like to wake up from these places with the briefest hope that they have become a reality. If you were wondering, the first thing that I’d do in this instance would be to find my parents and shout “surprise!” in the most casual tone that I could muster. Afterwards, I would immediately go for a shower. Independently. What a wild concept. Also, I have always thought that jumping looks like so much fun, even if only on the spot. Is it fun? The simplest of things, really. Yes, I have planned it. Just in case. But when that doesn’t happen, what am I left with? I have spent half my life genuinely believing that it was impossible for me to happily exist in a disabled body. Let me tell you, friends, the ugliness of this pandemic has led to the most beautifully wild and liberating revelation: I was wrong. There will always be a lot of noise to the contrary, but disabled lives are full. Disabled lives are good. Disabled lives are worthwhile. Disabled voices are important, even when (and perhaps because) policy consistently works to suggest otherwise. So, let’s talk about that, please.

Here we are again. In the United Kingdom, most restrictions are officially set to be lifted on July 19th, despite warnings that this could cause our case numbers to reach one hundred thousand per day. But most clinically vulnerable people have been fully vaccinated now, so who cares, right? The amount of times that I have heard this argument within my own social circle is both disappointing and not at all surprising. The fact remains that recent research raises doubts over vaccine effectiveness for immunocompromised people. In all honesty, I have been trying really hard to simply avoid fully processing this information and stay positive about the potential outcomes, which may sound irresponsible, but it’s also deeply important to my emotional stability. Because what type of message is this supposed to send, really? From where I’m sitting, the answer is a painfully obvious one: nobody cares. The lives of disabled people are inherently less valuable than opening nightclubs, for example. Once again, it has been decided by the people in positions of power that we are disposable. Well, excuse me if I’m done being quiet about this bullshit.

A screenshot of a Tweet by Karl Knights, which reads: “Not gonna lie, I am very much not fine. Having the government, and your peers, just outright say that they don't care if disabled people die is as enraging as it is upsetting.”
I am leaving this here because I have A Lot of feelings. The world is especially rough for disabled people right now and it’s okay to just sit in the sadness for a while, if you need to.

See, having a disabled and/or chronically ill body isn’t easy, especially in moments such as these. The subtle ways in which society is ready to tear us down for its own benefit can become twisted into our own brains and leave irreparable damage. But guess what? The idea of getting on other people’s nerves by existing loudly and happily motivates me more than anything else. This year, that is enough to fill me with pride, which I haven’t experienced before. I mean, let’s be real. It requires a lot of Bad Bitch Energy not to give up on yourself when your needs are very clearly seen as inconveniencing the general population. Similarly, it also requires a lot of Bad Bitch Energy to take up space in the rooms where difference is not welcomed. News flash: if you’re reading this, you haven’t given up on yourself, either. What a powerful moment.

To the non-disabled readers, thank-you for caring enough to listen. Thank-you for reaching out and offering solidarity. You give me hope that the future can be better.

Zoe, thank-you for always believing in me and filling my messages with words of wisdom. You are brilliant and bright, even on hard days. Éowyn, thank-you for teaching me the power behind being unapologetically myself. I love you. xxx

My Disabled Body is Not a Burden, You’re Just a Dick

About two weeks ago, a disabled friend of mine sent me a text, asking if I’d ever navigated the precarious tightrope of feeling like a burden on my family. To be completely honest, the short and painful answer is: every day, without any real explanation. Interestingly, as I write this now, I’m fighting the overwhelming urge to reassure the reader that not everything about my existence is a hassle. Like, I made a list on my phone of all the things that I can do independently, as if that somehow equates to my worth. I mean, why do these details matter so much? I don’t know, but it’s probably some internalised ableism bullshit. As I work through it all, I wanted to allow myself a bit of public vulnerability, in case someone else can relate and is searching for solidarity. So, let’s buckle up.

For context, I am naturally inclined to believe that life is infinitely more fun for everyone else when I’m not invited to participate. The simple yet brutal fact is that existing in a body like this makes everything more complicated, not only for disabled people themselves, but also for those most closely associated with us. In fact, drafts of this post were almost entirely negative, as I became consumed with the idea that I’m not worth the extra effort. I was even ready to give you examples of the ways in which my presence doesn’t sparkle in social situations, validating your decision to not include me. Often, I’m not sure that I deserve it. How sad is that, really? But here’s the thing: disabled people are worthy of a seat at every table. Yes, we might occasionally have to make some noise about it, but so what? We shouldn’t have to limit ourselves just because other people can’t be bothered to make accommodations.

Over the years, I have spent time planning dream weddings with my friend, Kesia. Even during the times when we have both been Very Single. I will always lightheartedly say “I’ll be deeply upset if you choose an inaccessible venue” and she responds every single time with variations of “Danielle, I would simply refuse to get married without you”. What I’m learning, even right now as the words begin to form, is that it’s not difficult at all. I have spent a lifetime surrounded by this idea because so many people don’t care enough to figure it out. Still, that’s their loss.

With this in mind, it feels like a good time to talk about my parents. They have never been given the luxury of deciding whether or not to accommodate their plans, you know? It has been a very direct part of their reality for the past twenty-four years. It’s impossible not to wonder what paths they might have taken differently, if my body had been less reliant on them growing up. For my siblings, also, it has been an undeniably wild ride. As I have gotten older, I have spent a lot of time crying over the idea that they would always feel somewhat responsible for and limited by me, which I would prefer to avoid at all costs. There are parts of these sacrifices that can sometimes be both physically and emotionally exhausting.

A picture of Danielle standing awkwardly from her wheelchair and smiling. She is wearing a burgundy jumper, has short brown hair and wears glasses. In the background, you can see that her bed is messy. There’s also a plant and some weights on the chest of drawers behind her.
Enjoy this picture of me attempting to stand (badly) because it’s empowering to not care what I look like.

There is another side to this that nobody seems to talk about or prepare you for, though. See, having a life of my own finally feels like a genuinely tangible possibility for the future. That’s what falling in love does to people, I suppose. I was always convinced that it would never happen for me. I could only ever envisage getting older in my family home and staying there forever, without reaching any of the usual milestones. I really, truly believed that I was destined to watch from the sidelines. I couldn’t see another alternative, so it eventually became something that everyone else grew comfortable with, too. So, how can my family be expected to process these emotions when my options change so radically beyond anyone’s wildest dreams? What happens to their identities, which have always been centred around whatever I needed? I don’t have the answer to this question, but it’s clear that the transition can be a painful one.

To summarise: if you’re disabled and feel like a burden, please know that this really is a societal problem. You have been conditioned to feel that way by a world refusing to build itself around your needs. Even when you’re surrounded by wonderful people, there will still be moments where this feeling persists. Fight it. You’re worth so much more, I promise. You add value to the lives of others that is beyond your comprehension and they would be lost without you.

Éowyn, thank-you for always reminding me that coexistence is beautiful, no matter what it looks like. I promise to make space for you in every room. I love you so much. xxx

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.

Éowyn, 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.

Éowyn, 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 Éowyn, 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

Being Gay and Disabled (COMING OUT)

I have had some genuinely traumatic experiences with dating in the past, which is relatively public knowledge, if you have been reading this blog for a while. In reality, much of this happened because I was desperate to force myself into a traditionally heterosexual space, despite never feeling entirely comfortable. I was already struggling with the marginalisation that being disabled brings, you know? I wanted to avoid making my life more unnecessarily difficult. I couldn’t figure out how it was possible to ever be happy within a society that continues to reject my existence, so decided that my only option was to stay quiet. Therefore, I was willing to accept whatever (limited) attention that I was offered, almost as if to prove some kind of point to the universe. See? I can pretend — and maybe if I pretend for long enough, then it will start to feel natural. Spoiler alert: that never happened. Instead, I just became very mentally unwell. The idea of letting anyone down with this truth has been consuming me for years, which is something that I almost didn’t survive. For a while, this truly felt like the best approach.

Amongst my closest friends, I have been identifying as gay for over a year now. Every single person embraced me with such an incredible amount of warmth and acceptance, which I will forever be grateful for. If this doesn’t include you, please don’t take it personally. I only told my immediate family yesterday, simply because it’s so terrifying. It’s going to be an adjustment for everyone, I know. With that said, I am exactly the same person that you have always known, just deciding to live more freely and authentically. I am not asking for your approval because, frankly, I don’t need it. I am simply asking you to allow me this happiness, even if it will take some time. I don’t hate myself anymore, which I hope that people can accept with an open heart.

A poem by Wendy Travino called Revolutionary Letter, which reads “one thing I’ve learned/come to provisional conclusion about: when it comes to fighting, there are people who will help you & there are people who will not & there are people who will stand in the way. find the people who will help/ be loud: & clear so they know where you are — focus on them, be encouraged by them, encourage them, work with them, don’t worry about the people who won’t help. they will be of no help even if they are on your side. waste as little energy as possible fighting people who stand in the way, which is to say don’t talk, don’t argue, just get them out of the way of the fight you came for.  tl;dr: you don’t need or want the people who you know aren’t “with you” to be with you. really, you don’t”
A poem by Wendy Travino. Thank-you to all of the people that have helped (and continue to help) me fight to gather the strength to be here, writing this. Free.

Is there ever a right time to make announcements such as this? Truthfully, probably not. I do finally feel ready, though. See, dear reader, I have fallen in love. It is a beautifully pure kind of love, which I never truly believed that I would ever be lucky enough to experience. My partner, Éowyn, is genderqueer and uses they/them pronouns. With regard to everything else, kindly get educated or mind your own business. They make me happier than I ever knew that it was possible to be. They are, quite simply, the best human being that I have ever met. They first came into my life when I posted on that disability group looking for friends, which is just wild to think about on every level. Not to be too gross about it or anything, but I love them so much, it feels almost spiritual. There will never be enough words, but I would like nothing more than to spend the rest of time with them. Yes, I’m declaring that now, publicly. Bold, am I right? I would go anywhere and do anything, you know? They are my home and they make all of the scary stuff worthwhile, including this. I am so unbelievably proud to be in love with them. Every day is a blessing — that’s all anyone can ever ask, isn’t it?

This is a really massive deal for me. I have been waiting for my entire life, so please don’t be a dick. Now is not the time. But equally, I will not apologise for being happy, now or ever again. Éowyn is absolutely everything. They are wonderful in every way and my heart is with them for always, even across distance in the middle of a global pandemic. The rest of the bullshit is irrelevant.

With special thanks to Imogen, Kesia, Megan, Sonia, Holly, Courtney, Sam, Kai, Céline, Cool Hannah, Rachael and everyone else. I hope that you know who you are. Finally, to my family: I have had a draft of this post saved on my phone for a few days now, before telling you, but I feel obligated to include a small edit here. Thank-you for loving me so unconditionally. I have played this scenario over in my head a million times, quickly becoming convinced that nothing would be okay ever again. Thank-you for the hugs, the jokes and the supportive messages. I appreciate every single one of you more than words could ever fully articulate. Again, I don’t hate myself anymore. I made it. Thank-you for making such a beautiful effort to understand and embrace everything that I am. I love you. 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, Éowyn, 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.