Reminder: Being Disabled is Sexy

Recently, I read something by a chronically ill woman, explaining how her health issues (and the associated caregiving) had taken away the passion in her marriage. Instead, she was watching her husband clearly view her body differently, consumed by the fear that she was powerless to stop it. For me, the most heartbreaking part of this story was that she seemed to understand the shift in his behaviour, as if nothing about her could be desirable anymore. My first instinct was just to say “get a new husband”, but it’s never that simple, unfortunately. See, I have spent a lifetime alongside these struggles and I’m not sure that they can ever be entirely overcome. With that said, there is nothing more empowering than feeling good about yourself when the rest of the world refuses to be inclusive about their beauty standards. Like, sometimes we need to live in order to spite the people that feel uncomfortable about such levels of confidence.

I started being kinder to myself when I came to the realisation that disabled people are conditioned to feel shit about themselves, in every aspect of their lives, but most especially relating to their intimate relationships. For example: we are surrounded by a very loud discourse that either considers us to be completely asexual or questions whether or not we’re simply being exploited whenever anyone shows even the slightest amount of interest. Of course, these are both important discussions to have, but the suggestion that they are applicable to disabled people as one homogeneous group is very deeply damaging.

When I was at university, one of my greatest joys came from writing an essay about how disabled people should have access to inclusive sex education. I had been really anxious about this at the time, since it didn’t entirely follow the guidelines we’d been given, but I was passionate enough to put any academic concerns aside. After reading it, my lecturer remarked that I had taught him something and gave me the highest grade in class, which is something that I’ll forever be proud of. I mean, the statutory curriculum makes no mention of how to support pupils with physical disabilities. When updating these guidelines, the PSHE Association acknowledged that this group has voiced feeling invisible throughout any relevant classes, without offering any solutions as to how this might be accommodated for. The sources for this information can be found here and here, though it’s clear that not much has changed, at least within the public domain. Looking back, I firmly believe that this lack of representation triggered something in my brain saying “this information does not — and will never — apply to you”. More than that, though, it also sent a subtle message to my non-disabled peers that they were never likely to date anyone with varying levels of ability. So, the cycle continues. This creates an almost morbid fascination around how we have sex — or even if we can at all. Let me say this: the answer looks different for everyone and every experience is valid, even the ones that don’t fit into your ableist and/or homophobic opinions about what really counts.

The point, I suppose, is that we don’t owe you an explanation. You are not entitled to that information. We allowed to have autonomy over our own bodies, thanks. Also, we deserve to explore our sexuality without being made to feel like it’s a scandalous event. The rest is, frankly, none of your business.

A screenshot of a Tweet by nix et alia, which reads “so i went to a sexual health clinic today in my powerchair & i swear to god. 

the woman was already trying to direct me out of the door before i opened my mouth to say i had an appointment. then she stops & goes ‘YOU have an appt HERE?’ 

yes my good binch: crips have sex too *face blowing a kiss emoji*”
I’ll just leave this here. Enjoy.

If having sex when you’re disabled is still a complex conversation, then it’s relatively easy to understand how these same points can be connected to pregnancy. As an example: a few years ago, Tanni Grey-Thompson was heavily pregnant when someone came up to her in the street and declared that the idea of her having sex was disgusting. With this, here are a few reminders: disabled people have every right to experience parenthood as others do, if that’s something they want. Disabled people’s bodies are remarkable — and you don’t get a voice in what’s appropriate to do with them. Disabled people can be (and are) wonderful parents. Go and read a book or watch a documentary, you’ll find plenty of examples.

Okay, I’m almost done ranting now, but I do have a request. In the UK, disabled people often risk losing their benefits and financial stability if they move in with a partner, which is unfair beyond all words. We deserve to experience love (every aspect of it) fully and completely, you know? The fight towards equality is far from over yet, but it would mean so much to me if you signed the petition for change here. xxx

Éowyn, my love, you understand me in the most beautiful way and I will never stop being grateful. Rachael, you are going to be the most incredible mother. I will forever fight in your corner.

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

Challenging Accessibility in a Global Pandemic

The world has always felt like a very scary place for me to exist within. For the longest time, it was dangerously easy to internalise this as being my fault. I was convinced that all of my problems would be solved, if only I could learn to be slightly less socially anxious, you know? However, I am starting to realise that these feelings have been perpetuated by a desire to shrink myself and ensure that my needs didn’t inconvenience other people, which I refuse to do anymore. So, I’m going to write about a few experiences where inaccessibility hugely damaged my quality of life, in ways that the general population has probably never even had to think about before. Maybe you’ll feel called out for not questioning this stuff on a daily basis, but I want you to know that it’s okay. I’m not going to be invisible for another moment longer. Let’s all agree to do better, moving forward.

I will never forget the time that an old friend had a birthday party during our teenage years where all of the guests (also my friends) were told: “don’t tell Danielle. I’m not inviting her because my house isn’t accessible and I don’t want her to feel left out”. Spoiler alert: I heard the gossip pretty quickly. For future reference, it’s always nice to have a conversation and know that someone is thinking of me, rather than to feel very intentionally excluded. I don’t expect people to centre their entire plans around my existence, of course, though it would be cool to feel like my presence matters enough to warrant some consideration. Because that, I suppose, is the entire point: disabled people’s lives do not matter enough within society to earn a second thought from those that the issues do not directly affect. We are not invited to take up space in pubs and clubs, for example, because we don’t belong where everyone else goes to have fun. Well, frankly, I have had enough.

As another example: when I started college and finally found somewhere to properly fit in, I was delighted when a group of new friends asked me to hang out with them one evening. Although the gesture itself might sound small, let’s remember that it hadn’t happened many times before, so this immediately felt like my life had reached a turning point for the better. Additionally, these people are lovely and considerate, so even made a phone call to our chosen venue to check that everything was wheelchair-friendly. After being given assurances that there wouldn’t be any problems, I was safe and ready to start enjoying myself. Unfortunately, though, the story doesn’t end there. When we arrived, it became apparent that there were stairs by the entrance and no ramp available. Needless to say, I went home and tried to pretend that it was no big deal.

A few years later, I wanted to take a bus from university campus to the centre of town. Public transport generally stresses me out, but my friend was involved with a local art exhibition and I wanted to be supportive. Besides, there’s nothing wrong with trying to be a bit more independent, right? On this particular day, however, the ramp was broken. Eventually, this led to some well-meaning strangers attempting to push me onboard instead. I have nothing to say about this, except: don’t touch mobility aids without consent, people. In response to all of this, I simply left the scene very quickly and cried to my mum about it later. Every single time that I have tried to be like everyone else, something goes wrong, leaving me unnecessarily vulnerable.

A screenshot of a Tweet by Lucy Dawson, which reads: “was just sat thinking gosh I hope the world doesn’t forget about us disabled & chronically ill ppl when the pandemic ends but then recalled that much of the world has yet to actually remember us in the first place so anyway. AS U WERE, LD. X”
Just don’t forget that disabled people exist. It doesn’t feel like too much to ask.

Interestingly, although the world’s current circumstances are overwhelmingly horrific, this pandemic has forced the world to become more accessible. Classes have been moved online with relative ease (thanks to the lecturer that told me this type of thing would be too complicated and unfair on everyone else when I was very unwell), working from home is now more socially acceptable and there has been an increase in job opportunities for those with limited mobility or fluctuating health conditions. Not only that, but social events are almost entirely virtual, which takes away many of the physical accessibility concerns for disabled people. In short, now that these options have been made available, I refuse to watch them be taken away entirely just because they make everyone else feel as if life is not being lived to the fullest. There has to be some kind of balance, which we should all be determined to find.

A screenshot of a Tweet by Charis Hill, which reads: “Hey folks who want everything to go back to normal:  Disabled people really need you to finally get it:  #BackToNormalIsAbleist”
The short version of this post is essentially summarised here. Enjoy.

To Kesia, thanks for being the inspiration behind this piece. You are a wonderful friend and I will forever enjoy our rants about social injustice. Dearest Éowyn, I can’t wait to go on adventures with you. Thank-you for reminding me that the fight will always be worth it. xxx

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.

Stop Killing Disabled People

“Going out in public so often takes courage. How many of us find that we can’t dredge up the strength to do it day after day, week after week, year after year, a lifetime of rejection and revulsion? It is not only physical limitations that restrict us to our homes and those whom we know. It is the knowledge that each entry into the public world will be dominated by stares, by condescension, by pity and by hostility.” – Jenny Morris, Pride Against Prejudice.

Oftentimes, it is far too easy for non-disabled people to fall under the illusion that society is not an ableist place. It is far too easy for them to assume that disabled people are safe in the supposedly progressive world of 2021. However, the community has recently been provided with more than one example of why that is just not true, which it feels important to unpack here. There is still so much work to be done — by everyone.

Firstly, we need to talk about a recent article from The Guardian. This revealed that people with learning disabilities are routinely being given Do Not Resuscitate notices, should they become unwell with COVID-19. I mean, what kind of dystopia are we living in here? Worse still, this group is not typically considered to be a high priority for vaccination, despite growing evidence that they are more likely to die or face serious illness than the general population. If this doesn’t make you want to cry, then I don’t want to be associated with you anymore and I’m not going to apologise for that.

In situations like this, maybe it would be more comfortable to pretend that it isn’t happening. However, Jo Whiley was offered a vaccination before her sister, Frances. If you have been paying any attention to the news lately, then you’re probably already aware, but she has learning disabilities and diabetes. Heartbreakingly, she has also now tested positive for Coronavirus, after an outbreak at her residential care home. There are truly no words to describe the range of emotions that I’m feeling right now. It is just so disheartening to know that there is still this much left to fight for, even on the most basic level. Putting everything together, the message is clear: that the lives of disabled people are deemed to have less value than everyone else’s. That our quality of life is so minimal, we are not worth saving. Whilst I don’t have a learning disability myself, make no mistake: this is a narrative that impacts the lives of disabled people as a whole. It is something that everyone needs to work towards dismantling.

So, what can we do in situations like this? Talk about it. Shout it from the rooftops. Allow yourself to get angry, whether you’re disabled or not. On a practical level, you can also sign petitions, which can be found here and here. Stuff like this has been happening for years. I’m not going to let shame silence me any longer.

a screenshot of a Tweet by Frances Ryan, which reads: “It’s telling how some people refuse to believe DNRs are wrongly used against disabled people in the pandemic. It runs against our natural belief that medical institutions can always be trusted, that they’ll make us better. Not everyone receives the care you do. That’s the point.”
Listen to disabled people. Hear their stories. This is the reality and it’s terrifying.

I can’t remember how many times that I haven’t been able to get the care that I need because my physical disability made things too complicated. For example: one time, I had to have a sigmoidoscopy done at the hospital (don’t ask Google). Afterwards, the nurse asked me if I needed her help getting dressed. My “yes, please” in response must have panicked her. I know this because she very quickly went to find my dad instead, after admitting that she didn’t know exactly how to assist me and therefore felt uncomfortable about it. She didn’t even ask any questions. The reason that I’m sharing this story now is because it can become very easy to feel like a burden, particularly in medical environments. Ugh, it is time to do better. I have had enough. Stop sitting back and letting disabled people die, both in the pandemic and outside of it. We deserve more than that, thanks. 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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