Let’s Get Political: Inaccessible Workplaces and Why the Welfare System Needs to Do Better

The Government has recently put forward a Green Paper, which highlights the efforts that are now going to be made, aimed at helping disabled people to fully integrate within all areas of society. They are so proud of this, calling it “the most ambitious plan in a generation”, particularly focusing on bridging the employment gap, ensuring that the disabled community are theoretically able to find and keep work more easily. Not only that, but they also placed emphasis on tightening the laws around building accessible housing, too. So, here’s the thing: all of this sounds exciting, right? Some might even argue that it’s progressive. With that said, reaching this point has been so painfully difficult, both locally and globally. For example: just a few days ago, it was announced that the US Paralympic team will be paid the same amount as their Olympic counterparts for the first time ever. Yet, we are expected to be grateful for the bare minimum — the smallest signs of progress —, after consistently being told throughout the pandemic that our voices should remain unheard? Not today, thanks.

When I was in the early years of secondary school, we were once learning to sew as part of a textiles class. I find stuff like this embarrassingly difficult because my fine motor skills leave a lot to be desired, so I had been heavily relying upon help from my Support Worker. I mean, you would think that’s literally what they’re there for, huh? Still, the teacher waited for everyone to leave as the day ended before launching into a speech about how I would never amount to anything if I insisted upon moving forward with a bad attitude and expected other people to do everything for me. She then went on to imply that I was simply too lazy to try, as if she was suddenly the expert in all things Cerebral Palsy, which was an interesting take. I left the room without saying much and she called my mum to apologise before I even arrived home, but the damage had already been done. It’s funny, how quickly you can begin to doubt yourself once this message has been sent your way. Maybe I really wasn’t doing enough. Maybe everyone would get bored of me. Maybe my presence just makes people roll their eyes.

I have many examples like this one, but there’s a lot that this leads into, so I’ll just give one more: when I was later in a wood technology class, I was determined that I could do this independently. I wanted to be seen actively participating, almost as if to prove that I deserved to be there. I remember this distinctly because I was initially allowed to do it independently, after I had been given some gentle direction. I was so genuinely proud of myself, until it was decided that I was being too slow, so the teacher just wordlessly came to finish it for me. Worst of all, he made it took easy. Again, the message was clear: even my best efforts would always hold other people back.

With this, I have always found it hard to settle on a career — or even the idea of one. Do I have enough to offer? Is it actually possible to earn a decent wage on the amount of hours that I’d physically be able to put myself through? How flexible are employers likely to be, really? What would I even be good at, anyway? So many questions. Of course, it’s easy for people to assume that the welfare system is a dreamy alternative, although it’s the opposite. The money that you receive is alarmingly minimal and it’s almost impossible to build up any meaningful savings. I was once told by an assessor that they expect me to only be able to afford a holiday if my parents paid for me, as an example. Of course, that’s without even talking about how deeply invasive and distressing the process is in itself. I was asked to talk at length about all the things my disability prevents me from doing — the very things that I’m constantly pushing to the furthest edges of my mind —, to the point where it made my mum cry. There is no dignity in this.

A screenshot of a Tweet by Kitty Strand, which reads: “it just seems wild to have a minister for disabled people who isn't disabled”.

In summary: we live in a society that equates working with having value, yet are already beginning to scale back on the most accessible remote job opportunities, in light of restrictions being eased. Then, we use this to dehumanise disabled people altogether. Disabled people deserve to live the fullest of lives, no matter what, but employers also need to recognise that we are worth more. It’s really not that hard, okay? It would be nice to be given a chance.

Owen, you will forever be my favourite person in the whole world. I still don’t know what I did to deserve you, for the record. xxx

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

Owen, 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.

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

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 Owen, I can’t wait to go on adventures with you. Thank-you for reminding me that the fight will always be worth it. xxx

Surviving Social Situations as a Disabled Person

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

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

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

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

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

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

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

Learning to Love My Disabled Identity

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

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

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

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

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

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

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

The Trauma of Being Disabled

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

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

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

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

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

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

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

Follow me on Twitter here.

I’m Tired of This Bullshit

Can you believe that it has been almost a month since I last wrote anything here? To be honest, there have been various moments within that time where I have considered giving up the blog completely, purely because it feels like I have run out of insightful things to say. Although 2021 has only just started, I find myself exhausted by all that it has brought, you know? My brain has found everything slightly difficult to handle (which is probably an understatement), making it somewhat impossible to organise my thoughts in any kind of meaningful way. Still, if at least one person can relate to the weird sense of being suffocated by current events, then maybe allowing myself some vulnerability here is worthwhile.

So far, a recurring theme is my lifelong attempt to avoid feeling disabled, in any way that I can. From the optimism that surrounded my previous post, it’s clear that I was beginning to find different (and healthy) strategies for distraction. Oddly enough, I was slowly becoming more comfortable within the uncertainty, desperate to believe that better days would soon be on the horizon. Then, we entered into yet another period of lockdown restrictions. Each time this happens, I’m reminded that my version of normality will never be the same as everyone else’s — there’s always going to be something in the way, something that the vast majority of people will never be able to grasp. Almost overnight, the precarious balancing act that had been whirring inside my mind simply began to crumble. To be totally transparent, I don’t leave my bed unless absolutely necessary anymore. By extension, I also don’t wear anything but pyjamas, unless there’s a very specific reason for me to look like I have my life together. Otherwise, what’s the point?

Right now, the negativity seems to be seeping in from all angles. Slowly, I’m learning that sometimes it’s important to hold hands with the darkness until I feel ready to dig myself out again. I need to grant myself the space to process these emotional hurdles in a healthy way, without the pressures of forcing myself to follow any one particular timeframe. Thankfully, though, I have a Netflix subscription and am currently taking each hour as it comes. (Hit me with any recommendations you might have. We can work our way through the weirdness together. I finished watching Marcella in one day, if that helps.)

With all of that said, I am here with one very specific purpose: to draw attention to disability issues in times of crisis. If you have read this far, hopefully you care enough to stick around for this next part, too. Because every day, there is at least some focus on the news about how the current pandemic is affecting the elderly in care homes. Of course, this is a heartbreaking issue that deserves a significant amount of coverage, but let’s not forget that the same problems are also being faced by disabled people of all ages. Not only does this contribute to the narrative that our lives are not important enough to be included within mainstream conversations, but it also makes it harder to access the relevant support.

This felt like an especially timely point to make after the news that Katie Price’s son, Harvey, will soon be moving into residential college. Just like the elderly in care homes, disabled people in assisted living arrangements have also been disproportionately isolated by the pandemic. They are also not currently allowed visits from family and friends, with some of them not always able to understand why this is necessary. Yet, this is rarely recognised within any media coverage. These people’s lives are not a burden and I refuse to let them be forgotten.

Stay home, wear a mask and don’t be a dick. If you want to read more about the realities behind this story, you can do so here.

PS: although this type of living arrangement is not an immediate reality for me, it likely will be at some point in my future, however distantly. It is nothing to be ashamed of and does not make me any less of a whole human being. Also, to the reader that wanted to know my Starbucks coffee order: I’m more of a hot chocolate gal. xxx

The Shame of Being a Disabled Person

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

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

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

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

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

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

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

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