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

Why Do I Hate Myself So Much?

In the week that lockdown restrictions have been eased, I felt compelled to make sure that some of the bigger issues are not forgotten. It’s entirely possible that nobody reading this will care at all, but perhaps taking this action can prove something to myself instead: a reminder that my existence can — and does — have value, even within a society that would readily dispose of vulnerable lives in exchange for a trip to the pub with their friends. See, the title of this post asks a big question, I know. In fact, it might make some people feel uncomfortable, in the same way that such raw honesty is wildly outside of my comfort zone. However, it’s also something that I have had no choice but to confront this year, after a lifetime of preferring to pretend that these thoughts were not an issue. Due to a wide variety of medical conditions, I have been shielding since March, even during the periods where advice around this has been more lenient. Almost overnight, all of the coping mechanisms that I had put into place to compensate for how different my life felt to other people’s simply disappeared. Before, I could just about manage the dull ache that I feel in my heart over a lack of healthy romantic opportunities, if I was able to meet friends for coffee. I could just about manage my sadness over never quite feeling confident enough to accept meaningful date invitations, over fears that I would inevitably become a burden, if I could buy my mum dinner instead. I could just about manage my horribly messed up body image, if I could actively plan events to look forward to throughout the year and perform well academically. You get the idea.

So, you can imagine how difficult it was when everything fell apart simultaneously, leaving me with nothing but time to think and fall down the rabbit hole. First, I had to watch as society at large complained about missing out on the various aspects of life that have always been inaccessible to me. For example: I have never been into a nightclub, simply because I am terrified about what might happen in the event of an emergency. Besides, being invisible in a crowd full of drunk people is not my idea of fun. Speaking from experience, it’s very easy for people to forget that I exist when they feel like the responsibility of looking after me will prevent them from having a good time. Then, as life started to regain a semblance of normalcy that I couldn’t participate in, my friendships also became more distant. The negative voice from inside of my head was getting increasingly loud, so it felt as if I no longer had anything to talk about with these people, or support to offer that would have been worthwhile.

In amongst all of this, after an acrimonious couple of months, I have officially taken an extended break from my studies. At the final hurdle, the university offered me almost no support. After making a formal complaint, it has since emerged that this is largely because they don’t know how to properly help their disabled students, particularly during times of crisis. This whole experience was awful, to be honest. I’m still working through the damage that it incurred to my sense of self. Still trying to reassure myself that my existence isn’t pointless without academic validation. But this, combined with everyone’s approach to the pandemic, did allow me to realise one thing: I have been misunderstood and bullied by people throughout my entire life, really only because they have never been given the tools to accept diversity without question. It’s impossible for them to associate disabled lives with anything positive, if they have never been shown any examples. So, that’s what this blog aims to do, alongside helping any other young disabled people that this might reach. You are not alone. Maybe, I’ll even learn to heal myself along the way, too. Yes, there are parts of myself that I don’t have a good relationship with. But I’m learning that it’s because I don’t have any reason to fight against those ideas right now, on a societal level. In the meantime, I will be my own voice for change.

So, check in with your chronically ill and disabled friends right now. Stay safe. Also, please don’t be afraid to ask questions. Conversation is never a bad thing, when it comes from a place of wanting to do better. Besides, I am exhausted by feeling like such an important part of my life and identity is somehow taboo. One blog post at a time. xxx