Accepting Help as a Disabled Person

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

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

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

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

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

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

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

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, Owen, 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. Owen 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

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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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