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

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