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

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.

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

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