Did I hate being disabled?

G’day, friends and welcome back to another week and another blog post! If you are new here, welcome, if you have been here before, welcome back!

Within the disabled community, like with any community, there is conflicting information and opinions. The difference of opinions in how to handle things is fine! What isn’t okay is having extreme opinions that are pushed on to others to make them feel negatively about themselves or feel as though they have no other option but to join the crowd.

I am ashamed to admit that I have fallen into the trap of changing what I have said about how I view disability and my disability because I feel like the other person wants me to say something different. Struggling with self-confidence growing up will do that to you!

However, I feel I am in a place now where I can speak my truth (so the saying goes) and be honest with the age-old question – do I or did I hate my disability?

I have always been vocal about my love-hate relationship with my disability. At times it amazes me, and other times it terrifies me. It’s almost like you are dancing with it, it is the one thing that never leaves your side… ever.

Growing up, boy, did I hate being disabled. Seeing all the kids playing and running around during lunch times, and I was so desperate to join in, I would try my hardest to catch up or call dibs on the flying fox. This ultimately resulted in face-planting into the sand because I tried to do the flying fox the ‘standard’ way instead of my way, gripping both hands together and flying sideways instead of front-on. What can I say I was stubborn as a child, and that still is a thing today, and it served me well enough entering doctor appointments and constantly trying new things.

I danced for 12 months and did drama for 7 years both in school and outside of school, until eventually, either my disability would rob me of that physically, or it would rule my mindset and the little voices in my head told me it was stupid for someone with MD to do those things.

As my disability started to progress, my body also started changing. As it always does when you enter your teenage years. But my condition started majorly declining. I relied on my scooter to get around more, I couldn’t sit on the ground any more, my arms were getting shorter, my walk becoming more pronounced, and my sway back and tight Achilles were making itself more well known. Then I had scoliosis surgery, meaning I sat upright. I tried desperately to be invisible, but my disability made it nearly impossible!

I would see people my age taller and thinner, the idea of what a woman should look like plastered all over magazines, on billboards, in movies. I never saw myself, I never saw a disabled, more than 10% body fat woman. I only saw what society almost expected me to be.

Ultimately it added fuel to the self-hatred I had for myself. Add on the bullying, I was told I was ‘too clingy ‘too needy’, ‘needed reassurance’ and ‘annoying’. I was referred to as ‘it’ and ‘retard’ by someone I thought was my friend. It ultimately was dehumanising. I didn’t feel human, I didn’t feel seen, valued, respected, or understood. Instead, my disability made me feel like I was a massive problem that people wanted to be free of.

You can easily see where that mindset can easily lead to. And it did for a long while. I hated myself, my disability, my life and the voices in my head believing what everyone said about me.

Then add on what people within the disability community was saying to each other ‘if you say you hate your disability, you are ableist’ ‘hate all abled bodied people, they are responsible for your suffering’ ‘always say you love being disabled and that you are grateful, otherwise you are letting the disability community down’. So I tried my absolute hardest to always be positive about my disability, and to say all the ‘right’ things to keep my community happy.

But instead, I wasn’t being true to who I was. I was ultimately ignoring how I felt about my life, my self, and the world I live in. I am the only person in my family with a disability. I have family friends who are disabled, but for the most part, I grew up in an abled bodied family, and an abled bodied society. And to be honest that didn’t bother me! Sure at times, I got frustrated when things weren’t accessible, or told that I shouldn’t be doing things. But that is just how life goes! Why wouldn’t I be honest about my love-hate relationship with my disability?

I feel toxic positivity is just as bad as negativity. It leaves you in denial about what is truly going on, and admitting that things are hard. And yes of course that is a terrifying thing to open yourself up to! It feels like you are drowning, its overwhelming because the truth hits you like a truck. I have been there, and I have got over the other side of that overwhelming drowning feeling of admitting that sometimes being disabled does suck. And that is okay to say!!!!

Safe to say, it took me such a long time to start overcoming all those mental demons, embracing my disability (the good, and the bad and admitting that to myself!), and seeing it as a pillar of myself, not as me entirely.

So do I still hate my disability? Truthfully? No I don’t. But do I absolutely love it? No, I don’t. I am absolutely without a shadow of a doubt grateful for everything it has taught me about life, the good and the bad, giving me a pathway in a career that I don’t think abled me would have even considered doing! Do I say that I am the unlucky one? yes at times I do, because at times I do feel unlucky, not being able to experience everything I want to, and having to live vicariously through my abled bodied friends and family. And it is okay to say that!

If there is anything i hope for the rest of the disability community is that at times we are our own worst enemy. There is nothing wrong with wanting to experience or wish for a life that is different from their own. Every human does that regardless of disability. So I hope in time, for every single human with a disability, that we continue to raise each other up, support each other, listen to each other, see each other! Not rip each other apart when we say how we feel about our disability on any given day. Kindness, compassion, and empathy will always win!


1 thought on “Did I hate being disabled?”

  1. Muscular dystrophy is a difficult disease. Mobility aids can alleviate problems but not solve them definitively.
    Families, friends, doctors and therapists offer help and support but unfortunately they cannot solve the really crucial problems. Constantly one is confronted with the loss of own physical abilities in addition, again and again with the
    topic of death. Not to forget all the other disabled people and friends you have met over the years and who will die before you.
    There are a thousand goodbyes.

    If I wrote a book about muscular dystrophy, it might have one the following titles:
    1. My vain attempt to arrive in the disease
    2. How stubbornness helped me to achieve things that no one believed I could do
    3. Trying to understand muscular dystrophy and to arrive in it
    4. Travelling without destination and arrival
    5. My doctors and therapists committed suicide out of sheer desperation [dark sarcasm; irony]

    I hope, everybody who reads this, stays safe and sound.

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