Growing up it was very much an non-disabled world from a child’s eyes, it wasn’t the topic of conversation over the dinner table and I think that’s how my mum wanted it to be, not for any reason of being ashamed but more to show my brother and myself that even though she had her own struggles with muscular dystrophy we could still live a relatively normal life.
My disability wasn’t noticed until my late teens and mid twenties was my first walking aid.
Apart from having a physical disability myself looking back on my childhood other than my mum I didn’t know anybody else who was disabled or had a disability, there were no disabled characters in any of the TV programmes I watched, I didn’t have any other friends with a disability plus you the school curriculum doesn’t teach you anything on disability history.
Admittedly i was still very blasé carrying on with life still not really knowing very much about the disability world and the struggles with unaccessible homes, shops, toilets or the constant battles for vital equipment. Even though both my mum and brother had muscular dystrophy my mum never showed us the struggle of everyday life with a disability. I am i awe of my mum’s strength I definitely take my strength from that.
Was it wrong or selfish for me to have lived such a blasé life?
My real waking moment and I guess that burning fire you need was my own struggles when I was diagnosed with muscular dystrophy myself at twenty four. Realising just what my mum, brother and thousands of others with disabilities have to go though and fight for. Was it wrong or selfish for me to have lived such a blasé life in my beginning years knowing that my mum and brother are both disabled. No, I don’t think so, it not like I didn’t have any interest it’s my mum and brother I love them so of course i did, I just never would have truly understood their struggles, plus I grew to be the person I am today because of everything I have been though not because of what others have been though, the only difference is now I can relate.
I fight for disability rights so the future me’s aren’t fighting for the same reason I am today.
Before the age of social media and google it wasn’t as easy as it is today to read or hear about others with disabilities, so yes. I feel very blessed to be in an era where so many influential disabled role models exist, for all it’s flaws the internet and social media platforms have given some truly amazing disabled individuals a way to shine for the world to finally see them as they should be seen as human beings and not their disability.
What would the now me say to the past me absolutely nothing. Why, because I don’t regret my past my past is just that my past. Yes it has shaped me to be the person and campaigner I am today but then so has watching the struggles of others and my own.
Personally, knowing what I know now and just how hard other disabled people fought for the rights I have today makes me, as a campaigner, want to fight equally as hard – if not harder. To ensure the future generations never feel vulnerable, ostracised or left struggling and wanting for what they are entitled to. My mission is to make this world a more equal and safe world to live in.
For the non-disabled world let’s face it you will never truly understand what it is like to be disabled or have a disability that I can understand. but it also does not mean as human beings we can’t learn – educating the next generation to know more about the disability world and it’s past, present and future, it’s long of due to re-educate and overcome ignorance as disabled people are still very much still used as scapegoats and mocked
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