Having a disability that progressively gets worse over time isn’t all sunshine and roses, but it’s not as depressing as you may think, Disability changes a person from the way you think to how you see the world.
If you’ve not read anything I’ve written before now and unsure of what Muscular Dystrophy is it’s a disease that weakens my muscles from my arms to my legs as well as other parts of my body like my lungs and heart, it will continue to worsen as long as I live old age is probably not on the cards for me, but that’s ok I will live my fullest life the best way I know how because my disease isn’t a tragedy.
Going from being able bodied to then being diagnosed with having Muscular Dystrophy I did struggle at the beginning i spent a long time trying to get my head around the changes my body was going to face, it was mentally challenging at time and scary as I had watched my mum go through the same challenges but eventually, I came to realize something important: it’s totally okay to be disabled. For me, being disabled is a huge part of my identity now! This comes across as a surprise to a lot of people, funnily enough. But I like who I am, and having this disease has definitely shaped me into the person I am today.
Perspective of an observer
I spend a lot of time watching, it can be easy sometimes as no one really notices you sitting quietly observing, I notice a lot more than some people think, it’s helped me see just what goes on around me seeing how other treat one an other, watching how people can be so quick to make judgements on others, to how the slightest thing can make someone react when really it’s nothing, watching happiness and kindness that others can have for people they know or people they have never met before, which has taught me to be a better person.
It’s made me want to write
My words are something my disease can’t touch, I learned to use them to help me granted I’ve gotten better at writing as each post Is written, I really don’t know if I would have gotten into writing like I do now had It not been having Muscular Dystrophy, but I do know that its definitely what motivators me today. Writing has become such a huge part of who I am now and something that I’m very proud of, its brought me so much joy from the new friends I made, plus opened up so many different new opportunities, i hope to continue to write about my life with a disability for as long as people like reading!
The planner in me
As spontaneous as I was when I was able bodied that’s definitely something I can’t do these days like most people, many places and events aren’t accessible so can take a lot of work just for me to wheel out the front door, the good thing about that is I’ve become a pro at planning and organizing ‘list are my best friend; and that’s never a bad skill to have.
It taught me how to advocate for myself and others
If you’re disabled, you’re going to have to advocate for yourself. Ableism is everywhere, and it’ll be something you have to deal with in school, at work, and just a day out with friends or family. You can take it or you can speak up for yourself, and I don’t know about you, but I’d rather speak up. Unfortunately, there are a lot of people who can’t, and that’s made me passionate for advocating for others with my writing.
Becoming an advocate for myself and others
Being disabled I’ve had to learn how to advocate for yourself, Ableism is everywhere it’s something i have to deal with a lot in life, sometimes just a quick trip to your local shops your faced with someone thinking it’s ok to say something, You can take it with a smile or you can speak up for yourself and if you know me saying nothing isn’t me so with a smile I’ll try an re educate. Unfortunately there are a lot of people who can’t that’s why I’ve become very passionate aboit advocating for others whether it’s though my writing or campaigns I’m proud to be apart of.
Determined to still be independence but also Comfortable asking for help
I’m not really one to ask for help I’m pretty stubborn that way but I’m definitely learning how to ask for help without feeling ashamed, it’s given me a fierce determination to keep what independence I still have I feel it keeps me on my toes to say!
But in the same sentence i no that no one can do everything on their own able bodied or Disabled, I rely on others for so much that if there’s a chance for me to do something on my own, I’ll do whatever it takes to figure out how to do it.
If there’s anything I want people to get from this it’s that being disabled doesn’t equal being unhappy, it’s definitely possible to embrace your disability. Muscular Dystrophy has shaped me into the woman you see before you today and I’m proud of who I’ve become.