For those who don’t know me - I was diagnosed with Spinal Muscular Atrophy at 18 months old and have been in a wheelchair since the age of 11. To explain it in a nutshell, basically, humans have an SMN1 gene that produces protein for your motor neurons, this helps with movement - like walking, moving arms, etc. We also have a backup gene called SMN2 which produces the tiniest bit of protein - people with SMA don’t have the SMN1 gene, it’s either deleted completely or severely damaged. We do have the SMN2 gene but it obviously doesn’t produce enough protein for our muscles to work normally. Therefore it causes extremely weakened and atrophying of the muscles. It’s a degenerative disease so you do deteriorate/atrophy at a faster pace. Thankfully, I’m on treatment that somewhat stops the progression - so thank you science!
I guess the overall point of these ‘blogs’ I’m writing is to possibly bring a sense of normalization and awareness to the Disabled experience. Especially since our community continues to be ignored and marginalized throughout history. I want able-bodied people to step outside of their own ‘norm’ and really come to the table when it comes to Disability awareness and the discrimination and ableism that continues to happen. We are so caught up living in our own ‘normal’ that we forget the different needs, life experiences, struggles, and perspectives of others. Even though we all have our own type of normal, we need to realize there is no right way to live your life, and there is no wrong way either (unless you are inflicting or causing pain, judgment, hatred, or negativity to others or yourself). We all have different experiences and that’s something we all have in common. Our differences unite us, make us stronger, and will always bring a constant flow of new ideas to the table and that causes us to be forever adapting for the better good.
On that note, people who have disabilities will have a variety of different needs and life experiences, so I am not speaking for every disabled individual. Although I do believe there is no such thing as ‘NORMAL’. We as humans need to realize we will never be the same, not everyone will see eye to eye, or understand our own type of norm or how we do or go through on a daily basis. But like I said, that is our strength. Our differences make us who we are; if we all thought the same, looked the same, or endured the same life experiences we would never progress, we wouldn’t be able to learn from one another. We wouldn’t be able to acknowledge and embrace those with different needs or show empathy for those who have it worse.
I guess I want to help broaden people’s perception of others living differently from them or instill a sense of comfort for those in the disability community, or even a sense of relief that everything will be okay because everything happens for a reason, mistakes do not exist. You were meant to be here; your struggle makes you so much stronger. Earth is one of the hardest dimensions to live on, so if you’re still breathing, then that is the biggest accomplishment you have achieved so far.
When you start to realize that every day when you wake up in the morning and you're still BREATHING and realize you're still ALIVE, your perspective will switch. If your struggle is unbearable, remember that you were placed on earth for a reason, not saying you deserve what you’re dealing with/going through, but when you go through a real struggle just to live, you expand your strength to deal with things, you are forced to live in a world that wasn’t built for you, and that in itself shows how powerful your being is. Not everyone can do what you do, or deal with what you’re dealing with. You could easily give up, but you don’t. Keep that at the forefront of your thoughts every single day, because trust me, when you finally realize that you weren’t just placed here to “struggle”, that you were placed here for a reason: to learn, grow, to elevate, to share your life experiences and your sense of awareness with everything around you, the smallest rewards will end up feeling like the biggest gift in life.
In saying that - that doesn’t mean we should accept the behavior and discrimination from others who continue to not see us, if anything it’s the ‘go ahead' to not take any bullshit. To keep showing up, to continue believing you’re worthy to participate equally in society, to continue to fight for equality for every single marginalized group. If I know one thing about us marginalized peeps, it’s that we don’t give up without a fight. Awareness is change.
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