I was born rare. I have a rare disease (a rare physical disability, Congenital Muscular Dystrophy, MDC1A). I have a rare mind and heart. I unlearn (and relearn) everything and love everyone daily in a rare way. I founded (and run) a rare business. And I live and give energy in a rare perspective.
Congenital Muscular Dystrophy is one of 7,000+ rare diseases in the world. The World Health Organisation estimates that one in seven people are impacted by a rare disease. 1 in 17 people will develop a rare disease at some point in their lives. Today 400 million people in the world – and 3 million in the UK – have a rare disease. But I love what my dear friend @tanvivas wrote today: “I'd say I'm rare but not diseased but hey!”
I often find that every day is a struggle, but I’m a continual work-in-progress. I’ve decided to “just be” daily in as I am, wherever I am, and in whatever capacity I am. So, I am becoming who I needed when I was a youngster, and I will be my own hero, no matter what anyone thinks.
Also, I am questioning everything and creating rare, radical spaces for me (and others with rare diseases, especially for those of us who are SDQTBIPOC and minoritised in many ways) only for us where we can just be and build magic together that’s filled with #DisabilityPleasure and #Cripjoy.
As the Indigenous community (#IndigenousLivesMatter & #IndigenousDisabledLivesMatter) best articulate: “our existence is resistance.” This is my mood for today. For (and because of) me, as my disability DOES define me, but it does NOT confine me. ONE BREATH AT A TIME: NORMALITY IS A CROWD-SOURCED, ABLEIST FANTASY. And I refuse to be ableism’s commodity.
[IMAGE DESCRIPTION: Sulaiman (a South Asian #Disabled man) and is laying in bed. He is wearing his new Bunny Oodie (“like a jumper crossed with a blanket crossed with a cloud”) via @the_oodie, and he feels calm.
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