One of my greatest flexes in life is my ability to write with my mouth, I lost the function of my hands to write when I was around 5 or 6 I have memories of textas being sticky taped in my hand but that’s the only memory I have of deterioration of my hands, I believe I was taught how to write with my mouth by my Teacher assistant jane , today I decided I would attempt to write with my hand only to have this hilarious result.
My greatest party flex is my different ability to write, I work as a presenter in schools for a fairer world about the negative affects of discrimination by creating a safe space for students ton ask all there burning questions for those who are differently abled, gender or other varied characteristics of people who are often the victims of taunting because people become to scared to be open and curious so I instruct students to try writing with their mouth as an inclusion activity to give them insight that we all have inner strength when we lose function or ability or we need to adapt because life is all about adapting and those with SMA are the biggest representation of this that we are differently abled but refuse to give up because we can teach each other about what has made our life’s easier as all our journeys are so unique, upon this train of thought I wish to take the opportunity to discuss my recent personal challenge in addressing my optimistic you can no matter what challenge you’ll find a way well this has created a barrier with Occupational therapists as they ask what my functions are and automatically I state I can knit, sow, do my makeup, my nails, feed myself and the list continues but when I need to state my limited body mobility I struggle massively to state this as reality is that I have full function of my neck and mouth, fingers and can move my right toes (this is the same function since I was 10 so its no big deal for me because I’ve adapted and accepted my limited body function) but as Ot they would struggle to note all of this as the medical model states this and that essentially an 18 month old has greater range of motion than myself but I portray capabilities which are often only seen at home as in the community I look friendly but uncapable, whilst at dinner last weekend a lady had a chat with me that she valued my strength that I was inspirational (I was feeding myself) and rather than be offended I took the dreaded perceived amazing human in a chair as inspirational because maybe I am in the aspect I’ve refused to be unable, chosen resilience, optimism and being differently abled as the norm for me.
Writing with my mouth
Side by side (hand left, mouth right)
