how I am learning to come to terms with my disability and the consequences of a few hours of 'normality' with a friend... (plus two poems because me just writing would be boring)
Well, there was something in the air today wasn’t there? Brilliant post. Brilliant poems. Health seems so far away. And darn that internalised ableism. I did think about pimping my toilet aids (to help me on and off) but never actually got around to it. I love your pumper rollator look.
From my past experience I can relate to much of what you describe, but my life is not like that anymore. Each of us has our unique journey, and your situation encourages me to finish my healing memoir in the hope that some might gain insight into other options for adaptability from a disability.
Thank you for sharing this inspiring post and insightful poems, I love your pimped up mobility aid. I find the forms difficult. I had to tick a box declaring my disability in a recent census that wasn't ticked on the previous one, and that stung a bit.
When I needed a cane due to my chronic illness progression I bought the coolest one I could find. But quickly I was disappointed by it “just being teal and purple” so then I pimped it myself. It’s now covered in a pattern featuring Tigger.
My Tigger cane gets comments all of the time and I frequently gather children more efficiently than the Pied Piper of Hamelin.
I needed to use a Lofstrand (forearm) crutch for awhile. I got one with cool patterns on it.
I have worn glasses most of my life, and I think of them as a part of me that helps me function and express who I am. I view my other aids the same way.
I definitely think it’s hard to avoid internalized ableism. Societal and systemic ableism are omnipresent, so most of us were steeped in it for years and are fighting to break messages from both the past and the present. I believe that we can make a difference and that pieces like yours are good examples of ways that change happens. So thank you SO very much for sharing this. ❤️
The internalized ableism is no joke—I worked so hard to convince especially my parents that I was fine and not progressing, so they wouldn’t feel bad. That said, I loved my Rollator wheelchair until my husband started fighting with it because the wheels are crappy on uneven pavement. Now I have a hybrid wheelchair, which was hard to buy but has helped alleviate my FOMO. And he swears a lot less at it!
I’m stubborn enough (see also: internalized ableism!) that I want to push myself around sometimes but the power part is REALLY useful when I actually want to go somewhere quickly. This is what I got (in the US)—it fits in the boot of a normal car.
I really appreciate reading both your and Tam's essays on the same day. Though I know it's not the same thing, living in a neurodivergent household (finally being aware that's what it is) for the past few years has also led to a lot of self-doubt. (Is it wrong to only buy their safe foods? Is it okay to make three different meals? Am I selfish for wearing noise-canceling headphones when I am totally overwhelmed?) I'm getting closer to understanding that doing things that help my people thrive, even if they are not "good" in the eyes of society, is so much better than trying to squish them (and yeah, me) into an NT mold.
Anyway, I don't want to make it about me. I'm just glad to have your essay with me 💛.
It's perfectly acceptable to make it about you, it's not just my problem, it's something faced by manly, including neurodivergent people too!! Thank you for sharing x
I'm not able to read much on screen these days, but hopefully soon I'll be pimping it up with an e-reader. I look forward to reading this when that happens. Thanks for the mention and all the best! Hal
Well, there was something in the air today wasn’t there? Brilliant post. Brilliant poems. Health seems so far away. And darn that internalised ableism. I did think about pimping my toilet aids (to help me on and off) but never actually got around to it. I love your pumper rollator look.
Definitely!! Thank you, and get pimping, I can highly recommend it!! :)
oh, you're fucking incredible!! 🙌 😇
Thank you!! 😁
From my past experience I can relate to much of what you describe, but my life is not like that anymore. Each of us has our unique journey, and your situation encourages me to finish my healing memoir in the hope that some might gain insight into other options for adaptability from a disability.
I identify with much of this! Great pimping by the way! 💛
Thanks so much!! ☺️
Thank you for sharing this inspiring post and insightful poems, I love your pimped up mobility aid. I find the forms difficult. I had to tick a box declaring my disability in a recent census that wasn't ticked on the previous one, and that stung a bit.
Thanks 😊 Yeah it's hard to look back and see how much we've changed... Not always good!
I find looking back on photos of smiling faces difficult, I really want to get past that.
Oh yes, I hear you!!
I love your “pimped” ride!! It’s fantastic
When I needed a cane due to my chronic illness progression I bought the coolest one I could find. But quickly I was disappointed by it “just being teal and purple” so then I pimped it myself. It’s now covered in a pattern featuring Tigger.
My Tigger cane gets comments all of the time and I frequently gather children more efficiently than the Pied Piper of Hamelin.
I needed to use a Lofstrand (forearm) crutch for awhile. I got one with cool patterns on it.
I have worn glasses most of my life, and I think of them as a part of me that helps me function and express who I am. I view my other aids the same way.
I definitely think it’s hard to avoid internalized ableism. Societal and systemic ableism are omnipresent, so most of us were steeped in it for years and are fighting to break messages from both the past and the present. I believe that we can make a difference and that pieces like yours are good examples of ways that change happens. So thank you SO very much for sharing this. ❤️
Thank you so much for your comment, your Tigger cane sounds fabulous!! :)
The internalized ableism is no joke—I worked so hard to convince especially my parents that I was fine and not progressing, so they wouldn’t feel bad. That said, I loved my Rollator wheelchair until my husband started fighting with it because the wheels are crappy on uneven pavement. Now I have a hybrid wheelchair, which was hard to buy but has helped alleviate my FOMO. And he swears a lot less at it!
Yeah the wheels aren't that great and my husband also does a lot of swearing!! A hybrid one sounds good, I'll have to look into one of those!!
I’m stubborn enough (see also: internalized ableism!) that I want to push myself around sometimes but the power part is REALLY useful when I actually want to go somewhere quickly. This is what I got (in the US)—it fits in the boot of a normal car.
https://mobilitymedicalsupply.com/model-h-hybrid-manual-and-power-chair-in-one/
That looks amazing!!
That second poem is a heart-breaker.
I really appreciate reading both your and Tam's essays on the same day. Though I know it's not the same thing, living in a neurodivergent household (finally being aware that's what it is) for the past few years has also led to a lot of self-doubt. (Is it wrong to only buy their safe foods? Is it okay to make three different meals? Am I selfish for wearing noise-canceling headphones when I am totally overwhelmed?) I'm getting closer to understanding that doing things that help my people thrive, even if they are not "good" in the eyes of society, is so much better than trying to squish them (and yeah, me) into an NT mold.
Anyway, I don't want to make it about me. I'm just glad to have your essay with me 💛.
It's perfectly acceptable to make it about you, it's not just my problem, it's something faced by manly, including neurodivergent people too!! Thank you for sharing x
I'm not able to read much on screen these days, but hopefully soon I'll be pimping it up with an e-reader. I look forward to reading this when that happens. Thanks for the mention and all the best! Hal
Sorry to her that, but what joy the ereader will be when you get that!! 😊