Disability and Determination is a weekly newsletter about my experience living with a rare disability…with a little bit of meditation, pop culture, and other random things thrown in.
Oh my goodness, thank you for including me! I'm so honored. These interviews can make a person feel terribly vulnerable but Kim was wonderful, and what's needed more than ever in the disability and epilepsy community is greater cultural visibility--so that we can feel less alone and more at home in the world and in our skins :) I loved Reading Rainbow and LaVar is a national treasure--I definitely need to watch that doc!
I vaguely remember Reading Rainbow. Mr. Rogers Neighborhood and Sesame Street were the shows I remember and the ones I remember watching. But I do kinda remember the RR theme song. Never heard of that other one, though. LOL And I was ALL OVER those Scholastic Books like white on rice. I doubt they're doing that in schools anymore these days. In the sales biz, I've heard that we have to see it/read it 7 times before it's absorbed. So. There's that.
Mr. Rogers and Sesame Street were definitely on regular play here too! LeVar Burton actually was on a couple of episodes of Mr. Rogers too which I learned in the documentary. I think that's so spot on that you have to read things 7 times before it's absorbed. I think as I near 40 though, that might be more like 7-10 times though lol.
I get what you’re saying about self help books not always sticking. I’ve read a few that everyone said to read and was underwhelmed. But then when i went back the second time, the lessons started to make sense. That’s what happened with Master of Change.
It's so true. As an editor/proofreader for a living, I should know that going back and rereading something can be very valuable, I'm just not always great at exercising that practice outside of work lol. But I'm working on it. I definitely need to check out Master of Change. There's been more change in my life in the past 4+ years than ever and I could definitely use some help in navigating/managing it better.
"Practice makes perfect," they say. But my yoga teachers would remind it's about, "Progress, not perfection." I've been doing yoga pretty steadily since lockdown, but I can't say I've improved as much as one might think one would with four years of steady practice. And I believe I know why: I'm doing it alone. There's no one there to push me, to give me a chance to safely fail...or succeed. We need that assistance. People who will give us the courage to try something new, hold us steady, catch us before we fall, see our potential, encourage us to try again. That's some of the reinforcement we need. (And I know I sound totally ableist here with that analogy and I apologize.) xo
That’s one of the slogans in the program I’m in as a matter of fact. It’s one I have to remind myself of daily for sure. They also reinforce not being able to do it alone which is so so true. Your yoga = my meditation practice too so can totally relate on that 😊
I loved the Scholastic Books. I think I ordered more of them than the rest of the class put together. When I was 9 or 10, my teachers would have me process the orders and count the money, which I thought was very fun.
In my special ed school, we didn’t have a library. We had a couple of shelves in a conference room bookcase. I think I read all of those books twice.
I missed Reading Rainbow age wise—I was just a little too old for the format.
One of the things that made me a disability rights activist is that I realized in my late teens that I really had no role models as a child or young adult. Not only no one with my rare disability, but also only objects of pity (Jerry’s Kids) or heroes (Super Crips) rose to public awareness. There should be way more crips in the middle.
I would have LOVED to process the orders and count the money. That's awesome you got to that on top of getting all of those awesome books.
You're so spot on about the lack of role models too. Even today, there's never anyone exactly like me represented if there is any kind of disability representation. I always watched the Jerry telethons too, not even realizing how extremely problematic they were because of their representation of us (pity-inducing as you said). Seeing someone like me represented anywhere would make such a difference. Thank you so much for reading and for the comment!
Oh my goodness, thank you for including me! I'm so honored. These interviews can make a person feel terribly vulnerable but Kim was wonderful, and what's needed more than ever in the disability and epilepsy community is greater cultural visibility--so that we can feel less alone and more at home in the world and in our skins :) I loved Reading Rainbow and LaVar is a national treasure--I definitely need to watch that doc!
You're so welcome and 110% to all of that! And definitely recommend the doc. It gave me some much needed nostalgia and warm and fuzzies.
I vaguely remember Reading Rainbow. Mr. Rogers Neighborhood and Sesame Street were the shows I remember and the ones I remember watching. But I do kinda remember the RR theme song. Never heard of that other one, though. LOL And I was ALL OVER those Scholastic Books like white on rice. I doubt they're doing that in schools anymore these days. In the sales biz, I've heard that we have to see it/read it 7 times before it's absorbed. So. There's that.
Mr. Rogers and Sesame Street were definitely on regular play here too! LeVar Burton actually was on a couple of episodes of Mr. Rogers too which I learned in the documentary. I think that's so spot on that you have to read things 7 times before it's absorbed. I think as I near 40 though, that might be more like 7-10 times though lol.
I get what you’re saying about self help books not always sticking. I’ve read a few that everyone said to read and was underwhelmed. But then when i went back the second time, the lessons started to make sense. That’s what happened with Master of Change.
I also loved reading rainbow!
It's so true. As an editor/proofreader for a living, I should know that going back and rereading something can be very valuable, I'm just not always great at exercising that practice outside of work lol. But I'm working on it. I definitely need to check out Master of Change. There's been more change in my life in the past 4+ years than ever and I could definitely use some help in navigating/managing it better.
"Practice makes perfect," they say. But my yoga teachers would remind it's about, "Progress, not perfection." I've been doing yoga pretty steadily since lockdown, but I can't say I've improved as much as one might think one would with four years of steady practice. And I believe I know why: I'm doing it alone. There's no one there to push me, to give me a chance to safely fail...or succeed. We need that assistance. People who will give us the courage to try something new, hold us steady, catch us before we fall, see our potential, encourage us to try again. That's some of the reinforcement we need. (And I know I sound totally ableist here with that analogy and I apologize.) xo
That’s one of the slogans in the program I’m in as a matter of fact. It’s one I have to remind myself of daily for sure. They also reinforce not being able to do it alone which is so so true. Your yoga = my meditation practice too so can totally relate on that 😊
I loved the Scholastic Books. I think I ordered more of them than the rest of the class put together. When I was 9 or 10, my teachers would have me process the orders and count the money, which I thought was very fun.
In my special ed school, we didn’t have a library. We had a couple of shelves in a conference room bookcase. I think I read all of those books twice.
I missed Reading Rainbow age wise—I was just a little too old for the format.
One of the things that made me a disability rights activist is that I realized in my late teens that I really had no role models as a child or young adult. Not only no one with my rare disability, but also only objects of pity (Jerry’s Kids) or heroes (Super Crips) rose to public awareness. There should be way more crips in the middle.
I would have LOVED to process the orders and count the money. That's awesome you got to that on top of getting all of those awesome books.
You're so spot on about the lack of role models too. Even today, there's never anyone exactly like me represented if there is any kind of disability representation. I always watched the Jerry telethons too, not even realizing how extremely problematic they were because of their representation of us (pity-inducing as you said). Seeing someone like me represented anywhere would make such a difference. Thank you so much for reading and for the comment!