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Navigating Blindness

Clarity for families navigating blindness

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Tag: Scleroderma

The Value of a Disabled Woman

I’m excited (and a bit nervous) to share a very vulnerable piece of our family’s journey which was published in the June 2019 edition of Captivating! Magazine.  The article is titled “The Value of a Disabled Woman.” Continue reading “The Value of a Disabled Woman” →

navigatingblindness Acceptance Leave a comment June 17, 2019February 1, 2022 1 Minute

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Navigating Blindness on Instagram

Parents, please listen to these important words from Kai on developing self-advocacy skills. Hi, it’s Kim & I’m attending the ASPECT Patient Engagement Summit and Eyes on Capitol Hill Legislative Advocacy Day! Great resource alert! Hi, it’s Kim. I’ll  be in DC Monday, June 8 for a special event and you’re invited! Hi, it’s Kim & I have a navigation question for our blind friends who live in big cities. Kai and I noticed that our GPS kept bouncing around between buildings when we were on the streets of Chicago. Our first time in Chicago was a hit! We were celebrating Kai’s college graduation + my birthday. Such a beautiful city! This is a picture of Kai’s mini braille slate & stylus. He inserts an index card and uses the stylus to punch tactile braille dots from right to left (mirror image). When the card is pulled out and flipped over the dots can be read from left to right by hand. Hi, it’s Kai! While a lot of Braille is digital/refreshable these days, sometimes good ole paper is the best option. Here is a picture of my Braille set list taped to my bass drum at this  past show. When I’m presenting a concert, I like to have my own set list, so I have the info and can make calls to skip or change things as needed. I made this set list using a slate and stylus, which is a tough system for an infrequent user like myself, requiring each dot to be punched by hand, from the back of the sheet, thus writing in a mirror image.  There were certainly a few typos, but it got the job done without the hassle and risk of digital options on stage. I was honored to read an excerpt from my essay The Shape of Grief on the Coffee, Grief & Gratitude podcast hosted by author Anne Grudger and her daughter Maria.

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