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#MyBlindStory

  1. What is Art Worth to a Blind Painter?

    July 14, 2021 - By Kimberley Burrows

    It is often said that “a picture is worth a thousand words,” but what is art worth to a blind painter? I’m Kimberley and I was born prematurely with underdeveloped optic nerves and congenital cataracts that were overlooked until I was four years old. I lived with severe sight-impairment, with only a small visual field in my left eye, until I went blind in 2018 through double retinal detachment. I now suffer with ongoing high pressures in both eyes, with frequent ocular migraines, and have a small shard of light…

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  2. Evolution and Inclusive Language: Creating a New Term for Visual Disabilities

    June 16, 2021 - By Brian Switzer

    The terms we use carry with them significance. They can denote power and strength, or they can also denote weakness and other negative biases.  As a society, we have become more aware of the power of language when describing people who may identify in ways that are marginalized. Even better, we have been adopting language created by those people themselves.  I am a DeafBlind person. This is just one aspect of who I am – I’m also a husband and soon-to-be dad, a graduate student, an instructor at Perkins School…

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  3. Dance Beyond Boundaries

    June 2, 2021 - By Samantha Ambrico-Custer

    I open my eyes but see nothing. I feel the smooth marley floor under my feet and gently move my toe over the tactile marker on the ground. The music begins to play, and light begins to flood my field of vision. For a moment, I am disoriented. I take a few steadying breaths and begin to move. I trust my body. I trust my knowledge of the stage. I allow my proprioceptive instincts to carry me; these instincts let me know how far and which direction I move. With…

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  4. Insensitive: My Humorous and Insightful Journey with Sight Loss

    May 19, 2021 - By Marci Neal

    For the past 12 years I have experienced sight loss through macular degeneration. When the pandemic hit last year, I found myself with time on my hands and decided to journal my journey with this life challenge in the form of a podcast called Insensitive. So I have been busying myself with the latest episode. Ahh ha, now I’ve got your attention haven’t I? A podcast! When I was in my early 40s, I started having difficulty with my sight. I have had high myopia (severe near-sightedness that, if left…

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  5. There Aren’t Any Shortcuts to Make Beautiful Things

    May 5, 2021 - By Ana Cristina Bautista

    My name is Ana Cristina and I’m a deafblind jewelry designer. I am 40 years old and I haven’t ever felt as blessed and complete as I do now. But it took me some time to get here, and this is my story. The long road to diagnosis It was 2 p.m., our calculus professor wrote an equation on the board for us to compute mentally: no papers, no calculators. Just our eager young competitive brains crunching out numbers, because whoever won this round got extra credit plus pizza.  I…

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  6. help2type: Tech to Make Smartphones More Accessible

    April 21, 2021 - By Marcel Roesch

    I’m almost blind, with eyesight of 1%. When I try writing on my smartphone using the common touchscreen, it takes forever. I’m sure you know this feeling! Also, I’m always short on time.  For example, when I get up in the morning and would like to answer some important messages or emails first thing, it could lead to me missing my train or subway to work. Naturally I’m aware of the dictation function on my smartphone and the possibility of using the braille input, but I don’t think anybody feels…

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  7. Action Is the Antidote: Reviving Hope in Hard Times

    April 7, 2021 - By Revey Hertzler

    My word for 2021 was heal. 2020’s was connect. Instead of resolutions, every New Year’s Day I choose a verb to live by for the year. After an isolating pandemic and inherited retinal disease (IRD) diagnosis, both words seem wildly ironic. Last month – weeks after losing my dad unexpectedly – I was diagnosed with a rare inherited retinal disease called Stargardt’s. Affecting roughly one in 10,000 people, Stargardt’s causes progressive vision loss and eventually blindness. This disease, like many others, is the result of a genetic mutation. There was…

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  8. See Us: a Project 10 Years in the Making

    March 24, 2021 - By Jon Marin

    I’m Jon Marin, author of the soon-to-be-released book See Us, a photographic journey that follows six visually impaired young adults as they balance their lives among work, home, and school in New York City. I had the pleasure of connecting with these students during their time at Career Discovery Project, the program I lead at City Access New York. Building a career program that works for students When I was informed that I would take over the Career Discovery Project in 2014, I was petrified. Too many negative thoughts were…

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  9. A Mom, Memes and an Innovative Way to Raise Money for Assistive Tech

    March 10, 2021 - By Jolandi Gevers

    Braille literacy is so important to visually impaired kids and yet it can be prohibitively expensive to get books in braille. This is a real problem for my two bookworms Hannah (10) and Daniel (7). They were born with Leber’s congenital amaurosis and therefore blind from birth. Not having the same access to books as other children is a real frustration for Hannah especially. She now has grand plans to open a Braille bookstore in the nearby mall so that kids and people like her can get access to Braille…

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  10. My Vision for a Better Boston

    February 24, 2021 - By Alex Gray, Candidate for At-Large Boston City Council

    When I was really young, I knew I was going to grow up to be the next great Boston sports athlete. I was thinking Mo Vaughn or Drew Bledsoe. Mind you, this was back when we loved our teams but they never won anything. My dreams changed when I was eight years old and I began to lose my vision. It started in my left eye, then moved to my right. By the time I reached middle school, my dream of playing professional sports came to a sharp end. For…

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