Art, absurdity, and #BlindGirlProblems
Story by Aitana Yvette Mallari
Photos by Summer Sorg
It was a #blindgirlproblem—Not noticing the stove was on, Rachel Fisher placed the lid of her crockpot over a burner.
“I had never seen plastic melt in such a way,” she says, laughing.
It’s a candy-coated kind of laugh, usually found in leaf piles and the tops of birthday candles, not so much anecdotes about visual impairment. But these #blindgirlproblems, as she and her friends have dubbed them, are all about enjoying the absurd in the everyday: things like getting addresses wrong, or miscalculating how far away an object is, or realizing that the sweet couple walking down the street with their child was actually just an old woman and an unrelated man carrying a folding chair (which really happened to Fisher). She might’ve lost a crockpot, but she did gain another story to tell and laugh about, and that was fine by her.
It wasn’t always like that.
A Liability
Rachel Fisher has Stargardt’s macular dystrophy and retinitis pigmentosa, the former being a genetic eye disorder that causes progressive vision loss. Although symptoms of Stargardt’s occur in childhood, Fisher wasn’t diagnosed until she was 15.
A high schooler in Cicero, Illinois, she had gone to get her driver’s permit and was sent to a retina specialist at Wheaton Eye Clinic.
“They hadn’t really diagnosed Stargardt’s during that time,” Fisher says. “The guy who tested me had just gone to a conference that talked about it.”
She learned that the cones and rods in her eyes don’t receive enough blood, so they die. And little by little, Fisher loses her ability to see.
Currently, she has no depth perception—everything is flat. There’s light and shadow, but not a lot of greys in the middle. She has a blind spot in her eye, exactly on her central vision. Her left eye is far worse than her right, a blur of flashes and muted colors, so there’s no dependable remaining vision there. She also has night blindness and uses a service dog.
“The thing about having your vision constantly deteriorate is that you’re always in a process of grieving,” Fisher says. “I’m okay now, but say in two weeks I realize I can’t recognize something … you have to literally process it and grieve continually.”
ADA wasn’t enforced when she was growing up. Thought of as a liability, Fisher was pulled from classes and the sports that she loved, like swimming. When most kids her age were being told they could be anything they wanted to be, she was told that her disability stunted her destiny.
“If you were blind, you’re either a telemarketer or customer service person,” she says. “Not really encouraging.”
Her first semester at university wasn’t any better. Fisher was double majoring in interior lighting design and ADA compliance, but her classes were rife with professors who saw no point in teaching someone who couldn’t see a majority of the learning material.
It was like swimming against the tide. Without support or money for more than a single semester, she left.
And for some time, she was a telemarketer.
A New Start
When Fisher makes an art piece, she sketches first and outlines her work with a hot glue gun. This creates a raised medium she can feel. She then uses color theory to lay things out.
“It’s a lot longer than a regular sighted person because of all the mapping and groundwork,” she says.
Many completed works are donated to Guide Dogs of the Desert, a nonprofit, and some can be seen hanging in the Westward Ho in Downtown Phoenix.
Her return to art can be traced back to her days at the Foundation for Blind Children, where she learned braille and attended women’s groups. It’s where she met her mentor, Cynthia Woods, who is blind. Woods encouraged her to hold on to her passions, even when Fisher was diagnosed with an extremely rare, new version of Stargardt’s and was feeling disheartened with the future.
“Does it matter?” Woods says, during their many one-on-one moments. “You’re losing your vision anyways.”
It was because of her that Fisher did a research paper on artists with visual impairments, and incorporated so much of her visual process—like braille—in her work.
Using her art, Fisher immersed herself in the community, helping others learn what she learned and how to navigate the world.
“I have always had a passion for public speaking and advocacy,” Fisher says. “Disability, it’s not a label. It’s part of who you are.”
She decided to take another shot at college, this time at Arizona State University, where she pursued a degree in recreational therapy.
And although she was back in school, a few things had changed: she was 40, a single mother, and frankly, unstoppable.
Her Biggest Fan
Come July, Madison Fisher will be 15—the same age her mom was when she was diagnosed.
Although she doesn’t have Stargardt’s, she does wear glasses for astigmatism, and they both have ADHD (Rachel Fisher was diagnosed as an adult).
“I think my daughter has benefitted from having a parent that not only has a disability, but is so open about it,” Fisher says, noting that Madison is even considering a career in a similar field.
Being a visually-impaired mom on top of being a single mom, Fisher works nights so she can be with her daughter during the day, and doesn’t hide the struggles she faces in the process.
“Some parents fault me for it, but I share it in a way she can understand,” Fisher says. “I can’t lie, it’s been stressful, and with a disability, my income isn’t as high as other people. But through this, I teach her how to budget and to work with what we got.”
Over time, Fisher has seen Madison grow to become a compassionate, independent soul … who still likes spending time with mom, of course. In fact, Madison is her biggest fan, especially when it comes to her education.
“I have one semester left until I earn my bachelor’s degree,” Fisher says. “She’ll go, ‘You can do it, you’re almost there.’”
The Next Step
According to Fisher, accessibility at ASU was leagues better than her previous college, with resources and support at the ready from faculty and students alike. She’s part of the inclusion board, working to make the campus as accessible as possible.
“I’m a gold guide, so I get to talk about being visually-impaired, a transfer student and bringing my dog,” she says. “It’s all open, and there’s no stigma.”
Her next step involves accessibility in regards to the student body, like helping students unlearn disability stereotypes, as taxing as that may seem.
“It’s about patience,” Fisher says. “You don’t always want to be patient. You don’t want to always spend 20 minutes explaining to people. But all this ignorance is out of lack of education, and every bit of education helps.”
It’s a mindset that’s been decades in the making.
“I still think the vision I have is great,” Fisher says. “I get to see the world in my perspective. Why not use it to help people?”
And while she doesn’t view herself as an inspiration, she’s definitely inspired.
“This is finally what I wanted to do—to help people, to get a college degree, to teach about inclusion,” Fisher says. “I’m at the beginning. I’d love to look back in the next five years and see what happens, and [what] I’m going to do.”
Aitana Yvette Mallari
Writer
@aitanamallari
Aitana Yvette Mallari is an online media journalist who runs on caffeine and WiFi. She’s lived in the Middle East, Asia, and both coasts of the U.S. and writes about health, tech, and amazing people doing amazing things. She is a graduate of the Walter Cronkite School of Journalism and Mass Communication and probably has a deadline to get to.
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