From Invisible to Visible Disability

Magistretti and Charlie
Charlie Kramer and Bérénice Magistretti

In the wide world of human experience, the range of disabilities we encounter is as diverse as the colors in a painter’s palette. Some are readily apparent, commanding our attention with visible cues, while others remain unseen.

Invisible disabilities encompass a variety of conditions that are imperceptible at times. Among these are chronic pain, anxiety disorders, autism, dyslexia, deaf/hard of hearing, blindness, and many others. Often, these disabilities progress over time taking those affected on a journey toward visibility and prompt an increasing need for self-acceptance.

Bérénice Magistretti and Charlie Kramer know all about the journey from invisible to visible disability and the ups and downs along the route. Though they live on different continents and have never met, Magistretti and Kramer share different forms of the same genetic retinal disease: Retinitis Pigmentosa (RP).

Symptoms of RP often start with night blindness, progressing to tunnel vision and for many the loss of central vision. RP results from photoreceptor cell degeneration in the retina, affecting light signal processing.  While there is no cure, ongoing research may slow down RP progression and lead to potential treatments.

The impact of RP varies widely, with some individuals experiencing vision loss early in life, while others retain usable sight well into old age. Despite these differences, most individuals diagnosed with RP move from having an invisible disability to a visible one at some point in their lifetime.

Bérénice Magistretti and Charlie Kramer share their individual experiences adapting to a world that perceives you differently and they express their hope for a more inclusive future as society better understands the wide spectrum of blindness and all disabilities.

Diagnosis

Bérénice Magistretti was born in Switzerland and knew early on that she had poor vision. Diagnosed with severe myopia or near-sightedness, she always wore glasses but otherwise managed to live a life with few limitations.

“I started experiencing symptoms in my early teens. I had a hard time kind of orientating myself, recognizing people. I was tripping over things,” Magistretti recalls.

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After failing the driving test three times, Magistretti realized there might be something more serious going on with her vision. So, she underwent additional testing at a hospital located in Switzerland, that specialized in diagnosis and treatment of eye diseases.

Magistretti said, “As it turned out, it was a very brutal diagnosis. The doctor was sort of standoffish and sterile. I was only 19 at the time, and he said, ‘Well, basically you have this condition called RP. We don’t know how it’s going to evolve. There’s no treatment and you could be blind by the time you’re 30,’ And that was it, he said goodbye and I left.”

Recalling the swirl of emotions her RP diagnosis caused, Magistretti is grateful for the loving support of her family during those difficult early days. For years after learning about her RP, she chose to hide her disability.

“I think for the longest time, I was kind of embarrassed to say that I was visually impaired and that I didn’t see well. I didn’t really want to draw that much attention to myself. Magistretti explained.

Charlie Kramer and his family were living in Southern California when he was diagnosed with RP at the tender age of five-years-old. Unlike Bérénice Magistretti, the RP diagnosis was not a surprise to anyone in the Kramer family. There was a well-known Kramer family history of a dominant form of RP, stretching back generations.

Kramer’s mother and older sister also have RP, though they have retained more residual vision than Charlie Kramer. The family RP history provided him with an early understanding of what the path ahead might look like for Kramer, but that didn’t equate to immediate acceptance. Kramer was declared legally blind when he was almost 16 years, he recalls having enough vision to pass as fully sighted and choosing to keep it a secret.

“I basically lived my life acting like I was a totally sighted person because I could. I played high school baseball legally blind, and my coaches didn’t know, I didn’t tell them. It wasn’t until later that I really started to feel comfortable telling people that I had RP. It was almost like the best kept secret in a way,” Kramer said.

Acceptance

berenice magistretti
Bérénice Magistretti — ©kirsty mclachlan

While living and working in San Francisco as a journalist, Magistretti became increasingly worried and depressed about her vision loss.  She wondered how her vision loss would affect her career and independence. She decided it was time to educate herself about the disease in hopes of finding a path forward.

“I went to UCSF (University of California-San Francisco), and they had a sort of collaboration with the Foundation Fighting Blindness that would pay for patients with RP to test for their specific genetic mutation. So, I found out that my parents each have the exact same mutation, both of them, and they have one healthy copy, one unhealthy copy, and I just got both unhealthy copies and that’s why I now live with RP,” Magistretti explained.

It was then Magistretti decided to move back to Europe to be closer to the support of her family. And in 2017, she started to open up about her RP and vision loss.

“It just became too hard to hide it anymore. It’s taken a long time for me to process and accept what I have,” Magistretti said. “But I finally figured out that having a disability was one thing, why make it harder by trying to hide it?” she said.

Magistretti describes her experience sharing her RP diagnosis as cathartic, and she is very grateful.

“Now I am just so comfortable to tell people that I have RP and explaining it to them and asking for help. Doing that often creates really nice moments where you really bond with people,” Magistretti said. “I feel wonderful today, and I really like the person I am now, and who I’m becoming. And I think it’s because I’ve really accepted this part of me rather than continuing to push it away as a negative thing.”

Like so many with or without a disability, Charlie Kramer recalls the intense pressure to fit in during middle and high school. But, looking back he is confident he handled it the right way.

“I actually think the healthiest solution for me was to hide my RP, because at the time I didn’t have the mental capabilities and mindset or boundaries in place to actually talk about it with people in a way that was going to be helpful to myself and other people,” Kramer said.

Kramer firmly believes there is no one size fits all way of disclosing your disability to others.

“Some people think it’s always best to be open about your disability, but I really think it depends on the situation, for me, it was a slow progression. It started with me telling the people who I felt safe with and in different scenarios where I needed specific help. I disclosed my RP and asked for help only in areas where I knew the answer would be yes, and that built my confidence,” Kramer recalled.

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One such example was when he was playing high school golf. Kramer could hit the ball, but he had no idea where it landed. He couldn’t ask his opponents because it would be in their best interest if Kramer couldn’t locate his ball because the rules dictated, he would be assessed a penalty stroke if that happened. 

“Eventually, I had to ask for support when I played golf. One of my friends came out with me as my “certified ball watcher.” So that was an area where it felt safe disclosing my disability and asking for help,” Kramer said. 

The Power of the Cane

For so many people with invisible disabilities, beginning to use an accessibility tool is a difficult step on the path toward visibility and acceptance. It comes at different times for every person, usually when their desire for independence outweighs their need to look like everyone else.

Accessibility tools come in many forms—hearing aids, a motorized scooter, walking cane, etc. For those facing blindness and low vision, the most common (& visible) tool is a long, white mobility cane with a red band.

berenice magistretti chanel cane
Magistretti and a Chanel cane

The use of canes as aids for the visually impaired can be traced back to ancient times. But the idea for a specifically designed white cane as a symbol of blindness and a tool for navigation began in the early 20th century. In England, James Biggs became blind due to an accident. He painted his walking stick white to improve its visibility to others. In 1931, the first official white cane was adopted, and a red band was added to increase visibility and alert others to visual impairment.

Today, white mobility canes provide a way to identify someone with vision loss and provide tactile feedback allowing users to detect obstacles and confidently travel independently.

Earlier this year, when Magistretti was ready to buy her first cane she was disappointed with the available options. She searched to find a ‘cool’ cane.

“I thought to myself well, I don’t want a white cane,” Magistretti said. “I just don’t understand why they all must look so ‘medical.’  I just think they could be funky and cool and fashionable.  I think that would help smash so much of the stigma around using a cane.”

Magistretti’s views on alternative designs for mobility canes are shared by a growing number of younger users.

“Why do accessibility tools have to oftentimes be just very bland and sterile? Why should we have to sort of settle for something?” Magistretti said.

Critics of alternative cane designs express concern that deviation from the standard white cane with the red band could cause confusion or reduced visibility for both the user and the public. But Magistretti sees the change as a worthy trade-off and hopes to convince others by starting a broader conversation around the topic.

For her first cane purchase, Magistretti settled on a marigold color offered by well-known mobility cane producer, Ambutech. She’s happy with her choice but still found it to be a difficult step.

“Buying my first cane was a big deal, VERY big. I still get emotional when I talk about it,” Magistretti said.

While she retains some central vision helping her navigate, Magistretti has found her cane is very helpful in signaling others that she has a visual impairment.  Before, Magistretti recalls a lot more misunderstandings out in public.

“Often, I bumped into people, and they would say, ‘Are you drunk?’ or they would tell me to look where I’m going. It wasn’t their fault. I think you also invite people to be kinder and more attentive if you signal that you have a disability by using the cane,” she said.

For Charlie Kramer, the white mobility cane has not only become an essential tool but a big part of his identity. And he understands the power it has to break down stereotypes about what blindness looks like.

Kramer said, “The biggest thing for me using the cane was that you’re constantly battling between two identities. On the one hand, you seem like everyone else, but as soon as you break out that cane, the automatic assumption by everyone around you is that you can’t see anything at all.”

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And with that misunderstanding can come judgment. It’s something that people with all kinds of disabilities face when they are making the decision to begin using a visible accessibility tool. They are often afraid to stand out and use the accessibility tool that can actually help them, because they’re worried other people are going to think they’re taking advantage of something or faking their disability.

“It takes a lot of mental resilience and strength to confidently use that tool knowing that some people are going to be confused by it,” Kramer said. “It’s tough because it’s not just the act of showing up and using the cane and other mobility tools in public. You also need to be ready for when people challenge you. You need to understand how you’re going to process through that in a way that’s healthy and builds more strength and confidence rather than setting you back five years.”

charlie kramer speaking in a mic on his podcast
Charlie Kramer on his Podcast

The cane is now a part of Charlie Kramer’s identity and is happy to use it wherever he goes. One of his favorite things is when he and his mom are out in public.

“Every now and then, we’ll be walking down the street to a coffee shop or something, and we’re both swiping our canes next to each other. And I think how often do you see one blind person but two blind people right next to each other. And then if you add my sister in there, it’s really something to see,” Kramer said.

Kramer relishes the chance to dispel myths about blindness by using his cane and it’s also why he chooses to identify himself as being blind, instead of as someone with a visual impairment or low vision.

“I don’t want people to be confused, thinking blindness always means that you have total vision loss, because that’s not true. 90% of blind people have some vision remaining. So, I purposely say I’m blind, and I advocate for that every single day of my life, because I want people to understand the spectrum of blindness,” Kramer said.

Advocacy and the Future

Bérénice Magistretti’s journey from invisible to visible disability has changed her feelings about what it means to have RP.

charlie kramer with cane
Charlie Kramer

“I see now that it’s actually offered me a lot of different things. I think it’s given me a different perspective in life, the ability to get a very quick sense of people, having a very vibrant, visual, creative mind and so many other things,” she said.

Magistretti no longer worries about what she will lose with RP, and instead looks forward to sharing what she has learned with others.

“I find myself on this path of being a disabilities advocate, activist, and really wanting to raise awareness, especially around invisible disabilities.  I hope that I can kind of find different, creative, interesting, and original ways to invite people to better understand these different conditions that you just don’t see from the outside,” Magistretti said.

Charlie Kramer’s RP journey has led to self-acceptance and a reassuring confidence about the unlimited potential for people with disabilities. He also recognizes that education plays a crucial role in dispelling stereotypes about disabilities and encouraging people with disabilities to confidently utilize mobility aids and request other accommodations they need.

“That’s why I do the work I do now as a life coach for people with disabilities, because so many of us are living our lives based on fear, rather than living our lives based on what we know to be our true, authentic selves,”

Even though situations may differ based on different disabilities, Kramer says they share a common fear. Kramer explains that for people who are deaf or hard of hearing, it can be openly wearing hearing aids and not hiding them behind hair or under a hat. For other people, it can mean using a cane or a wheelchair at times, even when people might say, ‘Wait a second, I just saw you walking?’  Kramer believes learning to deal with those often-difficult situations is critical to successfully moving past fear and toward self-acceptance.

“It’s a conversation that is not talked about enough in the disabled community. And it’s important. It’s my greatest passion,” Kramer said.

Charlie Kramer welcomes whatever the future brings him with a readiness to adapt and enjoy life in the present moment.

“I don’t have a lot of vision right now, and I’m okay with that… I love where I am, I love who I am, and I love what I can see, and I love what I can’t see,” Kramer said.

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Editor’s Note:

Writer Jennifer Goga was diagnosed with RP more than 30 years ago. Her experiences on the journey from invisible to visible disability mirror those adeptly described by Bérénice Magistretti and Charlie Kramer for this article.

Bérénice Magistretti is a journalist currently living in Italy. She has covered topics including technology and more for TechCrunch, WIRED UK, Vanity Fair and Forbes. Magistretti is also a disability advocate.

Charlie Kramer is a life coach based in St. Louis, MO.

Kramer is also an Ambassador for the Foundation Fighting Blindness (FFB.org), a national non-profit funding research for a variety of retinal diseases that affect 10 million Americans.

www.berenicemagistretti.com

www.charliekramervision.com

www.fightingblindness.org/

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