Becoming Vocal and Visible | Bérénice Magistretti

Welcome to My Hero 360! In this inspiring interview, Jillian Comstock sits down with Bérénice Magistretti who uses her writing prowess to advocate for and bring awareness to individuals with “invisible” disabilities. Bérénice shares her experience with retinitis pigmentosa and how she learned to not just be vocal about her condition but also purposely visible.

Key Highlights:

• Hear how Bérénice Magistretti became a vocal advocate for herself and others with disabilities.
• Discover how Bérénice came to terms with the need for an assistive aid like a cane and now uses it as a fashion accessory.
• Learn about how Bérénice relies on senses other than vision to live an exciting and full life.
• Be inspired by Bérénice’s recent piece in British Vogue.

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Transcript:

Jillian Comstock:

Hi everyone. Thank you for joining us today. My name is Jill and welcome to My Hero 360. Here at My Hero 360, we honor, celebrate, and connect heroes worldwide. Their voices can serve as a catalyst for change, encouraging others to find their own strength and pursue their passions. Today we have the incredible Bérénice Magistretti. Bérénice, thank you so much for joining us and allowing us to share your remarkable story. I am just so excited to interview you, but before we dive in, why don’t you take a moment to introduce yourself to our audience and give us a bit of background about who you are.

Bérénice Magistretti:

Sure. Thank you so much for having me and for welcoming me on your platform. I’m delighted to be here and it’s really an honor. Very grateful and thank you for the opportunity. My name is Bérénice Magistretti. I’m half Swiss, half Italian, born and raised in Switzerland, the French part, and I now live in Milan, Italy, which is where my father is from. I really wanted to reconnect with my Italian roots.

I’ve been a journalist for as long as I can remember. I’ve always loved writing. It’s just been sort of my way of communicating to the world. I’ve sort of been through a period of tech journalism where I wrote a lot about startups and kind of what I call tech that matters. Startups that had a positive impact on society, health, individuals, and then myself having a disability of being visually impaired. The sort of disability took a bit, an increasing amount of space in my life for me to manage it and accept it and sort of navigate around it. I’ve kind of refocused a lot of my writing now on disability advocacy and raising awareness around disabilities.

Jillian Comstock:

Wonderful. Let’s get into it. In your bio on Instagram and on your website, you proudly state that your mission is to bring visibility to invisible disabilities. What personal experiences or pivotal moments motivated you to embark on the meaningful journey of bringing awareness to invisible disabilities?

Bérénice Magistretti:

When I was 18 or 19, I was diagnosed with a condition known as retinitis pigmentosa, which is a form of retinal degeneration and obviously an earth-shattering diagnosis, especially as the doctor who posed the diagnosis was a very sort of unempathetic doctor, void of any kind of a feeling or sentiment. It was very hard to receive that news, which basically was you have this genetic condition; we don’t know how it’s going to evolve. There’s no treatment, and you could become blind by the time you’re 30. When you’re an 18, 19-year-old, just fresh out of high school with your whole life in front of you, it was very difficult.

Thank God I have an incredibly supportive and loving family, which really helped. I think from then on I’ve been on a journey of learning to accept this disability, accept it as being a part of me. But I think really this mission of bringing more visibility to invisible disabilities came when I realized that I couldn’t hide my disability any longer, which is something I tried doing for quite a while actually, because I think I was ashamed; I was embarrassed to admit that I had a disability and impairment. I think disabilities still today are still oftentimes portrayed as something where you’re weakened, where you’re a bit of a victim.

I thought to myself, I don’t want to admit to having a disability. It just became increasingly harder for me to hide it. It was hard enough managing it. Because basically at the time it’s still something I could actually hide because no one could see that I had a vision impairment, probably even on this interview, you don’t see that I have a vision impairment or a disability, so I think there was a big sort of switch where I was like, why am I spending so much time and energy trying to hide something that I could actually share with the world and bring more light and awareness to it and hopefully invite others to share in return, which is what happened. It’s been an incredible journey since.

Jillian Comstock:

Wow, it’s truly inspiring to hear about your personal journey and the pivotal moments that have fueled your mission, your dedication, and bringing visibility to invisible disabilities is incredibly important and impactful, and I can imagine how those experiences have shaped your perspective and drive you to make a difference. In a recent Instagram post, you mentioned how making your disability visible was a massive milestone for you. Could you elaborate on the journey you undertook to move from concealing your disability, which I think is a circumstance familiar to many, to embracing it openly? What strategies or realizations facilitated your empowerment and acceptance of it?

Bérénice Magistretti:

Yeah. Great question. As I mentioned, I think I arrived at a point where I finally started feeling comfortable sharing the fact that I had a disability. I became very vocal about it. Because I’ve been a writer for so long, it came very naturally to me to write about it through blogs or interviews or essays, what have you, and sort of sharing my experience of navigating life with an invisible disability. But then I sort of hit another kind of roadblock or obstacle or what have you, which was very recent actually in the past year or 2, which was realizing that I had to make it visible. It wasn’t enough for me to be vocal about it. I really had to show the world that I had a vision impairment because of the degenerative nature of the condition; my eyesight is gradually worsening because there’s still no treatment today for what I have.

I just found it even harder to just walk in the street by myself, travel by myself without having sort of an assistive aid, a cane. That sort of realization took a long time to sort of hit me because I think I was really hanging onto my former life without a cane and navigating life with an invisible disability, and I haven’t gotten very comfortable doing so. It was another sort of very emotional personal journey and transition where from the moment that I realized that I really needed to start using a cane to me actually buying my first cane, there was a one-and-a-half-year time-lapse.

I think several reasons. The primary one being that assistive aids, again, are something that can be very stigmatized in society, where showing the world that you have a disability is a difficult step to take because again, we live in a society that is so ableist and just kind of wants to fix or cure people with disabilities. It’s all about let’s hide it as much as we can and not show or tell people that we have a disability, which it’s just such an outdated concept and ignorant stereotype in my opinion. We can go into that a bit more further down. I think it was a huge transition. I’m a very recent new cane user, and now I feel absolutely great and very liberated having started using that cane. But it took me a long time and it took a lot of work on myself, working with a coach as well, sort of a life health coach to help me visualize myself using a cane and seeing how I felt during the visualization process. Definitely a very, very tough transition.

Jillian Comstock:

Of course. It’s certainly evident that your path to embracing your disability openly was filled with, like you said, resilience and self-discovery. I think the process of self-acceptance involves confronting your fears, those vulnerabilities, and internal conflicts. I think that can be daunting for many individuals. However, I also feel it’s not something where you can wake up one day and you’re like, I accept myself and then go about your day. I think there are many layers to it where some days are easier than others. Would you find that to be true for yourself? Do you find yourself ever reverting to your old ways of concealing your disability?

Bérénice Magistretti:

Absolutely in the sense that there are good days and bad days, and it’s all about trying out a new way of sort of adapting to your situation. I think for me, it was really sort of years and years of first being able to accept the disability and being able to share it openly with the world and with other people and saying, yes, I have a disability, I have this. Trying to also educate people around me and raise awareness around what I had and still have.

Then it was this kind of new mission, so to say, of showing the world that it’s okay to use a cane because who cares what people think. It’s really about how it makes you feel and if it makes you feel more comfortable and confident. But of course, there are days where I wish I had perfect vision and I wish I didn’t have to use a cane because my vision impairment does make my life much more difficult on a daily basis, whether it’s going to buy something at the grocery store or going to the nail salon, everything takes energy and it’s stressful and you kind of try to mitigate the risks. Of course there are days where it hits me hard and I’m like, wow, this is tough.

But then that’s when you kind of have to dig deep into the sort of foundational resilience that you’ve built over 2 decades and say, that’s there. That hasn’t moved. I can always count on that inner light, inner resilience, inner strength because you do, you have to build up that strength and resilience when you have a disability. It’s just something that in order to kind of cope and manage and move forward in life. I find that whether it’s having done psychotherapy or having ventured into sort of more spiritual practices like meditation and yoga or worked with a health and life coach to, as I said, practice visualization exercises, but also learn to be grateful for what I do have. I think it’s really about trying to develop this toolbox that you always have handy. Even though some days are harder, you know that you always have that toolbox, that you’re this position.

Jillian Comstock:

Absolutely. In addition to that toolbox, you’ve emphasized through research, the importance of learning to rely on other senses as a visually impaired person. Could you offer specific instances or examples illustrating how leveraging these alternative senses has enhanced your capacity to navigate different aspects of life more effectively?

Bérénice Magistretti:

Yeah, I think that as human beings, we’re very, very driven, and even more so in today’s society, very driven by the visual, right? It’s like because we’re bombarded constantly by information, by pictures, by images, by videos, by text, so it’s a very visual driven society. Obviously, when your visual sense is impaired, you kind of have to lean into your other senses, which do become heightened to be honest. It’s really something that I’ve … Over the past couple of years, because our brain is incredible. It really does adapt. Because my condition sort of is very gradual in its degeneration, I think my brain has also had time to sort of adapt and heighten other senses to sort of rebalance kind of my external radars.

It’s fascinating. I know I have a heightened sense of smell, of hearing, of touch, and these are all things that I’ve really leaned into and that have helped me I think since a young age get a very quick sense of people and sort of their values and motivations. That’s helped me a lot in life because I think when your vision is impaired, you do sort of pick up on different things, whether it’s like an energy, or a vibe, or a sound, or how the person kind of uses their arms or touches you on the arm or whatever it is. It’s something that I think you have to sort of cultivate and work on if you want to be able to rely a bit more on these other senses. But it’s definitely something that I found very interesting to notice, how developed these other senses are.

Jillian Comstock:

No, it’s certainly fascinating to hear how you embrace these alternative senses and your perspective on leveraging these senses definitely resonates with the broader theme of breaking stereotypes and societal norms. Could you share a personal experience or journey where you’ve challenged societal stereotypes or norms within the realm of fashion or disability representation?

Bérénice Magistretti:

I think fashion is always something that I’ve been very drawn to since a young age. As a teen, I would always buy Vogue magazine or Vanity Fair or whatever. It’s always been … I love looking at the images or smelling the magazine or collecting them and having that tactile sensation as well. I actually just published a sort of op-ed piece in the March issue of British Vogue, and I think that’s something that is kind of relatively new, is having someone with a disability share their voice in sort of the Bible of fashion, so to say. Because I think it’s 2 worlds that have been very sort of separated until now. It’s like, well, if you’re disabled, you can’t really be fashionable, can you?

It’s something that I’m really trying to break this stereotype, whether it’s by writing in magazines like Vogue or because I love fashion, I also love to dress well and accessorize. Now using a cane, I’m trying to use it in a fashionable way. I’m hoping that through these different ideas and collaborations that I’m trying to create and put forward, the world will see that yes, you can be disabled and fashionable or fashionable and disabled, however you want to put it. It’s definitely not mutually exclusive. The cane can definitely become a fashionable accessory.

Jillian Comstock:

Absolutely. It’s incredibly important, like you said, to break those stereotypes. Your courage in challenging those stereotypes and advocating for more inclusive representation is truly commendable. It’s inspiring to hear how you’ve navigated through such barriers and make a meaningful impact. My Hero, we’re all about recognizing those that have embraced life’s challenges and turned it into something powerful and hopeful for others. Can you share ways in which you have not let your own obstacles define you?

Bérénice Magistretti:

Yeah, I think it really comes with the journey, and you can see obstacles as obstacles in the sense it’s preventing me from moving forward in the direction that I want to go, or you can see obstacles as opportunities and saying, well, you know what? I can’t move in this direction. I have to move around it. But then it creates a whole new path for you, which is actually a fascinating path, an inspiring path, an enlightening path. It’s something like, I realize that if I didn’t have this genetic condition and I didn’t have this vision impairment, I probably would be a slightly different person than I am today, or I wouldn’t be where I am today. I always tell people I love who I am. I love who I’m becoming. I love my life. Of course, there are difficult moments, but it’s not necessarily my disability that basically dictates how difficult life’s moments can be.

I think anyone will have challenges throughout their lives, and it’s about how you confront them and how you manage them. I think that it’s about perception. It’s about being able to zoom out, and it’s really about being able to be grateful really for what you have. In my case, it’s having an incredible family, incredibly supportive family, wonderful friends, and a mission that I’ve sort of set for myself in life, which really generates a sense of purpose that’s very fulfilling and enriching. It’s really about this journey of raising awareness around invisible disabilities and encouraging people to be more visible and vocal about their disabilities because I think that’s really how we’ll break out of this mold of sort of this very binary way of looking at things and looking at people.

Jillian Comstock:

Sure. I love what you said about how you see obstacles as opportunities. Perception is a significant factor in the outcomes of just life in general. I love what you said about that. That’s amazing. My last question: what would you tell your younger self knowing what you know now?

Bérénice Magistretti:

I would tell her that things are going to be okay. I’m getting emotional. I think when you are younger, it can’t feel like the world is falling apart and your life is falling apart. I think … That’s part of the process, is being vulnerable. But I think I would really tell her things are going to be okay, and great things are coming your way. It’s okay to be vocal and visible about who you are because you’re a beautiful person. I think that’s what I would tell her.

Jillian Comstock:

You are absolutely incredible and so inspiring. I just want to thank you so much for your authenticity and vulnerability today. You are truly a hero, and here at My Hero 360, we value and appreciate the impact you’ve made on the world. Thank you.

Bérénice Magistretti:

Thank you so much for welcoming me and allowing me to share.

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Connect with Bérénice Magistretti:

• Instagram: @berenicemagistretti
• Website: berenicemagistretti.com

About My Hero 360:

At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world.

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