Seeing Through Uncertainty: Hannah’s Journey with BBS
Rachel: Hi, Hannah! Thank you so much for being here today and being willing to talk about your journey with BBS, and share a little bit about your story, so I want to give you the chance to introduce yourself. Just your name. How old you are, where you're from.
Hannah: My name is Hannah Schneider. I'm from Raleigh, North Carolina, and I am 24. I'll actually be 25 in a week.
Rachel: Oh, happy early birthday! Awesome! How does it feel? Turning 25.
Hannah: Scary.
Rachel: Yeah?
Hannah: No, I mean, it's also a privilege to, as someone with BBS, to have their vision at this point.
Rachel: And is it, have you noticed a shift in your vision over the years more recently than before? Or has it all been kind of the same?
Hannah: No, I mean, growing up the only thing that was different was I had glasses, but I mean, that's a normal thing. The only reason I was diagnosed is that I have a sibling who's 19. And they started experiencing vision problems a few years ago which led them to go to a specialist and they suspected it was BBS, because they were born with extra fingers and toes, and so combine that with vision.
Rachel: Right.
Hannah: And my diagnosis came 6 months after their diagnosis in December of 2021, so I was a senior in college, and I was getting my degree in graphic design. So it was kind of cruel timing.
Rachel: Yeah, how did getting the diagnosis – obviously no diagnosis is ever going to feel like great news – how did getting that diagnosis feel in terms of maybe having some answers to questions that you know you've been asking about yourself?
Hannah: I mean, if it weren't for my sibling I would still be undiagnosed because my vision hasn't progressed, my vision loss hasn't progressed to the point where I need to go to a specialist. So I think I'm grateful that it took so long to be diagnosed, because knowing that my vision would likely be taken away from me from birth would have been really hard growing up.
Rachel: Yeah.
Hannah: My mom actually tried to get me and my sibling diagnosed because of our Polydactyly, and each time [at] the genetic counselor, she was dismissed because there was nothing else going on.
Rachel: Wow.
Hannah: I still kind of wish that I didn't know.
Rachel: Yeah. And that makes it tough because you can't, I guess, stop knowing. But I admire your strength and your courage to come talk to me about this and be willing to share it with the community, even though you're still processing it and figuring out what that means for you.
Hannah: It's been almost 4 years. And it's – you never stop processing it. I mean, with vision loss and Bardet Biedl Syndrome, you're not given a certain timeline. So doctors know you're gonna lose your vision. But it could be 5 years. It could be 10 years. So you're constantly living in a state of uncertainty. And every day, with the process of vision loss every day is different – I've noticed that with my sibling. I don't know, it's just really hard. And for me personally, with my vision still intact, it's very easy to live in a state of denial, right? I'm not there yet, so it's easy to just pretend that this isn't happening to me.
Rachel: How does having a sibling that is also being impacted by this shift how you feel about your own diagnosis?
Hannah: Well, the thing about Bardet Biedl Syndrome is that it impacts everyone differently, even in the same family. We may both have BBS12, but I mean they're 19, and they are farther along with their vision loss than I am, and I'm 5 and a half years older than they are. So you can't really compare, because it affects everyone individually. But it does give me a glimpse of my future, and it terrifies me.
Rachel: Hmm, right. And I know. So you said you studied graphic design, and I know that you have art [to share]. And can you tell me a little bit about how your diagnosis has shaped you as an artist.
Hannah: So after I was diagnosed I didn't know how to cope, and the only outlet I could think of turning to was creating art about my diagnosis. So pretty much from Fall of 2022 until just recently I've been making work about BBS and vision loss, and it's hard because I've gone from not knowing and being normal to thinking about nothing but this diagnosis with my art. But I think it's a way for me to cope and to share with others, because you tell people, even doctors, you tell them, “Oh, I have Bardet Biedl Syndrome!” They're like, “What's that?” You feel alone. So, being able to share this with others, and connect with people who also have it, or may have some form of genetic vision loss, it makes me feel like I have a community.
Rachel: Right. Yeah, that's awesome that you've found that outlet and you can use something you're passionate about to kind of explore the journey for yourself. What's something that makes you really proud of yourself? Whether it's related to BBS or not, just something that makes you proud of who you are.
Hannah: I guess, being able to turn something so scary and terrifying, and look at it, and not keep it inside myself, but to share with others, and find a way to depict it that other people will feel seen. I mean, I think one of my proudest moments ever is when I first started my MFA program and I was showing my work, and someone in the other cohort came up to me after, and they said that they feel seen in my work. That was definitely the most powerful moment I've had as an artist, and stuff like that really gives you drive to keep going.
Rachel: That's beautiful. That's really, really amazing that you were able to touch somebody in that way. That's really cool. So I want to give you the chance to show some of your art as well if you would like to.
SERIES: “VANISHING WORLD”
Complete body of work can be found at this link: https://hannahgschneider.com/vanishing-world/
From August 2022-January 2023, I was an artist in residence at my alma mater, Meredith College. I dedicated my residency to creating Vanishing World, a photographic body of work centered around my fear of vision loss. The residency allowed me to explore different experimental photographic processes and how they could be applied conceptually, from creating contact prints, chemigrams, and polaroid lifts, to experimenting with film and printing on fabric and silk. Many pieces also utilized color fundus photographs taken of my eyes.
Artist Statement:
As an individual diagnosed with the genetic disorder Bardet-Biedl Syndrome, I have struggled with the increasing possibility of going blind. As an artist, losing my vision would be particularly tragic since I use my sight as an essential tool for creating photography and visual art. Through this series, the camera is used to visualize a world where I may no longer be able to see. The darkroom was intentionally used as an aspect of creating this series, as it deprives the artist of sight and clarity as the work is created. Images were purposefully deconstructed with techniques that are difficult to control, including burning, bleaching, dissolving, and the inconsistent but nontoxic Caffenol developer. The pieces were then fixed with salt, leaving a crystalized residue and resulting in an image still sensitive to light. After viewing the series, I would like the viewer to be left struggling to hang onto something tangible while the images appear to dissolve in their sight. In addition, I hope that they have more empathy toward those struggling with a rare disease. It is estimated that 1 in 10 individuals in the United States and 300 million individuals worldwide are living with a rare disease.
GALLERY:
A Precious Being Breaking Away
This series of prints consists of distorted imagery that becomes ripped and broken as vision degenerates and becomes impaired. There is a central conflict in each piece between the soft and blurry imagery and the harsh, disrupting lines. The warm-toned, creamy paper makes the prints feel aged and delicate. The series speaks about my vision, a sense both greatly desired and loved, being severely vulnerable and fragile.
Decay Until Nothing Remains
This piece consists of a series of 10 contact prints that gradually deteriorate until they turn white. These prints were accidentally bleached between being developed and fixed and were then grouped based on the extremity of their bleaching. This series represents my fear of future memories becoming unclear and corroded by any vision loss that I suffer from. As the prints deteriorate and turn to white, my memories decay along with them until nothing remains.
Crystallizing Vision Loss
This diptych contrasts two stages of vision loss. The image on the left represents early vision loss with decayed but still intact imagery, and the image on the right represents my fear of what my vision may eventually become. The prints were exposed using a projector for 1-2 seconds. The areas of inconsistent exposure and crystallized salt in the prints create darkened and cloudy spots that hinder how much can be seen.
Burnt, Fragmented Moments
This series consists of ten montages made from film burnt using a candle flame. The burnt areas create ripping, creasing, and an effervescent effect, representing deterioration. The color blue in each piece symbolizes the act of mourning for what once was. Some of the layers are translucent, appearing as a shadow of the past. These moments fragment and morph together into one as they decay with passing time.
Consequential Information Overload
These four posters are montages that utilize a mixture of headlines and article content and charts, along with personal retina scans taken in July. The text is rhythmic and distorted, communicating information that blurs together as it filters from the eye to the brain. These prints comment on the overwhelming amount of distressing information available online about BBS, and how there is only so much information that can be taken in until one shuts down.
Irrevocable Lifting
These polaroid montages were created using lifted Polaroids that were digitally overlaid on each other. Parts of the image are rubbed away in each piece, showing the fragility of the imagery. The dust around the pieces represents the imagery, and one's vision, dissolving. This piece acts as a commentary on my fear of taking my vision for granted as it likely slowly and permanently drifts away, leaving darkness in its place.
Swept Away by the Wind
This series of fabric prints are colorized negatives with imagery that ranges from decipherable to unrecognizable. The muted colors in the imagery represent impacted color vision and the distorted imagery represents central vision loss. The pieces are wrinkled, translucent, and light, and are able to move freely in the wind. They are fragile, with the state of vision being delicate and able to blow away with the force of the wind, or one's genetics.