Disabled Icon Samantha Jade Durán Talks Online Ableism and Living With Misdiagnosis

I've never asked an interviewee for advice on an eye patch before, but there's a first time for everything. In my defense, I'm joined by Samantha Jade Durán — an accessible fashion designer and disabled beauty influencer known as "a disabled icon" — so her opinion weighs heavily. "I don't know which one to wear. I've been trying not to show my naked eye," I say in reference to my recent eye removal, holding up two custom patches. She points to the more (ahem) demure of the two: a white patch painted to look like porcelain. The acrylic blue cracks serve as a reminder that feeling fragile doesn't mean you're broken.

Jade Durán knows what it's like to feel like your body is broken. When she still hadn't crawled at 18 months, a doctor diagnosed her with multiple chondromatosis (a condition that causes multiple bone tumors). Her parents quickly sought a second opinion, at which point another doctor misdiagnosed her with a rare bone disease called fibrous dysplasia (a condition characterized by cartilage-based bone lesions).

Then, right before her high school graduation, Jade Durán was instead diagnosed with bone cancer and a rare genetic disorder called Maffucci syndrome, which can cause painful bone tumors, short limbs, overgrowths of cartilage, and increase the chances of developing certain cancers. In addition to Maffucci syndrome, Jade Durán also lives with Hashimoto's thyroiditis, long COVID, and a connective tissue disorder called Hypermobile Ehlers-Danlos syndrome (hEDS). Ahead, she talks about spending 18 years misdiagnosed, dealing with ableism online, and how she's managed to stay iconic through it all.

PS: What is it that you wish more people knew before coming into your comment section?
Samantha Jade Durán: I wish more people understood that a lot of what they've been taught about disability through movies, TV — traditional media in general — is wrong. Every disability is a spectrum. Two people with the same diagnosis aren't going to present with the exact same symptoms or the exact same scale of severity, and it's not so black and white. Because of these tropes and stereotypes and misconceptions that people have been spoon-fed since childhood, I unfortunately get a lot of hate comments for existing in my disabled body in a way that's beneficial for me, such as using a wheelchair for long or medium distances. I just wish people were more compassionate and willing to learn that they're not always right.

PS: How do you take care of your mental health — online and in real life?
SJD: I've been dealing with a lot of ableism for my entire existence, and I've always found it incredibly frustrating and mentally taxing. It's annoying having to justify your existence. I am a multifaceted person. When I was a child, people would point at my leg and laugh or say things about it and call my scars ugly — call my legs ugly. They'd be like, "Ew, why does she look like that? Why does she walk like that?" I even had parents cover their children's eyes and walk in another direction. It was crazy. Evil, evil, behavior.

I thought it would get better as I got older, and it honestly hasn't, especially with people feeling so little remorse saying things online. Being online does affect my mental health. And I've turned off almost all notifications on all of my platforms. I've taken advantage of a lot of the filter comments and other tools meant to help creators stay safe, both physically and mentally.

Something that frustrates me is when people speak to me rudely and make a lot of assumptions and say really nasty things, but then expect me to respond to them with grace. I can understand if someone's being honest and they're curious and don't know better, but if you're coming at me sideways and you're rude and you're nasty, why are you shocked when I clap back?

PS: I always talk about how I want to maintain agency over my eye, and it really pisses people off. They want to see my eye before I'm ready to show it. They don't understand some of the choices I make, but I'm like, "It's not for you to understand."
SJD: Exactly. People are so obsessed with telling others how they should live their lives, but their own lives are in shambles. Like . . . I know you're not coming for me right now. I want to see you try to do this in this decrepit body. In this soggy, decrepit, dying body. Come on now. Be so for real.

PS: Are there any creative things you've done to help manage your symptoms?
SJD: I actually made this top two days ago. Sewing is way that I cope with my chronic pain. My doctors have told me that distraction is a powerful tool for managing chronic pain, and it's true. I've noticed that when I sew, my chronic pain levels — it's not that they become absent, they just become more manageable. I love sewing, I love doing my makeup. I love getting dressed and wearing colorful outfits. I think that getting dressed and doing my makeup — even on high symptom days — is a powerful tool for reclaiming autonomy over my body. Because I don't get to choose how horrid I feel, but I can choose to put an outfit on, and that makes me feel better.

PS: That's one of the biggest ways that I've been learning to cope with my eyeball loss. I have over 18 eye patches, and it's helped me feel beautiful and like I have some control over my life (even though I don't have much at all). Is that how you feel too, with your clothes and makeup?
SJD: Definitely. I had most of my scapula removed due to a massive tumor, and not even two days post-op, I was there with lipstick, doing a whole face of makeup for content because I was like, "What am I to do?" I'm not about to deteriorate in bed and be like, "Hate my life," in hella pain. I could at least put on some cute makeup and a cute outfit and feel better about my situation.

PS: Where did you learn to sew?
SJD: I taught myself. I started by tracing my clothes to make patterns. I would look at the insides and see how the seams were made and guesstimate how it was done. Up until recently, I was making adaptive clothing solely for myself, but now I do it for friends with disabilities as well. It's been interesting to interview them and ask what difficulties they have getting dressed and what could potentially help them — what they wish fashion could do for them that it's not doing right now. Based on what they tell me, I then develop patterns to help them lead a more independent life and feel more confident.

PS: What's your best piece of advice for others with chronic illnesses?
SJD: Don't let people's own biases and ignorance stop you from living the life you want to live. If you're too afraid to pursue something, do it scared.

Chandler Plante is an assistant editor for PS Health and Fitness. She has over four years of professional journalism experience, previously working as an editorial assistant for People magazine and contributing to Ladygunn, Millie, and Bustle Digital Group. In her free time, she enjoys finding new ways to rock her 18(!) different eye patches, and making videos about chronic illness, beauty, and disability.