model and tss survivor lauren wasser on marching for differently abled women's rights

'It was especially cool that little girls would come up to me and want to check out my leg. It's embracing the idea that you shouldn't be afraid of people who are different. 'It's like a robot,' I'd tell them, then they'd get really excited.'

by i-D Staff
24 January 2017, 7:30pm

Since waking up from a medically induced coma in 2012, Lauren Wasser has been using her platform to raise awareness of TSS — a disease that most women recognize only as an acronym on the tiny pamphlets tucked into tampon boxes. Given that TSS is rarely talked about in general, it's unsurprising that it doesn't normally enter the conversation surrounding women's reproductive rights. But now that we're living under an administration with a complete disregard for these rights, awareness of TSS is more vital than ever. 

The Women's March was particularly important to me as a model who lost her leg to Toxic Shock Syndrome four years ago. My girlfriend and I decided to participate because it was the right thing to do. We wanted to spread awareness about TSS and about women's health care in general, but also to stand united with women around the world. Neither of us had participated in a march or protest before, so we were standing there being like, "Wow this is crazy. This is the first time we have ever really stood up for something in this way."

We wanted to make a sign that would stand out but also encourage a conversation about TSS by inviting curiosity. My girlfriend had the idea of placing a bloody leg in the center of the sign. After losing my right leg to TSS four years ago, I thought it was a fitting message — "I'd give my right leg to be heard." Most people didn't actually notice my leg at first. They just saw my face, because we were in a large crowd. Then when I walked away they were like, "Oh shit, you don't have a leg." There's shock, and there's horror, and people are just in disbelief that something like that actually happened. It's fucking real — they say it's rare, but it's not rare. TSS is misdiagnosed constantly.

It was especially cool that little girls would come up to me and want to check out my leg. It's embracing the idea that you shouldn't be afraid of people who are different. They wanted to touch it. "It's like a robot," I'd tell them, then they'd get really excited.

I try to be physically active but my remaining foot is really badly damaged. I don't have toes, and my heel is really bad. I probably need to have another amputation at some point because my foot is just no longer doing me any good. It's causing me a lot of pain, so I can only walk a short distance before I get tired. The pain sets in and I need to take a break. But being in the march with so many people, I didn't focus on the pain. I focused on where I was and the people next to me and what they were fighting for. I didn't feel different in that moment. No matter if I was disabled or if I had my two legs, I was just the same as the next person. There was everyone from housewives and mothers to people who were CEOs. I noticed a lot of people in wheelchairs or with canes and walkers. It got everyone out, and that's the beautiful thing about it. Donald Trump has us really rattled, to where we're like, "Hey, this is not okay." We just need to keep it going.

I saw the Virtual March the other day and thought it was really awesome. It's including every single person that wants to be a part of this. Everyone has a voice, and it doesn't matter if you're restricted to your own home. Especially with social media, people are starting to see people with disabilities of all sorts showing their capabilities and highlighting their lives every day to inspire others. People have never really had that opportunity to follow someone who's a double amputee but also a bodybuilder, for instance. There's a guy I follow named @bionic_body and he's huge — he looks like a superhero, and he has no legs, but he's winning bodybuilding competitions all over the world. It's so inspiring. I'll probably have to be a double amputee, so it gives me hope for my future. Social media opens my eyes a lot.

Whether it's this president or the next president, somebody has to do something about women's reproductive health. We're over it — we want to be treated equal and we want to feel like the person in charge is putting us in a place where we feel that. When a congresswoman says something, take note of it. A man should never be able to say what you do with your body — it's ridiculous. There's a New York congresswoman named Carolyn Maloney who has been trying to pass a bill called the Robin Danielson Act, named after a woman who died of TSS in 1998. The bill was created so that we, as women and as buyers of tampons, can know what is going into them and what the long term effects of them are on our bodies. It seems pretty simple. But the bill has been rejected by congress nine times. It's crazy.

If anything I hope that I can keep voicing my issue — our issue — and using my platform to get people to pay attention. This is just the beginning. Hopefully we can continue this rally, and this fire, and just not stop.


As told to Hannah Ongley
Photography Jennifer Rovero

women's health
women's march