Being Rare is a Superpower

Hillary Wool with her SideStix

Hillary Wool is a multifaceted woman, with many talents and titles. She is a New Yorker, a management consultant, an “adaptive adventurer,” a model, a dog mom, a traveller, and, above all else, rare. “It’s such a superpower to be rare,” she says, “as hard as it may be.” 

This past year, Hillary, like many of us, was forced to navigate a number of new challenges. She and her husband moved in the middle of the pandemic, welcomed a new puppy, and had to find the best way for them all to cohabitate and co-work in a small Brooklyn apartment. Hillary is no stranger to challenges, and knows how to tackle them head-on. Her mobility challenges stem from two chronic conditions: Ankylosing spondylitis (AS), and Ehlers-Danlos syndrome (EDS), both genetic and triggered by a viral infection she contracted in 2018. While she’s still able to cycle and ski – one of her favourite pastimes – activities like hiking or walking without assistance can be difficult. “Becoming disabled completely blew up my perceptions of what disability meant,” she says, “and really challenged my own internalization of ableism.” 

In fact, Hillary admits that she learned “everything about how to be disabled” from Instagram. She stresses how critical it is to find a community of like-minded people, to remind yourself that you’re not alone in whatever you’re going through. “When you’re going through your day, especially with non-disabled people mostly, it can feel like you’re holding something in that is mentally and physically painful. But knowing you’re in good company, for better or for worse, does help a lot.” As a former teacher, Hillary is used to pushing people to be the best version of themselves. In this online community she has cultivated, she is able to do the same – learning about new tools and techniques, and then passing that knowledge and inspiration along to help others “live their best lives.”

When it comes to seeking further inspiration, Hillary looks to the strong women who have influenced her life. She thinks of her mother, who left behind her life in the Philippines to become a nurse in New York City, and sponsored a number of family members to follow in her footsteps. Hillary also acknowledges how much inspiration she drew from the late Cacsmy Brutus (aka Mama Cax), a model and disabled rights activist. “Looking at pictures and videos of her taught me how to style my SideStix and other mobility aids,” Hillary says, “She represented everything that inspired me.”

As a model herself, and the first model at her agency with a physical disability, Hillary is excited to push the boundaries and be the representation she wants to see in the media. “It’s just so critical that we see disabled bodies, and bodies of all shapes and sizes and backgrounds”. Being the change you wish to see in the world is truly the best course of action, though not always the easiest one. But Hillary is certainly up for the challenge.

What is your definition of ‘defy convention’?

The journey of navigating a disability, especially one that is acquired, can be really tough. Finding a product that allows you to defy what is physically expected, and, as a customer and a patient, finding something that speaks to you in a way that isn’t negative is really amazing. For me, defying convention means just showing up, existing, and thriving outside of an archetype. It means challenging stigmas for what you know is expected and assumed of you, obviously through the lens of disability, but also through all sorts of life circumstances or backgrounds.

I feel like my identities are underrepresented in a lot of my passions. I have a disability and am a mobility aid user. I’m a woman of colour. I’m a management consultant, which, notoriously in the business world, is historically male dominated. I’ve kind of embraced a passion for adaptive fitness and sports, and in things like racing and triathlons you mostly see males within the para athletics world. And then more recently, I joined a modeling agency. In the back of my head, I thought this was something totally unexpected for my career. But looking at the bodies that we see in the media and entertainment, and in the magazines we open, it’s just so critical that we see disabled bodies, and bodies of all shapes and sizes and backgrounds. Defying convention means all of that to me. It’s such a super power to be rare, as hard as it may be. I hope that through defying convention, all of this becomes normalized: for disabled bodies to exist in all these kinds of spaces.

Hillary Wool with her SideStix

Hillary Wool

In thinking about our lives, and what it means to defy convention, you’re always going to be layering on different identities. It’s not necessarily that you have to break with the old, but you have to think about how this enriches or challenges your perspective. Becoming disabled completely blew up my perceptions of what disability meant, and really challenged my own internalization of ableism. Again, that’s where the piece about finding products that have enabled me to be like this comes in. You’re going to be fine, you’re going to have a really happy life, even if you’re using a product that, in your head, has been associated with something sad or negative. In fact, it’s not sad or negative at all.

What are your passions in life? 

At the highest level, I think my passion and purpose is helping others reach their potential, whether that’s individuals, teams, or organizations. I started my career as a high school teacher with Teach For America, in a low-income area of New York City. I was in the Bronx at an all-boys high school. I wanted to get my students to succeed academically, and get them in a good position to start college and their careers. And then,I recruited teachers from college campuses to do the same thing. Now, as a consultant. I mainly work in the healthcare space, and worked on some COVID vaccine-related efforts this past year, which was really meaningful to me. I love working on large-scale change initiatives, thinking about how we make an organization more resilient and able to navigate challenges that exist in the market and in the world. At a high level, that’s the common glue among the client projects I’ve worked on. 

On a personal level, I love moving fast. In the winter I love downhill skiing. I also really enjoy road biking. Just anything involving going fast, with the wind in my face and mountains in the background!

Hillary Wool

What do you like most about skiing?

We went skiing a few times when I was a kid, but I did my undergrad at Dartmouth in New Hampshire and re-learned to ski there. I got more serious about it in my 20s, and have gone every winter since.

It was actually the first really physically tough thing I did after I got sick. I kept saying “I just want to ski once this season!”, so we went out to Utah. I had literally five braces on; my body was just taped together. I was like a skiing mummy! But just having that confidence to still make it down a black diamond just reiterated to me that you can adapt, and there’s always hope. I love skiing because it’s inherently so adaptive. It just makes you think about your body and how to push your limitations. This year was the first year that I was able to ski without my hip brace on!

Hillary Wool with her SideStix

Hillary Wool

Who inspires you the most?

My mother, Marilyn. She’s one of eight children, and immigrated to New York from the Philippines when she was in her early 20’s. She just left her whole life behind, and was the first in her family to leave. This was 30+ years ago, so the Philippines is very different today than it was back then, but she’s from a very remote village. Now that I’m a bit older, I have an understanding of just how hard it is to navigate a career, or go to grad school, or take care of a household and your family, however big or small. She was recruited and sponsored as a nurse, and just started her life from scratch in the United States, and was able to support and sponsor a number of our family members to come over. Most of them and their kids live here today, and I think about that ripple effect sometimes. People in my family call her “The Pioneer,” and it’s definitely a well deserved term. She’s really inspired me to think about perseverance and resilience, but also having fun and staying fit.

She jumps to mind first, but there are so many other women whose shoulders we stand on. Women like Ruth Bader Ginsburg, or Judith Heumann for the disability rights movement, or Harriet Tubman. Thinking about the historical giants who have just paved the way for the current generation to continue advocating for equity, and for everyone to have the right to thrive and have freedom.

I never met Mama Cax [Cacsmy Brutus], but I cried when she died. She represented everything that inspired me. When I was scouted to join a modeling agency, , I thought back to this moment when I realized, “You can’t always assume that someone else is going to do the thing that needs to be done. You need to step up and do it”. Looking at pictures and videos of her taught me how to style my SideStix and other mobility aids. I made this flower crutch two years ago on a night out to a club with my friends because Mama Cax had these really cool flower crutches on the runway for a fashion week. When I saw them, I went to the flower store and just made them! 

Mama Cax and Hillary Wool

Mama Cax / Hillary Wool

The modelling agency I’m with, Stetts, is really trying to push when it comes to inclusion. Being asked to be the first model of theirs with a physical disability has just been so powerful. It’s super inspiring to look around and have friends and contacts pushing boundaries in their own way, from modelling and acting, to business and entrepreneurship. There’s a lot of work to be done, but as a village, we’ll get it done.

Hillary Wool with her SideStix

Hillary Wool

What is the importance of building community?

I love talking about community because it means so much to me. First and foremost, it’s so critical to not feel alone, and to be able to hold each other up and acknowledge that even though we may not have had the same trauma or diagnosis, we can relate to one another, and offer support, encouragement, and inspiration on some level.

From a social media standpoint, the main app I use for community building is Instagram. I learned everything about how to be disabled through Instagram! It’s a tricky situation to be in: How do you do things with a body that is different all of a sudden? “Disability Instagram” is amazing on so many levels. I’ve been able to make so many friends and connections, and learn about so many different people within and beyond that particular community. You can learn what tools people like, and different ways of doing a task or activity, or how to style something with a specific constraint. Community is critical for feeling that sense of solidarity, but also figuring out how to learn from others, and then how to contribute back to that community to help other people figure out what works for them so they can live their best lives and have fun. 

I live with chronic pain 100% of the time. It hurts to sit, it hurts to sleep, it hurts to stand… pretty much every activity hurts. I could look fine, but feel like you’re dying. Speaking with other people who are in the same camp, whether it’s from limb loss or spinal cord injuries, or other autoimmune or musculoskeletal disorders, is great, even just knowing that you don’t have to live with that mental burden alone. It’s so freeing. When you’re going through your day, especially with non-disabled people mostly, it can feel like you’re holding something in that is mentally and physically painful. But knowing you’re in good company, for better or for worse, does help a lot. The community of disabled women I’ve found in the disability, chronic illness, and adaptive fitness communities have been especially amazing. I want to continue to think about how I can best contribute to that community that’s given so much to me.

Hillary Wool with her SideStix

Hillary Wool

What’s your favourite thing to do by yourself?

I’ll be totally frank: I’m all about self-care and self-pampering. I think especially when you work a really intensive job, and when you’re chronically ill and disabled, and still try to work out a lot, your body just needs some down time. I’ll go to a spa and get a deep tissue massage, sit in a lounge chair by a hot tub then jump into the sauna, do yoga… it’s so important to just have time to reflect and take care of your body, and mentally go to a space where you can really feel rejuvenated. I don’t think it’s frivolous at all. It’s something that I wish was more accessible to everyone, both physically and financially.

Hillary Wool with her SideStix

Hillary Wool

What is your favourite thing about your SideStix?

I love SideStix so much!! They’ve just been so life changing and life enabling for me. I found SideStix and started using them when I was recovering from the initial illness. I just wanted to be able to go outside and enjoy my life! Despite my preconceived notions of having this obvious physical disability, it was really important that I have a life where I can show up to work and go have fun outside. With SideStix, I’m healthier, and actually able to be active. What I love most about them is that they’ve enabled me to fully live my life to the fullest, despite these medical conditions and disabilities. My job typically involves quite a bit of travel, and I can run around in my SideStix in the airport with my backpack on; It just makes it so much more comfortable to be able to dash through a terminal the way that I used to. People will see me running and be like, “slow down!” They’re concerned about me because, you know, obviously there’s a reason that I’m on crutches, but I’m like, “I’m good, they have shocks in them!”

I also love being able to literally climb mountains, or go to the beach, even on days where I’m having a really bad flare-up. I’ve been through periods over the past few years where things just got really rough for me physically. It ebbs and flows, but I know that my SideStix enable me to go out and just live my life no matter what. It’s like a sense of security, knowing that no matter what, you’re going to be able to get up and do what you have to do and what you want to do, whether that’s going out on the town or going hiking in the sunshine. I love that.

Hillary Wool with her SideStix

Hillary Wool

Do you have a message for other mobility aid users? 

When things are at their worst for me, whether that’s related to physical challenges I have, or layered onto the normal challenges we all deal with, the humbling reality is that you can only be who you are in a given moment. You can’t choose to be anyone else. We don’t choose our circumstances. We can choose some challenges, but often, hardship chooses us.

In some of my darkest moments, I just try to think about things through the lens of doing the most with the world that I have, including the privileges and the hardships I have. I think it’s important to acknowledge that. But it’s also okay to grieve, and feel awful if something is truly awful, or sad, or painful. It’s okay to not just dismiss it, but to live with it and sit with it, and acknowledge that we can only live in our own individual bodies and our own individual set of capabilities, and personalities, and existences. Progress in a given day can be anything from physically getting up and doing a couple things that I was too physically weak to do yesterday, to hitting a physical goal for one of my hobbies or passions. As long as you’re moving, literally or figuratively, that’s the best you can do. 

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