Deborah Shuck

@awomanofsteel | contributor
Understanding from an early age, she was meant to be an advocate, Deb garnered community support for a trip to Washington DC. Her mission was to have a central clearinghouse for those seeking help to be directed to specific organizations. To that end, she tirelessly pursued politicians at the federal level, knocking on one congressional door at a time. A generous Congressman arranged a meeting with the Chairwoman of the National Council on the Handicapped. Deb then transitioned her advocacy to the Native Alaskan and Native American issues in addition to the Americans with Disabilities Act. Deb later settled in London, England where she was introduced to the Royal Association for Disability and Rehabilitation (RADAR) by a Member of Parliament. As in Washington DC, Deb continued to advocate for the betterment of her community.
Naomi G.

Why I Don't Call Myself a Chronic Illness 'Warrior'

I just want to say before I continue with this story, I’m not against people referring to themselves as “chronic illness warriors” or describing their “fight” with their illness. It’s just that this language doesn’t work for me. Here’s why. The words “fighter” and “warrior” are often linked with our response to illness. Even when someone has something like a simple cold, they may say, “I’m fighting a cold!” This makes it sound like we’re in a war zone with our bodies and sheer willpower will get us through the day. I’m chronically ill, but I don’t think that makes me a “warrior” or “inspirational.” I’m just Naomi and I just happen to be disabled and living with a set of chronic illnesses and symptoms. Yes, life on a day-to-day basis is a struggle. It takes a lot of effort to do everyday tasks and I require help with things. But on my bad days when I can’t get out of bed, it’s not because I haven’t tried hard enough or “lost the battle.” I’m simply not well enough to get out of bed. When it comes to chronic illness, there isn’t an “after” or “when I’m well again.” It’s a journey of grief, acceptance and coming to terms with the life I have now, and learning to go with the ups and downs of good days and bad days and in-between days. I am trying to let go of the life I had planned out, especially when it comes to my education and the career I’d always wanted (and I still hold out on the hope that one day I can return to it). Some days the grief for that lost life I planned is still very raw. When I first got ill, I did feel like I was fighting against my symptoms, which at the time were “medically unexplained.” I was hoping they would just be temporary, but eventually, I had to accept my reality. When I was fighting against my body, I was just stressing it further and probably making myself more ill in the process. Accepting my disabilities has been hard, and it took a while for me to refer to and see myself as “disabled.” Many times I haven’t wanted to accept the fact that I will be ill for the rest of my life to one degree or another, and sometimes I find myself hating my illnesses or feeling like my body is “broken.” Of course, it was and still is really difficult, especially when I still feel so young to be dealing with being chronically ill and seeing my life and future turned upside down by something I never planned for or chose. It’s especially hard seeing people my own age, like my brother, doing many of the things I planned and want to be doing and achieving. This is where I’ve found it helpful to find friends around my own age to talk to about being young and disabled in a healthy and supportive way. To me, the word “fighting” sounds exhausting. Sometimes you just want to take off your armor and talk about how hard it is and how it sucks. When this happens, I don’t want to be told I’m inspirational and to “just keep going!” or “battle on!” I just want someone to listen. This is where I’ve found therapy or talking to friends with disabilities helps. One of my friends shared this quote: “Just keep swimming, and when you can’t swim, just float.” Sometimes I just want or need to float for a while. I’m not totally against the use of terms like “warrior” and “fighter” and I will use them in my hashtags on social media. I like how these terms unite those living with chronic health problems — like the community here on The Mighty. Giving up the fight helped me accept that I was chronically ill as opposed to continuing a battle I was never going to win. It was the right choice for me.

Karen Veazey

Nike Releases First Hands-Free Shoe With Accessible FlyEase Technology

Nike has taken another step toward accessibility for people with disabilities and health conditions with the release of a new step-in, step-out shoe, designed with its FlyEase technology. The shoe is created to be used hands-free, making it ideal for people with range of mobility issues or other conditions that limit motor skills. Nike has unveiled their first hands-free shoe: the Nike GO FlyEase. pic.twitter.com/FZeKDTPUcf— Front Office Sports (@FOS) February 1, 2021 Called the Nike GO FlyEase, it features a hinged design, with the hinge placed just forward of the shoe’s heel. Nike calls the feature the FlyEase tensioner. When the wearer steps into the shoe they push the insole down with their foot, locking it into place. To remove the shoe, the wearer steps onto a rubberized portion of the heel with their other foot, then lifts their foot up and out of the shoe. “Usually I spend so much time to get in my shoes,” Champion wheelchair fencer Bebe Vio told Nike. “With the Nike GO FlyEase, I just need to put my feet in and jump on it. The shoes are a new kind of technology, not only for adaptive athletes but for everyone’s real life.” The FlyEase entry system was developed in 2012 after then-teenager Matthew Walzer wrote to the company requesting that they design a shoe for people who might have problems with shoelaces. “My dream is to go to the college of my choice without having to worry about someone coming to tie my shoes every day,” Walzer, who has cerebral palsy, wrote. “I’ve worn Nike basketball shoes all my life. I can only wear this type of shoe, because I need ankle support to walk. At 16 years old, I am able to completely dress myself, but my parents still have to tie my shoes.” All FlyEase shoes are designed with the goal of being easy to open and close, easy to put on and take off, and accommodating to different foot shapes. Other Nikes with variations on the FlyEase design include the Zoom Soldier 8, Lebron Soldier 9, Pegasus 32 and Flex Run models as well as an adaptive version of the iconic Jordan 1. Previous iterations had zippers on the heel that secured the shoe. Some commenters on Twitter noted that Nike shoes can be expensive and hoping the company will price this one so they are accessible to those who need them. The GO FlyEase will be available to some Nike Members via invitation on Feb. 15. A wide launch is planned for later in 2021. Initial color offerings include a mix of pastel green, pink, and blue; a blue/black combination; and solid black.

Deborah Shuck

Parents, It's OK to Let Your Kids Ask About My Prosthetic Leg

I am in a store, any store. A child sees my leg and is interested. After all, I am inviting curiosity by wearing shorts. Out of the corner of my eye, I watch to see what happens while I shop. The child points, the mother says, “Don’t do that! It’s rude!” But she doesn’t explain. She doesn’t explain my leg to the child or why it is rude to point. The child is still asking her about my leg and she is getting angrier. He still doesn’t understand why she is so angry. He is just being curious. She yanks at his arm to pull him away. To save his arm from further damage, I walk toward the little boy and I explain: “When I was born, I didn’t get two legs like you. Mine were different and the doctors had to fix one so that I could have a leg like this.” I point to my prosthesis. “The great part about it is that this leg is special, it has a computer inside.” I take the battery out and show them that the battery is just like one that operates their toys, cameras, computers at home etc. They love it. They think that is the coolest part. They usually want one just like it. I explain to them first that it doesn’t hurt and that I can do things just like them, but I may have to do them a little differently. I tell them that I snow ski, but I have to do it on one leg with these little skis that are on crutches. I tell them that I scuba dive, I just do it without my leg on. I tell them that without the computer, I might not be able to ride a bicycle as well, so this makes my life a lot better. That is about as long as a 6-year-old attention span lasts, but they have had an explanation. Now they know that people can be different, but different can also be a good thing.

Dalila Tominaga

No One Is 'Too Young' to Have Chronic Pain

I have such a strange relationship with my body. It serves its purpose, getting me from point A to point B and all the little steps in between, but it isn’t always effective in doing so. I’ve been in three major car wrecks from the time I was 12 to the time I was 17. Each has left some kind of lasting impact on my neck, shoulders and back, all with varying degrees of severity. Like most people living with chronic pain (like my mom), some days are better than others. And some days, like the one I’m writing this on, are worse than others. I’m young and so I tend to forget there are things I can’t do with my body. I can’t lift extremely heavy things, I can’t stand or sit up for too long without being able to sit back or lay down, and I have to be careful where I sit because I can hurt myself if I sit in an uncomfortable chair for too long. But if I speak about these things to people I feel like I’m written off, brushed to the side because people my age aren’t supposed to be in pain like someone three times their age. I know something’s going on with me. It’s only now that I can move toward getting a concrete answer on what that is (thanks, American healthcare system!). But I feel like even when I have the x-rays, when I have proof, no one will believe I’m not just some lazy young adult trying to get out of lifting something. When you’re my age and you have pain, that’s what nearly everyone thinks. They think that because you’re young you should be able to bounce back, sleep it off and get up the next day without a glance back. But that’s just not the case for everyone. It sure as hell isn’t for me. If you stumble across this and you know someone between 18-25 who, for some reason, has chronic pain, listen to them. Don’t assume that because they’re young they can just “get over it.” If they choose you to confide in about their pain, they definitely aren’t going to get over it anytime soon. So be nice. Be understanding. And most of all, listen.