Spina Bifida

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I Get to Define My Worth: Lessons Learned from My Disability

by Allie Schneider, registration coordinator, NAC

I’m the oldest of three girls and am the only one with a disability. My disability is Spina Bifida but in spite of that, I live on my own, I drive a car, I have a dog named Jack, I absolutely love doting on my nieces and nephews and traveling to new places. I bike, swim, waterski, scuba dive and ride horses.

Living with Spina Bifida has taught me that differences can actually bring humans together, which is why I embrace my uniqueness full force. Whether you have a disability like me or feel “different” for other reasons, I invite you to embrace your uniqueness because you’re the one and only you on the planet. On my journey to accepting myself, exactly as I am, I learned a few valuable lessons.

I am capable

My parents wanted to give me the same opportunities any parent would give their child, so they prioritized independence and experiences for me, just like my siblings. Because of this, I was introduced to the National Ability Center at four years old when I took part in their ski program. Skiing with my family was one of the first times I understood how capable I was. My disability didn’t prevent me from learning a new sport or spending time partaking in a recreational activity with my family. Instead, I could accept and celebrate my journey and who I wanted to become.

Today, I can experience all the outdoor activities I love to do. Thanks to the access and knowledge gained from my time with the National Ability Center, I can waterski with my family or ride a bike with my girlfriends.

No matter what challenge you’re facing, whether it’s mental, physical or emotional, look for activities to participate in. Understanding how capable you are as a person is such an incredible gift.

Acceptance and inclusion matters

There has never been a better time for inclusion with Diversity, Equity, Inclusion and Belonging (DEIB) becoming more understood and more of a priority for organizations like companies and schools. While this is getting better, being seen as different in school, work, and social settings may still be a struggle for some.

In my life there have been times I’ve been worried about being accepted. People often think that because I’m in a wheelchair, I can’t do things others can do. But the reality is, I can do things just like everyone else – it just might take me a little longer or look a little different.

When you’re surrounded by a world that tries to point out your differences, it’s important to have a safe place. As a participant and now an employee at the National Ability Center, I have found a judgment free zone, a place where I’m accepted for who I am, no matter what. We all need a place where it’s okay to be different and to be who you are.

Further, acceptance in action is critical. Accommodations for people with disabilities is essential for those companies who prioritize diversity and inclusion. It’s an outward representation of understanding and acknowledgement that while I may not know what your challenge is like, I’m going to support you through it.

There’s power in letting go

We all face challenges in life, but it’s truly about how you motivate yourself to overcome those challenges. It may be impactful, but it doesn’t have to control your life.

As a kid you don’t really know or understand that you’re different because the other kids don’t really notice it either, that’s the great thing about being a kid! But as a teenager that’s when I learned this lesson. Spina Bifida may be part of my journey but it doesn’t define who I am or what I can accomplish, growing up that was a powerful moment of growth for me. Even today as an adult I still sometimes have to remind myself of this lesson.

You don’t have to let whatever challenge you’re going through define the type of person you are. It’s okay to be different and to deem yourself worthy and capable, exactly as you are.

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Picture Description: Leave words of Encouragement Below.Trust that the eyes that need to read it, will. #SpinaBifida #Hydrocephalus #Positivity

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Picture Description: No one fights alone in the family. Spina bifida awareness. #SpinaBifidaAwareness

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Having a hard time finding the good in life. I have an amazing family, with four kids and a wife at 35. The last three years have been the hardest. Was working 60 plus hours a week until 2020 I hit a wall. I was at 215 pounds 5’11”. Then the fatigue and weakness came. Along with debilitating anxiety and depression. Halfway through 2021 I was diagnosed with sarcoidoses. As well as some lower back problems from undiagnosed spina bifida. Had a full fusion of my lower lumbar.

I cannot work anywhere close to what I used to. I feel like a failure most days. Barely keeping up with my kids. I’ve been detained 5 separate weeks for suicidal ideation and tendencies. Horrible experiences… sitting in a room full of kids, drug addicts, and convicts. Listening to depressing stories that makes my stuff feel not so bad.

I’m at 150 pounds now, trouble eating, sleeping, drinking. Body aches everywhere mostly around my joints. Still dropping weight. I don’t use drugs or alcohol anymore nor do I use tobacco. Sober 4 years from alcohol. Recently tried and gave up THC. (Doctor recommended) now I have no appetite at all. Most days I wish I could sleep and not wake. #MajorDepressiveDisorder #Anxiety #SpinaBifida #Sarcoidosis

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Spina Bifida and Quality of Life

I am a 38-year-old African American wife and adult with Spina Bifida. I have nearly 20 years’ experience working in the medical field, specifically within the laboratory and research spectrum. I am currently a research project manager who is focused on the betterment of those with Spina Bifida at the University of Pittsburgh and for nearly 10 years I have been working on various research projects concerning the adult and pediatric community with SB. My research is a collaborative effort with various physicians and other clinics that are developing methods to reduce the suffering and debilitating results of the disorder. As of last year, we have developed our Adult Spina Bifida Peer Navigation Program that offers virtual group sessions every 2nd and 4th week of the month. The program is an effort to share lifestyles and techniques among the community with the guidance of our mentors who have both spina bifida and medical care experience. This atmosphere is patient focused with guidance by patients like them. It provides our clients with a judgment free zone where they can socialize while receiving advice or support specific to their needs.

As a person with SB, I understand and hope to bring attention and resources to the quality of life needs within our community.

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Picture Description: Easy is to judge the mistakes of others. Difficult is to recognize our own mistakes. #SpinaBifida #strong

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