Disabled in an Abled World

Lynsey is incredibly inspiring, and though she may not see it herself, you’ll soon see why. For the last two years she has been an ESL Teacher in Sugar City, Idaho and enjoys making a difference in her students' lives. Lynsey enjoys reading, jumping on her trampoline, spending time with her family, and making art. She grew up the youngest in a family of four girls. Lynsey was born different and her differences are beautiful! She emanates joy everywhere she goes and has helped many realize that despite being different, people can accomplish so much with the right mindset and attitude.

Lynsey was born in 1981 and ultrasounds were not as advanced as they are today. “My parents didn’t know I was missing parts,” Lynsey says, “My mother had me by C-section, so she was still out when the doctors handed me to my dad. I can only imagine what was going through his mind, but from what I understand he handed me back to the nurse and went and sat in the hall and cried. Sitting in the hall my dad decided that if God was going to give him a disabled child, he was going to do everything he could to take care of me. My Grandma Alice tried to encourage my parents to put me in a home because I would be a burden and wouldn’t be able to take care of me. My parents both said no, thankfully. How different my life could have been, had my parents not been people of faith… As far as they can figure, my disability was caused by a severe viral infection my mother had in the first trimester of her pregnancy. It stunted my growth…We just always teased my mom that she didn’t have enough batter left to finish baking the cake…The official term they gave it was BBDF, which basically means a bi-latera deformity, [or] a fancy name for…missing limbs. I am missing over half of the bones in a regular human body, and at least half the muscles and not just from the ones that aren’t there. Even what is there has missing pieces…I have a left arm, but only three fingers. Right arm only to the elbow, and then opposite for my legs. Left leg is to the knee, and right leg has the femur, knee, and tibia, but all squished into about 12 inches…Then I have a left foot with only two toes. My spine is in an S-shape, but not sideways as scoliosis is, it comes out towards my shoulder blades, then in towards my gut, then back out towards the tail bone. My left hip has a ball, but no socket, and my right hip has a socket but no ball joint. That’s why I walk sideways. There are many more strange things physically, but those are the basics.”

While her parents were at the hospital, a man approached her father and talked to him about Shriner’s Hospital and the assistance they could provide Lynsey and her family. “When I was about three months old, my mom and I flew to Shriner’s Hospital [in Salt Lake City] for evaluation. The doctor there at the time told my parents that he didn’t ever expect me to walk or be able to take care of myself.” Though the prognosis wasn’t what they had hoped, Lynsey’s parents continued to do everything they could to provide opportunities for her. She shares, “We went to Shriner’s…about four or five times a year. So, I was exposed to a lot of different kids…I knew there were others like me or others that struggled more than I did. I knew a little boy named Charlie who was born without arms or legs. He still loved to play toss. You would toss him a ball and he would roll around on the floor to catch the ball and use his chin to roll it back. There was another little girl who wasn’t auditory. She couldn’t speak. But, we would sit and color with each other in the lobby waiting for our turn. I knew there were all kinds, and I actually got to see the perspective that my disability wasn’t the worst, that I was actually quite blessed with what I had, especially my mind. I was always grateful that I had a clear, sharp, and intelligent mind.”

Still, even with her amazing perspective, growing up disabled would still pose challenges to learning everyday things. Lynsey expressed that she never really felt limited in what she could do, rather it was just figuring out how. “If I wanted to do it, I’d figure out a way. I couldn’t carry more than one crayon…as a kid, so I shoved my diaper full of crayons to carry them around. I couldn’t reach the bread in the corner of the counter, so I learned I could use a yard stick to slide it under the bread and flip it off the counter to get it. My parents usually just worked with me to help me figure it out...I was truly just expected to do what I could in my house by my parents and my sisters and I am grateful for that. They all helped me to be as independent as I am today.”

Lynsey continued to stretch herself and began to do things that no one ever thought she would, but it wasn’t always because of scientific advancements. “When I was about 2, I was fitted with a prosthetic arm. I called it Alli the alligator because the hand looked like an alligator head and jaw that would open and snap shut. The logic back then was, well, she doesn’t have an arm so let’s give her one and she’ll be able to do more, right? Wrong! [Laughter] I ended up being better off with just my elbow…When I was about 4 years old, the doctors at Shriner's wanted to start putting prosthetic legs on me. I had already defied the odds and by that time was waddling around easily on my own. When they put legs on me, I would cry and cry. My dad finally figured out it was the height that scared me. I wasn’t used to being so far off the ground. So, he told them to take the feet off. I ended up walking around on two stumps for quite a while to get used to wearing them. Then, at the age of 5, I was the first bi-lateral disabled child to walk on two artificial legs in the history of Shriner's. It was a record I held for many, many years. But I was able to do it because of the ingenuity of my father, and my own stubborn determination. Everything I did seemed to defy the odds that had been laid out for me by others. I just didn’t know or care what they were as a child”.

Through her own merits, Lynsey accomplished much, but there were still limitations. So much of youth involves physically moving and playing and many of those things were not possible for Lynsey, “I couldn’t even play outside a lot because I was walking on my knee basically and it hurt. My mom carried me around most places I went for a very long time. I remember sitting at the front windows of our home watching all my sisters ride off on their bicycles wishing I could join them. That is one of my more vivid memories as a child…”. Of course, what she has not been able to do has caused her to accept different life circumstances than others without physical limitations. “I have always led a very simple life,” Lynsey reflects, “It’s a good one, but it’s been very limited because of the physical. It always will be limited in that regard. People are usually unwilling to adjust what they know as the norm. I remember going to the movies once with my mom and seeing an entire group of my friends standing in line. They all saw me and started making excuses as to why they didn’t call to invite me. But I knew why. Because my physical limitations are not something most are willing to adjust to. They knew I would be slow walking, and they were in a hurry. It was a realization to me that day. I knew they cared for me, but it opened my eyes to the way they saw me. And I, them. That experience changed...my thinking. Physical limitations have, and always will, define my life”. Though her physical limitations will always be there, Lynsey is committed to placing focus on the things she can do instead of what she cannot. There was one gift that she received that helped remove some of her feeling of limitation, “The Olympic style trampoline

my Grandpa Seele bought for me from the DI for my birthday became the place where I was free. I could always make it to my back yard to go jump. I usually feel like a moving lump when I walk, but when I jump, gravity is lifted and I’m free to move. It was a way for me to feel some small measure of freedom…” It’s interesting that she felt freest as she was propelling into the sky, because Lynsey never put limitations on herself to try new things. Truly, the sky was her limit.

Lynsey with Dr. Ron

Lynsey’s doctors and teachers played a large role in helping her reach the sky. She talks about her prosthetic doctor from Shriner’s Hospital, “There was one doctor, that I believe, changed my future. His name was Ron Jay…He believed in me, and saw my determination to do whatever I wanted, to succeed. I was very lucky as a child to be able to work with this man. He was very competent in his job, and was very willing to change, adjust and innovate. My needs were special to me and not to what a book said was the best thing. He constantly was on me to walk straight and not like a penguin. ‘Straighten out your hips!’ he would constantly yell at me as he made me walk up and down his hallway to see if my prosthetic legs were working correctly. He was my friend, and I loved him. He helped believe in me so that I could “defy the odds”...I don’t know what I would have become without this man’s influence in my life.” You can see Lynsey’s determination to do things that were not neatly laid out for her throughout every thread of her life. Though many people probably did not expect her to succeed or to have valuable contributions to society, Lynsey knew otherwise and she was on a mission to show all that she could do! As a child Lynsey enjoyed art, but didn't have much practice yet. Her high school art teacher, Mrs. Tyler, pushed Lynsey to grow and expand her artictic ability, “…she never questioned my ability or willingness to learn and often looked at my work and said, ‘start again, you can do better’. She never said that she wasn’t sure art was the best thing for me with only 3 fingers. Instead, she encouraged me to do anything and everything, including photography and ceramics. It gave me an outlet to be creative and express myself, to grow and discover more about me… [it] was one of the greatest blessings to have a teacher that believed in my potential.”

Lynsey's Art Through the Years

After graduating high school with a love for learning and the opportunities to try new things, she began studying at Ricks College in Idaho. Lynsey had a desire to join the floral design program. She went to the instructor, Benjamin Romney, and discussed with him the possibility of joining. Lynsey thinks back, “…he said, ‘Well, I’m not sure how much you’ll be able to do but you’re welcome to come sit in my classes and learn’. In my mind when he said that, I was like, game on! Nobody tells me I can’t. [Laughter] So, I went to floral classes and learned how to make corsages using my chin, hand tied bouquets using a bucket and a certain pattern of arranging the flowers to make it stand when tied together. I learned how to lift myself onto the studio’s high stools and learned how to use floral “weapons” as he called them. All in different ways than anyone else. I had to be creative and innovative to succeed. He never once questioned me (after that very first day) or my ideas and often helped figure things out with me. He believed in me to do anything I wanted to...He is the kindest, funniest, most beautiful soul I have ever had the privilege to know. He truly shaped me, my belief in myself, and my life. I will forever be grateful to this man for so many reasons.” In 2001, Lynsey received the "Spirit of Ricks" award from the floral design department. With the knowledge Lynsey gained from this program, she went on to own a small floral design business in which she handled both the arranging and business aspects. She arranged for weddings, funerals, proms, home decor, and rented a space in a consignment shop to sell some of her artificial arrangements. She owned this business for seven years until she was married.

Lynsey's Floral Arrangements

Inside Lynsey’s home, she received an abundance of love and support as well. She acknowledged, “So much credit goes to my parents. They relentlessly took me to Utah for therapy and prosthetics, and then helped me use them every day of my life. I’m sure it wasn’t my mother’s favorite thing to help me put those beasts on every day and get dressed, but she did it. I’m sure it wasn’t her favorite thing to carry me around everywhere we went until I got my wheelchair, but she did it...I’m sure [my dad] hated working at the INEL (Idaho National Engineering Laboratory) for 40 years, but he did it because he knew it had good insurance to cover costs of what I needed...So much that they had to wade through I can’t even imagine, but they did it. And, along the way taught me to be as independent as possible...I remember asking my dad to peel me an orange once and he said, ‘if you want one, go figure it out’. So, I did. I remember I made a holy mess and I slaughtered the thing, but I ate it with a smile on my face because I did it. If my parents hadn’t worked relentlessly every day for me,

Lynsey with Her Sisters and Parents

my life would be very different, and I would have learned a completely different way of life. I’ve seen it. Parents that baby their disabled children. I thankfully wasn’t one of them.” What a tribute to her parents. She admits that they probably didn’t do some of what they did for Lynsey with intention, but Lynsey was grateful not to have had special treatment. Lynsey’s sisters also helped her with everyday activities that were difficult like tying her shoes, learning to write, making meals, and many other things that an older sister probably wasn’t excited to do. However, Lynsey says, “I give them credit for treating me as much like the annoying little sister [that] I was…and not something else…I learned that I wasn’t special”.

A seemingly silent source of strength was also a foundation for Lynsey, “I’m...grateful to have been born into a family that were members of The Church of Jesus Christ of Latter-Day Saints. I can’t think of any greater blessing than knowing I was a child of God. With everything else about me that was different, that, I had in common with everyone. To know on the days, I didn’t want to fight anymore, the days I didn’t want to be different, the days when I felt alone, I could turn to a loving God that I knew could hear my prayers and give me comfort. What an unimaginable gift and influence it’s had on my life. I’m not sure I would even be here today if it wasn’t for the knowledge that I truly wasn’t alone and that a loving Heavenly Father knew me, knew my struggles, and sent comfort and understanding to me when I needed it most”. Her reliance on God, especially when other comforts seem scarce is a hidden blessing of her disability.

Lynsey at Girl's Camp 1993

Although Lynsey accomplished so much because of her sheer grit and determination, she still struggled (and continues to struggle) with the way she viewed herself. “It’s a very complicated thing, asking how I felt about myself growing up. Even now. I knew I was different… [but] I don’t know anything else. This is normal for me...how I viewed myself was…I know I look different, but I can’t look that odd. My fingers don’t look that strange. The way I walk isn’t so bad. I can still lift myself onto things so it can’t be that much different than others, right? Turns out it is, but I still have a tendency to view myself and what I can do in a very different light than what others see”. As Lynsey became older, she began to realize that not everyone saw her

with the same grace and understanding as her family members. Things became more difficult for Lynsey in high school and friends were not easy to come by. Towards the end of her high school experience, Lynsey made a choice not to care about what other people thought and she was able to enjoy more friendship. She reflects, “So, when I started college it ended up being the best time of my life. But I had to work for it to be that way. And I did. I had some of the best friends and experiences I’ve ever had in college”.

Though Lynsey achieved personal happiness, life hardly stays on a consistent trajectory and feelings once felt can dissipate under the burdens and challenges of life. Lynsey met and married her, now, ex-husband around the same time she was in college. Divorce has brought on its own unique challenges. “I lost my best friend. Someone I thought I’d always have around. I know I’m far from alone on that account, there are countless others that have felt and experienced the same thing I have, but starting your life over at the age of 36 wasn’t really something I was prepared for. I wish I could go get a full-time job, and an apartment, a car to drive, and so many other things that are normal for so many, but are harder for me to obtain (not that I don’t still have a goal to get them) simply because of my disability and government regulations I have to follow to keep my insurance”. Lynsey moved back home with her parents. One of her new challenges is to find worth within herself again and to be confident in her own beauty. Lynsey has learned lessons from her past, “We all have our lows and our highs. It’s actually not the straightest path that gives us the most momentum. It’s the curves that keep us moving. I have overcome a great many trials in my life, but I did so a lot of the time not knowing I was. I was just living, doing the best I could each day. Within the last several years, I have allowed it to conquer me, to shoot me down and take the self-worth I had. I didn’t make happiness a choice every day. I let depression and sorrow and being unwell take away what I had built up. And, because I did let it conquer me for the first time in my life, I lost everything I had worked to build: my marriage, my home, myself. Everything...I’ve had to re-learn what I knew as a child. That, I had worth. That, I had to choose me and not just those around me... That, if I was happy and liked who I was, everything else would fall into place. I’m still working on that last part...”. As she tries to regain what she feels she lost, she often reflects back to her attitude and recognizes that a positive attitude will help take her back to those feelings of happiness she once felt. “What we choose will send us down different paths. The millions of seemingly small decisions we make every day sets us on our course. Having an open mind to see things for what they could be and not just what they appear to be is key…Your perspective and attitude towards life will inevitably allow you to see the side you want to, good or bad, positive or negative…That’s why when I’m anywhere but home I choose to show others happiness and positivity...I’ve always thought that was something small I could do. Show others happiness and kindness, from someone the world doesn’t think should be able to. So, what will you choose?” Such a poignant sentiment in these challenging times. How can we be more than what the world thinks of us?

Through the challenges of the last several years, Lynsey has remembered to take care of herself. She likes to read, sleep, pray, and turn to her art when she is having a bad day. She also talks about finding happiness intrinsically, “Very few these days can sit in silence and be

happy with their own thoughts. I encourage everyone to get to that point. When you can rely on yourself and who you are in the silence, you will find the mastery of bad days. Not that bad days won’t happen, but you will know and understand yourself well enough to overcome the trial presented. Now, am I always good at taking my own advice, certainly not. [Laughter] But I had to learn long ago that happiness was my responsibility…One of my favorite quotes is ‘Life is a journey that must be traveled no matter how bad the roads and accommodations.’ Oliver Goldsmith. Find joy in the journey. Only then will you find a sense of self, of purpose”. Finding joy in the journey sounds easy enough until you stub your toe; however, looking to people who have faced other challenges with determination to succeed despite their own metaphorical stubbed toes can help bring us hope and courage to keep taking the next step. Though the journey may be painful, we have the choice to step again or to give up and sit on the side of the road. The journey can be made lighter when we have someone to walk with us and help us to carry on. Lynsey shares, “The best way to buoy anyone up, I think, is to be their friend, to show love and concern, and not to judge what we don’t know or understand about their life. To help them to know they are not alone and there are so many that care about them. Check in on them, talk with them. Be a consistent friend, not just a fair weather one. No one likes those. [Laughter]…Something small to us that we may have done, may have had a large impact in another’s life and we will usually never know”. Undoubtedly, each of us can be a better friend to someone in need of our friendship.

Lynsey with Her Best Friend

However, misconceptions can get in the way of friendship and learning how to truly take care of another's needs. For those curious what misconceptions there are about disability, I asked Lynsey her thoughts. One big grievance is to talk to the person as a person and not as a disability or something to fear. Lynsey emphasized that not all disabled people are happy to talk, but the vast majority of them are. Teach your children by taking the time to ask the person questions about their individual disability rather than shush them when they make comments out of curiosity. She also explained, “Misconceptions…there are a lot. [Laughter] I’m not deaf, don’t yell at me. I’m not dumb, don’t talk to me slowly. I’m not a child, you don’t have to bend down to talk to me. I’m disabled, that doesn’t mean I can’t do anything for myself. My life is different than yours, yes, that doesn’t mean it’s hard or unhappy. Oh, and those yellow lines by the handicap parking spot are there for a reason, and it’s not for you to park in. [Laughter]...Most people with disabilities just want to be treated like everyone else. We don’t like or expect special treatment...Treat us like you would treat any other friend, or family member…We are looking for the same things out of life as everyone else: love, friendship, happiness, and adventure wherever we can find it. If you can help us (when we need it) to achieve those things, that’s all we need.”

One thing Lynsey said really struck me and has made me think. She said, “Being disabled prepares you for things you don’t even realize it has. Being born disabled, means it’s all you’ve ever known. It’s “normal” to you. But, living in a world that is made for the Abled and not the Disabled is where the challenges come into play. How can I adapt to a world that is not made for me?... I had to learn at an early age to adjust life to me. In order to do that, I had to always be willing to have an open mind, to think about things differently and get creative. That ability, has helped me more in life than any other…He who has an open mind has the world in his hands. There are no limits, only limitations we place on ourselves”. I believe Lynsey's mindset can help all of us climb to greater heights. So, in what ways are you “disabled” in a world made for the “abled”? We may not have physical limitations, but we all have challenges or problems that make us feel less than “normal” or unfairly treated. How can you look for new creative perspectives to overcome challenges that the world may not be neatly presenting to you? Sure, the world should try to accommodate those with differences as much as possible, but as Lynsey suggests, your attitude in the situation can also bring you success. Looking for creative ways to solve a problem that the world isn't helping you with can boost your ability to accomplish your goals. Because Lynsey has such a great ability to find unique ways to solve problems despite the adversity that comes along with it, we may be able to consider her more "abled" in this area than most "abled" people. This is truly a skill worth learning and acting upon. On the other end of the equation, how can you be one of the “abled” people that lifts those that may be “disabled”? We have the choice to be a consistent friend, someone who cheers on others' abilities and talents. Lynsey talks about being grateful for assistance at times when it was needed, but it was encouragement and space to try new things that really helped Lynsey take to the skies.