Friday, July 01, 2016

Special Needs Spotlight || Elizabeth

A big Happy 6th Birthday to my sweet little Lamp today. I honestly can't believe she's 6! You may remember the Special Needs Spotlight I did on her last year. It was a great way to tell our/her story for new and old readers alike, so check it out if you have time. And how is this for a crazy coincidence, today also happens to be the birthday of today's Special Needs Spotlightee Elizabeth! Small world. So welcome Elizabeth and I hope you have a happy birthday as well. XO

Intro: Hi, Miggy! Hi, everyone! My name is Elizabeth and I’m in my late 30s. My husband and I live outside of Philadelphia, where I am a writer and editor, as well as a soon-to-be full-time grad student. I don’t really fall into a specific category: I was born a conjoined twin (my sister did not survive our separation at three weeks) and, due to my circumstances, have had one leg since birth. I also have one hip and a fused spine and pelvis due to a spinal fusion when I was a teenager. I choose not to use a prosthetic limb and have used crutches exclusively since I was 12. I am pretty private, and most of my advocacy has been through small speaking events and personal discussions; so, I am very excited to speak with you on what it’s like to be an adult with a physical disability! Hello!
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Miggy: Welcome Elizabeth! Thanks so much for being here today and sharing your life and perspective as a disabled adult. As you said you were a conjoined twin and underwent a separation surgery at just 3 weeks old. Unfortunately your twin sister didn't survive. What have your parents and family shared with you about that time and what it was like for them? At what age do you first remember being aware of your differences and do you remember how you first felt?

Elizabeth: Truthfully, when I think of my birth, I think of it as solely my parents’ experience. I asked them to share some of their memories of my birth and development for all of you. I do remember a story they told me over and over again as a child, with a few details supplied by mom: at only 3 or 4 days old, I apparently had pulled out my breathing tube and had breathed fine on my own for hours, which no one expected. My mom says I thrived after that! I started crawling on my tummy when I was 6 or 7 months old, started OT and PT at 14 months, and started escaping from my crib at 18 months. By that time, I was crawling on my three limbs (like a seated crawl, or a little crabwalk/scoot). I received my first prosthesis at 6 months so I could sit up on my own. Once, my mom left me alone (I was about 14 months old), and when she came back I had climbed to the very top of my dad’s upholstered rocking chair. She was terrified I would fall off, but I was able to balance like a champ. I think they had very understandable fears. Would I walk? Would I be OK? Would I develop normally? What would childhood/teenage years/adulthood be like? Would I grow up okay, find love, and have a family?

I know my little accomplishments were huge for them. My mom told me, “You walked for the first time on the sidewalk outside of our house, with your prosthesis on, pushing a heavy wooden cart. I cried!” My dad tells me I’m the wish they didn’t know to wish for.

Since I’ve been missing my right leg since I was a baby, I don’t know anything else and can’t recall a particular time when I was young and thought, “Hmmm. I’m different!” I remember little things, like my first swimming lessons, the first time I swam the length of a pool, adaptive P.E. in kindergarten, and getting my cousin to help me hide my back brace (which I wore at night to help my scoliosis) from my mom and aunts because we was so sure they wouldn’t find it (sorry, mom!). So, my actions and feelings were, I imagine, very similar to able-bodied kids (like thinking I’m smarter than my parents and hiding my back brace, because don’t all kids try to be sneaky?); however, the situations were obviously very different. I do have memories of being in the hospital for some of my early surgeries, but even those are primarily memories of love and being surrounded by my parents and grandparents. There is no before and after for me, and so my very early childhood seems to be a mix of what I think able-bodied children have—school, playgrounds, siblings, and birthday parties—and my life—doctor’s appointments to have my prosthetic limbs fitted, hospital visits, and lots of scooting around.


Miggy: Can you talk a little about what your childhood and family life was like growing up? How did your family treat your differences and did you have a lot of support from your parents and siblings? Is there anything you wish they would have done differently?

Elizabeth: I had a tremendous amount of support from my family, especially in middle and high school. I wouldn't change a thing. As I got older, I really wasn’t treated all that differently from my siblings or cousins unless I was having surgery or dealing with something related to my health. Middle school and high school were difficult. I had two very significant surgeries in middle school (my spinal fusion in sixth grade and hip surgery in eighth grade). Both kept me out of school for months and rehabilitation was an incredibly long, painful process. I was in a wheelchair for much of middle school, and my hip surgery required me to be in a body cast for 6 weeks. I’ve had to learn how to walk many times, ha! I can recall the experiences like they were yesterday, and I think of those years as the first times I really felt different from other kids my age. Sometimes I do lay in bed at night and think about what my body went through before age 18, and quite honestly, give myself a little pat on the back. Kids are pretty resilient, aren’t they? It’s interesting, because I do remember becoming incredibly aware of accessibility and living in an able-bodied world during those years. That’s when I started to figure out I live in spaces that aren’t quite made for people like me.

High school was more of a difficult time for me emotionally. I also have a chronic illness, and the combination of, well, high school (it’s tough for so many kids!), being sick all the time, and being so outwardly different made my ‘teens hard. It also took me a while to get my license (which of course is absolutely traumatizing when you’re 16!) because I had to take adaptive driving lessons. But I did! I have a very loving family, and my parents were my safety net during those years. I simply have no idea how I could have gotten through it without them. They kept me brave and were my biggest fans. I imagine it wasn’t easy, taking me to doctor’s appointments, with a walker, prosthesis, jobs, responsibilities, and other kids to care for, not to mention the typical teenage shenanigans I got into (and there were a lot).

I’m the oldest, and am so very grateful for my two little brothers. I like to think of siblings as your first best friends, and I think that was true for us. We had your typical sibling relationships—we fought, we played, we laughed, we grew up together, we drove our parents nuts. I don’t think any of that was affected by my disability, but at the same time, I can’t imagine it was easy as I know I took up a lot of my parents’ time and resources. I do remember them both being extremely protective once they got a bit older. When I was in my body cast, both brothers would keep me company, bring me toys, and show me what they had made at school that day. I wouldn’t change a thing. They also did very typical little brother things once I was in high school, so in that sense, we weren’t all that much different from other families.


Miggy: I know I speak for a lot of special needs moms when I say I worry about my daughter being bullied for her differences. What was life like for you socially growing up? Were you ever bullied? If so, how did you handle it? Do you have any advice for special needs moms in dealing with these sort of situations?

Elizabeth: I don’t remember being outwardly bullied in school, and I think high school is such a difficult time for so many kids. My parents were always very patient, quick to remind me how much they loved me, how brave I was, and encouraged me to focus on things I loved. I was always swimming, painting, drawing, and spending time with my family and cousins. I had your typical teenage fears: Would I be invited to parties? Would I be able to drive? Would I get good grades and into college? The difference with me, though, is that I always worried that if one or all of these things didn’t happen, was it because I had one leg? I wish I had magical answers for all moms and dads out there; something to ease all of your fears. I encourage you to keep being your kids’ biggest fans, while also reminding them that you will be there to walk them through everything. Remind them that you have confidence in them, and remind them of the small victories and accomplishments. For example, I remember being told what a good older sister I was. It had such a positive effect on my self-esteem because being a big sister was a huge part of my identity growing up. Yes, I have a disability, but it does not define me. As they grow, your little ones will have ten million other qualities and experiences that also shape their personalities and happiness. They can thrive with encouragement, love, and the knowledge that so many people are there for them. Knowing I had my parents rooting for me helped me survive so many difficult things. It gave me the confidence I had when I entered college, which is when I think I started to flourish.


Miggy: As an adult can you tell us how your disability affects your day-to-day life? How has it changed over the years?

Elizabeth: In college and my 20s, I was more focused on cultivating friendships, having a good time, and creating a life for myself. My disability has always affected my day to day, but I definitely let it roll off my back more when I was a young adult. Because I am visibly disabled, I’m also responsible for what society thinks of me, my body, their questions, and their opinions. And my goodness, unsolicited/unnecessary commentary and opinions are everywhere! I used to live downtown, and would encounter curious people multiple times a day. I think that 10 years ago, I had a lot more patience. I was more open to being stopped on the sidewalk and listening:  Why I prefer to use crutches? What happened to me? Do I need a ride somewhere? Did I see that Discovery Channel episode on prosthetic limbs? How awesome is it that I can park in the handicapped spaces? And, my favorite: can I tell you all about your body even though you’re an adult and probably know more about it than I do? There are times I just wanted to yell, “HEY, BUDDY. I’M STANDING HERE WITH 5 GROCERY BAGS AND THEY ARE HEAVY. STOP TALKING.” But I didn’t. My response to these questions now depends on my mood. Sometimes I just want to be left alone to do my grocery shopping, and sometimes I’m more than happy to talk to people. At around 30, I became much more of an advocate for myself, and realized it was 100% okay for me to not answer people’s questions. I’ve always said that I understand why movie stars hate the paparazzi so much. I grew tired and completely drained. Now, my husband and I live outside of the city and life is much quieter. I feel more in control, happy, and don’t feel as overwhelmed as I once did. He is also very aware of these situations and it's helpful to have my partner advocate for me.

Physically, I have always been very active. I have an adapted car, I can take most public transportation, and as long as a building has an elevator (I’m deathly afraid of escalators—eep!) and ramps, I’m good to go. Life can explode if my car breaks down and I have no way of getting around, or if there are no elevators. That is a pretty terrifying feeling of helplessness. Also, I’m always hyperaware of how the able-bodied move in big crowds or on sidewalks. There doesn’t seem to be much awareness for the people surrounding them. I am so grateful that it’s physically impossible for me to walk and talk/text on my phone at the same time! To me, it looks so strange when people do that. Stop bonking into me because you aren’t paying attention! It’s my sidewalk and my space, too. I have shoulder issues now and have had to quit swimming and rowing, two sports I love, which has been pretty devastating, especially since there are so few sports I feel safe participating in. I’m working through that a little bit every day, and hope to be back in the water over the next year. But there’s always that little part of me that says, “You’ve got this.” I’ve already been through so much. And when I don’t believe it, my husband helps me.

As I got older, I began to realize how much my experiences as a child with a disability have shaped who I am as an adult with a disability. Sometimes it’s hard to connect with able-bodied adults on certain topics because aspects of my own life has been so different in so many ways. For example, I remember being as young as 17 and thinking I could not possibly imagine willingly putting my body through anything else that wasn’t medically necessary to my survival, including pregnancy. This is a very difficult thing for some people to comprehend. I come home and joke to my husband, “Why don’t people with two legs understand my decisions?? It seems so obvious to me!” But also, it’s okay! Here’s the thing: I feel so incredibly lucky to have been completely aware of and in tune with my body and abilities at a very young age. I consider it an advantage of my circumstances. And it’s strange, because people react to me like I’m not at all aware. I will probably spend the rest of my life trying to negate that stigma. I have always had to constantly listen to my body; I am always thinking about my next move. I don’t even know if I’m articulating it well because it’s such an abstract concept in so many ways, so I’ll share this quote by Susan Wendell:

“Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, 'normal,' and sane...If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.”

I have had to be 100% aware of my abilities since day one. I tell my husband that my mind is always racing; I’m always thinking about my next step, how I’m going to carry something, or how I’m going to maneuver around something else. I always joke that while we’re on a hike, he is pointing at the beautiful scenery or a bird in the sky, and I miss it all because my brain is 20 feet ahead of me, planning how I’m going to jump over a log that is blocking the path! As frustrating as it can be, I wouldn’t trade this level of awareness for anything. Also, I never have to pair my socks after doing laundry, which is kind of amazing.

I remember when my husband and I got engaged and I was so surprised when someone asked me if I was going to get a prosthesis for our wedding ceremony. At the time, I had no idea what on earth this person was talking about, until I realized that even at my age, I’m supposed to want to fit in to the able-bodied definition of “normal.” I guess I was supposed to want to walk down the aisle on two legs. But why? What does normal even mean? A dear family friend decorated a pair of my crutches in white lace, flowers, sequins—the whole nine yards!—so they would complement my wedding dress. That’s my normal. The only reason I would have had for getting a prosthesis for my wedding is for the shock value and seeing guests’ faces when I suddenly had two legs after a lifetime of one.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Elizabeth: Absolutely! I could tell you stories all day! When I was younger and would go out at night with friends, we’d have fun coming up with crazy answers to strangers’ questions. For example, once someone asked me if “it was part of my Halloween costume.” Why yes, it is, I told him. “I left my other leg in the car.” He was quite bewildered at this response. Another time, I was shopping for tights and asked the saleswoman where I could find them. She looked me square in the eye and said, “I’m so sorry, we don’t sell one-legged tights.” What? Hahaha that one still makes me laugh.

My favorite questions always come from kids! I have been asked if I was eaten by shark, if I’m hiding my other leg, or if I can make it disappear and reappear. Also, sometimes when I’m cleaning the house, I’ll get down on the floor to clean the corners, and scoot from room to room. Sometimes I’ll look up and think, “Where did I leave my crutches??” And I’ll have to call for my husband to help me find them. It’s always a bit of a gamble, because what if he’s in the basement and can’t hear me? That’s happened before.

And then I have personal experiences that are just so far off from what most people experience. I started college and realized my “fun stories to tell at parties” were very different from everyone else’s. “What? You didn’t have a flamingo-pink body cast? You weren’t strapped down in your body cast with bungee cords in the back of your parents’ car for the three-hour drive home after recovering in the hospital? You didn’t have a large collection of old prosthetic legs in the basement when you were growing up? You didn’t learn how to pick things up with your toes because you aren’t bendy? Oh.”


Miggy: Living with a visible disability has unique challenges, in an ideal world how would you like people to approach and/or respond to you? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Elizabeth: I’m going to quote my niece, who, when she was about 4, was asked by another child why I had one leg. Without skipping a beat or looking up, she replied, “Because she just does.” The other child said, “Okay.” And that was that. It’s obviously more complicated, but it doesn’t always have to be. I encourage parents of kids who ask questions to not make a huge show of it. Rather, talk to them quietly and remind them that everyone looks different. It’s always ok to ask me if they can ask a question. Just understand that sometimes I may smile and say no. However, I am much more apt to engage in a conversation with both kids and adults if they ask me first.

I also encourage people to keep in mind that their curiosity is my life, my past, and at times, my family’s pain. What may seem like an innocent, offhand comment or question to you may bring up topics or feelings I’m not prepared to talk about right then and there. And that’s why I may say no. Be mindful and be considerate. Don’t push for information. And don’t assume that I can’t do something. That’s the worst!


Miggy: I've written a few posts about the problem with pity (here and here) when it comes to having a disabled daughter and how her biggest obstacles aren't her physical limitations, but the limitations that come from society and from people who "feel bad for her" or think of her as a "poor thing." I'm curious if you agree that physical limitations are smaller problems than pity and the way the public views the disabled community?

Elizabeth: Yes, I absolutely agree that pity is a much larger problem than my physical limitation. Pity is so unnecessary, and so is a refusal to actually hear me when I say there's nothing to feel bad about. These have been the most difficult concept to grapple with in adulthood. It does feel like I’ve been spending too much time trying to be heard. How am I brave for going to CVS to pick up my prescription? Why is anyone proud of my husband for being with me? Why are you negating me when I say I have made choices for my physical body based on my past because you can’t imagine anything other than the way you’ve done things? Pity enables society to keep us down, minimize our accomplishments and life choices, and quiet our voices.

I think the answer is a combination of “my experiences are not the same as yours” and “but let’s talk about it, because maybe there are shared feelings and thoughts we can explore together.” I have a dear friend who, after having a baby, talked to me about suddenly having to re-think about how to organize herself to get out to the car or run errands because her mobility was different now that she had a little one. “Is this is a little what life is like for you all the time?” she asked. Yes! We had such a good conversation that day.

People with disabilities have grown up knowing there are many different perspectives and many ways to accomplish something. I don’t remember ever learning this; I just knew. Therefore, there's no need to pity or feel sorry for me, because I get to see the world through this pretty amazing lens. There isn’t one definition of family, or one way to be a woman, or one ideal body, or one version of success. I actually look forward to challenging the narratives and beliefs of the able-bodied and growing as I do this. Sometimes you have to cut your losses with some people and move on. They just want to hear themselves speak and aren’t willing to accept my version of life and that it's pretty great. But I keep surrounding myself with those who do listen and working hard to continue the conversation, hoping that they will too. I’m determined to keep doing what my parents started and instilled in me. I’m so happy to be a part of your site today because you do so much to knock down stigmas with honesty and integrity while simultaneously displaying the nuances. It’s beautiful.


Miggy: Lastly, is there anything else you want people to know about you, your life or disability in general? If you could give any advice to mothers with physically disabled children, what would it be?

Elizabeth: Despite my differences, I have still experienced heartbreak, joy, disappointment, love, and laughter, like everyone else. I’m grateful for my beautiful friends, family, and husband. I will keep on fighting the good fight and having important conversations for the kids who come after me. I’m going to keep arguing against the social narrative that bodies are supposed to look a certain way. And if you happen to be a departure from “normal,” that you must secretly want to be like everyone else. Don’t get me wrong, some things would be much easier if I had two legs and didn’t have this wonky little body, but I don’t know anything else.

Regarding your second question, I reached out to my parents their thoughts since I’m grown and they have a lifetime to look back on: “Get all of the information on your child’s disability and do not be afraid to ask questions or seek second opinions; be your child’s advocate; love your child without reservation for who they are; let them be as independent as possible; let family and friends help if they can; let people help you so you can get out with your spouse, even if it’s just a walk around the block; you will learn so much from your child even if they can’t communicate; and, finally, remember your child is a gift!”

To you moms and dads out there, I can promise you that my life is filled with joy. And where there is pain, I figure out ways to get through it. Every day is very much a journey, but your child is a brave little toaster and will have more determination and persistence than you can possibly imagine. It will be so hard at times, but remind yourself and your child he or she is the wish you didn’t know to wish for. You’ve got this.

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Elizabeth, this was SO GOOD. I don't even know where to start. But I guess I'll start here: I loved your advice to moms of children with disabilities "Yes, I have a disability, but it does not define me. As they grow, your little ones will have ten million other qualities and experiences that also shape their personalities and happiness." Yes--we are all "ten million" other things. And I love the perspective you give for all of us able-bodied people on how exhausting it can be, not having a disability, but EXPLAINING your disability to the world around you: "Because I am visibly disabled, I’m also responsible for what society thinks of me, my body, their questions, and their opinions. And my goodness, unsolicited/unnecessary commentary and opinions are everywhere!" And my goodness YES to becoming an advocate for yourself and knowing that it is 100% OK not to answer people's questions! I really want Lamp to know and understand that. But probably the thing that stuck out to me the most was when someone asked you if you were going to get a prosthesis for your wedding. "At the time, I had no idea what on earth this person was talking about, until I realized that even at my age, I’m supposed to want to fit in to the able-bodied definition of “normal.” I guess I was supposed to want to walk down the aisle on two legs. But why?" For me that really cements so many of the issues and flat out discrimination (and pity) that the disabled community faces--WE (and I include myself in this because I totally related to the able-bodied woman's question) do expect disabled people to want to look like the rest of the able-bodied population. And when I ask myself why...well that's a whole other post but it has a lot to do with assumptions, fears and prejudices. Elizabeth again thank you so much. That was wonderful. You really opened my eyes to some issues that I know I needed to understand and learn more about. And HAPPY BIRTHDAY. I sincerely hope you have a wonderful day.

As always you guys if you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com! I'm definitely in need of some new spotlights so spread the word!

Happy 4th of July weekend.
XO,
Miggy

10 comments:

  1. Elizabeth8:09 AM

    Happy birthday, Lamp! Miggy, thank you so much for the opportunity to collaborate with you on this Spotlight. It means so much to have a safe space to share my experiences, especially with a community that understands where I am coming from. Have a wonderful holiday!

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  2. This was such an incredible spotlight!!! Thank you SO much for sharing your life!

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    1. Elizabeth1:35 PM

      Thank you, Michelle! I appreciate the support!

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  3. I want to thank Nathan for sharing this article with me. I knew we had a synergy when I met him last year and now I know why. All of your comments, your story, resonated with me and our story of our 28-year old daughter with autism Each disability is certainly unique to that person but the social aspects are common and the concerns and hopes and fears are real. Thank you for putting your story to words so passionately.

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    1. Elizabeth12:37 PM

      Thank you, Jim! We had such a nice time seeing you and all the great work you do at Our Community Cup in January!

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  4. Thanks for sharing, Elizabeth. I learned a lot. Happy birthday!

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    1. Elizabeth1:34 PM

      Thank you so much, Cathy! Happy summer to you!

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  5. Such eloquent insights (you're clearly a great writer, Elizabeth!). I learned and grew reading your responses -- thanks for sharing.

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  6. Such eloquent insights (you're clearly a great writer, Elizabeth!). I learned and grew reading your responses -- thanks for sharing.

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  7. Elizabeth1:35 PM

    Thank you, Susan! I appreciate your kind words, and for taking the time to read the piece. Have a good day!

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