Uniquely My Own: One Woman's Experience of Living with a Physical Disability

“I don’t know. You’ll have to ask her. After all, it is her wheelchair.” These were the words my friend said in reply to the airline employee who continued a stream of questions as if I didn’t even exist. Maria* and I had just completed the first leg of our return trip home after a week of volunteer service in Washington, D.C. with fellow classmates when we were surprised to learn that, despite advanced confirmation with the airlines, my wheelchair could not be accommodated on the connecting flight.

As a co–leader for the service trip, it was extremely frustrating to be told that I couldn’t finish the trip with everyone and that if I were going to continue on, then I’d have to make the decision to leave my wheelchair behind. I felt that leaving my wheelchair behind was comparable to leaving my independence behind. Perhaps though, what was most frustrating was the fact that once again, assumptions were made based on my appearance about what I could and couldn’t do. It was figured that because I used a wheelchair and was of short stature, I was somehow less able to make a decision about how to proceed with the rest of the trip. I was considered “disabled” and the negative stereotypes associated with such label became evident.

Thankfully, I ended up making it home to my final destination after being separated from the rest of the group and booked on a later flight. It was inconvenient and annoying to have been treated the way I was by the airline employee, however it’s just one example of the ignorance that seems to surround what I term “disability etiquette.”

I’ve lived with my physical disability, Osteogenesis Imperfecta (O.I.), for my entire life. At the age of 25 I would say I’ve come to the point of embracing my physical limitations for what they are and rarely do I ever wish that I wasn’t a person with a disability. In my personal opinion, my disability gives me a unique outlook on life and my short stature allows me to see things from a different vantage point (figuratively and literally).

Even though I’ve come to accept my disability and have worked to integrate it into every aspect of my life, it doesn’t mean that I don’t feel a bit of hurt and shock when I have awkward encounters with people who, because of a lack of experience or education, only see me for my physical nature. It’s still a painful experience when I’m reminded that some people only see me for “my label.”

Approximately three years ago I lived just outside Washington, D.C. for a year. Shortly after moving I decided to establish a connection with a primary care physician. My first visit with the doctor was strange and after he said, “I thought only boys got O.I.” I knew this wasn’t going to be a good fit. Thinking that perhaps it would make more sense to visit a female doctor, I made an appointment with a female internal medicine physician.

Getting into the office was an interesting feat in and of itself. The so–called “accessible” entrance wasn’t very wheelchair–friendly and consisted of an uneven, steep ramp. Getting in required not only my calling to tell them I was outside, but also the assistance of a fellow patient to lift my wheelchair inside. During my first (and only) visit with the doctor she proceeded to complete a basic physical exam. She asked me questions about my health history, current social history and it seemed like things were going just fine. Until, much to my dismay, after having shared with her that I graduated from a private liberal arts college with a degree in Political Science, she proceeded to ask me, “Did you go to a special school as a child?”

I couldn’t believe it! Did she really just say that? With as much composure as I could muster I replied, “No. You do realize that my disability has nothing to do with my intellectual abilities, right? I went to a mainstream school just like my friends. My disability means that I am short, can’t walk and my bones break easily.”

At this point all I wanted to do was get out of the office. I knew I’d never make another appointment with her again and this was confirmed as she tried to “push” my wheelchair as I exited the exam room. What exactly she was thinking as she tried to maneuver my wheelchair out the door I am not quite sure. All I can say is that it felt like the doctor only saw me as a medical diagnosis. Assumptions were made about my intellect based on my size, even despite having been given a bit of background on me as a person. On a brighter note, I did end up finding a female physician’s assistant who was absolutely wonderful. She got a gold star in my book!

To the doctors and to the world, my disability is visible and rare. And thus, it leads people to attend to me in bizarre ways. Take for example, the man at the train station who decided to randomly inform me that the upcoming movie, “The Hobbit” has a lot of “midgets” in it. Or the person who makes the offhand remark, “I believe” as he stares and walks past me. I still am amazed at one strange encounter I had with a man who saw me riding in my wheelchair on the sidewalk and pulled over in his truck. At first I freaked out thinking, “Oh gosh! What does this guy want? Who the heck is he?” He gave me a $20 bill and said, “God wanted me to pull over and give this to you. Have dinner on me tonight!” I explained that I didn’t need the money but he insisted. These examples are minor in the grand scheme of it all. Although, I believe they illustrate what I consider an additional layer of complexity that comes with being a person of short stature.

I am reminded of my short stature when I am navigating different places like the grocery store, checkout lanes, store aisles and service counters. Or when the waitress sets my glass of water too far out of my reach. Getting the can of bean soup five shelves above my head is one of those things that I dare not attempt by myself because the likelihood of me taking down the entire shelf is quite high (no pun intended). I’ve knocked down my fair share of display units in my best attempt at navigating store aisles. While on the one hand I’m laughing inside, on the other I am outwardly blushing a red of embarrassment at the attention that’s aimed towards me. I have also managed to tangle a good number of shirts and pants in my tires and yank down tops from higher racks when I’m out clothes shopping. The strength and height that is required to heave groceries onto the checkout conveyer belt is remarkable and I’ve learned to no longer struggle by myself, but just ask for help from the person ahead of me if they haven’t already offered (which actually happens quite a bit).

Often times I ignore the challenges my height presents to me on a daily basis partly because I’m used to them, and also because if I held on to each one I might just go completely insane or sink into a hole of self–pity and depression. Instead, I’ve accepted what is my current reality and done my absolute best to embrace it and find the humor in it all. For me, a day without laughter is like a day without air—unlivable.

However, if I had to pick one aspect of my identity that my short stature and disability collides with I would have to say it rubs up against my gender—being short, disabled and female is a tricky combination. Giving hugs to friends is an interesting thing because my arms never wrap around someone’s torso and instead I end up hugging one’s chest, which is awkward. Same goes for when others are hugging me, my face ends up getting smooshed into their chest and that’s sort of awkward. On top of it, my glasses get crunched. Being a significantly short woman has elicited interesting descriptors from others when they feel the need to “label” my presence. I’ve been called, “Precious,” “Cutie,” “Honey” and “Awww, well aren’t you just cute!” These are words we use to describe kids, not women in their mid–twenties. I would rather be called “Beautiful” and seen as a mature woman and not be referred to with childlike adjectives. But, the size of my body leads people to characterize me as a child.

I am well aware that I have multiple scars spanning across my body and that I am not a supermodel (nor do I really want to be). I know that I don’t have long skinny legs or voluptuous curves and I know my feet will never fit into a pair of red high heels (although, I do have an adorable pair of red ballet flats), and that’s okay. I know that when it comes to disclosing my disability, I have no real choice in the matter because my wheelchair is pretty obvious. Sometimes that’s frustrating but in general, I think it serves as a great “pre–screening” tool when it comes to potential relationships.

I’ve come to realize that there are probably a lot of assumptions made about my body and my sexuality as a woman with a disability. I can’t be sure of what goes on inside the male mind, but my guess is that there’s an uncertainty as to whether I can be intimate, have sex and have children. These are totally legitimate questions and are undoubtedly issues that are bound to come up eventually in a relationship. In fact, if these topics were never talked about I would question the health of the relationship. Being short and having a disability does not negate the needs and desires I have as a woman. I would much rather have someone ask me about these things than assume what’s in the realm of possibility.

Setting aside the challenges, frustrations, embarrassments, pain and fleeting moments of disliking my disability, overall I consider it to be a great blessing in my life. I like to believe that it has allowed me to be in solidarity with certain segments of our population who are often times ignored or looked down upon. I consider myself belonging to a minority group—persons with a disability. I spent a year and a half working with a diverse group of men, women and juveniles who were incarcerated in a Wisconsin jail. My disability gave me a way to connect with inmates. I could empathize with them about what it feels like to be a minority and have people assign labels to you, as is often the case with people who are incarcerated. While I could never say I knew what it was like to be dealing with an addiction or what it felt like to be away from my children, I did know what it was like to have people look at you and make automatic assumptions. I did understand the challenge of having to advocate for your rights and get past initial judgments others make. These similarities provided me a foot in the door in establishing a sense of trust when interacting with the men and women.

I can still remember one encounter I had with a kid who was being held in the juvenile detention wing of the jail. She was a 14–year–old girl who was facing transfer to a long–term facility for female juvenile offenders. Initially, she seemed a bit suspect of who I was and apprehensive to open up about what was going on in her life. However, it was after I asked her questions that honored her reality of having a cleft palate, which left her slightly disfigured, and sharing a bit about what it’s been like for me growing up with a disability, I made a connection with her. I didn’t get to meet her for very long afterwards due to her being transferred, but I like to believe that during those limited encounters, she felt like she wasn’t alone. I hope she felt like someone was in solidarity with her despite our individual differences.

One time after meeting with a middle–aged man who was facing an extensive period of time for armed robbery and numerous drug charges, he ended our conversation explaining that even though he was looking at a lot of time and life was hard in the jail, he felt a sense of hope and inspiration by my presence. He explained that when he felt like he was caught in his anger and felt sad for himself, he said he thought about my disability and the way in which I have faced and embraced my challenges. It was then that he no longer felt such self–pity. My disability reminded him that he wasn’t alone in the world and he wasn’t the only person who faced challenges. And so, it was my disability that enabled me to make a difference for this inmate.

My disability has particular meaning and value in and of itself. It is an inseparable part of the experiences I have in the world. My relationships, my actions, my ways of making the world a better place are all expressions of me, but in being unique to me, they are ultimately expressed through my body and thus, my disability. And increasingly, I have embraced my physical limitations for what they are because they make me the woman I am in relation to the world.