I’ve been putting off writing this post for a long time, maybe even years. The reason? Pain. It is so painful to talk about. Even though I’ve done my best to prepare myself mentally, the pain in my chest feels like I’ve been kicked in the sternum with a steel toed boot. In the end, this took me three days and seven or eight sessions to write. My MA thesis was much easier, although the process was considerably longer.
Let me further preface what I am about to explain with the fact that I know I am a very privileged individual for many reasons. The privileges I possess have certainly made my life easier in a lot of ways, and I’m extremely grateful for that. But that doesn’t mean my life has been easy, and I would argue that my condition has made it quite hard for me at times.
I have syndactyly; or more specifically, I have complex complete syndactyly of the left hand. This means the bones and soft tissue in two of my fingers are conjoined. Additionally I am missing a number of muscles, ligaments, joints, bones throughout my hand as well as my index finger completely. Syndactyly is a congenital condition resulting from the fetus developing improperly during the first trimester. Although it is considered the most common hand defect–occurring in 1 of every 2000 live births (Jordan, Hindoncha, Dhital, Saleh & Khan, 2012)–it is still a relatively rare condition, with complex complete syndactyly being among the more rare subtypes. Indeed, I have never met anyone else with syndactyly even though I’ve made a concerted effort to do so.
If there are functionality issues with the hand surgery is required, though surgery is often chosen for aesthetic purposes too. As a child I had four surgeries with skin grafting to improve my grasping abilities in an effort to facilitate my ability to complete fairly normative tasks as much as possible. The first at nine months, the second at three years old, the third at five years old and the last at thirteen. I may also have wrist problems (osteoarthritis) associated with the syndactyly which has resulted in two additional surgeries, where parts of my bones have been removed and steel has been added for stabilization purposes. I had the first of these surgeries at twenty-six, and the second a couple of weeks ago at twenty-eight.
Given that I was born with syndactyly it’s always just been part of me. I would have known very early that I was different than most other people. In fact, I cannot remember having a conversation with my parents about it, so it must have been something I either figured out or internalized at a very young age. It is part of my identity: this is all I know. I’m covered in scars from skin grafting and the surgeries, and they too are just part of me and who I am. Similarly, although there are a few things I physically cannot do, I have figured out my own way(s) to do other things. Again, this is all I know.
I do the best I can with what I have and although at times I can become extremely frustrated with myself for not being able to do something, I manage well for the most part (this might be why I can be characterized as difficult and stubborn). The reality is that my problem has been–and some way or another always will be–other people.
I have been dehumanized by doctors and nurses more times than I can count. Yes, I know, you’ve never seen a real live person with syndactyly before; I’m interesting and an anomaly and you may never get a chance to do a physical exam, I get it. But if you’re going to treat me like a sideshow attraction, you should be paying me for my time (I’m a broke student, I need all the help I can get). That also means don’t touch me without my permission and it certainly does not mean you can grab my hand and start poking and prodding. Furthermore if you say something like “what’s wrong with you,” or “what’s this thing you have going on here” and I’m not in a situation where I need emergency or urgent care, don’t be surprised if my other hand and your face get well acquainted.
There is a saying that children are cruel, and that is something I learned all too well. The National Foundation for Syndactyly Research, Support and Education (or NFSUS, an American organization) has described what I would describe as my childhood:
[Syndactyly] is a condition the child will have for life and they are often subject of ridicule by other children that can lead to low self esteem.
I certainly was teased and ridiculed by other children, not only before I started school but into my teens. It was children I would meet at the park, the older and younger siblings of my friends, my classmates; you name the kind of acquaintances and/or relationships that exists in childhood and someone made fun of me. It hurt then because I couldn’t understand why it was such a big deal. Although I understand now why it happened it doesn’t mean all of the hurt that was caused has magically been erased. Like the surgical scars, I carry a lot of mental ones, too.
It probably hasn’t helped that as a child I noticed adults whispering to each other and pointing at me. Not receiving adequate accommodations in gym class for some units and getting cut from certain school teams without explanation didn’t help things either.
By around seventeen I realized that it had become an unconscious habit at some point to hide my hand. My sleeves are worn long, my hands are often in my pockets, my arms are crossed, or if I’m sitting my hand is between my knees. I still do these things when I’m with close friends, family or even when I’m alone. I’m that uncomfortable in my own body all the time.
I get really worried about eating in front of people because I’m worried they’re going to notice and say something mean. When someone touches my left arm unexpectedly I flinch. Dancing of any kind makes me anxious. I don’t like signing forms and receipts on counters. Putting groceries on the conveyer belt or handing clothes to a salesperson worries me. Taking my drivers tests was a nightmare. I don’t like that I feel so insecure, but this is what happens when you live in a society where the idea of difference correlates to something negative.
At the same time, I’m kind of lucky that folks are generally not very observant: sometimes it takes people a little while before they notice. But when they finally recognize that something isn’t “normal” I can always tell: a glance that is a split second too long, a double take, a crinkling of the forehead, or a full out stare. You’re not being discrete when you do these things. A lifetime of this behaviour has made me extremely observant (in more ways than one). No matter what you do, I will see.
This doesn’t mean if you ask me why I look different that I won’t answer. Unless you are being rude–saying something along the lines of “what’s wrong with your hand?”–I will answer. I have been asked about my difference my whole life, so I know how to answer in a way that can be understood.
All of what I have written prefaces what has been the hardest part of my relationships with other people. More specifically, the worst aspect has been my relationships with men. Do you know what it’s like to be with someone who will not touch or hold a certain part of your body for whatever reason? It hurts; it hurts a lot. It’s something that happened to me as a teenager which is sad enough, but it’s also what I’ve dealt with as an adult while seeing other adults. Not every partner, but most of them.
When I was younger I had always hoped that as an adult that people would be more accepting of my difference; that it wouldn’t be a big deal, that it would just be part of me like my eye colour, habit of wearing a lot of black or my preference for pizza. It makes me sad that it apparently takes a special kind of person to treat me how I deserve to be treated.
So why am I saying all of these things? Why am I sharing my pain so openly? My experiences have made me who I am. I’m very empathetic and observant for a reason. It’s why I was drawn to social justice causes at a young age and why critical race studies has informed so much of my scholarship to date. I believe that there are many things that can be done to make a world a better place so that everyone can be treated with equity. Having been on the receiving end of some pretty awful stuff I think it is a fairly transparent goal on my part.
I am however not at yet at that point to bring my own experiences into my work. I’m still learning how to articulate my memories, thoughts and feelings with respect to having syndactyly: it’s painful and exhausting work. The medical side(s) of syndactyly have been and will continue to be explored in academia, but I’m not sure what exists in other disciplines like, for example, education, cultural studies or disability studies. I do think my experiences are something I should pursue academically, but I’m not sure if this is the time for it. I will need to reflect and think on it some more.
After reading all of this, now what? I don’t want your fucking pity; this isn’t some self-masturbatory exercise to get you to feel sorry for me. Fuck that.
All I want–and I really don’t think it’s all that much to ask–is for you to treat myself and other people with disabilities and chronic health conditions with humility and respect. Our lives are sometimes very challenging and it’s important that we are treated as the human beings we are. A little bit of empathy goes a long way.