Goldenhar Syndrome

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Goldenhar Syndrome
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    The Toxic Myths I Internalized as a Person With Facial Differences

    I am 58 years old, married, have two teenage children and a Ph.D. in clinical psychology. Yet there is a simmering part of me that feels worthless – someone to be tolerated. Someone deserving of being thought of as “deformed.” While I know these terms are eschewed in contemporary nomenclature, this is the language I was raised with – along with other equally toxic terms that I have internalized and have contributed to my confusing jumble of assertive militancy and self-sabotaging acceptance of mean-spirited or clueless comments. When it all boils down, I remain vulnerable to defining myself as someone who has managed to be “successful” despite being born with a birth defect called Goldenhar syndrome. I constantly work to really believe I am successful because I was born with a facial difference. For me, part of this process is being seen – strengths and vulnerabilities. Whole. I have colleagues who have taken up the mantle of advocacy – who are proud of who they are and working to increase awareness and acceptance in the broader community. I have mostly stayed silent. I have recently started asking myself – why? I will not bore you with the recount of decades worth of therapy. What I am coming to appreciate is that shame-based silence normalizes the idea that different is “less than.” I suspect I am not the only one who has been the recipient of comments like “she is so smart, talented, kind, funny (fill in your favorite attribute of choice). What a shame she looks like that.” I think that there have been some sentinel experiences that have shaped how I related to myself and the world around me. The voice inside my head is berating me as I write this, telling me to be quiet – no one is interested. In an effort to tell the sneaky critical voice inside my head to shut the blank up, I’d like to share a bit of my story. Myths are stories we tell ourselves to understand things that either do not make sense or serve as cautionary tales or to establish norms about what is acceptable and what is not. There are two central myths I was told about my birth. My father told me that when I was born, my mother and her two sisters sat shiva and wailed and grieved. Shiva, for those who might not be familiar with this term is the ritualized period of mourning following a death that observant Jews practice. My mother insisted that my premature birth was met with great joy and celebrations. As an adult, I recognize that probably there was a little truth in both “creation” myths. What I do know is that I was aware I was different and “less than” since I was quite young. Virtually all my school pictures were taken in profile to hide my “bad” side. I remember waiting in line with all the other children to have school pictures taken. I jumped up on the stool when it was my turn and sat tall facing the camera. There was usually a pause and then the photographer would ask me to turn to the side so they could get a “good” picture. I never thought twice about it – it was just my norm. Having pictures taken is still hard for me. I have lots of similar stories but sharing “war stories” is not the point of this. As I have been chewing on my lingering sadness and insecurity, the incongruity of my external professional, confident persona and my internal shame and sense of unworthiness have increasingly weighed on my heart. I find myself tearful when I read the powerful accounts shared by advocates for awareness and acceptance of facial differences. I share now because I have often felt alone and isolated in my feelings of shame and unworthiness. I know I have learned to mask my vulnerabilities and have spent much of my life finding ways to be useful as a way of “making up” for my appearance. As if by proving I was smart and could make a meaningful contribution to society, somehow my “deformity” might be overlooked or forgiven. I could find the acceptance I so crave. I am wise enough to recognize that the only acceptance that will set my spirit free is the acceptance I give myself. So I take the risk to share the impact my internalized myths have had on how I relate to myself and the world. I always worry that if I share my “truth” I will be pitied — something devastating to me as it feeds the part of me that feels I don’t deserve to be in this world. I find myself fighting the urge to point out all my accomplishments, as if to erase the vulnerable words and reassure myself and others that I am fine. Competent. Normal. And sometimes, I am. It is helpful for me to be “seen” as the urge associated with shame is hiding. I’m pretty good at hiding. I suspect that I am not the only one who struggles with trying to find peace and internal acceptance.

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    Netflix 'Skin Decisions' and Society's View of Beauty

    I have 25 visible scars on my body representing 103 of the surgeries I have been through. I know for a fact that the seven long thick lines across my stomach represent 52 surgeries I’ve had on my digestive system alone. The two on my ankles represent the many times doctors failed to find veins in my arms and had to resort to using odd places. The two between my thighs represent even more desperate attempts to try and get the things back to working. The one across my back is a story from when I was a baby and the small one over my right breast is the time I had surgery on my heart. And yet through all the scars, I rejoice in having no regrets. You know, I get this statement all the time: “ You  would’ve never known you’ve had all those surgeries just by looking at you.” And I chuckle internally and think to myself, “Well, I hope not, because I’ve had a lot of work done.” They only see the “me” I present to them fully clothed. But if they ever looked underneath my shirt, or searched along my scalp, or glanced inside my mouth, they would see even more invisible scars that are connected to very visible experiences. Physical scarring can be the enemy of our eyes because the physical mark says one thing and the story behind them tells another. To me, having scars is a signal to the rest of the world saying, “Hey, something happened and my body will never be the same.” I may change, but the memory of that scar will last forever. How daunting this thought is — to have a mark on your body that can last forever. And what happens when that scar is connected to a source of pain?Does that mean the pain lasts forever? I know I have one scar on my stomach, it was where my last feeding tube used to be. And every now and then I remember all the pain I had with that button and how it was a source of both physical pain and emotional anguish. And even though I’ve had that scar for 10 years, every now and then when anxiety is high and my fears try to drown me, I jump out of bed in the middle of the night touching that scar as if I was 16 years old again. But then, I have scars that have no emotional connection, scars to me that simply exist. Scars that have remained because I was either too young to know their pain and scars that have become too old that their pain simply fades away with time. When I look at them, I don’t see pain or even feel pain, I just know I had an experience. And then I wonder, what would my life be like if I never had any of these scars? Would the memory of them be enough? Would the pain that caused them, be enough? If I had the option to make them go away, would I take it? Would I leave the ones that don’t hurt and opt to cover up or hide the ones that do? What loaded questions, right? While watching the show Skin Decisions on Netflix, I asked myself these series of questions. I found myself judging and empathizing with all the recipients on the show. It was like my heart was divided because I couldn’t understand their decision to get their scars removed, however, I empathize with their pain. I blamed the doctor on the show for even agreeing to do the procedures in the first place. But then I came to the conclusion that my feelings toward the patients and even the doctors were so misplaced. It wasn’t the doctor’s fault for finding a solution, and it wasn’t the patient’s fault for seeking an answer to their “why.” For me, it was our society’s fault — the way we think about and how we perceive beauty. Somehow, we’ve allowed a narrative to be pushed that glorifies perfection and dehumanizes differences. In a way, these individuals looking to remove their scars aren’t the perpetrators, more so the might be the victims, looking for a way to navigate through the indifference of society’s expectations of beauty. Nevertheless, what I’ve learned through watching the show Skin Decisions is that even though there are options out there to remove my scars, removing my scars will never make me forget the experience. And to be honest, I don’t want to forget them; they are a part of me and have made me who I am today. My “skin decision” is to keep my scars, embrace my scars and accept the experiences behind them.

    How to Empower Students With Disabilities

    I am a special education teacher. I have also had the privilege (yes, I said privilege) of being a special education student in the 70s all the way through the 90s. I started in an infant class and was mainstreamed part-time in preschool. By kindergarten, I was fully included in a general education classroom with support from a resource teacher, adaptive PE teacher and a speech pathologist. By third grade all services were dropped — by accident or design, I will never know. It never occurred to me to ask my mom — my chief advocate — why they stopped or to ask for services again. In any case, I trampled through the rest of my education by sheer force of will because I believed I had no choice until I was offered services again in graduate school. I was able to get notetaking services and reduced-price speech therapy. I felt like I’d come full circle. Now if you noticed, I gave a rudimentary chronicle of my educational history as a student from infancy to when I got my Master’s and teaching credential in special education. If you add up all the years of education I have had and noticed where special education services began and dropped, and then picked up again, I spent very little time “labeled” a special education student. However long I spent “included” in a general education classroom — even without support — I still considered myself a special education student. I had something my classmates did not — a disability. I never felt I fully belonged in general education, no matter how much time I spent in it or how much I was able to keep up with my classmates academically. I started my education in the general education setting around the time when the 1975 law Education for All Handicapped Children (now known as IDEA) said I had to have access to classrooms. That’s how it felt to me. I was not automatically empowered by being there. I was given access to physically occupy space. Oftentimes I felt it was under protest from the teacher, though they tried to be professional about my presence. Teachers can have anyone sitting in their classroom and they still may not feel like they belong. I felt I had only two options to deal with the situation. One was to ignore my disability and pretend to be the same as everyone else, with the same experiences and expectations of myself and my classmates, which made me feel like I was denying an inextricable part of myself. This gave my teachers and classmates the right to ignore my disability as well. My other option was to acknowledge my disability and the disconnect between my world view and that of my classmates, which meant I felt out of place. Being the only person with a disability in a general education classroom did not make me feel like I belonged any more than being in “one of those classrooms” for students with disabilities made me feel I was part of the school. Nothing had really changed, just my geography. I was “high functioning” enough not to need the constant support of a special education setting. But for the most part, I did not see anyone else with a disability — mine or any other — in my general education classrooms. I can probably count on one hand the number of people with disabilities I have seen throughout my academic career, from inclusion until I started graduate school. Being in general education, my teacher and classmates did not have significant training or experience with what it meant to have a disability or interact with someone with a disability. Special education classes afforded me the opportunity to be around people who just “got it” on some level — either by education or experience. In general education, it was incumbent on me to educate my teachers and peers through self-advocacy. This helped a bit. I was accepted and understood more, but it did not make me feel any less alone. Diversity is an important component of belonging. Goldenhar syndrome is a rare condition. I realize it was wishful thinking to hope that I would find another person with my same condition sitting next to me in the classroom. However, in sixth grade I discovered the book “Karen” by Marie Killilea. The book chronicled the childhood of the author’s daughter, who was born with cerebral palsy. It wasn’t Goldenhar’s and it was set at least 50 years in the past, but many of the experiences and issues described in the book were things I could relate to. I felt less alone. This began my lifelong love of seeking out books and movies about people with disabilities. Growing up, it was my way of creating the diversity I did not have around me. Diversity, even in book form, made me feel more empowered and comfortable in my own skin and in my surroundings. Education must include diverse disability portrayals in their curriculum texts and available literature in order to empower the students they are teaching. In my field of education, inclusion is a very loud buzz word. Oftentimes, inclusion of students with disabilities in a general education classroom looks like accessibility. Students are “ allowed” in class with their general education peers for a set period of time to access the academic curriculum and then leave. They bring their own materials and follow along with the lesson tailored to the general education class. They miss the relationship-building rituals that make a group of students and a teacher a collaborative class. Authentic inclusion, on the other hand, means they will have a place in the class to call their own, they have a place in team building, they have a place in class celebrations, they have a place in class problem-solving. They have a place in class decisions. Successful inclusion has happened for my students when teachers have integrated their presence — and needs — into the daily routines of the class and lessons rather than just when they show up. All this, and yet we have not considered giving a student with a disability a sense of belonging in the general education classroom. Belonging is the accumulation of all these stages. Once a student is able to get into a classroom, belonging happens when they feel their story is represented, they are able to contribute to the class, and they are finally heard and valued for who they are. Not who they are expected to be. When students feel they belong in the classroom for who they are, as they are, empowerment happens. Empowerment is the foundation of success.

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