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On Being Marginalized by Myotonic Dystrophy Expert Ann S Woodbury

The definition for marginalization is being treated as insignificant or peripheral. Being marginalized happens to many groups in our society. There are a lot of efforts in our society to stop marginalization. We hear campaigns against it taught in our schools and discussed on TV. We, as humans, hate that marginalization happens to other human beings. Even so, marginalizing still happens. In my experience, the Myotonic Dystrophy (DM) community experiences marginalization. We might not realize that it is happening to us. We just know that we are different and we don’t feel accepted. Others that don’t understand DM tell us to try harder. Recently I posted on Facebook about the extreme fatigue that DM individuals live with. I was sharing about the constant struggle that my children have with their sleep cycles – circadian rhythm – and their inability to be awake and functional in the daytime. On my Facebook post I had a gentleman respond to me. He said something like, “Don’t you know that it was your job as a mother to teach your children sleep hygiene. You were a failure as a mother because you didn’t do your job when your children were young.” Wow, he was sure opinionated and not very interested in the issues of living with DM. I was talking with my daughter Andrea and I shared this gentleman’s comments with her. I told her that he sure wasn’t interested in the experiences of those living with DM and how he just dismissed DM’s issues with a blanket judgement. I asked her if she ever felt like people treated her similarly. Her reaction was a stab to my heart as she shared the many instances where her experiences and issues had been minimized and/or dismissed. Andrea has people tell her “I’m more disabled than you, I just don’t have a name for it.” Such powerful shaming to infer that she really doesn’t have a disease. It infers that she is taking advantage of the system. Andrea has had to separate herself from those that judge her in order to be okay with herself. Isn’t that sad that her only choice is to withdraw in order to be okay with who she is? Society could learn from what Brene Brown says, “People are hard to hate close up – Move In.” That’s why connecting with those that accept us is so important. Those that accept us with our limitations know us “close up.” Many with DM look “normal” even though they struggle with the effects of DM. Andrea once had a police officer ask her why she was parking in a handicapped parking spot. He told her that she didn’t look disabled. I laugh at her response because it was so appropriate, she acted like the police officer was giving her a compliment. Andrea told the police officer “Thank you.” The process of marginalization is dehumanizing. Break down the word dehumanizing, meaning separation from human or not human therefore not worthy of human treatment. I have felt dehumanized as I have been when caring for my disabled family. In the Mormon community I was taught to always be generous with my time and finances. We were taught that we are here on this earth doing God’s work and we need to be champions for the cause of spreading his gospel. If not me, then who would do this work? Having a family of disabled children with no name for their condition caused me to have no words or explanation for my inability to be generous with my time. When we were required to be at an event or meeting I was always late. I straggled in with my children in tow. Of course, we were obvious as we had to climb over people to get to a seat. There was such shame in my inability to be like the “others”. Even in interviews with parochial leaders it was inferred that I wasn’t committed to God’s work if I couldn’t take on more assignments or be on time to meetings. My husband was always on time and able to give of his time, what was my problem? The fact that it wasn’t his responsibility to care for our disabled family made it so that he could look like a caring and sacrificing individual when he was out in society. What an oxymoron. I was the one that was at home doing the caring and sacrificing but he was the one that looked like the compassionate one. Extended family was also always wanting more from me. One year I reserved our local church gymnasium for the large extended family Thanksgiving dinner. As Thanksgiving approached I realized that by reserving the gym the family expected me to take on the planning of the dinner and activities. Of course, others would help but I was the one that was responsible for the planning and delegating. I was in over my head. I was drowning in a sinking ship and the only way that I could see to save myself was to jump off. I abandoned the whole event and called my mother-in-law and told her that I was cancelling the reservation. We chose to not participate that year with the family for Thanksgiving dinner. Our entire family was Mormon. In the Mormon Church we are taught “When we overcome our own selfish desires and put God first in our lives and covenant to serve Him regardless of the cost, we are then living the law of sacrifice.” The law of sacrifice is one of the most important teachings in the Mormon Church. The Mormon definition of serving HIM meant serving HIS CHURCH. For a long time I received feedback about how I had been so selfish as to drop the ball on the Thanksgiving plans. It’s interesting how no one was interested in the reason that I had been “selfish”. Because I wasn’t able to be the way that others wanted me to be I always felt like there was something wrong with me. It never crossed my mind that they weren’t generous. By treating others like they are not normal or typical we separate them from the norm which creates margins. If you feel like you are outside of the margins then you are marginalized. When you are marginalized you don’t get to be treated like everyone else because you are different. Therefore those doing the marginalizing assume that you don’t have the same needs and feelings as everyone else. The only person that accepted me unconditionally was my mother Lavon. She has such a cool name, Love – on. Thank God for her. Whenever I felt less than or unacceptable I would call her. She ALWAYS believed in me. My mother could always see my intent and the goodness in me. It was her role model that helped me believe in my children even when there was no name for their unique issues. And even when it looked like my children weren’t fitting into society I knew in my heart that they were made of “Good Stuff.” Knowing this about my children was my compass and it always guided me to figure out how to empower my children. I am very proud of who they are and the decisions that they make. (Even though they do need help making their decisions).



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