October 31, 2019

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Don't dis- my ability

October 31, 2019

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Don't dis- my ability

October 31, 2019

 

I wear a thigh-high jobst stocking on my left leg. I’ve worn it every day for decades. It helps with the swelling from a condition that doctors call “lymphangiomatosis.” I don’t leave the house without a stocking on, so unless you have lived with me, you haven’t seen my naked leg. Consider this my legsposé.

 

So much of my life I’ve spent hiding this thing because I don’t want people to see it, it’s been too painful to show. The little that people do see is that I have a swollen ankle, or that I wear some sort of “brace.” I have a handicap placard because at any moment I could have some sort of “issue” with the skin where I need to elevate my leg (not walk on it) so that the skin heals (skin wounds can lead to dangerous infections), or I could be feeling pain making it difficult to walk, and yet most people just think I’m able bodied and that I’m probably just taking my placard for granted, or I’m a con artist, so on top of having to deal with the sobering reality of my handicap, I need to deal with being questioned about my morality. It’s an isolating experience for sure, made worse by feeling like I have to hide it for fear of being stared at in public or discriminated against at work, or taken advantage of because I’m physically “weak.” In the last decade, hiding has become less and less important to me, because truly, I want to be surrounded by people in as many places as I can—work, home, family, friends—who accept me and value my differences as strengths, value my experiences as opportunities for wisdom. The fear of others witnessing my leg and hearing the stories surrounding it is a matter of grand insignificance. Hiding doesn’t move me forward, it doesn’t connect me to others authentically, it doesn’t challenge our culture’s uninformed beliefs and perceptions, it doesn’t educate people, and it doesn’t aid my peace of mind.

 

In writing the show, “The Closet: Reimagined” with my collaborator and dear friend Jenee Halstead, I have been able to speak out about the experiences of encountering a world that still often views both my leg and my sexuality as weaknesses and signs of inferiority. I get to identify the stories that I adopted to keep myself from believing that I could trust my body. These culturally supported stories instilled beliefs that what was happening to me physically with my leg and my body was a threat to my life (even in the cases when it wasn’t). Intertwined with that story, I had the story that the sexual attraction I felt toward men (accompanied by all the juicy exciting emotions) was dangerous. The power dynamic within hospitals of mostly male doctors having the authority over my body made my ability to reclaim my sexuality all that more difficult. This show allows me to call the stories out, voice my distaste for them, and, in a performative way, I get to shed them and assert myself as a believer that everything about my body constitutes wholeness and limitlessness. To be clear, I do feel that these stories were not all maliciously told, and I’m willing to accept that on some level they were meant to keep me safe long enough to find my autonomy and find my voice.

 

As I have grown up into a more autonomous human, I know that I have to give thanks for people doing what they did to keep me alive, especially all the sacrifices my parents and my sisters made, and the emotional support other family members and friends gave to both myself and my family. Also, I acknowledge and give thanks to Dr. Henry Mankin for instilling hope in my parents, even though I have conflicting feelings about his effect on my developing self-concept from a young age. I also thank him for introducing me to Dr David Ebb, who is still my main doctor today since adolescence, and who has seen me through many transitions of my growth into autonomy.

I give thanks, and I also don’t forget that I was given orders to perceive myself and the world in limited ways, and those orders came in the form of these stories about myself—that I’m weak, that I’m disabled, that my sexual attraction is wrong--I was supposed to have a natural distrust of my body. These stories still hold importance for many people, because for them, my autonomy equals my mortality. The stakes are that high in their eyes. If I try to go a different route other than what my family or loved ones believe is the safest, then I’m taking chances that could lead to death. In a less fear-based way, it also means that if I don’t subscribe to having an illness or being sick, I may decide not to continue seeking certain services that Western Medicine offers. Thus, in some small way, it could appear to threaten the livelihood of certain professionals. It’s in their best financial interest that I believe I have a disease, an illness, that I’m sick. I don’t believe all doctors work from a “financial bottom line” standpoint, but I understand that they need to financially support themselves and their families, and it is also in their best interest to support the institutions that pay them to do a certain type of job. My autonomy means they see me less in their offices, as I now feel more confident choosing how many visits I feel are necessary, and what medical venues I’m willing to seek out based on how aligned they are with my values.

For me, my autonomy equals my life, equals me creating a life for myself. This new life includes breaking old beliefs that the unique physical condition of my body means I’m ill at all. Do I have some sort of imbalance? Yes. Am I working continually on finding balance so that I can live to reach my potential every day? Yes. Is my potential just as equal and vital to the world as anyone else’s potential? Yes. Is the answer to my balance somewhere in the unique knowledge that my body, particularly my leg, stores within it? Yes. Do I have faith that my body is perfectly powerful as it is? Yes.

I want to be careful about using the word “faith.” I don’t encourage other people to find faith at all, never mind to find it in specific places. I was raised Roman Catholic, going to church every weekend to witness what I never felt connected to. I never found faith at church, but I know that I’ve found it continually in the most unconventional places. Lately, I’ve been looking to my leg for it. Why would I not look to my leg for my faith? I also don’t often use the word God, it’s too confusing and far too steeped in human warfare and mass control. But there’s something about calling my leg “God” that takes the power back for me. It calls out the double standard, and allows me to finally give voice to myself as a whole person, whole body, mind, soul and spirit, with no part of me that is not meant to be, that does not have an equal place at the table of existence. Similarly, I have certain feelings about the word “disability.” My main feeling is: don’t dis my ability. Tell me who on this Earth has no weaknesses whatsoever, who needs no help to achieve a fulfilling life and reach their highest potential? Government aid aside, my feelings are that either everyone has a disability or no one does; make a choice. I love the Rumi poem “The Guest House,” for it’s equal treatment of all states of being that humans’ experience.

 

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they are a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice.

meet them at the door laughing and invite them in.

Be grateful for whatever comes.

because each has been sent

as a guide from beyond.

 

— Jellaludin Rumi,

 

I don’t often hear people say “my [insert medical condition/diagnosis here] is actually a strength, and because I have it, I’m able to reach a potential I would not reach otherwise, and because of that, I am ever more valuable to this world.” However, I have the utmost faith that I know others are out there like me. I know there are folks waiting to say “YES! I feel that way about my body!!!” That is why I chose to write this show. That is why I am choosing to write this very post, to use my artistic platform to shine light on a different way of thinking about bodies with varying functional abilities and anomalistic visual presentations. Don’t dis my ability. It is my understanding that everyone needs help to reach their potential no matter what body or mind or emotional intelligence you have. Where I excel, you may falter and vice versa. Likewise, we all need support in bringing our shadows out into the light. That is what “Welcome To The Closet” and “The Closet: Reimagined” are all about. The transformation from fear of self-acceptance to embracing oneself as whole and limitless is an extremely powerful shift, one that ripples from the pulsing chrysalis out to the blooms patiently awaiting visitation. It is a privilege I hold so dear that I get to come out through the process of performing at All Together Now as a queer ass butterfly with a God leg. 

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