For Beauty Alone
By John Muehlhausen
Who is this boy? What will he become? Will he be the pride of his sports team? Will he excel at his studies? Will he teach others the mysteries of his profession? Will he change the world with the next technological marvel? Will he fall in love? Will he help care for a family? Will he lead the nation someday?
Will he, at least, be a productive member of society? Will he be of any USE?
This is my son. I have big dreams for him, but he is facing a mountain. He has Phelan-McDermid Syndrome. His mind doesn’t seem to hold onto things. He cannot speak, and chances are he never will. His understanding seems extremely limited and inconsistent. His development is considered “scattered” — he retains behavioral aspects of a six-month old.
He is a beautiful child though… at least, I have tried to show us his beauty in these photos taken over the past year. I do not focus on the occasional biting, or the hair-pulling and pinching, or the potty messes, or the nasty things that find their way to the mouth. I do not focus on the manic, sleepless nights, or the complaints of discomfort that he cannot explain or identify to us. I have passed over the seizures from poor body temperature regulation or from sleeplessness, which thankfully have subsided with management. I give little time to whether he will be “productive” someday. I do not focus on these things because there is a person, Jesse Roland, who is beautiful, and that is what we should see, and that is what we should believe when sight fails us. Jesse… “from the stump a shoot will spring up.”
Jesse is a very physical and tactile person. He loves to climb, feel and explore. He has very little sense of danger, and he is fast! He will be faster than me soon, and I will mourn this for reason of his safety, but even more I will rejoice with him as I see him running and smiling.
It is somewhat rare to make a solid connection, and I mean among people in general. Jesse is so real — he has no masks. He has nothing to hide, and this is beautiful. Beautiful people give their lives to work with people like him. These people are “best friends”… other children often do not have the patience for mental disability. This patience is rewarded with genuine connection: the art of loving.
We live in a culture that values utility. We cringe when we see disability and we want to distance ourselves from it, and I believe this is because we have lost our sense of beauty. Perhaps Jesse can help ease us back to our senses. I am grateful to have begun my photographic journey with him and with his siblings, they are in a sense “easy subjects.” I am painfully aware that there are many disabled people who seem less photogenic at first, but who are no less beautiful for those who have trained the eye to see. Yes, the trained eye (of the soul?) can find beauty even within human suffering. During this past year I have wrestled with myself for believing that, but what other choice do we have but to learn this wisdom? At the end of our years, we will all be disabled and dependent, and still so beautiful. What is the meaning of life? To be beautiful, to be art and lovers of art, to be valued as ends, never as means to some other end. To be useless.
Let all of our uses of things (never people) work to showcase this art!
Thanks to Steve for being willing to host this photo essay. Blessings to all. From Jesse through me, with love and for beauty.
Please consider making a generous contribution to the Phelan-McDermid Syndrome Foundation if you feel so moved. Let us help people like Jesse for their own sake! Please include a note that your contribution is “for beauty.” Thank you very much, I would be so grateful.