By Natalie Homan from In The Cloud Copy
Mara Clawson is a visual artist who uses many different mediums to create art pieces that are full of color and life. She uses fabric, charcoal, pastels, and tablet technology to share the creations that she says come from her mind and heart. For Mara, art is her life. It brings her joy and gives her courage.
Life with Familial Dysautonomia
For Mara, courage is something she needs on a daily basis. Mara was born with familial dysautonomia (FD), a rare inherited genetic condition that affects nerve cells in the body. Because of a mutation in a specific gene, nerve cells don’t develop properly and as a result parts of the autonomic and sensory nervous systems don’t function as they should. The autonomic nervous system is responsible for the body’s automatically controlled functions, like digestion, breathing, and body temperature regulation. The sensory nervous system helps a person perceive the world through their senses.
It may be easy to guess, but problems in these major systems mean a person with FD will have difficulties with many of the bodily functions most people take for granted. The symptoms of FD vary from person to person, but some common examples include:
- Inability to produce tears.
- Delayed growth.
- Episodes of repeated, uncontrollable vomiting.
- Weak muscle tone.
- Scoliosis and other orthopedic problems.
- Slurred speech.
- Reduced ability to feel pressure or pain.
- Difficulty regulating internal systems like digestion, heart rate, and breathing.
There is no cure for FD since it is caused by a gene mutation. A child will usually be diagnosed with FD as a result of their symptoms and genetic screening tests. Treatment focuses on helping a person cope with their symptoms. Eye drops help keep the eyes comfortable and prevent damage to the cornea, medicine can control heart and digestive functions, and surgery can be done to correct orthopedic issues. Because of improved treatment of symptoms, FD is no longer considered a terminal childhood disease. Many people with FD live into adulthood, and like Mara, can have successful lives, pursue talents, and enjoy their hobbies despite the limitations.
Although Mara isn’t able to control her body the way others can, she says she always wanted to control her emotions so that she could be kind to her family and those around her. The most important things to her are to help others and to be herself. Mara’s parents say that they see her art as her voice. Although FD makes it difficult for Mara to feel and perceive the world the way others do, she thinks in a very visual way and expresses what she perceives through her art.
Mara as a Featured Artist
In February 2020, Mara was one of the featured visiting artists at the ReelAbilities Houston Film & Arts Festival. This festival is a free event that highlights the talents of artists of all abilities and includes mediums like visual art, music, and film. The goal of the festival is to use art to celebrate the talents of people with disabilities and erase the stigma surrounding them.
You can see Mara’s artwork on her website, maraclawson.com.
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