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Painting Life As Is: Portraits by Parental Caregivers

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Katie Hinchey

Disability, Identity, Culture


Painting Life As Is: Portraits by Parental Caregivers

            In our first day of class with Riva Lehrer she introduced us to the work of artist/parental caregivers, Tim Lowly and Vincent Desiderio. “Temma’s daughter is one of the most disabled people I have ever met. Her father Tim’s work is statement that you do not need to earn love to be adored. You do not have to produce personhood to deserve love.” Having personal caregiving experience this idea felt revolutionary and I connected deeply when I read more about Lowly and Desiderio’s life stories. These successful artists share similar stresses and feature their children in much of their art.

By featuring their disabled children in their work these artists are both directly and indirectly contribute to the advancement of disability studies and creating a better world for their children. The process also functions as a psychological coping mechanism to deal with the increased vulnerability of the caregiver population. In addition to combatting their depression, this work also fosters relationship with their children.

Lowly and Desiderio are not alone, parents of disabled children are most often primary caregivers. The difficult needs of their children affect them at every level. Studies show that in general, parental caregivers experience lower employment than other parents, greater financial stress, and experience increased emotional stress. (Cramm, J. M., and A. P. Nieboer)  Parents like Tim and Vincent must balance the medical, developmental, and day-to-day needs of their children with the demands of work and life.  This combination of stress negatively affects their psychological well being and is often expressed by anxiety and depression. Desiderio specifically addresses how this stress has effected his art and I will explore these effects and how his art can be both an expression of his experience and a coping mechanism.


“Study of a Hero’s Life” (Vincent Desiderio, 1990)

Sam Desiderio was born to parents Gale and Vincent in 1986. Sam was diagnosed with hydrocephalus and was experiencing intracranial pressure from the fluid on his brain. A shunt was placed and he began to thrive against all odds, Vincent described Sam during this time as "the wonder kid of New York Hospital" (Pall). In 1990, Desiderio’s art career hit an all time high and he signed his first major contract with an important gallery. Suddenly, tragedy struck. Sam’s shunt became blocked and his brain herniated:

“It was like someone took a cue ball and shattered our lives," said Vincent. Sam suffered several strokes. He was left paralyzed and in a coma. In the months that followed, he gradually regained consciousness, motion and speech. But his ability to breathe on his own had been compromised. His progress was slow, uncertain, studded with reversals. After what had happened, Gale and Vincent were unwilling to leave him alone for even a moment.” (Pall)


 This traumatic setback was coupled with the stress of developing a show and Desiderio split his time between the hospital and his studio. The painting “Study for A Hero’s Life was painted during these months.


            “Study for a Hero’s Life” is a soft, colorful scene of a child laying in a hospital bed. His skin is colorful and despite his circumstances his skin tone suggests warmth and peace. Sam’s body is posed nestled into the sheets of the bed and he is small in comparison to the medical equipment attached to him. The framing of the picture suggests that the viewer is seated, eye level with the child. The green hospital gown is ruffled and reminds the viewer of the lack of autonomy that Sam has while in a coma. The warm coloring and realism of the scene work to bring life into Sam’s helpless form. The scene is full of brightness and light. The powerful colors and peacefulness assert an almost angelic reading of the subject, Sam.

            I argue that this portrait aided in relieving stress and acted as a coping mechanism so Desiderio could make sense of the trauma his family was experiencing. Desiderio had entered into a period of extreme anxiety and depression resulting from work demands and the guilt he felt surrounding Sam’s deteriorating condition.


"I started -- it's sick, but I was kind of screwed up at the time." His voice dropped to a hoarse whisper. "I was doing that painting, of him in the hospital, and he kept getting sicker and sicker. I stopped work on that picture, turned it to the wall, and he started getting a little better. And I started thinking, Oh my God, there's something wrong with this picture… I guess by painting him I had this idea that I could keep him alive forever," he continued. "And this sort of crazy idea that if I painted him walking, he would walk again. You know? If I made it just right. . . . Crazy. Desperation."

-Vincent Desiderio


“Study for a Hero’s Life” is a depiction of the Sam that Desiderio wanted desperately to be able to “fix”. Realistic detailing in portions such as Sam’s hands or the folds in the sheets are reminiscent of the sharp reality of this scene. This realism helped to bring Desiderio to place of coping with the situation. His anxiety and depression had caused him to believe that painting would cure Sam. That self-described “insanity” was finally counteracted by the agony of realizing that the painting was only a painting. (Pall) In the years since “Study for a Hero’s Life” Desiderio has continued to paint Sam as a way to counteract the trauma, deal with the resulting mental health issues, and portray his identity as a caregiver.

Tim Lowly shares many identities with Vincent Desiderio. They are both modern day American painters whose work is widely praised and they are both parental caregivers. Lowly’s daughter and collaborator, Temma has severe developmental disabilities and Tim’s work with Temma is a huge part of his artistic reputation, “He is known for compassionate egg tempera pictures of children in mysterious circumstances.” (Wikipedia) Temma acquired her disability shortly after birth. Temma had a seizure in the first few days of her life resulting in severe brain damage. Temma is unable to communicate, move her body voluntarily, and is “cortically blind, which means that while her eyes function normally, her brain can't make sense of the signals... She does smile faintly on occasion, but her parents aren't sure that she knows them from anyone else.”

Tim Lowly’s art and personal beliefs have been shaped by Temma. Tim’s portraits are dark and realistic. Through this style he is making a statement about Temma’s life as it is. Temma is often a focal point of his work and his teaching as demonstrated in the piece, “Culture of Adoration” (2008).



            In this scene of an art class looking at model, Temma is the central point of focus. The coloring is dark and gritty, much like the Lowly’s day to day life. The posing of Temma’s body on the table makes us unable to see her face. However, the faces of the students are mostly shadowed or indistinguishable. The student closest to Temma’s face is lit as she shares in the light surrounding the front of Temma’s body. Temma’s body is illuminated on the bed and we can see that she is severely disabled and incredibly vulnerable. The student’s face is calm and she seems unsurprised by the model before her. The scene is depicted aerially which seems to distance the viewer from the art lesson happening. We observe the intensity and care in which the students are taking to draw their model who is,


“not your typical artist’s model. She is the antithesis of what our culture idealizes, idolizes, adores. Severely disabled, physically vulnerable, yet luminously present, she frustrates my assumptions regarding form and content, my expectations of beauty and meaning. Cipher-like, she seems invulnerable to the laws of logic or aesthetics.” - Karen Halverson-Schreck


This scene of the students looking at Temma as a model directly addresses the political and cultural agenda of Lowly’s work. Lowly’s political agenda to normalize imagery and the lives of the disabled doubles as a way to foster a relationship with his daughter. Lowly also feels guilt about Temma’s life and through collaboration he works to resolve feelings of parental helplessness. "Part of the reason I paint Temma is because it's like a daily devotional for me. All of the things our culture so highly values—beauty, power, capability—my paintings have nothing to do with any of these things. I hope it challenges our notion of what is valuable." (Camper) In Temma’s 25th year, Lowly put on a retrospective of their work together. See youtube video here.


Both Sam and Temma face the same stigmas of the larger crip community. By publically producing realistic images of their experiences, Lowly and Desiderio do more than just relieve their stress. They are able to advocate for their children and break down walls society builds around Temma and Sam through invisibility and shame. Lowly states,

"Part of my fairly political agenda is to say that disabled children are a part of life. These are not freaks. What I'm saying is that we should advocate for eyes of compassion that see human beings as human beings, rather than separating them into the beautiful, the ugly, the normal, the freak." (Camper)


The realism of both artists is also an example of Rosemarie Garland-Thompson’s concept of the different types rhetoric of disability representation. Garland-Thompson’s “realistic rhetoric” can be found in both of these pieces. The realistic representations of disability “can also urge the viewer to political or social action… The visual rhetoric of the ordinary has emerged in a climate of integration and diversity created by the disability rights movement.” " (Garland-Thompson 73) These two successful and respected artists painting their son’s in a realistic and unapologetic manner bring their experience to the eyes of people not associated with the disability movement. They are empowering their children despite communication barriers. They are advocating for their children and challenging society’s messaging that one must produce personhood to deserve love.



Works Cited

Camper, Fred. "Temma Lowly and the Meaning of Life." Chicago Reader. Chicago Reader, 21 Nov. 2002. Web. 10 Oct. 2014.

Cramm, J. M., and A. P. Nieboer. "Psychological Well-being of Caregivers of Children with Intellectual Disabilities: Using Parental Stress as a Mediating Factor." Journal of Intellectual Disabilities15.2 (2011): 101-13. Web. 10 Oct. 2014.

Desiderio, Vincent. Study For A Hero's Life. 1990. The Progress of Self Love. Vincent Desiderio. Web. 10 Oct. 2014. <>.

Ellison, Amy. "Tim Lowly Interview, September 2010 Exhibit "Without Moving (25)"" YouTube. {fill in the Blank} Gallery, 21 Sept. 2010. Web. 10 Oct. 2014. <>.

Garland-Thomson, R. (n.d.). The Politics of Staring: Visual Rhetorics of Disability in Popular Photography. In S. L. Snyder, B. J. Bruggemann, & R. Garland-Thomson, Disability Studies: Enabling the Humanities.

 Lowly, Tim. Culture of Adoration. 2007. Rise up Children Sing a Glorious Future, Private Collection. Flickr. 29 Aug. 2007. Web. <>. drawing on prepared panel, 24" x 48"

Paul, Ellen. "Painting Life Into Sammy." The New York Times. The New York Times, 28 Jan. 1995. Web. 10 Oct. 2014. <>.

"Tim Lowly." Wikipedia. Wikimedia Foundation, n.d. Web. 25 Dec. 2014.