Finding Ways to Keep the Water Clean © 2019 Mara Clawson (above)
I’m very lucky during the virus; when I work at home I can work slowly how the colors go
I recently interviewed Mara Clawson, an Alliance for Citizen Directed Supports member, about her art and how self-directed services help her meet her support needs so she can live a life following her own passions. Her mother Michelle also joined the conversation, adding extra details to some of Mara’s answers.
Mara is an artist who runs her own business that she named “When Colors Get Along.” She works with oil pastels and on her iPad to make art because, as she describes on her website MaraClawson.com, “art makes me happy and gives me lots of courage. My body cannot make tears. So, my pictures tell how I feel.” She likes making people happy with her art by sharing “how I see the world.”
Mara Clawson with artwork (from top left): Swimming Around, Cleaning for New Day, Lost and Found Animals (w/ eggs). All © Mara Clawson
Sensing how colors mix and combine seems to be at the core of her art; and it results in faces and depictions of nature with vivid contrasts. Colors pop out at you, with bold almost fluorescent lines shaping the outline of a woman’s head, a bird’s eye, a beta fish’s fins, or leaves of plants.
Mara described how she began doing art when she was eleven, although she dabbled in it ever since she was three years old. As she stated, “art is my life.” She prefers using soft pastels and oil pastels because of how “I can mix them,” often with her fingers. Kristina, who is both Mara’s art mentor and part of her support staff, introduced Mara to doing digital art on an iPad. Using an iPad allows Mara to continue creating artworks even when she is not feeling at her best. “I lose my energy easily, so I need to drink [water] every day.”
Spring of Sunflowers © 2016 Mara Clawson
An award-winning artist as well as a speaker and educator
Mara is a recipient of the VSA/Kennedy Center Emerging Young Artists with Disabilities award. Her artwork has been shown in six museums and fifteen galleries nationwide. She is also the subject of the documentary film Living Art, which has been featured in two recent film festivals, and is part of an education campaign about disability and inclusion.
Mara is also a public speaker and teaches iPad drawing classes. She loves social gatherings where she can meet people and “brighten people’s days,” according to her mother. Before the pandemic, besides working in her home studio, Mara also went to Art Enables in Washington, DC and the Visibility ArtLab in Rockville, MD to work alongside other fellow artists.
Finding Ways to Keep the Water Clean © 2019 Mara Clawson
Both Mara and her mother Michelle described the benefits of self-directed services; yet when they first learned about this option, they feared that the time and effort could be overwhelming. Yet, they began to realize that traditional services would never provide the kind of programs and opportunities that Mara would find stimulating. The clincher was that any traditional service program of potential interest to Mara did not have staff that could meet her specific health needs.
Once that Mara aged out of the public school system, having a transition year (TY13) at the Meaningful Opportunities for Successful Transitions (MOST) Program within the Jewish Foundation for Group Homes (JFGH) was invaluable in helping her family to learn about self-direction. During that time they found Shared Support Maryland (SSMD) to guide them through the process (and paperwork!). Instead of a day program, SSMD helped Mara to create her own plan that included job training and community involvement through person-centered planning. These efforts have proven to be vital to Mara’s ability to fulfill her dreams of having her own business selling her art and art products.
Gail Godwin, an Alliance for Citizen Directed Supports founder and head of Shared Support Maryland, helped guide Mara and her family through everything involved in person-centered planning. For Mara’s staff under her self-direction budget, Mara is the employer of record and in her role oversees her service budget. This would be a daunting task if not for Gail Godwin, who is also Mara’s Support Broker, supporting Mara through all aspects of human resources, staffing, dealing with financial management services and lots of other details.
Mara’s mother told me that many of the opportunities and experiences Gail has found for Mara have been critically important for Mara as she is developing her best life. Examples of these are: Mara’s sizable grant called Reach Independence through Self-Employment (RISE) through DORS; introductions to pro bono legal services for copyright protections and Supported Decision Making; a Shared Horizons grant for bookkeeping; speaking opportunities at Jubilee, and the list goes one. Mara said she loves seeing Gail, and feels honored whenever Gail comes to art openings and film screenings.
Stray Cat Wondering in Warm Spring © 2015 Mara Clawson
Getting Her Daily Support Needs Met
Mara employs several people as her support staff, who she describes as “like a team, we are a family.” Her staff helps support her with documenting her artwork, building her business, and her day-to-day needs. Certain days focus more on personal supports, and others on job coaching. Since the COVID-19 pandemic began, all of Mara’s staff works with Mara virtually via Skype or Zoom.
Kristina, a professional artist herself, helps Mara learn to navigate the unique demands of applying to art competitions, writing Artist Statements and Bios, selecting which artworks to show to curators and jurors, and learning to figure out potential hazards to avoid that can hurt an artist’s reputation.
Rachel, who has played a key role in supporting Mara, used to come work with Mara in her studio four days a week. But since the pandemic lockdown in mid-March, Rachel and Mara can only work together via Skype. Nonetheless, they are grateful that Maryland DDA is allowing their work together to continue this virtual way. Mara says it feels more like a normal life this way. Oftentimes Mara works on her art commissions while chatting with Rachel. Rachel has helped Mara expand her inventory by printing the artwork images on products, such as archival prints, and everything from fabric bags, greeting cards, acrylic blocks, and soon some leather items. Rachel also helps Mara manage her business’ budget, sales, and inventory; prepare for art exhibitions; and, before COVID-19, to sell at art markets.
Aimee is another support staff, who is closer to Mara’s age. Mara likes to talk with Aimee about all aspects of dating and romantic relationships.
Freedom Love © 2019 Mara Clawson
Rachel, Aimee, and Kristina all help Mara achieve the life goals she sets for herself. One goal is being able to cook more types of food safely and to do her own laundry. Mara described her progress of how she’s gotten better at making spaghetti, and figuring out which clothes need to wash in which water temperatures. During COVID-19 she has had less support with cleaning her apartment, and she describes that she is happy to clean, especially when she can put music on.
Mara is proud that she is responsible for taking her own pills, “at breakfast, lunch, and dinner!” All of Mara’s support staff are trained to help with administering emergency medication, as well as CPR and First Aid.
Swimming Together as One © 2019 Mara Clawson
The Challenges of COVID-19
One of Mara’s paintings from 2016 depicts a pangolin, an animal scientists had theorized early into the current pandemic may have been the source of COVID-19. Talking about that particular artwork, Mara explained how “of course we can’t blame the pangolin, it’s humans that have caused the virus [to spread].” She says she often cannot listen to the news, as it really affects her blood pressure and health. When I shared that the news also makes me agitated, she told me, “I hear you sister!”
The pandemic has meant the cancellation of many things Mara was looking forward to, such as a public speaking appearance on Capitol Hill and the Midwest premiere of Living Art in Chicago. She misses going to movie theaters, restaurants, and shopping for manga books at bookstores. While other people are beginning to resume their social lives as COVID-19 social distancing restrictions ease, Mara does not yet see an end in sight for when she can safely leave her apartment to go see her friends in person. As her mother explained “until there is a vaccine, Mara can’t take any chances of getting exposed. When Mara had mononucleosis, she was hospitalized for eight days; and the illness was life threatening. This new virus is even more life-threatening.”
Make Way for Pangolin© 2016 Mara Clawson
Remaining Positive About the Future
Coming to terms with the upsetting aspects of COVID-19 was at first challenging and upsetting for Mara; it made Mara quite anxious. But as her mother Michelle commented during the interview, “you’ve changed your attitude. [Now you] do not think about the things you can’t have; you think about the things you can have. I had faith that you would adapt, just like you’ve done your whole life, with much grace.”
Crown Crane © 2015 Mara Clawson
With the help of her support staff and family, Mara has learned to be aware of three things: taking care of her body, taking care of her mind, and taking care of her heart. While her body misses certain foods, like sushi from her favorite Japanese restaurant, Mara now has been making rice balls “as good as the restaurant.” And she’s keeping her mind occupied learning about science and watching episodes of Bones. To take care of her heart, she has learned to appreciate the nice things about being by herself, while also making sure to stay in touch with friends online.
Self-directing her supports and having her own apartment with an art studio helps Mara remain happy even in these difficult times. As she said to me “I used to have too [many] worries, but I get the hang of it; [I] stop worrying so I can be as happy as a clam.” Instead of worrying, she is able to pursue her passion for self-expression through drawing and painting, or as she says “working until the colors get along,” and making others happy through her art.
Fireworks Reunion © 2019 Mara Clawson