Rick Guidotti has a lot of energy - a lot of experience and expertise, but the first thing you notice about him is, he has a LOT of energy. I first heard him speak at Cincinnati Children's Hosptial Medical Center at pediatric grand rounds. He was in Cincinnati to promote his photography installation (“Positive Exposure”) at the Cincinnati Museum Center. He spoke about his transition from photographing high fashion models to photographing models with genetic conditions. He spoke about the need to show the inner beauty of everyone, not just the “beautiful people.” He spoke about his models with Albinisms with the same excitement (well, actually more excitement) that he had for Cindy Crawford. Now this, I thought, was a guy we needed in our corner.
Rick Guidotti, fashion photographer, and Diane McLean, MD, PhD, MPH, founded POSITIVE EXPOSURE (PE) in 1997. PE utilizes the visual arts (photography) to significantly impact the fields of genetics, mental health, and human rights. The mission of PE is to support and promote human dignity through PE’s Spirit of Difference photographic image data bank and video interviews of persons – particularly children living with genetic conditions.
One aspect of PE is the PEARLS blogging project. The PEARLS Project is a groundbreaking educational tool, which invites students to learn about their peers living with genetic, physical, and behavioral differences through an image gallery, safe online blog, and opportunity for questions and answers. This trailblazing interactive program enables student audiences to gain a deeper understanding and respect for human diversity, while empowering their peers living with differences to become self-advocates and teach the world about life from their unique perspective.
In my experience, people living with Duchenne have always been well cared for. Parents, medical providers, aids, therapists, teachers, grandparents, and counselors, are all dedicated to helping make each task a little easier, each day a little better, each life a little brighter. But what about the parents, the caregivers? The people who would do absolutely anything to help their children in any way that they could to make their lives better? The people who put their moments, days, lives on hold to care for their children? The people who often can’t remember who they are, or who they were, before parenthood, before Duchenne. Who is taking care of the caregivers?
I know the hospital scene. Parents come in with an exhausted child after an exhausting trip and several exhausting days. They see countless specialists who all grill them about what they have or have not done to care for their child. They are either praised or admonished about the job they have done since the last visit, and then are given a laundry list of daily tasks to accomplish before the next visit in six months or a year, when they will be evaluated again. Accolades about how well you have coped since the last visit would be fabulous, but actually just realization on the part of the medical providers about how tough life with this diagnosis actually is, would, I’m sure, be much appreciated.
I wanted to do a project that would accomplish two tasks: care (at least a little) for the caregivers, and enlighten medical providers about what life caring for a chronically ill child was actually like. My goal was to see if Positive Exposure and the PEARLS Project could accomplish these two tasks.
PPMD set up a pilot project using nine moms as the “bloggers” and the therapists at Cincinnati Children's Hosptial Medical Center as the “audience.” We chose two groups of moms living in locations that Rick could get to easily – New York (he lives there) and Denver (where he was speaking). Rick photographed the moms and boys, then the moms agreed to blog 2-3 times a week about their lives – their joys, their fears, their days. And blog they did! They blogged about how hard it is to not be excited about Little League when your child won’t be signing up, about how hard parent-teacher conferences are when your child is not the star pupil, about how asking your son to do something as small as “go get the paper” can turn into a heart wrenching moment. They blogged about the sassy wit of a teenager (“I thought it said Old Nanny, not Old Navy!”), how funny they must look going after a rogue hair with reading glasses and a magnifying glass, and the silliness of living with little boys. They blogged about the important lessons their sons were teaching them. They blogged about how they hated Duchenne, but loved their lives.
The pilot project was a success! I asked the moms if the blogging was therapeutic or just painful; if it was something to look forward to, or an impossible “next task” to fit in. The moms, for the most part, enjoyed the opportunity to share their lives and a chance to look at their lives through the eyes of the audience.
“I am very hard on myself. Writing my feelings down made me realize I am doing the best I can.“
“ Just getting into the blog and letting it all hang out, if you will. There is immense stress release once you start blogging and getting it off you’re your chest and out of your head where it is always cluttering you up. “
The hardest part (as with most things) was just getting started and figuring out where to fit it into the day, but as the moms got used to the practice, most looked forward to it.
“Yes, I would never have taken the time to sit down and think about the day.”
I asked the therapists if the project changed their perceptions of living with children with Duchenne, and whether or not this change in perception would change their care of these children and their families. The therapists did say that the project helped them to gain insight into the lives of families and the amount of effort and care required each day. Blogging helped to put all of their “asks” into perspective.
“I think that I now have a better understanding of how little time there is in the day for these families as they are dealing with this disease, as well as, handling their everyday activities and therefore how difficult it might be to carry out home (therapy) programs – and sometimes how low of a priority the home (therapy) programs appear to be.”
“What I have gained through this project will allow me to interact even better with the families I work with on a daily basis, and hopefully, allow them to have an even better experience in therapy."
"I have a better understanding of what their day-to-day life and struggles are. This has provided me with even more empathy and understanding.”
I am working with Rick to identify a larger and more consistent audience, and plan to expand the blogging project very soon. Most of the moms have agreed to continue and, in the future, we hope to include more moms, as well as dads and siblings. I will keep you posted as we move this project along!!
Kathi Kinnett, Director of Clinical Care
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