Chalk Art, McKinley Hill, & a Little Known Genetic Disorder
Head over to Top of Tacoma and just outside you’ll find a message of love.
We recently passed by on a drizzly day to find a vibrant work-in-progress being chalked on the sidewalk. No artist was to be found.
An hour and a few beers later we returned to find Henry Barbosa knelt over his creation. With chalk on his hands, and a smear of yellow streaked down his nose, he paused to tell us about his good friend Reggie Bibbs who has neurofibromatosis. You may know it as the condition made famous by the 1982 film The Elephant Man.*
After 40 years of living in hiding, for fear his appearance might upset others, Reggie has become a celebrity in his own right with the Just Ask! Foundation.
Not only does the name tell others it’s alright to strike up a conversation, it encourages those needing a bit of help to reach out. As Henry explained to us, “Reggie’s on disability and there’s a lot it doesn’t cover. The special shoes he needs can be thousands of dollars.”
One of the ways Henry helps raise awareness about NF is by drawing celebrities as they might look if they had the condition. He recently created a baby Chewbacca with NF specifically for children suffering from it to relate to, and drew Kurt Cobain.
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If you walk in a person's shoes you'll know their life, however if you had to wear their face you'll see how the world views you. Kurt Cobain had dealt with depression. I wonder if he had Neurofibromatosis would he have still been loved and adored? #neurofibromatosisawareness #Neurofibromatosis
The cause is close to Henry’s heart because he, too, has dealt with NF and undergone dozens of surgeries.
You may soon see Henry creating art in your neighborhood, as he plans to spread his messages all around Tacoma. If you catch him, look for the smiley-face can accepting donations to help end NF. You can also help those with NF through Just Ask!.
Images by Sierra Hartman
*Though popularized by the film, according to justaskfoundation.org, “NF is not the ‘Elephant’s Man Disease’, although it was at one time believed to be. Scientists now believe that John Merrick, the so-called ‘Elephant Man’, had Proteus Syndrome, an entirely different disorder.”