Artist - Skater - Dancer, not "Cream of the Cripples"

Hello, everyone!

I could go on and on about the subject of this week's blog, artist Bill Shannon, but since his personal, political, and artistic endeavors are so in-depth, varied, and yet entirely connected, I will instead keep this post short and heartily encourage you to check out his website, where you can click and choose specifics to read about.

Bill Shannon is an American 2D, 3D, dance, installation, and performance artist. He was born with a bilateral hip deformity, which caused him to wear leg braces and use crutches for most of his childhood. When he went to a mainstream school, Shannon found that art leveled the playing field with his peers. After all, he'd had to think creatively about movement his whole life, so thinking creatively in an art-based way was natural.

By the time he was 11 years old, Shannon was able to stop using the braces and crutches, and he became deeply immersed in the breakdance and skate scenes. Along with the new freedom, expression, and grace, however, came reminders that his disability would be a lifelong presence that he would have to work around. Eventually, though, the pain in his hips and legs increased to the point that he had to start using crutches again.

Shannon seems to make it clear that he does not want his disability to be his identity or, like Stella Young brought up, a source of unjust inspiration; although it informs his art in many ways, there is almost no mention of it in his biography, and in his explanation of the reworkings of his website, he notes that he cannot help that journalists tend to like to focus on him as an artist with a disability rather than just an artist:

“Its no secret that I am a poster boy for disabled people 'making lemons out of lemonade.' I also know that I am a 'cream of cripples,' a term used by some within the disabled movement (please email me if you know who invented this term) to describe people with disabilities who are more functional and charasmatic [sic] than others who are also disabled. A 'Cream of Cripples' is more palatable to media and audiences and has more common ground with the able-bodied. While I do not like being held up as an 'example to us all' or being situated as 'challenging disability' due to my situation as an artist I cannot control the journalist [sic] and writers so caught up in this particular narrative. This is why this reworking of the whatiswhat.com site is so important to me. I will use this space to share the details of my own history and perspectives on the subject of disability on an ongoing basis rather than the static nature of the previous whatiswhat site.”

Okay! I've already written more than anticipated and still feel like I've hardly gotten anywhere in adequately describing Bill Shannon or his work. I even feel like I've done him a disservice by focusing more on his disability than his art, which is apparently exactly what he does not want, which is why I hope you all check out his website and explore his work!

Ball-and-Socket Limbs: Things of the Past?

We've posted about a lot of different types of budding prosthetic technology, but most of those solutions are still far in the future, and even then, their affordability and accessibility to the widespread public are issues. It may be some time before computerized exoskeletons and mind-reading electrode prosthetics become the norm.

Right now, ball-and-socket prosthetic limbs are the standard. These prosthetics technically do their job: replace an absent limb. However, the cups that cover what is called the 'residual limb' often cause uncomfortable chafing and alter the way a person walks, which can strain other parts of the body, like the back. The limbs themselves have evolved—they are lighter and easier to control—but the way they attach to the body has hardly changed.

Researchers at University College of London have developed an alternative way to attach prosthetic limbs to the body. The ITAP (Intraosseous Transcutaneous AmputationProsthesis) circumvents the need for a cup by attaching directly to the user's bone, which allows weight loads and impacts to be felt through the skeleton instead of through soft tissue.

"[M]y ability to know where [my foot] is improved dramatically because you can feel it through the bone,” trial participant Mike O’Leary told the Guardian. “A textured road crossing, I can feel that. You essentially had no sensation with a socket, and with ITAP you can feel everything."

What is neat is that, although there is direct attachment to the bone, prosthetics can still be easily and quickly removed with a safety device at the top of the prosthetic limb. It works similarly to a ski binding, so in the event of high stress on the prosthetic, like during a fall, the ITAP's safety device releases, preventing damage to the bone or implant.

But how do metal and flesh fuse together without infection? For their inspiration, the researchers turned to deer. Deer antlers are weight-bearing bones that extrude from the skin, which is just the sort of thing needed for a new prosthetic design. Research on the antlers showed that deer antler bone is actually porous under the skin, which allows soft tissues to grow into the pores and create more stable tissues around the antler. Outside the skin, the antlers are less porous in order to prevent buildup of bacteria, which means less chance for infection. The ITAP is designed in a similar way, using a porous surface beneath the skin so that soft tissues can infiltrate the metal.

As of now, the ITAP is only available for clinical investigation for those with above-the-knee amputations, but if data from the trials looks good, the ITAP limb could be seen soon in specialist clinics across the UK. The United States FDA is hesitant to jump on board with the prosthetic design as it does not allow direct skeletal attachment (DSA) procedures. However, if researchers can prove that their prosthetic attaches to the bone safely and does not cause infection, the FDA may approve the ITAP for commercial availability in the US.

Growing Community: Therapeutic Gardens for Adults with Autism Go Nationwide

A Chicago-based therapeutic gardening program designed to aid young adults with autism has caught the attention of the National Garden Bureau and may soon expand nationwide.

Students of Growing Solutions Farm get to learn all aspects of farming, like planting and harvesting vegetables, maintaining the farm, and cooking the foods they grow. However, like many therapeutic programs, the young farmers—aged 18 to 26 years—glean much more than agricultural know-how from their experience.

Says operations manager Gwenne Godwin, “This is a vocational farm, so we're teaching job skills. How to work with others, being on time, how to dress, how to do a resume. Those skills translate to any job. We're using the medium of agriculture to teach here.”

The 2.1 acre farm is part of the Julie+ Michael Tracy Family Foundation's Urban Autism Solutions program. Julie Tracy, who has a son with autism, knows firsthand that there are not enough programs that serve young adults on the spectrum.

“Most of them are floundering during these years, and one of our goals is to eliminating the floundering period and provide a more secure passage into adulthood,” Tracy says. “We feel if we can manage these years, we will have much better outcomes. We've already seen this to be true.”

Young farmer Daniel Raviv can attest to this. Raviv hopes to one day become an animator, and he believes that the skills he is learning at Growing Solutions will help him get there. He has been part of Growing Solutions since May, traveling by himself via train and bus to get there. The solo commute and his garden work, he says, help him practice for getting a job and improve his work skills and methods.

In the future, if funding goals are met, the National Garden Bureau hopes to set up more therapeutic gardens like Growing Solutions across the country. These future gardens, however, will not only be for those with autism, but would open themselves to others in need, like veterans' groups.

It would be great to see more programs like this in Oregon! We are fortunate to have fun and pragmatic opportunities for adults with disabilities—PHAME, Happy Cup, On-the-Move, and (of course!) Mt. Hood Kiwanis Camp—but something agriculture-specific would thrive here, I think. How about you? What are your thoughts?

Printing Prosthetics: Students Print New Arm for Little Boy

When his parents' insurance company refused to help cover a prosthetic arm, six year-old Alex Pring got a little help from a 3-D printer and some engineering students at the University of Central Florida.

Alex was born without a full right arm, but his parents, Alyson and Steven Pring, note that he has been able to cope extremely well and they are often amazed by all the things he can do. With a prosthetic arm and hand, they knew he could do much more. Alex had his own reasons for wanting the prosthetic.

“I wanted an arm so people would stop calling my arm names,” he said. “It hurts all my feelings. Everyone is born different. Everyone is special for what they do.”

Unfortunately, the high cost of prosthetics—around $40,000—seemed to put a new arm out of the picture.

Still, they persisted, wanting to do all they could for their son. The Prings tried to build Alex an arm with a kit they bought online, but they were frustrated by ineffectiveness of the toylike device. Alyson decided to reach out to other sources and was connected with Albert Manero of the University of Central Florida through an online volunteer organization called e-NABLE.

Manero headed the team of engineering students who created a cost-effective, functional prosthetic arm for Alex. Alex's arm took eight weeks to create and cost under $350 in materials. The arm's design was created by 21 year-old Mateo Alvarez, who explains that Alex is able to grasp objects by flexing his arm muscle. What struck Alyson Pring even more, however, was the feeling of receiving a two-armed hug from her son for the first time.

The benefits of the 3-D printed arm don't stop there. Part of the reason insurance companies are reticent to pay for prosthetics for kids is that they grow out of them quickly and therefore have to get new ones often. But as Alex grows, the cost of materials for an updated version of his arm will be around $20. And! The University of Central Florida team put the blueprints for the prosthetic online so others can access it and make their own.

(Check out NBC's "Making a Difference segment on this story!)