Deaf-Blind Photography? Tactile Photos!

I am very sorry for the severe delay in updating the blog. (Ah, the holidays! Family, travel, cancelled flights…) This is a short little video that I think is super cool and easily digestible. I wouldn't want to shock anyone out of their seasonal lethargy with a huge block of text! (Was that excuse too transparent…?)

Anyway, here is what the filmmakers have to say about Brenden Borrellini, the man featured in the video below:

"Brenden Borrellini was born completely deaf and with limited sight that developed into complete blindness. His disability presented many obstacles for him growing up but with a lot of hard work and help from the Special Education Unit at the Cavendish Road State School in Brisbane, he became the first deaf and blind student to finish his high school education and to attend University. 

In 1989 he was nationally recognised and won the young Australian of the Year award for his academic achievements. But Brenden didn't stop there.

It was after moving from Brisbane to Mackay that Brenden met Steve Mayer-Miller, Artistic Director for Crossroad Arts, a local organisation that develops opportunities for people with a disability to access and participate in the arts. 

Steve says that the whole idea of photography for somebody who is deaf and blind was completely new to him. He had worked with deaf people before and blind people before but the combination of the disabilities was uncharted territory. 

After showing Brenden the buttons on the camera he very quickly took the initiative and started taking pictures. 

Using a device that converts text to braille, the people working with Brenden are able to give him their objective view by explaining the photograph in detail. Brenden then receives the technical feedback using photography language like composition, light, shutter effect and depth. 

Then the subjective interpretations of the photograph the emotions that each person felt so Brendan would get three different points of view. 

The aesthetic of photography was never really the goal. It’s more about the experience of taking a photo rather than the resultant photo itself.

The process is helping break Brenden’s feelings of isolation caused by his disability and connecting him with his community.

A blind photographer... How does that work?

Steve wanted to start giving Brenden feedback on the photos he was taking so he worked on a structure where Brenden would receive objective, technical and subjective feedback about the photographs he was taking.

What is Brendan seeing?

This question led the group to research devices that would enable a two dimensional photograph to become a three dimensional photograph so that Brendan could also be able to interpret the textures in the photograph."

The blind photographer from ABC Open Tropical North on Vimeo.

Getting a Grip on Autism

“We're sinking millions into the search for a 'cure,' even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts. Most of us live with a mix of exceptionality and disability.”

-J.E. Robison

Alrighty, folks! This week we are doing things a little differently on the MHKC capstone blog, and I hope you'll bear with me through this one, because it's kind of awkward and cumbersome. But! I think it's with good reason.

I've come across an article from the MIT Technology Review, and I believe that paraphrasing would not do it justice. It's a great article about how and why autism research as it currently exists is ineffective. Because of copyright laws, I cannot reprint the article here, but I can give some background information on the article's author, John Elder Robison, and strongly encourage you to click the multiple hyperlinks that will take you to the MIT Technology Review.

Maybe you've heard of John E. Robison. His memoir, Look Me in the Eye, was a bestseller shortly after its release in 2007. Or maybe you've heard his name if you've ever needed some high-quality car repair on the east coast. Or, I don't know. Maybe you're a KISS superfan and know an alarming amount about their special effects guitars, and that's how you know of John Robison. If you haven't heard of him, perhaps you've heard of his brother, Augusten Burroughs, author of Running With Scissors, which discusses their family's “misadventures in therapy.” Maybe you know John Robison as a professor or as an autism activist.

It's very possible that you've not heard of him at all, but John Robison is all of these things: bestselling author, skilled auto mechanic and owner of one of the most successful independent car repair businesses in New England, guitar designer for KISS, professor at William and Mary College, and autism advocate.

When he was young, John found that he had a rare insight into electronics, which would lead him to financial success as he got older. But this success didn't make him happy, because no matter what, John never felt that he fit in. He knew he was different somehow. It wasn't until he decided to work for himself as a mechanic that one of his customer-turned-friends told him about Asperger's Syndrome, which had not been “discovered” as a diagnosis when John was a child struggling in social situations. According to John, knowing why and how he is different has transformed his life.

For more about John Robison and information about his books, workshops, and public speaking, check out his website.

Now! If you haven't clicked any of the hyperlinks yet, here's one more opportunity! “Fixing Autism Research” by John Elder Robison. 

Dogs Don't Judge: Therapy Dog Improves Reading Skills

I had to share this story. The woman and dog featured in it, Nanette and Cooter Brown, are close family friends of mine from back home! Plus, they're doing some awesome stuff that I think is worth telling you about.

Cooter Brown, a three year-old silver lab, and his owner, Nanette Roenigk, volunteer at Monarch Academy in Texas, which is a school for kids with disabilities. Monarch Academy is part of Morgan's Wonderland, “the world's first ultra-accessible theme park,” and is committed to creating an educational environment that allows its students to reach their full potential and develop skills for life-long employment and active societal participation. They don't believe that expectations should be lowered for their students, but that unseen possibilities should be brought to light.

Cooter Brown and Nanette are helping make some of these possibilities happen by providing a gentle, nonjudgemental listener with whom students can practice their reading and speaking skills.

Cooter Brown is a therapy dog, and every Wednesday he goes to Monarch Academy to listen to students read, one at a time. The kids get to spend about ten minutes with Cooter Brown. During this time, they can relax and feel comfortable that Cooter Brown wants to listen to them and is not being critical.

Laura, a student at Monarch Academy, seems to value Cooter's gentle, nonthreatening nature. “Dogs don't judge me for how I look or anything,” she says. She also knows just the kinds of books to read to Cooter. “He seems to enjoy books about dogs.”

It's not only Cooter Brown's calmness that makes him a comforting reading buddy; he, too, has a disability. Cooter Brown is missing his left eye because of glaucoma, which makes him more approachable to students.

“He is different as well,” says Nanette, “and that's okay, so the kids can see that.”

And students' reading skills are improving. Head of Monarch Academy, Anne Bristol, says that she notices that students are eager to come be with Cooter, and therefore an eagerness to read.

Pretty neat, right?

Helping the disability community has been an important part of Nanette's life since 1990, when she gave birth to her daughter, Taelor, who had Prader-Willi Syndrome. Taelor passed away in 2008, and Taelor's House, a foundation that gives back to many of Taelor's favorite charities and community activities, was created. Click here to read more about Taelor, the foundation, and to see some interesting articles about disability and members of the disabled community.

"Girl Meets World" by Linnea Goranson, Former Camper

This week, we have a very special "guest post" to share with you!

Linnea Goranson works at Portland State's Graduate School of Education (where the PSU side of the
MHKC capstone is headquartered) and used to be a Kiwanis camper herself. She generously shared some of her essays on her life with Down Syndrome with us at MHKC@PSU, and we are going to share them with you! The following story, told in the third person, is called "Girl Meets World." Enjoy!

Girl Meets World

On October 22, 1980 a baby was entered into the real world by two parents who were a homemaker, forensic psychiatrist including two brothers, Anders and Eric A. Goranson. This ordinary baby wasn’t just like any other baby; this baby was very special because it was a baby girl who happens to be born with a genetic condition called “Downs Syndrome.” This means she was born with an extra chromosome. She got started in an early intervention program that helps with other babies just like her by learning sign language and singing songs to help her speak for the first time in her early life as an infant. When she was an infant, she never knew anything about the world that is surrounding her, as an infant, she was very curious and also didn’t know what the world might look like to her. As she develops of being a toddler, she had a lot of activities like speech therapy, occupational therapy, physical therapy to develop her gross motor skills and her brothers helped by wrestling with her to get her stronger and ready to start sports. She started doing sports at 7 years old like swimming, gymnastics, volleyball, softball, soccer and basketball.    

When she turned 7, she noticed that her world was different from other people and she did not know why! She went on through when she was a pre-teen not knowing what is different about her when she started middle school. When she was a pre-teen she started elementary school, she was in regular classrooms with other students who were different from her. The students felt like she was just like them but noticed some little differences but mostly they accepted her just the way she was not because she had Downs Syndrome. The teachers treated her as a regular student but did not understand what they were in for, but they grew to realize that she wanted to be challenged just like the other students in the classroom. 

After she finished elementary school, she started middle school and then she noticed a lot of changes especially grades, in elementary school they did not give out grades they gave out Pass, No Pass, Satisfactory and Unsatisfactory. In middle school, she felt challenged because they gave out A-F for grades and it was extremely hard for her but she got through by getting B’s, C’s and one D. Then, she got better with grades like some A’s, B’s and less C’s when she moved up 7^th grade to 8^th grade. Her experience in her academic world was to be a success but it was challenging enough for her to push herself to learn and make her realize that she was different, that was when she recognized that she was born with Downs Syndrome. She felt like she was lost all the time and tries to understand why she was born differently from other people, then she felt depression and a feeling of suicide but she made a miraculous turn around and realizing that she has a family who accepts her the way she is and makes her feel like there is nothing that she can’t do in the world!

She also thought maybe this world of hers would make sense to her but she still did not understand the world when she was in middle school. When she turned into a teenager she realized that her world was starting to make sense to her by noticing that some people do recognize her as a person, not because she had Downs Syndrome, but other people just notice that she had Downs Syndrome and completely ignore her even though she looked different from other people. No wonder her world is so confusing and hard to understand! Being a teenager in her world was even harder to understand but she had a family to help her explain things to her so she can understand why she is different.

When she was a teenager, she started high school and she felt like she understood her world even better but still has her academic world to think about also. The students in high school treated her just like any other student in the classroom and accepted her not because she had Downs Syndrome but being a student who looks different. The teachers knew her because of her brothers that went thru the same high school but some of them did not know her brothers and assumed again that she was like her brothers but they realized that she wasn’t like them at all! What she means about this was some teachers question her capabilities before she came into their classrooms! This made her upset and hard for her to understand why they question her capabilities, she decided to prove them wrong by going into their classrooms and learning and make them understand and educate them about someone who has Downs Syndrome that can motivate herself to be a success in the classroom. That gave her a feeling that being in general education in high school was an incentive to graduate with a standard diploma! No one thought she can get a standard diploma because of being in special education but she proved everyone wrong! 

In Opposition to Normalcy

I'm having some issues with my computer today, so I'm afraid I don't have much in the way of writing for all of you. However, I do have this charming video (yes, it does have captioning options) given by Rosie King about the liberating nature of her autism.

Rosie was self-diagnosed as having Asperger's Syndrome, and when she was nine years old, doctors confirmed her diagnosis. She has two younger siblings, a brother and a sister, who are heavily affected by autism, so Rosie has been working to increase autism tolerance through her natural, unabashed storytelling. 

Rosie King and her family.

Rosie got her start telling stories and raising awareness when she and her mother were asked to do a local news segment about Rosie's mother's children's books, which were illustrated by Rosie. She was then asked to host "Autism and Me," a BBC Newsround special program, which landed her an Emmy Kid's Award. Perhaps it is no surprise that Rosie hopes to become a professional actress and storyteller.

In her TED talk, Rosie questions the validity of mainstream notions about normalcy. Her sentiment is evidently shared by her family. From their family blog:

"Sometimes I consider what life would have been like if I'd had the typical family, but in my heart I know that there is no such thing as the typical family, just as there is no such thing as a 'normal' human being."

Accessibility Worth Sharing (Part 2!)

Hey everyone! Did you check out last week's post? If not, you should give it a look after you've finished up here.

I left you all with what is undoubtedly the mots suspenseful cliff hanger ending known to mankind (or at the very least, to the MHKC blog). Haben Girma's TEDx talk was everything you might expect from a TEDx talk given by a disability rights attorney who is a member of the disabled community herself: thought provoking, insightful, inspiring, and as promised by TED, worth sharing.

But the problem with this talk was that, worth sharing though it may be, the very people whose rights are discussed were unable to access the video. In an interview with Nina Strochlic of The Daily Beast, Girma says that she feels that, thanks to exponential advances in communication technology, there is little she cannot do as a Deaf-Blind person. However, many have not adapted to these changes, especially when it comes to making the internet an accessible place.

“A lot of services and businesses are moving online,” says Girma, “and if they don't provide access to people with disabilities, it destroys many opportunities. It harms our right to live in this world as equals.”

Girma has been fighting to change that. Her current push to get TEDx to caption their videos was prompted by her own experience giving a TEDx talk in January this year. Prior to giving her speech, Girma was told by the organization to watch a video by TED's founder called “What Makes a Great Talk, Great.” However, there were no captions, which meant her translation software could not translate the talk into braille.

So she looked at other TEDx talks. While official TED talks are all captioned, hardly any—six percent—of the TEDx talks were. Since her talk was about disability rights and equality advocacy, she requested that it be captioned. It wasn't until April, after a lot of coercion, that captions were added.

“It's a talk by a deaf person about access for people with disabilities. Deaf and hard of hearing who wanted to view it could not get access to the talk. It was ridiculous.”

Girma has since requested that TEDx caption their videos and got a lackluster response. A TED spokesperson said that the official TED talks are captioned, but to do so for the TEDx talks would be impossible.

“These events have generated more than 50,000 talks in 40-plus languages. It would not be feasible for TED, as a small non-profit organization, to provide transcription—and English-language translation—for each of those videos.”

But Girma says it's not just about being able to watch TED videos; it's about following the law.

“To the extent they can afford and have ability to provide captions, they need to. They're legally required to,” she says. “We're interested in reasonable accommodations and whatever's commercially reasonable. We're not trying to make them go bankrupt.”

She knows that legal action may be required, but she is also working on a preventative front by teaching programmers how to provide access for the disabled community on their websites.

Now, if you haven't watched Haben Girma's talk that started it all, go take a look! What do you think?

Accessibility Worth Sharing (Part 1!)

November (and the cold weather that comes with it) swooped in fast, didn't it? It's hard to believe this month is halfway over!

This week's post is somewhat of a prelude to next week's. In an attempt to hold your attention and not beg for too much of your time, I've decided to split up the story of Haben Girma's ironical fight to gain accessibility in TEDx talks (and in other technologies, too) from the TEDx talk on disabilities rights that started the whole thing.

Haben Girma is the first Deaf-Blind graduate from Harvard Law School. But before she went to Harvard, she was an undergraduate student at Portland's own Lewis and Clark College. Girma says that Lewis and Clark was great about providing textbooks and course materials for her in Braille, which is her preferred mode of communication, but when it came to the lunch menus, things were harder:

"There were some unhappy surprises."

The video in and of itself is worth watching, but the real kick is what happened before and after Girma gave her speech at TEDx. She concludes her talk with a plea to people in various fields to familiarize themselves with the Americans with Disabilities Act so that through their own jobs, they can make the world more accessible. If only the people who run TEDx, the independent, community-based faction of TED, had listened to that request...

More on that next week!

Lives Converge and Change Forever

The best friendships, it seems, never are exactly expected.

Randy Patten pats Matt Thompson's hand. “I knew the first time we met, that he'd be someone special in my life. I had no idea how special. No idea.”

Neither are the terminuses of such friendships.

“I knew Matt's health was declining. But I never expected it would be this fast.”

Randy and Matt have been friends for 34 years. Randy recently quit his job so he could be with Matt for his final months of life. Matt is not afraid of dying. He's a smart man, even though he is often discredited as such because of his disabilities.

Randy Patten (left) with longtime friend, Matt Thompson (right).

Matt was born with cerebral palsy, partial hearing loss, declining vision, and intellectual disability. His family knew what he was capable of, though, and they worked on his independence and education. He attended special education classes and was eager to have a job.

“He loved to work,” says brother, Geoff Thompson. “He was a janitor at a nursing home in Southeast Portland and loved it.”

Still, Matt's eyesight was worsening, and he eventually had to leave his janitorial position. Luckily, a program helped Matt find new work at a uniform company where he separated hangers.

Randy was born in Klamath Falls. He was an athlete, a member of his high school's track, baseball, and basketball teams. He graduated from Oregon State University with a business degree, moved to Portland at age 21, and could not find a job.

“I went almost thirty years ago into The Arc offices downtown actually looking for a job at the time. Just to pick up an application,” he says.

They weren't hiring. However, there was a rack of brochures, and Randy picked up one about an advocacy program that matched volunteers with clients with disabilities who needed assistance. Randy volunteered and was paired with Matt.

Matt at an air show.

“The rest is history.”

Matt was thrilled to have gained Randy as a friend. He called Randy daily—not just once, but 15 times a day. Eventually, Randy and Matt worked it down to six or seven.

The volunteer program ended, but the friendship did not. The pair took small trips around Oregon, had dinner, went to parades and museums, especially air museums. Randy got married; Matt wanted a girlfriend. Randy had a daughter; Matt light up when he held her. Daily phone calls continued through the years.

“When he goes, I will have a hole in my life.”

Matt has congestive heart failure. He was diagnosed a few months ago and likely would not make it to Thanksgiving. Matt knows he is dying.

“He encouraged me with his simplicity,” says Randy. “He saw the best in people, loved talking with anyone—a clerk in a store, a parking attendant, the guy at the gas station. I'm not a religious guy, but there's a spiritual purity to Matt's life. There's a lesson for all of us in the way he lived.”

I highly encourage you to read the original article, beautifully written by The Orgonian's Tom Hallman Jr.  

                      

Happy Halloween, Everyone!

HALLOWEEN COMICS! HOORAY!

Camper Story: "Two Strike Corey"

It has been far too long since we have featured a camper story on this blog! Former MHKC counselor, Joshua Cady, captured a rich and lovely image of his camper, Corey Bigboy, and we would like to share that profile here. Enjoy!

But first, this seems like a good opportunity to remind everyone that counselor applications for summer 2015 are being accepted now and are available here. And now, Corey and Joshua:

Two Strike Corey

When asked about his past history with Mt. Hood Kiwanis Camp, Corey Bigboy replies, “I was a spy.” A large, playful smile spreads across his face. “Yeah, I worked for the United States government and I said, ‘we need to make this place awesome.'” He laughs and adds, “I built that place from the ground up. I said that we needed a place to chill out and practice moving good. We have to help these kids with kids with disabilities.” He leans back in his wheelchair and lets out another full body chuckle.

Without question, this 18-year-old young man is full of humor, but what is spectacular about his humor is that it also rings with truth. It might be obvious that he wasn’t a spy who was responsible for the camp’s existence, but his love for the camp and his feeling about his importance there are completely real. “What I like about Mt. Hood Kiwanis Camp is that they treat you like an adult there,” Corey explains. “I do feel like an adult at home, but I don’t always feel that way other places.”

Corey currently lives in Southeast Portland, Oregon with his twin brother Gary and his foster mother, Lori. In the spring of 2013, Corey graduated from David Douglas High School. He is currently attending a postsecondary educational transition program with his brother where he is taught skills such as writing job applications and self-advocacy skills.

Corey Bigboy was born May 2nd, 1995 in Sioux Falls, South Dakota. He and his brother were both born with the condition Cerebral Palsy, which severely restricts the use of the legs and also significantly limits the use of their arms and hands. Sharing the condition with his twin brother Gary, being pretty much identical, and having the same sense of humor, are all reasons why the bond between the two young men is that much stronger. Corey insists, however, that Gary is the more serious one. Though the two may be similar, Corey is completely a one-of-a-kind individual.

Corey’s mother and father both belong to the Sioux tribe, which makes Corey a member of the tribe as well. Corey’s mother had developmental delays and was residing in an assisted living home when Corey and his brother were born, and was unable to raise the boys. Corey and his brother then moved to live with their grandparents in Portland, Oregon until the age of nine. Due to an unstable living environment, Corey and his brother were removed from his grandparents' care and placed in the custody of their current foster mother, Lori. Lori, a medical foster parent, took on the responsibility that few would have—raising two boys with Cerebral Palsy—and has continued to give the two her fullest love and care.

When asked about growing up with Cerebral Palsy, Corey says that “it was easy.” Perhaps this is because he has always lived with the disability, but Corey also says that having his self-operated power wheelchair provides a lot of freedom to him. Also, having a brother with the same disability gives him someone else he can relate to. He gets along with his brother, Gary, and says they rarely fight.

In his senior year of high school, Corey and his brother took part in a charitable project that involved helping the Sparrow Club, a youth-based charity that provides financial and emotional support for critically ill children and their families. The Sparrow Club also empowers young people like Corey to help kids through charitable service within their communities. Corey and his brother assisted in the Sparrow Club’s efforts to raise money for an 11-year-boy that needed brain surgery. Corey and Gary helped by selling raffle tickets and donating the tips they earned from their daily coffee rounds at David Douglas High School. Being involved in this type of effort helped Corey to realize the potential he had to directly impact other people's lives in positive ways.

The main piece of Corey's identity that he is most proud of is his Sioux heritage. The Sioux have a rich cultural history that revolves around the principle of living in harmony with nature and the environment. The Sioux are known for having a rich oral tradition where they pass on their values, beliefs and spirituality. What Corey draws strength from most from his Sioux heritage is that, “they didn’t give up and die,” as he puts it. This passion and commitment has been a motivating force for him in his life. He says that he “likes the old ways” and their understanding of the earth where “Mother Earth is the Spirit Guide of all things.” Corey feels extremely connected to this background and celebrates his traditions by attending pow-wows, mostly in Portland, and even visiting the reservation in South Dakota on occasion. At the pow-wows, Corey often dresses in a red shirt and a red bandana. He jokes that he resembles a “red tomato.” Corey enjoys meeting other Native Americans at the pow-wows, which are open to people of all tribes and those interested in learning about the culture in a respectful manner. Corey wants others to learn about his culture, but it is tremendously important to him that they are respectful of the values and beliefs of the Native Americans.

In his spare time, Corey enjoys listening to music from pow-wow, particularly that of the Black Lodge Singers, a Native American northern drum group. The Black Lodge Singers are a 12-member group that creates traditional Native American Northern Plains’ music. They sing in their native Blackfoot language, while each member pounds steady, rhythmic beats on a large, sacred buffalo drum. Corey says he loves the heavy beats and the power that is in the music.

Corey would like to one day take his passion for his heritage one step further. Corey has expressed an interest in someday opening a camp that would expressly serve the needs of Native American youth. Corey has felt the impact that camp has had on his life by attending Mt. Hood Kiwanis Camp, and it was there that he got this idea. He has said that when he is at camp he feels as if her is among family and feels safe to freely express himself. Corey would like to someday extend these same benefits to other Native American youth who otherwise would not have had this sort of camp experience and provide a space for them to freely “explore themselves.” Corey would like to call this camp Two Strike Camp, a name that refers to a Brulé Lakota chief who fought in various battles against the US Army during the time of Bozeman Trail war.

For Corey, the name refers to power—the power he wishes to instill in the Native American youth who come to his camp. Corey says that it is “sad, the violence that is around kids today and the bad influences of so many adults.” He wants to create a place where these young adults have positive role models, can draw strength from one another, and learn more about their own heritage. Corey has struggles with behavior himself in the past, and this understanding, along with his passion, could serve him well someday in taking on this type of charitable and heritage enriching endeavor.

Even though Corey has great ambitions for his adult life, he is still currently taking in all the enjoyment that comes from being a young 18 year-old. For recreation, Corey enjoys music, movies, television, and watching sports. Corey has a great interest in what he refers to as “old school” hip hop. The hip hop he is referring to is that of the 1990s. He really enjoys artists such as Tupac Shakur, the Notorious B.I.G., Dr. Dre, and his personal favorite, Snoop Dog. Corey enjoys the beats and says that the style of that time is much smoother that it currently is and finds connection with many of the lyrics.

Corey also loves movies, his favorite being any and all action movies. His most favorite action movie is Blade, which he says Wesley Snipes is “absolutely awesome” in. His favorite TV shows consist of humorous shows such as Ridiculousness, Family Guy, The Cleveland Show, and The Simpsons, which he says is “classic” and will “stay cool forever.” For sports, Corey enjoys watching basketball and football. He always cheers for the Ducks and wears his Ducks jacket with pride.

Another attribute of Corey, that is somewhat typical of an 18 year-old male, is his love for young females close to his age. Corey is not at all shy and enjoys flirting with girls. At Mt. Hood Kiwanis Camp, he is notorious for flirting with the female staff members, but was particularly fond of one of the counselor staff this past summer. While on a hike that involves searching for gold, this particular female staff member asked Corey if he had seen any gold, to which Corey responded, “You're the only gold I see.” It is this sort of playful charm that makes Corey so fun and endearing to be around.

When Corey is at camp, he brings a sense of joy and excitement with him everywhere he goes. As Corey rolls his way along the pathways, he wears a large smile on his face as he gives cheerful greetings to all the counselors and staff. He has what he refers to as a “Legacy” at Mt. Hood Kiwanis Camp, and it is clear from the excitement and joy that others get when they see him at camp that he is truly legendary there. He is committed to trying challenging activities there, such as the rock wall and the flying squirrel which he, with the help of the amazing staff members at Mt. Hood, has been able to achieve.

Though Corey has had to deal with various struggles in his life, such as limited bodily mobility due to Cerebral Palsy, and also having to live in various places, he carries on with a lust for life that is absolutely remarkable. He has said that he feels life is so much better if you are able to “have a good sense of humor and laugh about the stuff that doesn't matter.” He enjoys sharing a laugh with friends and doing what he does best, which he says is “being and Indian.” Corey looks to the future with optimism and hope, and with his joyful confidence he intends to do great things in this world.

(Written by Joshua Cady and originally published on the MHKC capstone page)

Girl Moonwalks on Largest Stage for Autism Awareness

If you had seen Falynne Lewing, a 13 year-old girl from Reno, Nevada, when she was a child, you probably would not have thought that years later you would be likening her to the Prince of Pop. Falynne (pronounced 'Fallon') has Asperger Syndrome, and in her early years, she had trouble with her speech and her walking. Now, however, she can impersonate Michael Jackson's moves to the T and is getting a lot of attention for it.

Falynne was five years old when her Michael Jackson infatuation began. That was when she saw his "Thriller" video for the first time. It wasn't long before, apparently out of the blue, Falynne showed her parents that she, too, could pop-and-lock, glide, and spin around the floor. 

"Our jaws dropped," says Falynne's mother, Michelle. "We couldn't believe that she could do something like that on her own. Falynne says the dancing was spontaneous; she just decided to try it out. 

Her parents weren't the only ones who were impressed by Falynne's moves. She and her mother recently went to both VidCon and Michael Jackson's final resting place, and when Falynne started dancing, people circled around her. Pretty amazing for someone with no formal dance training.

"They wanted to meet her, they wanted to hug her, they wanted to see her dance," says Michelle. 

So it may be no surprise that on October 23rd, Falynne will be performing on the world's largest indoor stage--the Grand Theatre at the Grand Sierra Resort in Reno--to not only show off her moves, but raise autism awareness. The proceeds from the show will go to the Autism Coalition of Nevada and the Nevada Humane Society.

Check out Falynne's Facebook page to see more dancing, MJ-themed and otherwise, singing, and to stay updated on her push for autism awareness.

"Bro": A Teen's Struggle with His Brother's Disability

Below is a lovely short film, a coming-of-age type of story about teenage Simon, who struggles to come to terms with his brother's disability. Simon's brother, Mark, has Fragile X Syndrome, also known as Martin-Bell Syndrome, which is the most common form of inherited intellectual disabilities among males.

The film's contrasts between private and public scenes with Mark and Simon as well as the contrasts between Simon's isolated home life and the new freedom in which he indulges highlight the complexity of relationships, familial and otherwise, during adolescence. The pull between Simon's love for Mark and resentment of Mark's disability only further complicate these relationships. But Simon begins to see that the only one judging Mark, and therefore Simon, is Simon himself.

Give it a look! It's about 18 minutes and worth the time it takes to watch. 

Bro from Chris Dundon-Smith on Vimeo.

Therapy in Paint and Purrs

Five-year-old Iris Grace Halmshaw from the United Kingdom loves to paint. She's got a knack for it, too; Iris has autism and is mostly non-verbal, but her painting style is not what one might expect from a child her age. Many of her paintings have sold for hundreds, and a few in the thousands, of dollars.

Iris's painting started when she was about two years old after she was diagnosed with autism and it was suggested she take up a hobby as a form of therapy. Painting thrilled her, and while her parents saw the joy painting gave their daughter and recognized the distinction between her art and the art of others her age, they were not immediately convinced that the talent they saw on the sheets of watercolor paper was more than biased parental perspective. According to her father, Peter Halmshaw, he thought the paintings were amazing, but assumed that's what all parents thought of their children's abilities. It wasn't until people outside the family started commenting on the paintings and offering to buy them that her skill became apparent.

"Octavia"

While painting did serve as a helpful therapy for her, it wasn't until last winter that somewhat of a breakthrough occurred in terms of Iris's communication skills. Painting is her way of expression, not speech. But during the Christmas holiday, the Halmshaw family got a temporary visitor that would influence Iris's development into the present. Shiraz, a Siberian house cat, had a brief stay with the Halmshaws and, as Iris's mother, Arabella Carter-Johnson, said, “opened up a door that I had no idea was unlocked.”

Iris had never really shown much of an interest in animals, but she followed Shiraz around the house, saying, “C-A-T” and “cat” and “more cat'. She sat comfortably next to Shiraz and offered her water, eventually inviting the cat to a sort of tea party. Shiraz calmed Iris, kept her company, and opened up a different side of the little girl.

But Shiraz had to go back home to London. Iris's parents were stunned by the interactions their daughter had with the cat, it was a short time before they got a Maine Coon kitten for Iris. Thula, named after one of Iris's favorite African lullabies, took to Iris instantly and caused positive change upon arrival. Iris wakes up early and enthusiastically and talks to Thula, who is a loyal and respectful companion. The respect goes both ways; Iris is not overly grabby with Thula (but over time has actually become more responsive to physical touch with the cat), and Thula is always there, as if by instinct, when Iris needs her.

Iris and Thula begin a new painting.

Further, Thula has been an enthusiastic painting assistant. When Iris clearly said “paint” and “painting for the first time, her mother's excitement sent Iris running around the house, arms joyously in the air. She came back to the kitchen where her painting station is set up, adds more paint to the paper, then takes off with brush in hand to show Thula the color she chose. Iris dabs the brush on the sheet upon which sits Thula, and the cat playfully puts her paws on top of the paint dots.

The two continually fortify their already strong bond, and Iris's communication skills and emotional control keep improving. Check out Iris's website to read more about Iris, her painting and other therapies, and Thula.

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!)

Cybernetic Senses: What It's Like to Hear in Color

Neil Harbisson with his "eyeborg" and his art

This week we've got a really cool TED Talk about a man who is, as far as his eyes are concerned, completely color blind. But when it comes to his ears, he has access to more colors than the average human. Since Neil Harbisson cannot see in color, he hears colors instead. This allows him to visually translate sound. (At left is  Harbisson with two of his visual  sound representations.) He can also hear things that are visual. For instance, he can not only hear a human's voice in the typical way, but he can also hear that person's face.

What some might consider a limitation has, with some scientific help, allowed Harbisson to extend beyond typical human capabilities. He is a proud cyborg living in a sweet-sounding world of color. Check it out!

Have a good rest of your Labor Day weekend!

Portland's Cost of Compliance

As it turns out, many Portland city properties are not compliant with ADA standards, even after recent renovations. But with the hefty price tags that come with mending these issues, it seems that officials need to take a look at which facilities would see the most benefit from being fixed.

According to Willamette Weekly, city officials have been putting together a list of problem areas and hope to fix them to avoid lawsuits, but it's a huge undertaking. There are 25,829 places on city property that are not compliant with ADA standards, and of those, almost 80% are in city parks.

Even the recently renovated Providence Park stadium is not up to code; Essentially none of the ramps and concourse walkways meet ADA slope requirements. Fixing this could cost up to $1.1 million.

So far, the city has spent $663,402 identifying barriers in extreme detail. They have taken into account fractions of inches. While this attention to detail is nice, one hopes that the city uses good judgement in prioritizing renovations. For instance, putting in wheelchair ramps where none currently exist might take precedence over raising a Benson Bubbler drinking fountain one inch.

According to disabilities advocate with the United Spinal Association, Ian Ruder, many of the identified barriers aren't keeping people from where they need to go. “It's a black-and-white law in a gray world,” Ruder says. “Hopefully they are able to prioritize the places that have the greatest impact for the most people.”

Ruder, a wheelchair user himself, went to some of the identified problem locations with Willamette Week and had a look. Ruder and WW took videos at five locations and identified and assessed the noted barriers. I recommend taking a look at the videos (from City Hall; the Portland Building 1, 2, and 3; Director Park; Providence Park; and Laurelhurst Park 1 and 2). Problems that were identified in documents aren't necessarily the most relevant issues.

According to officials from Portland Parks and Recreation, they will use a $68 million parks bond that is on the ballot this November to help with the upgrades, though the exact amount that would go into accessibility upgrading was not specified.

So, kind of a bummer that there are so many issues in our city that make for problematic accessibility, but at least they are being identified, and hopefully they will be fixed in spite of the large cost.

What do you think? Have you witnessed any of these issues firsthand? What do you think about Ruder's assessments?

Il Sogno di Omero - Exploring Dreams of the Blind

Last week, we got a post on the Mt. Hood Kiwanis Camp Facebook page from a page called Il Sogno d'Omero. My first instinct was that it was something spammy, but it is actually the title of an Italian film that hopes to come to fruition. Il Sogno di Omero--The Dream of Homer--is a documentary about five people who are blind from birth. Specifically, the film hopes to answer the question "What does one who lives without seeing dream about?" through a diary-like narrative that loosely follows Homer's "The Odyssey". 

The film, directed by Emiliano Aiello follows Rosa, Domenico, Gabriel, Daniela, and Fabio, five people who live sompletely separate lives and are unconnected to one another except in their habit of grabbing a tape recorder upon waking and describing their dreams. These oral diaries serve as the roots of the film's narrative.

Gabriel's story is the spine through which the other characters weave. His dreams often focus on and return to a metaphorical home. Domenico dreams in water, where he can move with ease and confidence without his sight. Rosa is a writer and an artist. Her dreams show up in her stories and sculptures. Daniela finds her dreams when she goes to the movies. She loves watching them through audio descriptions or when people describe the images for her. The images form from the sounds she hears. Fabio is an IT developer and a musician. He plays piano and accordion and matches his dreams to the music he writes. 

The film has gotten some funding and support from Roma III University, but the crew is trying to gain additional funding through an Indiegogo campaign. (If you check out that page, don't be discouraged if you can't at first read it; the English translation is near the bottom.)

Here is a small part of the film that has been produced. Check it out!