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.