Disability Futures

You figured it out.

I am epileptic, and have seizure triggers out in the wild, just to inconvenience you. It is something I decided to make happen with my sheer desire to piss you off. That's how it works. You are the center of the world, so much so that I altered my brain in a life threatening way in order to fuck up your day.

That's how it goes.

I choose to be unable to go to dance things, though I am a good dancer, because too many flash cameras & poorly balanced bass can kill me. Yes, dance people, you are oppressed by my seizure disorder, which developed solely to make your life harder. The ADA is also fascist oppression all on poor widdle you. Because disabled people exist to upset your life.

Cyclists: my photosensitivity is actually a conspiracy by Big Automobile to get you squished like a pancake. You're exactly right. That's why the rape & death threats are acceptable, I'm working with big business. So yeah you're totally in the right continuing to knowingly hurt me, because my brain was specifically engineered to make your life harder (gosh, empathy is tough isn't it?)

Yet with election day dawning, access to that very right will be denied at polling places across the nation. Many disabled people are still  ​di​senfranchised by default, many polling places remain inaccessible despite the ​Americans with Disabilities Act, and turnout for disabled people generally trails the general population by around ​20 percenta​ge points.

Though people with different disabilities face different problems, they tend to all come together around this issue.  "I have seen my blind friends saying, 'If this law affects people with wheelchairs, I won't vote for the person supporting that,'" says Stephanie Woodward, ​Director of Advocacy at the Center for Disability Rights. "I see people with disabilities who aren't affected by an issue who still vote in support of others." That bloc-like thinking is, disability advocates argue, the only way to fight for access at the polls.

"When you take away our access to vote, it's a bigger slap in the face than anything else," Woodward says. "The only population that can genuinely be denied access to vote is the disabled population."

As the 2016 election cycle intensifies and candidates appeal to minority voters, one group is being left out. Candidates make frequent pleas to women and persons of color for their support, but they rarely mention what happens to be the country's largest minority: people with disabilities.

Three disability activists are working to change the narrative and bring greater visibility to the disability community's interests and voting power. #CriptheVote, a campaign launched by disability activists Alice Wong, Andrew Pulrang, and Gregg Beratan, intends to "engage both voters and politicians in a productive discussion about disability issues in the United States." These three energized activists took the time to talk with me about the mission of #CripTheVote.

 “As a staff we were thrilled at the respect that was growing in our building,” says Harrison, coordinator of Redland’s Positive Behavior Intervention Strategies (PBIS) program.

The PBIS process emphasizes constructive interventions as an alternative to punitive discipline. Redland, a bright, airy middle school with students who look like they’re happy to be there, has won an award for its efforts every year since starting the program in 2009.  Equally impressive, Redland’s referral rates broken down by student ethnicity are pretty evenly distributed among White, Black, and Hispanic students—unlike some schools that improve their overall numbers but still show disproportionate referral and suspension rates for students of color.

Tools To Use

Implement school wide expectations and teach positive behaviors.  Once we determined our core expectation and school motto—Respect School, Self, and Others—we set behavioral expectations for the classroom, hallway, buses, and cafeteria and posted these throughout the building and in all classrooms. Staff and students are taught the expectations through modeling, and lessons throughout the year reinforce these expectations Even our announcements end with our school motto.

Employ peer mediators. Peer mediation is a positive behavior intervention that has worked well for us. School counselors train student volunteers to mediate incidents involving their peers. For example, a peer might intercede in a situation where two students were referred to the office for using inappropriate language during an argument. At this age, it helps students to have someone who understands where they’re coming from—someone who can relate to them and give them positive feedback. Sometimes kids come up with ideas to solve problems that adults wouldn’t think of.

Have fun with creative rewards. Our students earn “Bulldog bucks,” paper money with a picture of our school mascot, as a reward for positive behavior, like picking up somebody’s books in the hallway or helping another student solve a thorny math problem. All students have to do is follow our Respect School, Self, and Others motto. Bus drivers hand out three dollars for good behavior on the bus. Substitute teachers hand out two dollar bills to students who follow directions, help others, and show respect and responsibility. Teachers and other staff members hand out one dollar bills. When students earn enough money, they can shop in the “Dog Pound” (our school store), where they can buy everything from school supplies to apparel, like hats and tee shirts. Ninety percent of the items in the store are donated by parents, while the rest of the merchandise comes from PBIS grant money. Sixth and seventh graders love shopping in the Dog Pound, but we had to up the ante for older students, who use their Bulldog bucks to get into the Dog Pound Café, during lunch.  The Café is an eighth grade hangout with Wii, air hockey, a variety of board games and puzzles, couches, chairs, and a flat screen TV—all from donated funds.....

After the accident, de los Reyes wondered what would become of that sprawling dreamscape. Nothing felt right anymore. He barely even felt like himself. Then, after months having not checked his email or used his cellphone, his sister brought him a laptop. He checked his email. He checked his voicemail. Among the hundreds of messages, there were dozens from a romantic interest, baffled at his sudden and total disappearance. The outlines of his former life began to return. He knew that to feel right again, he had to go back to work. Within three months, he did.

The return was bracing, but not in the way de los Reyes expected. Being back in the office was actually a balm, because the workplace had been fastidiously designed to accommodate wheelchairs, with wide halls and low elevator buttons. The problem was the rest of his life. De los Reyes, despite his mild demeanor, has never been content to let things happen slowly when they could happen fast. After the accident, he had methodically set about trying to do as many things as he’d ever done. Yet the limitations soon become obvious. He’d try to meet friends at a favorite restaurant, only to discover that he couldn’t quite get inside because of one tiny curb that some contractor had overlooked. He’d be steering his wheelchair down the sidewalk, only to be met with a tipped-over garbage can, which would force him to circumnavigate an entire block.

To de los Reyes, these myriad frustrations shared one thing: They didn’t actually speak to his own limitations. They spoke instead to the thoughtlessness all around him.

You could describe this in that old cliche that necessity breeds invention. But a more accurate interpretation is that in empathizing with others, we create things that we might never have created ourselves. We see past the specifics of what we know, to experiences that might actually be universal. So it’s all the more puzzling that design, as a discipline, has so often tended to focus on a mythical idea of the average consumer.

The idea is that by designing with the disabled in mind—designing so that the disabled can have universal access—we can create products better for everyone else. After his accident, de los Reyes now had no choice but to think about one classic example of universal design: the curb cut, those low concrete ramps that allow wheelchair users to mount a sidewalk, but which also help everyone from the elderly crossing the street to kids toting their bicycles.

De los Reyes wasn’t proposing that Microsoft become a sidewalk company. He was proposing a metaphor. He was hoping to find the digital world’s equivalent of the curb cut, something elegant that let everyone live a little easier. 

Following two accidents in my teens and twenties, I live with a serious spinal injury, getting around with the help of a wheelchair or crutches and with pain as a constant companion. When I am on retreat, I need to change position regularly, either by lying down or standing up. I need to do this. And at the places where I teach and practice, I can do this. Taraloka, a U.K. retreat center for women where I often teach, has a dedicated living space for disabled retreatants. There is an accessible bathroom, and the whole venue is wheelchair accessible. I know how lucky I am.

But I worry that others may not be so lucky. In the early days of establishing Buddhism in the West, disabled access was understandably not a priority. Heroic efforts transformed existing buildings into the beautiful Buddhist centers we see today, but often these buildings are multistory and without elevators, meaning that people with mobility impairments are inevitably excluded from encountering the dharma. Now that many of our sanghas have been established for decades, I believe the time is ripe to address accessibility head-on.

From there, the history of autism would unfold across decades, playing out in many and varied dramatic episodes, bizarre twists, and star turns, both heroic and villainous, by researchers, educators, activists and autistic people themselves. Donald, however, had no part in this. Instead, after Baltimore, he had gone back to Mississippi, where he spent the rest of his life, unremarked upon.

Well, not exactly. Donald is still alive today, healthy at 82, and a major figure in our new book. When we first tracked him down, in 2007, we were astonished to learn how his life had turned out.

He lives in his own house (the house he grew up in) within a safe community, where everyone knows him, with friends he sees regularly, a Cadillac to get around in, and a hobby he pursues daily (golf). That's when he is not enjoying his other hobby, travel. Donald, on his own, has travelled all over the United States and to a few dozen countries abroad. He has a closet full of albums packed with photos taken during his journeys.

His is the picture of the perfectly content retiree - not the life sentence in an institution which was nearly his lot - where he surely would have wilted, and never done any of those things. For that, his mother deserves enormous credit. In addition to bringing her boy home, she worked tirelessly to help him connect to the world around him, to give him language, to help him learn to take care of himself.

Something took in all this, because, by the time he was a teenager, Donald was able to attend a regular high school, and then college, where he came out with passing grades in French and mathematics.

Credit for these outcomes must also go to Donald himself. It was, after all, his innate intelligence and his own capacity for learning which led to this blooming into full potential.

But we saw something else when we went to Forest - and this is where we think the movie of Donald's life would get interesting. The town itself played a part in Donald's excellent outcome - the roughly 3,000 people of Forest, Mississippi, who made a probably unconscious but clear decision in how they were going to treat this strange boy, then man, who lived among them. They decided, in short, to accept him - to count him as "one of their own" and to protect him.

We know this because when we first visited Forest and began asking questions about Donald, at least three people warned us they would track us down and get even if we did anything to hurt Donald. That certainly told us something about how they saw him.

But as a person with a disability, I consider technology an incredible gift. It has opened up the world to me. Like Hugh Herr, the biophysicist who specializes in robotics, says, "Remove technology and I am imprisoned. All I can do is crawl. But with it I am free."

Free.

I have a hearing disability. My diagnosis is profound hearing loss. I identify as "hard of hearing" (HOH) but I could also identify as "oral deaf." My hearing is pretty bad, but I don't know sign language and I am not part of the deaf community.

I rely on lip reading to communicate. I think I'm pretty good at it, but it's not easy. It's estimated that only about 30 per cent of speech can be interpreted by lip reading. The rest of it is guesswork, and it's made more difficult by things like poor lighting, visual distractions, hand gestures, conflicting body language and accents.

I fill in the blanks, sorting through all the possible puzzle pieces and inserting the most likely ones. It's mentally draining, exhausting and not terribly accurate. Plus, it has etched deep frown lines into my brow, as I have been frowning in concentration for much of my life.

Because of my disability, I can't use a regular telephone. I use a TTY, which is a text telephone. If I need to call someone -- and, yes, in this day and age, I still need to call places, like my doctor's office -- I dial the relay service. The operator there places the call for me. I type my side of the conversation, and she reads it out loud to the person I am calling.

That person, in turn, dictates their part of the conversation to the operator, who types it out for me. It's cumbersome. It's anything but private. And often, the transcription quality is poor, and I'm left floundering.

But online, where text-based communication rules, I'm on an even footing with everyone else. I understand everything. With technology, I am free. I'm equal. I'm not disabled.

A blind man became the first person chosen to give Google's self-driving car a test ride after the federal government redefined what it means to be a driver on Wednesday.

For Steve Mahan, traveling across town requires planning.

He lives two miles from the nearest bus stop and when his family is at work he relies on the VTA Paratransit Service.

That's why a ride he took three years ago was so magical. "Look mom, no hands," he said.

For the first time since he became blind, Mahan sat in the driver's seat of a Google self-driving car and that's about all he did.

But California rules say autonomous cars still need a licensed driver and Mahan can't get a driver's license. "If it is required to have a licensed human driver in the car, it means I could not go any place in that vehicle without someone accompanying me," Mahan said.

It would throw on the brakes for Google's next project -- cars without regular controls.

But now, in a letter to Google, federal regulators made a key clarification where the law refers to a driver as not having to be human.

Tech futurist Paul Saffo said it doesn't clear up other legal requirements.

Robotic cars, for instance, still have to have mirrors. "The rear view mirror was unnecessary for me, the side mirrors were unnecessary for me," Mahan said.

But if California follows the federal government's lead, it means people like Mahan could have more independence.

Mahan said he doesn't miss the pedals or steering wheel one bit. "It's like riding with a fabulous driver," Mahan said. "Anybody who spends five minutes out in that traffic will realize that the danger are the humans. Personally I can't wait for the robots to start driving."