Disability Futures

Since the days when my mother wouldn’t let my older brother go out to play stickball if I wasn’t with him, there’s been a lot of progress in attitudes toward those we now call developmentally or intellectually challenged. There’s mainstreaming them into public schools, the Special Olympics, TV shows like “Speechless,” Down syndrome children in clothing ads. There are group homes, not warehousing. There’s awareness that words can wound. I flinched when someone yelled “retard” at my brother, Jimmy. For some comedians, it was a laugh line. You don’t hear it much anymore.

And now a barbaric attack in Chicago on an intellectually disabled teenager is rightly being treated as a hate crime. Authorities cited the virulent racial epithets shouted by the four African-American attackers at their white victim, but also noted that they hurled insults about his developmental limitations as well.

His being different may be the main reason they chose him. The developmentally challenged so crave kindness they make inviting prey. The victim, who knew one of his attackers, was taken to an apartment where he was tied up, punched and kicked. His mouth was taped shut, his scalp sliced open with a knife. For added humiliation, the assailants forced his head into a toilet and ordered him to drink.

That is Amit Patel’s new reality after he lost his sight unexpectedly in 2012, six months after he got married.

He now relies on guide dog Kika to get him around the once familiar streets of London.

But the footage captured by his canine guide hasn’t always shown a city willing to help him.

“The video came out of necessity,” Patel says. “Kika was getting hit by peoples’ bags and she was getting a lot of abuse. A woman stopped me one day and had a go at me for holding everyone up and said I should apologise, which was a real shock.”

The former doctor found a solution – attach a GoPro to Kika’s harness and film every journey. Patel’s wife, Seema, can then review the footage if it is felt there was something amiss about that day.

And when alterations were made to a London train station the camera came into its own.

“I asked for help and no one came,” Patel recounts. “The video shows lots of staff standing around me and this one guy looking over many times.

“Eventually when the staff member actually came to me the first thing he said was ‘sorry I didn’t see you’ and that really bugged me. He wouldn’t say that to someone who wasn’t visually impaired.

“It really makes me angry. It’s the fact that someone is fobbing me off.”

The footage was sent to Network Rail giving Patel the “valuable evidence” needed to lodge a formal complaint about an incident he couldn’t see.

“It made me feel vulnerable but having the footage was a godsend,” he says.

“Having the camera, having the voice, having the actual scenario played out in real time it actually gives me something to go back to the company and say ‘this is what happened to me and it needs to be sorted’.”

The next time you’re at Logan International Airport, waiting patiently at your boarding gate or jostling to grab your suitcase at baggage claim, look up. You’ll see a different kind of public service announcement – courtesy of Perkins School for the Blind.

The Federal Communications Commission last week approved one of the most important advances in communications technology for deaf and hard of hearing people in decades, in one of the agency’s final acts under the leadership of outgoing FCC Chairman Tom Wheeler.

In a move that’s being hailed by accessibility advocates and leaders in the deaf and hard of hearing community as a historic step forward, the five-member FCC unanimously adopted rules to facilitate the transition from outdated, analog teletype (TTY) devices to a new, internet-based, real-time text messaging standard (RTT) compatible with the latest smartphones.

As a result of the FCC’s action, the nation’s wireless carriers and device manufacturers will be required to support RTT functionality, which allows real-time text messaging—without the need to hit “send”—in which the recipient can instantly see letters, characters and words as they are being typed.

“We now have the opportunity—as we design our new communications system that is based on internet-protocol—to finally make our nation’s communications systems accessible to everyone,” FCC Chairman Wheeler said at the agency’s monthly meetinglast Thursday.

This innovation will facilitate more natural, conversation-friendly communication for deaf and hard of hearing people—without the need for separate, specialized hardware. It will also allow 911 operators to receive incomplete messages during an emergency, potentially saving lives. RTT technology is expected to be interoperable across wireless networks and devices, creating the potential for unprecedented ease of communication between deaf and hearing people.

A hate crime is a very specific thing. A hate crime occurs when somebody commits a crime against somebody who’s black or gay or Jewish or Muslim or whatever just because that person is black or gay or Jewish or Muslim or whatever. You can be sentenced to more time for committing a hate crime than you would be for committing a regular crime.

But a love crime is an even more specific thing. A love crime occurs when someone murders a cripple. It officially becomes a love crime if the killer claims the love defense by saying, “I really loved her/him and it broke my heart to see them all crippled up like that. So I took mercy on them and killed them.” Quite often you can be sentenced to a lot less time for committing a love crime than you would be for committing a regular crime. And it helps if the cripple you kill is a relative.

Love crimes happen all the time. In 2013, Dorothy Spourdalakis killed her 14-year-old autistic son, Alex. With the help of Alex’s caregiver, she stabbed Alex in the chest repeatedly before slitting his wrists. She claimed the love defense. She was sentenced to only four years in prison and was released last week six months early. 

The Tokyo-based psychiatrist Layla McCay founded the Center for Urban Design and Mental Health over a year ago, and it’s grown at a more rapid pace than she expected. “Be careful of finding an unmet need,” she jokes, noting that much of her time is now spent running the center. The organization aims to harness knowledge about urban design and mental health that is already out there, but isn’t being shared as much as it could, particularly with policymakers who can implement it.

What can urban planners do to promote mental health?

We highlight four main themes that should be incorporated into urban design to support mental health. These areas have the most research behind them.

• Green spaces. We know there’s a compelling relationship between green space and mental well-being, with fairly persuasive research showing how, for example, access to green space reduces anxiety or improves ADHD in children. This means space that you don’t have to make a special trip to, but space that you encounter in daily life—even green space that you see from your window.
• Active spaces. When people are designing for health, this is the focus. It’s a big opportunity for physical health, but there’s also a strong mental health correlation. For mild to moderate depression, regular exercise can act in the same way that antidepressants do. Examples of such design are walkable spaces or spaces that encourage exercise on a daily commute.
• Social spaces. These are spaces that promote natural interactions among people. Research shows that people who live in neighborhoods with this kind of space have lower mental distress. It’s a question of making public places more social, by, say, putting in more benches or setting up chessboards in a park or square.
• Safe spaces. This is crucial, whether it means security in terms of crime, traffic, or, for people with dementia, safety from getting lost. But you don’t want to design a safe space so that it feels suffocating or sterile. For example, people should have choices about which route to take rather than being constrained into one specific “safe” route.

When Stephanie Brown, a community health worker (CHW) affiliated with a large health care system in Baltimore, sat across from her new client, she thought she’d be teaching the elderly woman to prepare a checklist of questions for her doctor.

Instead, the woman nervously admitted that her biggest concern was a waterline break in her house. She and her husband had no money to fix it, so they’d spent weeks wading through standing water. Even worse, they had no clean drinking water.

Brown juggled phone calls and emails with agencies across the city to secure repair funds and get a crew out to the couple’s house.

Coordinating home repairs may seem far afield from the typical health care job description, but for CHWs, doing the job well means taking a 360-degree view of a patient’s health. That includes the safety of her home; her ability to travel to a doctor’s office; and even her state of employment or financial security.

Harassment on social media is real. We’ve seen how trolls and bullies use social media to attack other users, such as insulting them, posting their personal details, creating embarrassing memes, and so on. However in what could be the first of its kind, it seems that a Twitter troll has managed to physically harm another user through Twitter.

How did this happen, you ask? As you might know, rapidly flashing images/lights can provoke a seizure in people, especially if you’re someone who is epileptic. This seems to be something that Twitter user @jew_goldstein knew when he/she posted an flashing GIF directed at Vanity Fair and Newsweek writer Kurt Eichenwald, which reportedly caused a seizure.

In response to the attack, Eichenwald’s wife posted on his account on his behalf which read, “@jew_goldstein This is his wife, you caused a seizure. I have your information and have called the police to report the assault.” Eichenwald later followed up with a lengthy series of tweets detailing his experience and his stand on the matter.

Twitter user @jew_goldstein’s account has since been suspended, but thanks to the folks at Mediaite, they managed to grab a screenshot of the alleged post. It is unclear how this will turn out and whether or not Eichenwald has a case against the user, but for now this is rather disturbing.

Although families with a child with Down syndrome do face extra medical expenses, they probably won't be deeply burdened financially, a new study suggests.

Researchers found that average monthly out-of-pocket medical costs are about $80 more for children with Down syndrome compared to other kids. That adds up to about $18,000 over the first 18 years of life, the study authors said.

"I think many people will be surprised to learn that parents have few extra medical expenses when raising a child or adolescent with Down syndrome, since health insurance covers most of the costs," said study author Dr. Brian Skotko. He is co-director of the Down Syndrome Program at Massachusetts General Hospital in Boston.