Disability Futures

JustFix.NYC is one of a number of new tools and services aimed at helping renters fight for their rights in apartment buildings. They can be as simple as a phone’s video camera, as the New York Times wrote in October, or as smart as a system of sensors that can record when a landlord isn’t providing enough heat.

"There’s a lot of online tools to help people find apartments, but there’s nothing really there to help someone live in an apartment," says Philip J. DeVon, community membership manager for Chicago’s Metropolitan Tenants Organization, a group that worked with a design studio to develop its own app for tenants and landlords to resolve issues that arise in buildings.

Over 5,000 people have signed up for the app, called Squared Away Chicago, and hundreds of issues have been marked as "resolved" within the app, DeVon says, such as getting security deposits returned and repairs made. The group is talking with large management companies about having all building managers use the app.

SquaredAway is mainly meant to help landlords and tenants keep relations friendly. Another technology under development, Heat Seek NYC, is more intended for situations when there’s already conflict: The New York startup’s sensors measure building and apartment temperatures, helping tenants prove their landlord isn’t providing enough heat (New York City law requires landlords maintain overnight temperatures of at least 55 degrees.)

So far Heat Seek has done a small pilot partnering with community groups but installed sensors themselves in six buildings, says co-founder and executive director Noelle Francois. But the team has worked to make them simple to use, so tenants or organizers could operate them on their own. "We didn’t want tech literacy to be a prerequisite," she says—an apartment Wi-Fi connection isn’t even necessary. An expanded pilot, with 120 sensors in 40 buildings, is next, with groups like Community Action for Safe Apartments in the Bronx taking the lead.

For technology tools to be their most effective, however, city officials often also have to be on board. JustFix.NYC wants to work with the city to use it to schedule housing inspector visits, so tenants can be sure to be home. Los Angeles housing advocates, Strategic Actions For A Just Economy (SAFE) learned that it needed to work with the city the hard way: It developed Tenants In Action, a housing violation reporting app, before it had integrated with the city’s housing violation system.

"The complaints didn’t go straight to the housing department. They went straight to us, which didn’t really help. We just ended up with tons of complaints on our desk," says SAFE executive director Cynthia Strathmann.

I have known the writer Leroy Moore for about a decade, and ever since I’ve known him he has been on the front lines fighting for the human rights of disabled people, making art about the issues that are important to him and his community or out promoting the work of other disabled artists and scholars. He is currently promoting his newest book, “Black Kripple Delivers Poetry & Lyrics,” so we sat down to delve inside the mind of one of the fixtures on the Bay Area art and activist scene, Leroy Moore. Check him out in his own words.

M.O.I. JR: Can you tell the people, when did you discover that you had a love for poetry?

Leroy Moore: I was always a writer, but when my father took me to go see the Last Poets in the early ‘80s I knew that was it, and it also flipped what my high school teachers were shoving down my throat: white dead men’s poetry.

Since that show in New York, I wrote more and more poetry, but I didn’t come out publicly until the early ‘90s doing the open mic scene with the Po’ Poets of Poor Magazine, then Molotov Mouths and a group that I started for poets and artists with disabilities of color called Voices: Disabled Poets and Artists of Color.

Philip Reyes is a seventh grader at Heim Middle School in Williamsville, New York, and he recently wrote a piece about autism and communication for The Buffalo News. Reyes is nonverbal, uses Rapid Prompting Method (RPM) to communicate, and he hopes sharing his story will give other nonverbal kids the same opportunities as him.

“I am attacking the idea that autism is a bad thing that should be eradicated,” Reyes wrote. “For me, autism is a different way of sensing, moving and interacting with the world.”

Related: 29 Memes That Nail What It’s Like to Be an Autism Parent

“When people talked about my concerning behaviors in front of me I would feel embarrassed and pent-up shame,” he added. “I was made to feel horrible for my autism.”.

Reyes didn’t start using RPM until he was 9, and he wrote that the results were life-changing:

Children know about Civil Rights leaders such as Dr. Martin Luther King, Jr. and Cesar Chavez. But many have yet to learn about the transformational work of Ed Roberts, hailed as the “Father of Disability Rights.” Ed Roberts: Father of Disability Rights is a biography about Edward Verne Roberts, who, at age 14, became a quadriplegic as a result of Polio. The life he lived post-Polio was one of transformation, both for himself, and for society’s image of people with disabilities. 

On September 19, 2015 Alice Wong interviewed her friend Haben Girma at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.

On accessible technology and communication

Alice: Haben, why don’t…for those who are listening to this recording explain the set up in terms of the tapping that a person might hear during this recording. Would you like to introduce your interpreter?

Haben: If you’re able to hear typing in the background, my friend Gordon Brynes is transcribing what Alice is saying, and he’s doing this on a wireless keyboard and it’s showing up on a digital braille display, and we’re using this communication method because I’m deafblind and can’t hear Alice. Gordon is typing and I’m reading as Alice is speaking. Thanks for asking us to share that Alice.

Alice: Yes, I figured that since this is an oral history …listeners may wonder, “Haben’s deafblind, how does this work?” [I] want to make sure that people can visualize that in this room you and I are together talking facilitated by humans and technology.

Haben: Humans and technology have a potential to create many possibilities when they work together and sometimes people fear technology replacing humans, but technologies, even the best translating apps, can’t facilitate cultural information. Many, many people have been providing me with communication facilitation over the years in so many different environments and we’ve used different technologies over the years as technology has evolved. The technology I’m using right now is a BrailleNote Apex made by Humanware combined with an Apple wireless keyboard and I hope in 2 years … in 5 years I’ll have an even better device combined with a fabulous human who facilitates human interactions to gain access to audio and visual information.

For decades, Scott had struggled to find his place in the world. Misdiagnosed with schizoaffective disorder and manic depression (now called bipolar disorder), he spent much of his life in and out of group homes and psychiatric institutions, often heavily medicated: At one point, he was taking 18 pills a day.

Now, with the right kind of help, Scott is living independently. Two aides visit twice a week to take him to the doctor or to the grocery store. One also takes him to the library, where he has rediscovered reading, eagerly devouring the plot of the latestStar Wars fan-fiction book. He is still figuring out what having autism means for him, but he has embraced the idea that many people with autism have above-average intelligence.

“It’s almost like the diagnosis made him a different person,” says Leila, who until recently never thought her adult son would be able to live alone. “I could see he changed almost overnight in his attitude and his self-confidence.”

Although Scott has endured many hardships in his life, he is fortunate in one way: He has finally learned that he has autism. Many adults who grew up before “autism” was part of the public vernacular live their entire lives without ever getting an accurate diagnosis. “Autism just wasn’t something common or talked about when the children were little,” says Leila.

A documentary focusing on how people with autism experience love and manage romantic relationships is set to appear on PBS.

“Autism in Love” will air on the network’s “Independent Lens” series in January.

The film, which debuted earlier this year at the Tribeca Film Festival, follows four people on the spectrum as they seek out and maintain relationships.

A glance at news headlines confirms that Powell and her sons are not an anomaly. From a 3-year-old suspended for too many toileting mishaps to a 4-year-old booted out of school for kicking off his shoes and crying, toddlers are racking up punishments that leave many parents and child experts bewildered. Overall the rise in school suspensions and disproportionate impact on youth of color has triggered a flurry of interest from activists and high-ranking government officials, and for good reason: A February 2015 report from UCLA's Civil Rights Project examined out-of-school suspension data for every school district in the country and found that nearly 3.5 million children—about six out of every 100 public school students—were suspended at least once during the 2011-12 school year, with close to half of those (1.55 million) suspended multiple times.

But for some more astounding than these discipline statistics were the thousands of the nation’s youngest learners—nearly 8,000 preschoolers—suspended from school in the same year, often for relatively minor disruptions and misbehaviors. For researchers and educators immersed in this work, why preschoolers are put out of school and the entrenched racial disparity seems most closely tied to reasons such as teacher bias and children living in poverty whose hitting, biting, and pinching is frequently labeled misconduct rather than developmental delays.

In a random national sample of more than 4,500 state-funded pre-k classrooms in 40 states, his 2005 report revealed 3- and 4-year-olds were expelled from pre-k programs more than three times as often as students in kindergarten through high school. The rates of preschool expulsions varied dramatically with age, gender, and race: 4-year-olds were expelled at a higher rate than 3-year-olds; boys were over four times as likely to be ousted from prekindergarten as girls; and black children were expelled about twice as often as Latino and white youngsters, and over five times as often as Asian-American children.