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“Everyone Has a Basic Right to Good Design” – Next City

EDITOR’S NOTE: This is an excerpt from “The Great Indoors: The Surprising Science of How Buildings Shape Our Behavior, Health, and Happiness,” by Emily Anthes, published in June 2020 by Farrar, Straus and Giroux.

On May 22, 2014, Lindsey Eaton took the stage at the Wells Fargo Arena in Tempe, Arizona. The petite blond high school senior loved writing and public speaking, and she had long dreamed of giving an address at her graduation. The moment had finally arrived. She stepped up to the microphone and delivered the speech she’d been practicing for months. “I have autism, which means I have a diagnosis of awesomeness,” she told the crowd, to cheers and applause. “I want to thank each and every member of the faculty and every graduating student for seeing in me possibilities, not disabilities.”

It was a triumphant moment, but the high faded fast. On the ride home from the ceremony, Eaton broke down in tears. Her classmates were all on their way to celebratory after-parties and then, in a few months, to college. She was headed home with her parents, with no clear plan for the future. All sorts of worries ran through her mind: How was she going to find a job? An apartment? Would she be able to live on her own?

In the months and years that followed, Eaton struggled. She watched her high school classmates and two younger sisters begin their lives as independent adults; meanwhile, she was stuck in her parents’ home, worrying that her best days were behind her. This wasn’t the life she had imagined for herself. “I had bigger dreams, I had bigger hopes, I had bigger expectations,” she recalled when we spoke in the spring of 2018.

She wanted to find a job that she loved — at the time, she was hoping to become a preschool teacher — and to live on her own. But she didn’t know how to make that happen. Eaton couldn’t pay the rent on an apartment by herself, and she was nervous about the prospect of sharing space with a roommate. And there wasn’t a place that would really meet her needs. She didn’t drive, so she’d need to live close to public transit, but she couldn’t tolerate loud noise, so a bustling downtown location wouldn’t be ideal either. And because she was still trying to master some of the tasks of daily living, like cleaning and staying organized, she’d probably do best in a place with a robust support system or, at least, an understanding landlord.

Her parents reconciled themselves to never being empty nesters. “Our vision for Lindsey and her life was to have her live in a guest home behind our house,” Doug Eaton, Lindsey’s father, told me. “That was as expansive as our vision.”

But in the summer of 2018 — four years after graduating from high school and a few months after we first spoke — Lindsey Eaton would finally move into a place of her own.

What “Accessible” Really Means

In the United States, the disability rights movement took root in the mid-twentieth century, years before autism became a widely recognized condition. In the early years, discussions of accessibility focused primarily on people with physical disabilities. In 1961, the American Standards Association published a set of guidelines for “making buildings and facilities accessible to, and usable by, the physically handicapped,” recommending design features like wheelchair ramps, wide doorways, and bathroom handrails. Many of these ideas were later formalized in the Americans with Disabilities Act (ADA), enacted in 1990, and the accompanying design standards. The ADA was a landmark piece of civil rights legislation, prohibiting disability-based discrimination and mandating that buildings be accessible. (According to the act, a “failure to remove architectural barriers” in existing buildings was itself a form of discrimination.) It catalyzed major accessibility improvements, particularly for people who use wheelchairs: curb cuts, ramps, automatic doors, and accessible restrooms all became much more common.

But many barriers remain. Enforcement of the ADA is inconsistent, the law itself has loopholes, and many buildings and public spaces are still essentially unnavigable for people with disabilities. What’s more, designers, developers, and property owners have traditionally focused more on accommodating wheelchair users than people with less visible differences, especially those that primarily manifest themselves in the brain. Many features of the built environment can pose challenges for people with certain cognitive disabilities, mental illnesses, and neurological conditions. For instance, people with post-traumatic stress disorder (PTSD) can become anxious when they’re forced to navigate narrow passageways or blind corners, while autism, epilepsy, migraines, and traumatic brain injuries can all make people exquisitely sensitive to certain sensory stimuli like light and sound.

Beyond unwelcoming public spaces, people with some kinds of cognitive and developmental disabilities may have trouble finding homes that meet their needs, just like Lindsey Eaton did.

“People end up in housing that doesn’t really work well for them,” said Sam Crane, the director of public policy at the Autistic Self Advocacy Network (ASAN). Flickering lights, overheard conversations, the buzz of home appliances, and the smell of a neighbor cooking dinner can all bother people with autism, who may struggle if they live in an apartment that’s not soundproofed, for example, or that shares an HVAC system with other units, allowing external scents to seep in.

A common room called The Lego Lounge provides tactile stimulation. (Photo courtesy First Place Phoenix)

Moreover, some autistic adults may need living spaces that can accommodate their repetitive, self-soothing movements. Crane told me about a friend of hers: “She, like a lot of autistic people, has a need to jump up and down,” Crane said. “So this is someone who really shouldn’t be in an apartment that’s above someone else.” Her friend did manage to find an apartment that fit the bill but ended up with a landlord who hassled her for not keeping it clean enough. The friend ultimately moved out — and into Crane’s basement. “Management practices can be really significant in terms of whether people can stay in an apartment or not,” Crane said. Cost is a major obstacle, too, especially because many adults with developmental disabilities are underemployed and live on limited incomes.

In part, the lack of housing for autistic adults has been a chicken- and-egg problem. Relatively few autistic adults have lived independently because there hasn’t been enough suitable housing or support, and designers have not traditionally prioritized their needs because there weren’t more of them living independently. “There’s quite a lot of people with physical disabilities who are living in the community and that created a pretty strong pressure to make housing physically accessible,” Crane said. “It’s been a little bit slower for people with really significant intellectual and developmental disabilities.”

But thanks to several converging trends, ideas about accessibility are evolving. Over the last several decades, many countries have embarked on a process of deinstitutionalization, closing the large hospitals and institutions that were once filled with adults with mental illnesses and developmental disabilities. In 1999, the U.S. Supreme Court declared that sequestering disabled people in large group facilities was a form of discrimination and that government services should be provided “in the most integrated setting appropriate.” As a result, far more adults with disabilities are living and receiving supportive services in their own homes, neighborhoods, and communities; many are advocating for themselves and fighting for their right to live, work, and attend school alongside people without disabilities.

Additionally, disability rights activists have been advancing the neurodiversity paradigm, which holds that neurological conditions— including autism, dyslexia, Tourette’s syndrome, and ADHD — are not defects or dysfunctions but simply different ways of experiencing the world, natural cognitive variations that come with some unique strengths. It’s part of a broader cultural shift (albeit an incomplete one) in how we view disability. The traditional medical model of disability, which characterizes physical and cognitive impairments as problems to be fixed, has given way to the social model, which posits that it’s not using a wheelchair or having autism that’s disabling — it’s living in an environment (and a society) that doesn’t accommodate these kinds of differences.

And “accessible design” has given way to “universal design,” in which the goal is to create spaces, products, and experiences that serve the widest possible range of people, at every age and along the entire spectrum of ability. The goal is to do more than simply grant people “access.” Rather, it’s to empower people to participate fully in all aspects of society.

“Everyone has a basic right to good design,” said Magda Mostafa, an architect and associate professor at the American University in Cairo who specializes in designing for people with autism. “Design standards only cater to that perfect six-foot-tall male individual that has good visual capacity, has good hearing capacity, has a statistically typical sensory profile, and I think it’s very, very limiting. We’re excluding so many people.”

Medical advances and our ever-increasing life spans mean that far more of us are living with disabilities than ever before. One in ten American adults reports having some kind of cognitive disability, and a number of cognitive and developmental conditions, especially autism and ADHD, are being diagnosed much more frequently than they were in decades past. And disability is dynamic; over the course of our lifetimes, we will all experience fluctuations in our physical and mental abilities.

Designers are increasingly taking these cognitive and sensory differences into account.

“There’s been increasing interest in understanding what adults on the spectrum need to live more independently in the community,” said Sherry Ahrentzen, a professor at the Shimberg Center for Housing Studies at the University of Florida. A little more than a decade ago, Ahrentzen began looking into this subject herself, in collaboration with a nonprofit organization that wanted to start building housing for autistic adults. Fortunately for Lindsey Eaton, that organization happened to be based in Phoenix, Arizona, just miles from where she grew up.

Designing for People With Autism

In 1991, Denise Resnik — a preternaturally cheerful marketing executive — gave birth to her second child, a boy she named Matt. In the months following Matt’s first birthday, some of the skills that he’d mastered started to fall away. His language regressed, and he stopped making eye contact with his parents. By the time Matt turned two, doctors had diagnosed him with autism. “And we were told to love, accept, and plan to institutionalize him,” Resnik told me.

Resnik, a Phoenix native who is the CEO and founder of her own communications firm, doesn’t much like being told what to do, and in 1997, she cofounded what is now known as the Southwest Autism Research and Resource Center (SARRC). Over the years that followed, she helped SARRC grow into a 190-employee, $15 million organization that offers almost every imaginable service to autistic people and their families, including diagnostic testing, early intervention programs, educational workshops, support groups, a peer mentorship program, community outreach in English and Spanish, employment coaching, an inclusive preschool, and a research center.

Denise Resnik, founder, president and board chair of First Place. (Stephen G. Dreiseszun/Viewpoint Photographers)

As SARRC grew, Resnik kept thinking about housing, which was becoming an urgent issue: every year, roughly fifty thousand autistic kids come of age in the United States, and they all need places to live. The issue was personally pressing, too. Matt was growing up, and Resnik knew that she and her husband wouldn’t be around forever. Though Matt loved to sing, he struggled with spoken language and experienced frequent seizures, which are not uncommon in people with autism. These challenges would make it difficult for Matt to live entirely on his own, Resnik thought, but she didn’t think he belonged in an institution or a group home either. “I went to some of those built environments, and I ran away as fast as I possibly could,” she recalled.

Resnik began to consider creating a different kind of housing development specifically for adults on the spectrum, and in 2007, she partnered with Ahrentzen, then at Arizona State University, and her colleague Kim Steele. Together, they began to explore the options and lay out the possibilities, developing a set of design goals and guidelines for creating homes for autistic adults. (Ahrentzen and Steele published their work in a 2009 report, Advancing Full Spectrum Housing: Designing for Adults with Autism Spectrum Disorders.)

The guidelines are not hard-and-fast rules — there is no one-size-fits-all solution when designing for people with autism (or, for that matter, people without autism). For instance, while many autistic people are overwhelmed by sensory stimuli, others actually crave this kind of stimulation.

Architects can easily tailor private homes to these individual preferences; building shared residences is trickier, but in most cases, designers should default to creating calming environments, Ahrentzen and Steele say. (They can add dedicated sensory rooms, kitted out with colorful lights and tactile toys, for sensory-seeking residents, who can also embellish their own private spaces with the stimuli they need.)

Ahrentzen and Steele’s guidelines also urge architects to think carefully about residents’ social lives. Because social interaction can be a challenge for some autistic people, there’s often an assumption that people on the spectrum aren’t interested in forming close relationships with others. In fact, Ahrentzen and Steele spoke to developers who didn’t think they’d need to design any spaces for couples. But that’s simply not true. “People on the spectrum have life experiences and want life experiences like a lot of other people not on the spectrum,” Ahrentzen said.

To that end, the guidelines suggest that architects designing shared residences create common spaces — courtyards and kitchens, gardens and mailrooms — where residents can encounter one another. At the same time, they should find ways to make sure that people can control how much and what kind of interaction they have. For instance, designers could create common spaces with alcoves, nooks, and window seats, which make it possible for residents to spend time in the company of others without having to sit in the center of a crowd. They can strategically deploy half walls, wall cutouts, and interior windows that enable people to preview shared spaces before entering them.

Moreover, ensuring that residents have private spaces that they can call their own can make them feel more comfortable taking social risks. It also honors their dignity, something that group homes and institutions don’t always do. “We saw places where they wouldn’t put doors on bedrooms because they thought people could hurt themselves and always needed to be under surveillance,” Ahrentzen said.

In addition, the guidelines suggest that housing for autistic adults should promote independence, keep occupants healthy and safe, and be both affordable and well integrated into the broader community.

The design guidelines were just a starting point for Resnik. In the years that followed, she and her colleagues at SARRC held a series of focus groups and discussions with autistic adults and their family members, autism service providers, local developers, and housing officials. In 2012, Resnik launched First Place, a sister nonprofit to SARRC; two years later, she closed the deal on a vacant 1.4-acre plot of land in the heart of midtown Phoenix. The organization set out to create an apartment building, which they called First Place–Phoenix, for adults with autism, and hired RSP Architects to lead the design process. The architects drew on Ahrentzen and Steele’s report and the information SARRC gathered at its community meetings and focus groups; to solicit more feedback on their design ideas, they also hosted two national design charettes, both of which included autistic adults.

A Residence That Allows for Privacy, With Space for Community

In late April 2018, with construction on First Place–Phoenix nearing completion, I fly to Arizona to join a “hard hat tour” of the building. Resnik arrives at the construction site in a sleeveless blue dress; she slips off her nude pumps and ties on a pair of black sneakers. There are more than a dozen of us there for the tour, and we follow Resnik’s lead, donning neon-yellow construction vests and protective headwear. She leads us into the lobby, which is still under construction. It smells like paint and plaster, and wires hang from the ceiling.

“You are now standing inside the dream,” she announces.

The dream is a four-story, 81,000-square-foot property with 55 apartments of various sizes. Prices start at $3,800 a month for a roughly 750-square-foot one-bedroom. The rent is steep, Resnik acknowledges, but includes all utilities and various supportive services: First Place support specialists are available 24/7 to help residents with whatever they happen to need, whether that’s learning how to manage their medications or career and wellness coaching. (Some residents may qualify for additional government-funded services, like occupational therapy, meal delivery, transportation, or in-home aides who assist with bathing and dressing.)

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