Everyone Should Be Able to Use the Public Restroom: When ADA Is Not Enough

Kal Cobalt is a disabled trans man. Relying on accessibility devices when out in public means using accessible bathrooms, which means that Cobalt knows all too well that so-called accessible bathrooms are sometimes only “technically” accessible.

Issues of accessibility in the U.S. are wide-ranging, impacting everything from transportation to employment, health access, and yes, the basic right of access to bathrooms. Across the country, many public venues deem themselves “ADA-compliant” after claiming to adhere to design regulations set forth within the ADA Accessibility Guidelines and the American National Standards for Accessible Design. However, there are no overarching governing boards or enforcement agencies to ensure actual accessibility, creating a legal loophole wherein offices, schools, and public buildings can discriminate against disabled people almost without repercussion.

A Portland resident, Cobalt is 41 years old and has Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and fibromyalgia. His joints dislocate easily, he can pass out when blood rushes swiftly from his head, and he deals with extreme fatigue, widespread pain, and fuzzy-headed thinking. To manage these symptoms, he sometimes uses a cane or a rollator and other times uses a manual wheelchair.

At times, he finds himself trapped thanks to only “technically” accessible bathroom stalls.

“My options were to either leave the wheelchair outside of my stall completely—scary… as any wheelchair user will tell you that leaving your wheelchair unattended in public is a bit like leaving your wallet, go bag, shoes, and treasured tchotchkes there—[or] push the wheelchair as far into the stall as possible, thus protecting my valuables and making my transfer from wheelchair to toilet as safe as possible, but leaving the stall door wide open.”

He said he would use his wheelchair the majority of the time if areas were truly wheelchair-friendly, but runs into technically wheelchair-friendly situations like this far too often.

Many non-disabled people are familiar with the Americans with Disabilities Act, a civil rights law that prohibits discrimination against disabled people in “public life,” which turned 30 this year. The law extends to include all public and private places open to the general public and is aimed specifically to ensure that disabled people have the same rights and opportunities as everyone else. It’s the law non-disabled people usually reference when disabled people talk about issues like inaccessible bathrooms, building entrances, and subways operating under the assumption that since the ADA is nearly 30 years old, everything’s been fixed. But that’s rarely the case.

Take Cobalt’s issues with toilet stalls, for example. Bathrooms that are technically ADA compliant can be easily evaluated using a tape measure. There is a dizzying array of rules that builders must adhere to in order to maintain compliance. Guidelines include specific measurements for sink height and placement in reference to the door; height and placement of the toilet within a stall (with special focus on clearance for a wheelchair to turn around); height and placement of urinals, faucet, flush valves, grab bars, soap dispensers, etc. The list covers basically every piece of hardware you can install in a bathroom, but doesn’t account for variables like how your disability affects your body, what kind of accessibility device you have, or even your body type. A skinny disabled person person using crutches is going to have completely different needs in an accessible bathroom than a fat disabled person using a scooter.

Cobalt also knows what it means when a “technically accessible” bathroom affects more than just using the restroom. Besides being concerned about the theft of his valuables (not just everything on the wheelchair but the wheelchair itself), navigating the restroom as a trans person is a balancing act between terror and necessity. Transgender people are systematically denied bathroom access. In bathroom spaces, they face a higher risk of verbal harassment, physical attacks, and sexual assault.

“Leaving a stall door open as a trans man is simply not an option,” Cobalt said. “I do not particularly care to make my transgender status extremely visually obvious, particularly in a men’s room where safety against bullying, harassment, and even hate crimes must be considered.”

Bathroom access seems basic, but only if you never have to navigate the issues that arise from a space built for everyone else’s body but yours. Bathrooms are universal, and their existence should inform how society addresses civic and commercial design. Instead, widespread inaccessibility happens nearly everywhere.

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In New York City, where Gizmodo has its headquarters, less than a quarter of the city’s 472 subway stations have an elevator, and according to one study, the average subway elevator breaks down 53 times a year. (Watch Zach Anner, an actor and writer with cerebral palsy, try to get a rainbow bagel in NYC to see this illustrated in painful reality.) In the beating heart of modernity that is NYC, trying to get to a technically accessible bathroom without using an elevator is nearly impossible.

I know this first hand because I am also disabled. I also have a genetic disorder called hypermobile Ehlers-Danlos Syndrome, which turns the collagen in my body into a cloud of cotton candy forgotten in a rainstorm. Collagen is in everything: It’s the building blocks of the body and the mortar between those bricks. The genetic misfire within my DNA causes a myriad of complicated symptoms, but the most common is the random, daily dislocation of my joints. Sneezing sends my ribs out. Sweeping with a broom dislocates my shoulder. Sometimes just the act of sleeping for too long means I wake up with my pelvis shattered like the ruins of a secret Coliseum. I am an ambulatory wheelchair user, which means I use a wheelchair part-time but can also still walk. I’ve lived on both coasts and visited New York City, but if you’re disabled, it doesn’t really matter where you go. The reality is that inaccessibility is the norm, not the exception to the rule.

New York nightmare

io9 Deputy Editor Jill Pantozzi, 37, has muscular dystrophy and also uses an accessibility device to get around—namely, a motorized scooter.

The scooter is a normal part of her life as a disabled person. She started using it in 1997, when she was a high schooler. It works better for her than the manual wheelchair she used to use, especially as her disease progressed and her muscle strength decreased. The scooter’s seat also helped, as it turns side to side and backward for easy access, while the tiller up front that can be used for extra balance.

“I would never be able to leave the house if I didn’t have the scooter,” she said. “I am still slightly ambulatory [without it], but I need it to get around.”

Pantozzi grew up in New Jersey and said she always wanted to live in New York City. She thought it would be impossible because of the inaccessibility. “I’ve been in the NBC Building in Rockefeller Square for media meetings … you’ve got the elevators, great, but there’s isn’t even an ADA bathroom stall [in all of the offices]. It’s just mind-boggling.”

Unfortunately, Pantozzi ran into inaccessibility at her own place of employment this past year, too. In 2019, after being purchased by a private equity firm, G/O Media moved the offices to what used to be known as the Bertelsmann Building, smack dab in Times Square. Before the move, in May 2019, Pantozzi visited the offices to ensure the restrooms were going to be fully accessible to her.

They were not.

“The stall itself, supposedly ADA accessible, was just big enough to drive straight in and close the door behind me,” Pantozzi said. “The stall had grab bars, but trying to turn around the scooter or complete any kind of movement was completely impossible.”

Pantozzi was told the inaccessible bathroom in the new office was technically ADA accessible, and altering it would require a discussion with building management, then a contractor, then, later, an architect. Until that conversation happened, Pantozzi would only be able to use the bathroom during her workday if she agreed to use the larger accessible stalls down on the tenth floor.

“I would have to go from [floor] 27 and 28 down to the lobby, then onto another elevator bank, then up to the 10th floor,” Pantozzi said. The four single-stall bathrooms she was being directed to use had the accessible symbol plastered on their doors, but only two of them were big enough for her scooter—the other two were not wide enough to even enter. On average, it took Pantozzi nearly 15 minutes to get down to those bathrooms; longer if it was during lunch or the end of the day. “It felt unreasonable to ask me to do that a couple of times a day.”

Ultimately, Pantozzi decided to work from home until the issues were fixed instead of grappling with the complications of inaccessibility interrupting her work. “I don’t think a lot of people realize how staggering a situation like that can be when you try to live your regular, everyday life,” Pantozzi said. She worried about having to time bathroom breaks properly, about leaving during important moments of work for chunks at a time, or not leaving and grappling with the real possibility of health implications as a result, like bladder infections.

Pantozzi’s new desk sat empty for months. She said that working from home is a privilege she knows not everyone has, but that doing so also had repercussions. “I start feeling like a hermit. It makes you feel like you’re not part of the team, not part of the atmosphere,” she said. After four months and Pantozzi’s appearance at an all-hands meeting where the issue was brought up, the company stated it would get the ball rolling, but still, the issue languished in a seemingly purgatorial space of bureaucratic inaction, unanswered emails requesting a construction timeline, and contradictory information.

In late August of 2019, HR informed Pantozzi that construction on the bathroom had been approved but a timeline for the work had not. In the beginning of October, an email CC’d to the entire New York staff announced the start of construction. Pantozzi said, “Around that time, I started thinking this is probably not going to be done until the new year.” Later that month, the stall was finally completed but there was now no door, not until November, six months since it all began.

When reached for statement, G/O Media provided this comment: “It’s disappointing that ADA laws are static and do not consider the many variables and real-life situations that impact Americans with disabilities. While the G/O Media bathrooms were already compliant with all ADA requirements, in this example, the company took the position that one employee’s discomfort should hold the same weight as ten. We were happy to accommodate this employee’s request, and did so as promptly as possible in line with commercial building regulations. We appreciate her understanding around elements outside of our control, and hope her monthly visits to the building are without barriers.”

To unpack, it is not certain whether the bathroom was already compliant with ADA requirements, as those require the toilet height to be 17 to 19 inches from the floor to the top of the toilet seat; the 28th floor bathroom toilet was about 20 inches high, never mind the “required clearance” that “provides space for approach and transfer to water closets” (according sections §213.3.2 and §604, and as evidenced in photographs above). On background, G/O Media spokesperson pointed to the building’s union requirements as a barrier to construction and emphasized that the company was able to finish construction within two months of the building’s greenlight (though the company was aware of the issue for four months prior).

G/O Media’s repeated mentions of “monthly visits” in the statement and on background are strange, as Pantozzi was quick to note that once the office was open for work, the single reason her visits to the office were limited was because the bathrooms were inaccessible. Once the construction was finally complete in late October, she resumed her once-a-week in-office attendance—a similar schedule she’d maintained prior to the company’s move. Gizmodo has verified this schedule using travel receipts provided by Pantozzi.

Pantozzi said that the main emotion she felt when she was finally able to go into the office for work was anxiety. “Everybody knew why I was there, which was kind of funny. Everybody was like, ‘Are you excited to use the bathroom today?’” she said. “It was good they were making light of it that way because it relaxed me a little bit, that yes, this has been such a ridiculous situation, you almost have to be excited to use the toilet!” She said she did celebration spins around the stall because it was so big.

Pantozzi knows that these types of experiences are something most nondisabled people don’t have to think about, despite their incredible importance to everyday, basic life needs.

“Having the simplest things like that, that you take for granted, exacerbated in such a way is really degrading. If you can even just understand a tiny sliver of what some [disabled] folks go through every day, then maybe you will be able to help others in the future,” she said.

She pauses for a moment when I asked her to reflect on this experience, one that’s affected her life so drastically for such a prolonged period of time. “I wish that I hadn’t had to fight so much, I guess that’s the bottom line,” Pantozzi said. “It’s something that should have been standard already. Having to use so much of my emotional and physical energy just seems completely wild to me. It’s not something that most people will ever have to deal with or think about. The amount of hours, days, weeks I’ve spent dwelling on this and having to take action is just outrageous.” She encourages other disabled people to speak up as soon as they can in situations of inaccessibility. She recognizes that having to share something so personal with the world isn’t ideal. “Unfortunately, that’s kind of what you have to do to get others to not just understand, but care.”

The law

Matthew Dietz is the litigation director of the Disability Independence Group, Inc, a nonprofit disability rights legal advocacy center based in Miami, Florida. A group of advocates formed DIG in 2002 out of frustration with the reality that disabled people lacked adequate representation in the legal profession, leading to suboptimal legal results due to lawyers, judges, and juries who couldn’t relate to disability discrimination. “In other words,” their website reads, “if you do not know, work with, or are friends with a person with a disability, then you could not deliver justice.”

DIG worked with the Florida Bar to create a disability initiative identifying disability as an essential element of inclusion and diversity, focusing on “removing attitudinal, communication, and architectural barriers to the legal profession, and drafting rules to ensure accommodations for all persons with disabilities to access the Florida court system.”

Dietz is passionate about what he does; even his business card is stamped in braille. Ensuring accessibility is not just a passive core tenet of his moral code; it’s a right he’s gone to bat for over and over again throughout the years.

At the Wilkie D. Ferguson, Jr. Federal Courthouse, I asked him what disabled people should do in a situation where the owners of the building don’t want to work with you, your management doesn’t want to work with you, and HR doesn’t want to work with you.

“HR doesn’t really have a choice.” He shrugged. “But most people don’t know how to complain.”

Matthew Cortland, a disability rights lawyer and writer based in Massachusetts and active within the disability justice community also noted in an interview that the ADA exists in a form where disabled people must pursue justice and accessibility themselves. Dietz wants disabled people to know how to do exactly that.

“Most of the calls I get are people who want to automatically file a suit,” Dietz said. “They have to go through the steps. … If they can’t get anywhere with HR, they have to file a formal complaint with the employer. … So let’s say you requested the accommodation, they said no, then what you would do is you would file a complaint to say, ‘This doesn’t work for me.’ The problem that you have is, the onus really falls on the disabled person. … So many people don’t understand the fact that they have to jump through the hoops with the person who denied them in the first place.”

I ask if the ADA should exist in a way where we have to do the work to ensure we can exist in a primarily inaccessible world.

“The answer is yes,” he said. “The disabled person knows more about what they need than the employer.” Dietz said that after the employee has made an official request for an accommodation, the employer has the right for an additional investigation into the request.

“The ADA does not pertain to federal buildings at all,” said Dietz. “The Architectural Barriers Act does.” The ABA, enacted in 1968, stands as the first measure by Congress to ensure disabled people had access to the built environment. Deitz gestured around the uniquely accessible courtroom constructed in 2007 where we were standing. He pointed to the place where spectators could sit and watch proceedings—known as the Gallery—which has an empty space at the end of each row for a wheelchair user, instead of relegating all of us to the back row in the normal move for “technical” accessibility. (The swinging gate one must pass through to approach the bench, however, remains heavy and inaccessible.) The lectern moves up and down on a switch, the jury box has spaces for a wheelchair user, and each juror has a screen, too. Even the witness stand allows for a wheelchair user to approach.

Senior Judge Paul Huck, who presides over the courtroom, came out to talk, down a short set of stairs leading up to the door of his chambers. I asked whether that access route could also be made accessible, and Dietz and the aide both laughed.

“For a judge, they’d make accessibility happen!” Federal judges, the number of whom is constantly in flux, serve for life. A 2019 article by the Center for American Progress notes that the authors were unable to locate any publicly available data on the number of sitting federal judges with disabilities. Similarly, disabled people are severely underrepresented in elected office, like Congress or the U.S. House of Representatives. Without disabled people in the Legislative and Judicial Branches, creating and enforcing the laws that affect our everyday lives, is it any wonder that the world remains as blatantly inaccessible as it is?

Even spaces that seem functional for one type of disability, like wheelchairs or scooters, may remain inaccessible for other types of disabilities, like d/Deaf or hard of hearing people. For example, determining the placement of Sign Language interpreters may change the way witnesses interact with all aspects of the courtroom while court is in session. Dietz has had cases where clients couldn’t see the interpreters, or where he objected with the interpreter’s interpretation. “These are all the [inaccessible] things that happen when you don’t have people with disabilities in the system.”

Dietz is a whirlwind as he talks, explaining that the court has three ADA coordinators who have been “phenomenal,” especially when compared to the state court. But he’s thoughtful about disabled people being involved themselves versus being represented by nondisabled people.

“There needs to be more pro se people, doing it themselves. More self-advocacy in this forum, because that’s how things get done. But now with the electronics, it makes things so much easier. There are so many blind attorneys that are able to do this on their own, it’s fantastic!”

After we finished touring Judge Huck’s courtroom, we sat back down to finish talking and have lunch. I asked him what got him started in accessibility work and he laughed, crossing his legs to reveal colorful socks climbing up his ankles, hidden behind the plain cut of his respectable suit. “I’m a masochist!”

We started to talk about misconceptions about the ADA, like a 2016 Anderson Cooper reportabout “drive-by ADA lawsuits,” intimating that some lawsuits filed to ensure accessibility in businesses are flagrantly frivolous. The disability community was rightfully incensed by the biased reporting.

“Title III of the ADA doesn’t have a damage provision,” said Dietz. “So you have to have an attorney [file the suit] and the only relief you’re going to get is you’re going to get the [inaccessible] premises fixed… There’s no other damages.” He said that this varies from state to state. There is no recompense for the hours and hours of time disabled people need to spend on their own fighting for accessibility, time that takes away from living, like work, relationships, and managing healthcare.

Dietz frames the process of investigating potential accommodations as a process of self-exploration, sifting through the experiences of other disabled people and settling on a solution that works for your specific disability. “Usually you’re not the first, you’re not the only, and other people have done things similar that may or may not have worked. The problem (and where the stereotypes come in) is when folks without disabilities pretend to understand what people with disabilities need or what would be good for them.”

I told Dietz about my own experiences with trying to pursue accessibility in inaccessible or “technically” accessible spaces, especially in situations where nondisabled people view my request for change as asking for special privileges instead of a desire for equity. What happens when employers fall back on the “undue hardship” argument, I asked—when they say that providing an accommodation would incur significant difficulty or expense?

“When you look at undue burden, you look at the effects the accommodation would have on the overall scope of the entire business… Look at the size of the facility. When I’m dealing with deaf clients, interpreters are always one of the most expensive accommodations for a one-off issue. I tell my deaf clients, ‘Go to a big practice that’s associated with a hospital, or in a hospital building.’ Because they could never make the argument that it would be an undue burden. Undue burden deals with costs and looking at the overall financial resources. For a small business, it’s a different calculation than it is for a large corporation.”

The big question I wanted Dietz to tackle is how we talk people into viewing accessibility as the name of the game, something businesses think about from the beginning instead of tacking it on as an after-the-fact. “We’ve been focusing so much on the physical accessibility, we haven’t been focusing that much on the policies,” he said. “And that’s what’s going to create the equal society we’re looking for.” Changing hearts and minds is about removing attitudinal barriers regarding disability, not necessarily about enforcing code down to the nearest millimeter.

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Unfortunately, even code enforcement and determining reasonable timeliness for completing adjustments to ensure accessibility is difficult due to a lack of clarity. The consequences of inaccessibility for proprietors or owners of inaccessible buildings can be expensive, but the enforcement guidelines are often worded vaguely or vary from agency to agency and county to county. Responsibility of enforcement relies on a system that is flawed due to its lack of clarity, which means it’s not always immediately obvious to a disabled person trying to diplomatically obtain bathroom access with their employer without immediately jumping to file a lawsuit.

Aside from the difficulties of enforcing the ADA, there are more complex issues with fighting for basic access through an obfuscating system. When asked about availability of information on companies making their spaces actually accessible versus technically accessible and related lawsuits, Matthew Dietz responded, “[You’re] not going to find any statistics on anything like that. Since the beginning of the ADA, there has been a tension between what is readily achievable, and other methods to make goods or services accessible.” Companies and agencies are willing to do the bare legal minimum, but don’t tend to dwell on details such as whether the bare legal minimum is actually accessible to the disabled population, and not just perhaps passable on paper. Dietz cited the example of voting by mail in Florida, where polling station supervisors were pushing back against implementing a vote by mail option, arguing that they already had accessible voting machines on site and disregarding the fact that travelling to use those accessible voting machines is an unreasonable and sometimes impossible barrier for disabled voters.

Fall risk

Imani Barbarin, a 29-year-old communications and outreach director for a disability rights organization based in Pennsylvania, understands just how difficult it is to get non-disabled people to care about the challenges of accessibility. Barbarin is also the creator, writer, and star of a new series called Fall Risk. Barbarin, who has cerebral palsy, walks with crutches, but also uses a walker and occasionally a scooter.

“I feel like every disabled person has had times when they’re trying to explain that just because it’s ‘technically accessible’ does not mean it’s accessible to everyone.” Barbarin has more than her fair share of stories about technically accessible bathrooms—and offices, and restaurants, and college accessibility offices, and…

Barbarin also notes that the “technically accessible” bathroom issue brings up other concerns, depending on what kind of intersectional marginalizations you have on top of being disabled. She’s a Black woman, and notes that this plays into her experience of accessibility. She mentions that growing up, her mom would drill into her that being a woman of color meant she’d have to approach work differently than a white person to get ahead in a society built upon systemic racism.

Barbarin has dealt with more than her fair share of racist stereotypes, especially those that paint people of color as lazy and always trying to get off the clock as soon as possible. The idea of having to transit at least 15 minutes to get to a “technically accessible” bathroom practically makes her shudder. “As a Black woman, it becomes very scary. We’re told we have to work twice as hard to get half as far, and when inaccessibility comes into play, we get even more terrified. We feel like people are going to dispose of us in our organization because we aren’t there,” she said.

She also noted that a “technically accessible” bathroom—read: inaccessible in practice—prevents disabled people from more than just work. It also stops the process of affecting true change and making our physical spaces more accessible. “Representation through action matters. Only collectively do we have the power to make a difference. We have to be in spaces that are accommodating to us, otherwise we aren’t going to be in the door. A lot of people think just inviting us is enough.” Barbarin worries that getting things done often requires in-person pressure that nondisabled people don’t often feel from the disability community.

“I think [nondisabled people] view us as alarmist, that any kind of protest on our part is seen as unnecessary, that we’re making things up,” said Barbarin. In practice, it’s not just people who are born with their disabilities who need accessibility that’s promised by laws like the ADA. “In reality, we have the largest population of people that are aging into disability rapidly. The things we’ve been begging for, people are going to need on a day-to-day basis.”

When it comes to designing spaces, Dodd Kattman and Zach Benedict, both Principles with MKM architecture + design, based out of Fort Wayne, Indiana, understand that gap of “technically accessible” all too well. But they say it doesn’t have to exist.

“Sounds like you’re dealing in that grey, murky world that exists between code compliance and human dignity,” said Dodd. “That building is ADA compliant, [Pantozzi] can go find access to a bathroom, but damnit if that’s not a lonely elevator ride down to that bathroom… Technically their building meets accessibility codes… But [it] failed on every other level.”

Benedict and Dodd have been trying for a long time to put that thought into action. Working on a rehabilitation facility in Grand Rapids, Michigan, they found that the standard grab-bars—the metal bars in restroom stalls intended to make transfer from wheelchairs to toilets easier —weren’t working for patients healing from car accidents, head wounds, or strokes. Following code and ensuring the rehab facility was ADA compliant would have put them in step with the law, but out of touch with reality. So they consulted with the facility’s staff to design grab-bars that were lower, closer together, and on both sides of the toilet. Their new design was approved by Michigan’s Barrier Free Design Board and enacted.

“When the ADA was introduced it didn’t consider people with a wide range of disabilities,” said Benedict. The bill was sponsored in large part by wheelchair-using Vietnam Vets who had significant upper body strength (and the ability to use those grab bars to transfer from wheelchair over to the commode). While many disabled people don’t benefit from the installation of grab bars, they’re ubiquitous across public bathrooms; alternatively, accessibility options that may be more useful to the rest of the disabled populace still haven’t been made a permanent part of required code.

To combat this “technical accessibility,” MKM has been working to design buildings that have several unisex bathrooms that are single occupancy, can be used by any gender, and provide privacy and dignity in use. This design gives room for assistance if necessary; room for a scooter or wheelchair to maneuver, space to transfer… the works.

“Being a wheelchair user, you don’t want to be pandered to,” said Dodd. “You need an environment that is supportive of you and celebrates you and everybody.” Dodd and Benedict are quick to note that this thought-process, of working outside of the confines of the ADA and within the reality of existing as not just as a disabled person but as a person, doesn’t have to apply solely to bathrooms.

Benedict thinks that the architectural world has had a “decades-long disinterest” in sociology and its impact on community, describing a brick-and-mortar, Frank Lloyd Wrightian “get what you deserve” objective, one that leaves people isolated both from their environment and the other people around them.

“We’re social animals. A school of fish is no different than a group of people. If you find yourself in an environment that disallows engagement, it goes south on you. We’re all one life event away from being a prisoner in our own homes.” Benedict believes that pride is part of what stands in the way of having serious, honest discussions about such a complicated set of issues.

Given that 67% of people are uncomfortable talking with a disabled person, is it surprising that talking about disability is similarly difficult? “How the built environment imposes a quality of life on its users… is not an easy [discussion] to facilitate,” Benedict said.

Trapped but not helpless

Rosemarie Rossetti is one of those people who underwent a life event that left her trapped in her own house. In June, 1998, she was out riding her bicycle when a 3.5 ton tree came crashing down on her, leaving her paralyzed from the waist down.

“It’s a matter of frustration when you come home from the hospital for the first time in a wheelchair and you realize that home isn’t going to work. [I had] limited access to rooms, carpet was too thick [to wheel over], [my husband] Mark had to push me around, furniture had to be moved around. My independence was lost. I always had to have help in the beginning. I couldn’t even get a glass of water.”

“It’s a traumatic experience to be sitting in your own home and relegated to only one room where there’s linoleum. It’s totally depressing! It was absolutely a dark time in my life, here I am, in pain all the time, I can’t sleep, we rented a hospital bed that I’m sleeping in and I can’t get in and out of the bed,” she said.

Rossetti had a PhD, a career, owned two businesses, and had just celebrated her third wedding anniversary, but was ostensibly trapped in her inaccessible home as a result of her new disability. So she and Mark decided to move. Looking at model homes, they realized that nothing met the parameters of what they were searching for, so in 2006, they found a for sale by owner lot and hired an architect to go to town. A group of professional speakers, trainers, and writers gave them the idea to build a fully-accessible home and invite companies to donate their time, products, and resources into the project. They resolved to make it a national demonstration home that could serve the wider mission of informing others about accessibility, and thus The Universal Design Living Laboratory (UDLL) was born.

It took 32 months of construction, another two years to finish the landscape, over 200 corporate sponsors, and hundreds of volunteers, but Rossetti and her husband, Mark Leder, moved into the UDLL in mid-2012. Their home is also open to visitors by appointment. An extensive array of accessibility features was incorporated into the construction, which cost an undisclosed sum. Though people don’t need to incorporate every feature in their own home, the cost of a customized house remains out of reach for many disabled people, especially since disability and poverty go hand in hand—the poverty rate for working-age disabled people is nearly two and a half times higher than nondisabled people.

“This house is a game-changer,” said Rossetti. “That’s why we built it. To give hope to those whose lives have been affected by some disease, by some injury, as they age and realize they can’t do what they used to do. So can we create an environment that makes lives easier? Yes, we can.”

She and Mark served as general contractors and undertook the process of learning about accessible products during the construction process, traveling to places like the International Builders Show in Orlando so she could select items such as accessible kitchen appliances. “The [accessible] appliances all existed,” she said. “I didn’t know about them until I went [to the shows.]”

The kitchen—her favorite room in the UDLL—has a lowered convection oven-slash-microwave that’s hinged on the side for easy access, and a faucet for filling pots right at the stovetop. “With a name like Rosemarie Rossetti, would you not be expecting me to be cooking spaghetti?” she teases as she points out its features over a virtual tour (which can’t currently be accessed). The stovetop has front-mounted controls and she can also drain the pasta right there without having to move scalding hot water to a separate sink. The wall cabinets and counters are lowered; so are all the shelving, which she wanted to be at least 50 percent reachable from a seated position. Even the light switches are installed lower for easy access, while electrical outlets and the dishwasher have been moved up to be more easily reached. The upper and lower levels of the house are accessible by elevator; the entrance is step-free with a gradual grade and no conspicuous ramps. With 36” wide doorways and 46” wide hallways, there’s plenty of room for wheelchairs or walkers. The shower can be rolled into and the shower head, which is hand-held, is mounted on a slide bar.

Rossetti’s home, which spans 3,500 square feet on the main floor, 3,500 on the lower level, and even has a garden with universal design features, like sidewalks wide enough for a wheelchair, is definitely a luxury home, but she’s quick to point out that accessibility doesn’t—and shouldn’t—be thought of solely as a luxury.

“People look at [the UDLL] and think, ‘Oh, it’s going to cost a lot of money and take up an even bigger space!’ No! I’m working with Habitat for Humanity on their National Accessibility taskforce and we’re creating new construction standards for Habitat internationally. We have decided they need to put these features in all homes, not just a few for the families that have a visible disability. Do it for everyone. It can happen in a smaller home and on a lower budget!”

Rossetti is adamant that true accessibility, not just “technical accessibility,” is a necessity for all. After all, not everyone has a 7,000 pound tree fall on them while out for a casual bike ride—or is born with a degenerative disease, like me. But everyone eventually ages, and on a long enough timeline the major symptom of getting older is some kind of disability: changes in vision, mobility, hearing. These changes happen gradually.

Rossetti thinks a major part of the solution is focusing on accessible building codes as the norm instead of as outliers. Since building codes aren’t doing the job and the marketplace lacks the pressure to force accessibility, she suggests encouragement in the form of incentivization like tax advantages to get builders to do what’s needed.

Matthew Cortland is all-too-familiar with the idea that money—especially not having to spend it—often takes priority over actually enforcing civil rights provided by law.

“Those responsible for complying with the ADA often put extracting every possible cent from the labor of their employees and the pocketbooks of their customers above complying with civil rights laws like the ADA. They’ll refuse to take entirely reasonable measures to make restrooms accessible, like properly installing grab bars or safe stall doors, because they care more about getting that extra little bit of money into their pockets than they care about people.” He recognizes the often cyclic nature of the blame game perpetuated by those in charge of ensuring a business is accessible. “If an employer doesn’t own the facility they’re operating in, they’ll blame building management. Building management often doesn’t actually own the building, so they, in turn, will blame the landlord. And the landlord may blame the tenant, insisting it’s the company’s responsibility to ensure ADA compliance.”

Cortland lives with Crohn’s disease, a kind of inflammatory bowel disease (IBD). IBD affects about 3 million adults in the U.S. and is estimated to affect about 15 percent of the general population.

Cortland believes in stronger disability discrimination laws and better enforcement, and is increasingly convinced unions are potentially one of the best responses to disability discrimination perpetrated by employers (so long as employees are prepared to explain the issue to those unfamiliar with the ADA). He was careful to note that the ADA’s design relies on private individuals filing suit to ensure the law is enforced. “One option disabled people have is to do just that—sue. Depending on the precise circumstances, there are federal, state, or local regulators that may be interested. In those jurisdictions in which code incorporates access standards, an often overlooked strategy is contacting the local code enforcement authorities. Many states also have authorities charged with enforcing state disability civil rights laws.”

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According to the Occupational Safety and Health Administration (OSHA)—an agency under the U.S. Department of Labor established in 1970 to assure safe working conditions by setting and enforcing standards across the nation—all employees (disabled and nondisabled) must have “prompt access to bathroom facilities.” If an employer sets restrictions on bathroom access, such as locking the doors and requiring employees to ask and sign out a key, they must be “reasonable” and may not cause extended delays, though they do not explicitly define these time periods in days or months. In order to enforce OSHA standards, Compliance Safety and Health Officers conduct inspections without advance notice, though inspections can also be specifically triggered (by a workplace fatality or a work complaint, for example.) If an inspector finds a violation, OSHA may issue citations which include a deadline for when correction must be completed. Fines can also be levied, and range from $13,494 for serious violations to $134,937 for willful or repeated violations. States that operate their own Occupational Safety and Health Plans are required to adopt maximum penalty levels that are at least as effective as Federal OSHA’s. OSHA also maintains Recordkeeping Requirements, which must be maintained for at least five years. A summary of the previous year’s records must be posted annually.

Given that our government already has the framework in place for this structure, it’s not out of line to expect that enforcing the ADA could and should follow suit. Disabled people should have prompt access to bathroom facilities the same way that nondisabled people do. As such, why not employ disabled people to act as inspectors for ADA accessibility (and put a dent in the statistics that tie disability and unemployment so closely together)? Regular inspections should be part and parcel of defining yourself as an accessible public space. Citations that actually have teeth in the form of fines would force real change, and public recordkeeping requirements would allow disabled people to choose when and where to spend our money (especially since the disabled community is the third-largest in the world in terms of purchasing power.)

Instead, legislation known as the ADA Education and Reform Act keeps making its way through Congress, attempting to make it more difficult and costly for plaintiffs to sue businesses that don’t comply with the ADA. H.R. 620, as it was known when it passed the House in early February 2018, would require someone to file a “written, technical notice” if a building wasn’t following ADA rules, wait 60 days for a response, then wait an additional 120 days to see if progress has been made before the issue could be brought before the court. The burden of compliance falls on the disabled person, requiring us to spend months advocating for change at a business level. If we’re going to do that kind of work, we might as well get paid for it as inspectors.

Senator Tammy Duckworth, a Democrat from Illinois and staunch disability justice advocate after losing both of her legs and mobility in her right arm when her helicopter was hit by a rocket-propelled grenade during the Iraq War, has spent much of her time as a politician fighting against attempts to strip the ADA. “…Businesses have had almost three decades to make their facilities fully accessible for all,” Duckworth said in an interview.

Recourse

“You don’t need a guy like me filing a suit for you. You could make a complaint to an ADA admin, you could make a complaint to a city, you could follow up on a complaint,” said Matthew Dietz. He’s big on what he calls “real” action, and feels like complaints enacted only via social media are more about making you feel good and about your friends looking at it than enacting actual change.

In Dietz’s experience, age makes a massive difference in how people advocate for their own rights. He finds that when older people—from their 40s on—run into inaccessibility, they’re more likely to explain what they need and thank people for eventually following through, whereas younger people have an expectation that businesses or employers should already know about their civil rights, given that the ADA has been around for three decades (He also says that younger people are more likely to be angry when those rights are violated.) “It’s a huge difference in approach,” he said.

Dietz acknowledges that the legal system is still operating on a delay. “The legal system is still under the expectation that you’re supposed to ask. You’re supposed to wait, and they’re supposed to be reasonable. It’s a difficult situation.” He also recognizes that the venn diagram of intersecting identities, such as race, gender, sexuality, and socioeconomic status, affect people’s experiences within the system. “But you go to a 78-year-old judge and you don’t treat the 78-year-old judge with respect…” The implication—that you’re out of luck and you won’t accomplish anything without playing the game—is clear. But we both know that game is rigged.

“It’s impossible to play the game,” he said. “That’s part of the system that we have, that’s built under the past 200 years of looking at things through an ableist lens. There’s no way this is going to change when you’re still dealing with folks in society that are mostly able-bodied.”

The reality is that the onus of accessibility rests on the shoulders of disabled people, and ultimately, nothing about that is going to change any time soon. The most important focus of any “solution” is involving disabled people. Disabled people should be creating standards for accessible design, and, if possible, they should also be part of enacting those standards. Disabled people should be the ones deciding whether a space is actually accessible, with workplaces and HR departments prioritizing our lived experience. Disabled people should be able to report inaccessible experiences with the expectation of things being fixed without pushback or the assertion that “it’ll happen, eventually.” Disabled people should be given agency in recognizing our needs and bringing those needs to fruition wherever they’re needed.

And, of course—though perhaps this is the millennial in me—we have to reckon with how and when we, as a society, decide that a law like the ADA has been around for long enough that asking nicely for our rights shouldn’t be a necessity to move through the system successfully.

Maybe the answer to that question loops back around to the courtroom itself, and how long it takes until the person behind the desk is a judge in a wheelchair, who rolled up there using a ramp that had been installed when the building was first constructed.

Note: Ace uses identity first language (“disabled person”) as a default unless they’ve been asked by a source to use person-first language or quoting a source using person-first language (“person with a disability”).

Ace Tilton Ratcliff lives and works in south Florida. They’re a freelance writer, artist, and disability consultant at Stay Weird, Be Kind Studios. They have bylines at places like PopSci, io9, Huffington Post, Fireside Fiction, and more. They live with hypermobile Ehlers-Danlos Syndrome. When not creating, they’re often tweeting @mortuaryreport.

Correction 10/28/2020 12:14 p.m. ET: An earlier version of this posted misstated Pantozzi came into the office twice a week. Due to a combination of weather and health factors, Pantozzi came in on average once a week.

Update 11/17/2020 11:44 a.m. ET: We’ve updated the copy to reflect Rossetti’s dispute of the cost of the house.