By Jeremy Einbinder
Being disabled can be debilitating for all kinds of reasons. You may be unable to perform tasks or develop skills in the same way as your peers. You may be prevented from living in certain places because they are not physically accessible. Overall, you may just be prevented from having many experiences that make up core memories for your able-bodied peers. You may be barred from public event spaces. One of the many ways people commonly experience joy in life is to go to a sporting event, a concert, or some other kind of live performance. Unfortunately, the ability of wheelchair users and other disabled people to get the opportunity to do that sometimes gets impeded due to circumstances beyond their control.
What changed most about the lives of the general population who were lucky enough not to get sick at the height of the pandemic? It was an inability to “go out” and “do stuff.” An inability to socialize anywhere other than one’s home, an inability to associate any strong memories one might have had with a particular place, or any kind of experience. Imagine if you are chronically ill or disabled, and that reality is often the case for you even before COVID. The spirit of the Americans with Disabilities Act is such that people with disabilities ought to be allowed to enjoy just as many aspects of life as their able-bodied, neurotypical counterparts. Disabled Parking, a website which details the process for disabled people to receive parking permits, summarized it thusly on one of their blogs:
“Access to public spaces is a fundamental right of all people in America. The nation’s public spaces are for everybody to utilize and enjoy. A disability should never prevent a person from being able to access any public space that they desire to visit.”
A nationwide disability access infrastructure is in place to ensure that people with disabilities are able to access any and all public spaces they require. This disability access infrastructure is regulated by federal and state laws.
The government website for the Americans with Disabilities Act details further the requirements needed for public spaces.
“The Americans with Disabilities Act (ADA) requires new stadiums to be accessible to
people with disabilities so they, their families, and friends can enjoy equal access to
entertainment, recreation, and leisure.” Clearly there remains a lot to be desired. In addition to the fact that older buildings are not subject to enforcement of these policies, a business can declare that making a building accessible would cause an “undue burden” and there are plenty of times when they can simply ignore the law because people often do not have the means to contest them. Some have been relatively lucky, but it’s important to note that there’s a long way to go.
Reported by various news outlets, “A group of baseball fans who all use wheelchairs for mobility brought the federal lawsuit against the owners and operators of T-Mobile Park [in Seattle], alleging that the stadium failed to comply with multiple requirements of the ADA.”
Included in the suit was the plaintiffs’ claim that the sightlines of spectators using wheelchairs were almost always more obstructed versus those of spectators who were not using wheelchairs.
The report continues,
“Everyone deserves an accessible and inclusive experience and baseball fans with disabilities simply wish to have a comparable view of the game when they go out to enjoy America’s pastime,” Conrad Reynoldson, the plaintiffs’ attorney, told Courthouse News Service. “We are hopeful that this decision will lead to positive changes going forward.”
The fact that this is newsworthy seems to be an exception, not a norm. Given the general invisibility of people with disabilities in media and the public eye, and the fact that the law is now over 30 years-old, it’s clear that more consultation from disabled people of all stripes is needed to periodically and regularly update public policy. In fact, the venture of making places of public accommodation accessible to all must be a massive public project that uses as many resources as it takes without any concern of cutting into profits. There are so many times in which buildings and venues are technically compliant but remain inaccessible for many, and there are also times when compliance with the ADA is simply overlooked. This cannot stand. Access rights remain at stake.
I’ve long said that the word “disabled” is not an adjective, but a past tense verb. I am “disabled” often because the environment I’m surrounded by, rather than because of any defect of my brain. In the disability community, there is a tendency to separate terms such as “difference,” “disability” and “impairment.” These are fluid terms that can overlap but they also can make an important point about where, precisely a disability comes from and what makes something a disability. The prevailing approach to disability in broader society is known as the medical model of disability, which essentially states that the cause of one’s disability is their differences or impairments in and of themselves, that it is their medical issues that “gives” them a disability. This reductionist view contrasts with the emerging social model of disability, which states essentially that differences and impairments are exasperated by inhospitable settings that essentially “disable” a person from reaching their full potential or being able to thrive. In such untenable settings, a difference or impairment may become a disability, but, under the social model, one’s medical condition is not itself the basis of disability. It is this approach that can actually be used to mitigate the ill effects of disability without dehumanizing or pathologizing disabled people. Unfortunately, governments, the “business community” and civic society as a whole, despite their posturing and the gains that have thus far been made, do not seem overly interested in our liberation.
I was born right after the passage of the Americans with Disabilities Act, and I’m grateful for the progress that’s been made. However, to be quite honest, a lot more needs to be done, and a lot of things that are purported to be solved are in fact not yet solved.
In terms of employment, accessibility is also a challenge. An office may not be accessible to me. The employer may, on the job application, ask if I am able to lift 25 pounds, even if it has nothing to do with the functions of the job itself. Ever since I graduated college, I have been largely relegated to remote work, which is incredibly isolating. It certainly would have helped if my peers were made aware from an early age that disabled people exist and are worthy of inclusion. Things as simple as parents and teachers having honest and frank discussions with their kids, and authentic media representation of disabled people by disabled creators would have gone a long way. Socialization is a vital part of emotional development. I could not toddle when I was a toddler. I could not run around and play when I was a child. I cannot reliably interact in person with coworkers. Living in a suburb, very few things are pedestrian-friendly. Ironically, one important accessibility characteristic for a wheelchair user is to live in a “walkable” neighborhood. There’s always a catch, though. Some of the most densely populated cities are not well-designed for wheelchair use. The curbs may be too steep. There may not be enough ramps everywhere. The problems of accessibility have been pressing for my entire life, and despite their intractability, these problems are solvable.
When I was growing up, it was a common experience for my family to call a restaurant and confirm whether it was accessible before making a reservation. On multiple occasions, we were simply told no. On other occasions, we were told that the entrance was accessible but the bathrooms were not. We were told they had booths but not tables. We were told that we would have to go through the kitchen to get to a suitable space. Perhaps most egregiously, we were told, “yeah, there’s only about three steps.” In all those cases, they could have said just no. But they are places of public accommodation. They’re not supposed to be able to say no. Same for office buildings. Same for any other retail establishment. A business might as well put up a sign that says “no wheelchairs allowed.” It has the same effect. Who could imagine the owners of a retail establishment struggling to enforce racial equity standards 30 years after the passage of the Civil Rights Act? But one crucial difference is that, much like the economic agenda of some prominent civil rights activists of the era, it would take massive reallocation of resources. That’s what we need. First, disabled people need to be consulted on a mass scale for any updates and alterations to accessibility accommodations on a regular basis, both in the US and internationally. A huge public project needs to be undertaken in as many communities as humanly possible to update any infrastructure which does not sufficiently incorporate the principles of universal design, which needs to be implanted for aspects of life such as technology, architecture, and city planning. There comes a point where the profits of the owners of capital clashes with the human rights of disabled people and the freedom of movement and access. Where they clash, the latter is obviously more important. The ability of people like me to enter a shop trumps the pride that an owner has in saying that their little shop hasn’t needed renovations since the 1940s.
Of course, wherever the ADA is currently being violated needs to be corrected as quickly as possible, and non-disabled people can certainly assist in that effort, but things need to go further. There are loopholes, like if a building exists before the passage of the Americans with Disabilities Act, or if it can be said that making a space accessible simply creates an “undue burden” on the business. It would cost too much money or it would take too much work and time. Sometimes, historical preservation is invoked.
The point is, no matter how much progress is said to have been made, how much the government and the “business community” are said to care about the plight of “the disabled,” they actually cannot and do not. It would upend the way society functions, a society which they control, and do not want to change. A society which places the supposed value of property over the needs and comforts of people, is a society which disables people like me. Making society accessible is a massive community project. We need to start.
The Covid-19 pandemic not only changed public health, but also how the economy functions. Many people lost their jobs, many people had to learn how to do their jobs during a major health crisis, and many people quit their jobs. But perhaps most transformative was a shift in how jobs that were able to remain active got done. Millions of people were forced by circumstance to work their jobs from home. While there is certainly a potential benefit, namely socialization, to work being conducted in person, there is no doubt that, at least for some workers, especially disabled ones, the mere option to work from home has been a blessing. With no time devoted to travel or commute, something that has held countless disabled people back from gainful employment, the work-from-home model has done wonders for leveling the playing field. It is not only comfortable for many workers but more productive as well. Unfortunately, this doesn’t mean that workers will be given the option to work from home, even if it can be done easily.
“Even among industries well-suited to online work, there is a range in who is allowed to work remotely or not. On one end of the spectrum are the finance and law sectors, whose workers have been less likely to work from home all along despite a high potential for their work to be done remotely. These industries are going back to the office sooner, and workers will be less likely than in other types of work to be allowed to complete their work remotely thanks to work cultures that prioritize in-person interactions, whether they’re necessary or not.”
It seems as though some companies have readily decided that there’s a strict “office culture” that employees must adhere to even if it has no bearing on the work that’s getting done. This makes very little sense, since these kinds of companies functioned just fine with work being done remotely when no other option was available. The truth is that if something is ever temporarily necessary due to an emergency, it is therefore necessarily always an option in perpetuity. Evidently, companies which have not offered the work from home option view the ego of management more valuable than the quality of work getting done.
Thankfully, some companies have taken the silver lining of the pandemic, introducing the work-from-home model and introducing workers to the option of working from home if they so choose. Both Twitter and Dropbox have instituted this policy. Vox reported a survey by the Boston Consulting Group, showing that 89% of employees want the option to work from home at least some of the time. That sort of sentiment has resulted in the threat that if that option is not presented to employees, they will quit rather than be forced to work in the office.
From Business Insider:
“Out of 1,000 US adults polled in May, 39% said they'd consider quitting if their bosses weren't flexible about them working from home. The Morning Consult survey was first reported by Bloomberg. The survey showed that 49% of the respondents who said they'd consider quitting were millennials and Gen Z — i.e., adults born after 1980.”
The Americans with Disabilities Act entitles disabled employees to reasonable accommodations that do not impose an undue hardship on their employers. Being allowed to work from home seems reasonable by any definition especially considering it improves the ability of workers with disabilities to be more productive and does not cost a company money. In fact, it’s possible that abruptly ordering employees back to work is grounds for a lawsuit. It is certainly not an undue burden to allow employees to work from home, given that, at the height of the pandemic, it would’ve possibly been an undue burden to require people to work in the office.
There are certain potential benefits, such as the aforementioned socialization, and rapport that people develop may working alongside other people, and there is no question that if people are able to come into work once the pandemic is over, they should feel free to. However, there is absolutely no reason that a company which had no choice but to work remotely over the course of the pandemic should impose its authority to force people to come into work every day when they can just as easily, if not more easily, get their work done from home. As people with disabilities saw more opportunities to work remotely, the fact that some struggled to get into “the office” every day prior to the pandemic became a non-issue to some employers. Some may have been able to showcase the full range of their abilities as a productive worker for the first time in their lives, and they should continue to have that freedom. To not allow this flexibility is a clear violation of disability rights.
There are numerous challenges that people with disabilities face, and some of the struggles are unique to disabilities people because they are invisible. Whereas visible disabilities, such as ones that require the use of adaptive mobility equipment, present their own set of struggles and often lead to exclusion, invisible disabilities are more complicated. Someone may be excluded from social and professional life for reasons that are not immediately apparent but nonetheless are just as oppressive and destructive as any other form of marginalization.
According to the Centers for Disease Control, in the U.S. 61 million adults live with a disability, and many of them have disabilities that are solely invisible. These conditions include, but are not limited to hearing or vision impairment, epilepsy, autism spectrum, chronic illness or mental health ailment, among other conditions.
There are lots of conditions that the public at large stigmatize. Such marginalization is extremely pervasive. According to research by Cornell University’s Employment and Disability Institute, the majority of disability job discrimination claims filed with the U.S. Equal Employment Opportunity Commission (EEOC) between 2005 and 2010 were associated with invisible disabilities.
This is a giant problem. As many of the issues set forth to be resolved by the Americans with Disabilities Act more than 30 years ago still have a way to go before anything resembling equality can be declared, invisible disabilities have somewhat fallen by the wayside.
However, the issue may come to a head from an unlikely source: news of the fight for pop singer Britney Spears’ social and financial independence, which has rallied the outcry, #FreeBritney.
Spears is currently under a conservatorship headed by her father, Jamie, which gives him control over her finances as well as many other everyday life decisions. Teen Vogue’s Haley Moss explains the concept more generally here:
Under conservatorship, disabled adults face restrictions on a wide variety of rights: Where they live, when and where they work, money management, and healthcare decisions. Conservatorships are often thought of as something that only happens to elderly people who can no longer care for themselves, people with terminal illnesses, or for people like me, who are diagnosed with autism or other intellectual and “Under conservatorship, disabled adults face restrictions on a wide variety of rights: Where they live, when and where they work, money management, and healthcare decisions. Conservatorships are often thought of as something that only happens to elderly people who can no longer care for themselves, people with terminal illnesses, or for people like me, who are diagnosed with autism or other intellectual and developmental disabilities."
In her observation, Moss signals the significance of this case for her personally.
Spears was first placed under conservatorship in 2008, when she had a highly publicized mental health breakdown which was signified in popular culture by her shaved head and for which she unfortunately received a barrage of derision and mockery.
We heard Spears’ testimony on June 23rd, that she was put on medications she didn't want to be on, was unable to marry her boyfriend, and wasn't allowed to remove her IUD when she wanted to get pregnant.
“All of this is horrifying,” Moss says, “but it also illustrates the lack of self-determination and agency disabled adults face under conservatorships, typically without the public batting an eye.”
She is absolutely correct that we as a society need to care about the general concept of oppression of disabled folks beyond the spectacle of celebrity. Poignantly, she observes,
There is no doubt Britney Spears did the right thing in receiving or seeking mental health treatment over a decade ago. But losing her civil rights didn’t have to happen, nor should it continue to happen to people with disabilities. Instead, conservatorships and guardianships should be seen as an absolute last resort given how difficult they are to get out of — if Britney has been fighting to end her conservatorship for 13 years, imagine how difficult it is for disabled people who encounter numerous barriers to access to courts, lawyers, and education about their own rights, all who deserve respect and have opinions that should be heard and honored.”
Given how much #FreeBritney has highlighted, we can all see that there is so much more to be done.
One of the ways in which people with physical disabilities may become most marginalized occurs when travel becomes a problem. The freedom that comes from having the ability to travel is unmatched and undisputed. Residing in the community where one desires to live, socializing and performing meaningful and dignified work become much easier. When people with disabilities might otherwise have opportunities to work, employers still deny them employment where they might otherwise thrive, because they are unable to commute. At a time when the Americans with Disabilities Act (ADA) has made accommodations in the workplace a household word, this would seem unthinkable.
According to the Bureau of Labor Statistics, the unemployment rate for Americans with disabilities aged 16 and older was 8 percent in 2018, compared to 3.7 percent for those without disabilities. Additionally, their labor force participation rate (20.8 percent) in 2018 was much lower than the rate for people without disabilities (68.4 percent).
An estimated 25.5 million Americans report having travel-limiting disabilities, according to data from the federal Bureau of Transportation Statistics. About half of this population (13.4 million) is aged 18 to 64, and only about a fifth of this group report working part-time or full-time. These gaps in employment stem from several factors, not the least of which include significant barriers in accessing transportation needed to travel to-and-from work.
Imagine how much less of a burden and how much more freedom people with disabilities would have if self-driving cars were made widely available. There are very few areas of life in which people with disabilities do not need to face challenges posed by their travel limitations, and a car that drives itself would be an enormous step toward reducing those challenges, if not eliminating them altogether. Few would argue how this would increase employment prospects in particular and overall quality of life for people with travel-restricting disabilities.
Regarding the many benefits that autonomous transportation can bring for people with disabilities, Sheryl Gross-Glaser, director of the nonprofit Community Transportation Association of America, correctly notes in clear, timely fashion that,
“Autonomous vehicles hold incredible promise for people with disabilities to enjoy
the enormous freedom that most adults have to live spontaneously and to be
One of the most significant, overarching goals of disability liberation is for people to have experiences, enjoyment and overall daily existence with the convivence that is comparable to their able-bodied counterparts. As technology advances, so too Gross-Glaser says, can freedom and independence for people with varying types of impairments. She continues,
“But just as we need to enable someone with a walker or wheelchair to enter and exit
a vehicle, we need redundant technologies that serve people with auditory or visual impairments and technologies and designs that assist people with cognitive disabilities. Those exist, and they should be used in designing autonomous vehicles so that all autonomous vehicles will be accessible.”
In addition to personal autonomous vehicles, another way the technology can be used is in the area of public transportation, allowing for broader availability that doesn’t depend on the presence of a driver. A fleet of accessible, self-driving taxicabs, buses, and streetcars may be liberating for all. Hailing a ride from an app may not even need a driver or a dispatcher attached to it.
The essence of technology at its best is that it makes tasks easier to perform than they previously were. There are lots of ways that the infrastructure of the outside world must become more accessible. Despite the significant accommodations resulting from passage of the ADA, that larger goal has not been met. However, just as wheelchair users have the potential to be pedestrians in ways they would not without that assistive technology, the autonomous vehicle has the potential to turn people with travel restricting disabilities, for all intents and purposes, into drivers and independent travelers.
By Jeremy Einbinder for CAN DO WORK
There is a tendency in “mainstream” educational systems to marginalize people with learning differences, to make them feel so separate as to be not worthy of instruction. Broadly speaking, such as in the case of the autistic “spectrum,” what is generally considered to be “low functioning” is used to deny agency and allows the established institutions to cast people aside whom they view to not be worth the effort. Whereas people who do struggle, but have the outward appearance and presentation of functioning “normally” or at a “high” level may be denied support.
In an article for The Nation, David M. Perry talks about the ways in which his child, who has Down Syndrome is regularly denigrated along these lines. Going through the process of getting his son support, Perry explains,
“The first social worker came over to assess our son, and we cheerfully talked about how great he was, then later were told we qualified for very little. Yet every other parent and teacher kept talking about ‘waivers’ that we should qualify for—but a waiver from what? What service or requirement was getting waived? We struggled through form after form, lost in the bureaucratic hurdles that stood between us and help.”
It is evident from this anecdote alone that the process should be streamlined, that students should simply have whatever supports they need. Means-testing in this fashion is a destructive practice, wasting the time of both parents and students, denying the kids the support they may need through such endless bureaucracy, when learning could in actuality be much more flexible as a standard.
“Eventually we found out that a social worker had used "mild" for my son's developmental disability on his first assessment, so we had to argue with the state that, in fact, his disabilities were not mild.”
This is especially demeaning. Children with disabilities are in a world which constantly makes them feel like they are not enough, which makes them feel like they can’t be seen as fully human, and that is to a large extent because of the supports that they do not receive. Essentially, Kelly is pleading with the state to recognize that his son does in fact need support, and the only way to do that is to assure them that his son’s case is not “mild” and therefore that it is worthy of actual consideration.
This should not be so difficult. The disability rights movement has been around for generations and the struggle continues.
A USA today article explains,
“Special education made giant leaps on the coattails of the civil rights movement. After more than a decade of congressional study, The Education of All Handicapped Children Act was passed in 1975, signed by President Gerald Ford in November of that year. In 1997, the law was renamed the Individuals with Disabilities Education Act (IDEA).”
The mandate for Disability rights has been around for generations, and for all the progress it has made, it has remained stagnant. Inclusion and diversity are vital. Nobody learns the exact same way, and accommodations should not be means-tested. In this sense, individualizing approaches to education becomes crucial. According to a philosophy known as “Universal Design for Learning,” which Temple University detailed in a study, the approach is “An inclusive learning environment that is universally designed takes into account all relevant dimensions of difference that an instructor expects to encounter” among the students. In order to realize this, students with learning differences need the necessary attention not to just survive education, but the thrive within it.
Referring to the then-recent passage of the Americans with Disabilities Act in 1990, the New York Times wrote in an editorial: “The act does more than enlarge the independence of disabled Americans. It enlarges civil rights and humanity, for all Americans.”
As with many civil rights decisions throughout American history, we must observe two common themes: First off, that the majority of the credit for the struggle to enact change goes to activists, demonstrators and those who engage in direct action and confrontation. Secondly, that the spirit of equality meant to course through American society as a result of landmark wins for civil rights is incredibly difficult to maintain.
For all of the gains that the ADA has made since it’s passage over 30 years ago, its enactment, both in theory and in practice, leave a lot to be desired. Even taking into account the strides in public physical accessibility of community spaces, there is still so much work to be done, even in its most visible form. The fact is that making things physically accessible costs money, and is not always profitable for a business to undergo, especially for a population that many still seem to forget exists, even though they are visible. Crucially, however, there is certainly more to disability than its visible components.
Andrew Purlang, a non-profit executive and disability advocate writes in a Forbes article on the ADA,
“We value its protections, its guidance on how to ensure equal access, and the way it explains disability issues in terms of civil rights rather than just a personal, medical matter. At the same time, we recognize the law’s limitations, its vulnerability to abuse and neglect, and the uneven record of the real changes it has brought about. The ADA has changed the literal landscape and the conceptual language of disability life in America. But it has also fallen short on full community accessibility, long term care, employment, and on equally protecting all people with every kind of disability, not just white, educated, middle-class people in wheelchairs.”
People with invisible mental, intellectual or social disabilities unfortunately remain under-acknowledged despite the progress that has been made so far. Social infrastructure, education, and economics geared by default toward people with very specific tendencies. These include learning styles, productivity habits, ability or willingness to follow particular directions, sleep schedules and energy levels, the ability to keep anxiety and compulsions in check, and the ability to pay attention and complete tasks in the exact way an employer or manager wants. This is independent of whether or not the people compelled to do the work feel any sort of meaningful connection to it.
The fact remains that in the world as it is currently organized, an individual has to have money to survive. Most people, in order to get money, must be employed, or survive on a usually meager welfare state that otherizes people with disabilities and further alienates them from the rest of the population, especially if their impairments (as judged by neurotypical able-bodied people to be so) are invisible.
It is relatively simple for buildings and infrastructure physically accessible. More ramps, elevators, wider hallways, and other changes to architectural design. It may be so much harder to design a world in which people of social, mental and intellectual differences, along with physical ones, are given the opportunity to thrive to the best of their potential. Such a world is not built yet. It is evident that we not only have to change the physical structures of the public sphere, but also the very ideals on which this society have been based.