As a child born in the 21st century, I've come to expect the ubiquity of braille bathroom signs, curb cuts, and reserved accessible parking spots across the United States. I would frown at anyone using an accessible parking spot if they didn't have a disability, along with most other people today.  If I had lived 35 years ago, before the Americans with Disabilities Act (ADA), my beliefs would likely be totally different. 

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The current state of accessibility doesn't exist in a void, it's the product of a complex history. Including everything would be impossible, but let's try to go over it briefly anyways. 

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Our History

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Starting at the Beginning

The concepts forming the basis of accessibility came way before the American political activism of the late 20th century. Disabled people have been around, and received support, since the dawn of humanity- and I mean that literally. 

 

One Neanderthal skeleton shows that he lived into his 40s with a severe traumatic brain injury, spinal arthritis, and a missing arm sustained from childhood. The extent of his condition shows that he could not have survived to this age without support and caregiving from his community. (To learn more, check out NYT's article here, academic article here)

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Many other cases of disability and accommodation have been recorded in ancient history. 7,500 years ago, a teenager lived in Florida with Spina Bifida. Around 6,000 years ago, a man survived to old age with a nonfunctional arm.  4,000 years ago, a man lived in Vietnam with paralysis from the waist down.  

 

Anthropologists have found that consistent health related caregiving, where the caregiver does not have an obvious benefit to continuing care,  is a characteristic unique to humanity and our ancestors.  This suggests that care for the disabled is a critical part of what makes us human.  

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Contrary to this idea, with the turn of the 20th century came the emergence of the eugenics movement.  The founders of eugenics based their social ideology off of the concept of evolution as they understood it at the time.  To them, the value of a person could be measured by their evolutionary fitness. Intelligent, physical able, white people are seen as the next step of humanity's evolution, while all others are unsophisticated remnants of another era.   While these concepts were inspired by scientific principles, their roots are in no way scientific. It may be obvious, but it's worth emphasizing that a person's perceived race, physical ability, and  intelligence are not indicative of superiority even within the metric of evolutionary fitness.

 

Natural selection is a mechanism by which a species changes to fit their environment over massive amounts of time. The ancestors of humanity are not inferior to humans, just like how chimpanzees and gorillas are not worse humans, but their own distinct species.  Let's not fall victim to the naturalistic fallacy, assuming that just because something is natural, it must be good.  For example, many other primate species have evolved the practice of infanticide.  I think we can agree that the practice of killing a child in order to free up their mother's time to bear your own children is horrific, yet it's a valid evolutionary strategy.  While we often use 'evolution' as a synonym to 'advancement', evolution is neither a progression or regression. 

 

By fixating on the concept of survival of the fittest, we ignore that empathy and care for the sick and disabled have also arisen from evolution, as is shown by our prehistoric ancestors. But even if no evidence of caring behavior in human history had been found, this doesn't constrain human futures.

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The very idea of mentioning eugenics in this piece scares me.  Today, most people immediately associate eugenics with the concentration camps of Nazi Germany.  A topic that's associated with an atrocity of such magnitude should be talked about carefully, and not slung about like a cudgel to force a reader into joining with the author in moral superiority.  So let me emphasize: when a person expresses concerns over the limitations of accommodations, this does not mean that they are not eugenicists or Nazis. However, by only associating eugenics with Germany, we forget that the movement shared its origins in the US.  Whether we like it or not, eugenics played a part in the culture around disability in early 20th century America. Institutions created in that time informed much of the politics of the later century, perhaps even carrying on influence until today. 

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100 Years Back

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"It is only necessary to encourage as far as practicable the breed of those who conform most nearly to the central type, and to restrain as far as may be the breed of those who deviate widely from it. " - Father of eugenics, Francis Galton, 1883. 

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Eugenicists believed in the superiority of the normal, and the inferiority of any of those deviating from it, including in race, ethnicity, sexuality, and of course, ability.  Alongside the emergence of the eugenics movement, Americans developed a broader cultural fixation with normality, the deviance from which is assumed to be beneath-normal. A baby born with a birth defect in beginning of the 20th century America likely would have been refused care by a doctor, possibly dying from lack of treatment. In institutions for deaf students, teachers prevented the use of sign language under a belief that nonverbal communication is inferior and less evolved.

 

Let us imagine that I was a man with visible physical disability in 1923.   As America had shifted to a wage-based industrial economy,  it became more difficult for families to support disabled members that could not contribute financially.  Because of my visible physical disability, it's likely I would be barred from a factory job even if I'm totally capable, because I'm assumed to be a worse worker than others based on my appearance.  If I continue to be unable to support myself financially, I may have ended up in a poorhouse.  This means performing manual labor living in a dirty, unsanitary facility crowded with the mentally ill and disabled. 

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Instead, what if I was a woman with mental illness in 1923?  If my family and medical practitioners determined me sufficiently unwell I may have been sent to a psychiatric facility, such as an insane asylum, with the hopes of curing my condition.  If I was wealthy, I would have been sent me to a private facility and I would have received better treatment than if I ended up in a state facility or poorhouse. In the next decade, depending on where I live, it may be legal for me to be forcibly sterilized. 

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While the 1900's began with institutionalization and a lack of civil rights for disabled people, the next century brought about the shifts that have transformed the country into what disability rights look like today.

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The Disability Rights Movement

As a kid, I'd never heard anything about disability rights movement or the history of the treatment of the disabled.  The story of the disability rights movement was only introduced to me in fragments once I entered spaces concerned with accessibility and inclusion. While many older than me remember many of these events in their own lifetimes, this is a history paraphrased for those like me who didn't learn about this in school. 

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In the mid-end of the 20th century, we can see evidence of a shift in the culture surrounding disability that sets up the basis of the coming political movement.  Beginning with the World Wars and followed by Vietnam, the nation flooded with disabled veterans. Medical technology had developed, allowing the possibility of disability inclusion to be more real than ever before. The American population shifted to higher percentages of the elderly, who experience many of the same challenges as those with lifelong disabilities.

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The Rehabilitation Act of 1973 was the first legislation that considered the separation and exclusion of the disabled to be a type of discrimination and not just a fact of being disabled.  The Rehabilitation Act focuses on a program to rehabilitate the disabled by assisting them in entering the mainstream workforce.  The Act's Section 504 protects disabled people's rights to accessibility in federal institutions, including schools.  This legislation didn't pass without opposition.  The Act was twice passed by the Senate, and twice vetoed by sitting president Nixon because of concerns of the costs of the program. 

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Once passed, sitting administrations failed to enforce Section 504. President Ford delayed the signing of what would enact the enforcement of the legislation with concerns for cost. Though the following President, Carter, promised enforcement of the regulations in his campaign, once elected, he continued to stall.  

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Change only happened after organized protest from disability rights advocates. Famously, in 1977, over 150 people with disabilities occupied a federal building in San Francisco for 26 days with other smaller sit-ins simultaneously occurring across the nation. 

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The contemporary disability rights movement we think of was propelled off the backs of other civil rights movements in the United States.

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Demonstrating this solidarity, disability rights advocates in the 504 sit-in were aided by the Black Panthers. Leader of the disability rights movement were also interconnected with LGBT, anti-war and union protesters. Its impossible to view disability outside of this intersectional lens, because it always has been.  Just a century before, adversaries of black emancipation justified the slavery of racial minorities by equating racial minority status to disability as an inferior and less competent type of humans.  Disabilities also, were seen as inferior in a way wrapped up with race. For example, Down Syndrome when first identified was called Mongolism, with entirely racist justifications. 

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Finally, with the assistance of their allies, disability rights advocates ended their sit-in and continued their protest at the capitol until legislators signed 504 enforcement into law a few days later. 

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While the Rehabilitation Act was the beginning, over the next decades, the disabled continued to advocate for their rights with the opposition of the federal government. Famously, in 1990, protestors in wheelchairs literally crawled up the steps of the Capitol building in demand of the Americans with Disabilities Act. An image released of the "Capital Crawl" shows a young girl struggling to pull herself up the steps of the Capital building in a poetic representation of how the United State's excludes the disabled through inaccessibility. Soon after, advocates celebrated as the Americans with Disabilities Act (ADA) was signed into law.

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The ADA came 16 years before the United Nation's 'Convention on the Rights of Persons with Disabilities', and protects the rights of the disabled in employment, education,  public spaces, transportation and more.  The language of the ADA supports a radically expansive definition of disability for the time of its passing, including non-permanent and non-serious conditions under general criteria of limitation. 

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It's under the ADA that I've grown up used to accessible parking spaces, curb cuts and braille bathroom signs. But it accessibility doesn't stop at the ADA. The application of the ADA is constantly changing, having expanded in some ways, such as the explicit inclusion of gender dysphoria in 2022, in other ways, it has been restricted. In 1999, the Supreme Court ruled against the application of the ADA for "easily correctable disabilities" though this was overturned again in 2008.  Culture and legislation around disability and accommodations are constantly changing.  

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The Current World

In no way has the ADA solved every problem.  Disabled people still live with a high rates of unemployment and poverty.  People with invisible and mental disabilities often fail at claiming the rights that are granted to them from the ADA.  The disabled community continue to struggle with unemployment, stigma, and lack of access.  With the development of technology, culture and medicine, questions of how we handle disability become become more complex with each every passing day. 

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New Medicine

Within the last century, we've seen a lot of progress in our understanding of anatomy and disease. Earlier in human history, a person's ability had to be measured through the perception of those around them, and often had to fit into religious and vague ideas of different ailments. Now, for many conditions, we  have clearly defined and evidence based diagnostic criteria. 

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Many people that never would have been able to live healthy lives a century ago can survive today through technology like pain relievers and organ transplants.  When accessibility solutions for limitations become ubiquitous, a condition may become less notable. A few centuries ago, I likely would have struggled every day because of my very poor vision, but having worn glasses since childhood, my vision never really crosses my mind. 

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The definition of disability among academics has expended, leading to some change in the public's perception as well. Under these more expansive understandings of disability, a much higher percentage of the U.S. is considered to be disabled than ever before. The CDC estimates that approximately 27% of U.S. Adults have some disability. 

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With new understanding of the human body do we now have new understanding of the human mind. Only with the release of the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-3) in 1980, did differentiated mental diagnoses become the medical standard. Before, mental conditions were seen as inseparable from a person's life experiences. Now, mental health and cognitive conditions are diagnosed like any physical disease. Constantly, diagnostic criteria and diagnoses are changed in the DSM as medical and cultural understanding around each phenomenon changes too.  Studies show that mental illnesses have become more publicly accepted as biomedical conditions. While some diagnoses, like Major Depressive Disorder, have had significant reductions in stigma, others like schizophrenia have potentially become more stigmatized.

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Whether it is due to an increasing awareness of mental health or a mental health crisis, more Americans than ever before have poor mental health.  The youngest generation, which I belong to, has had a worryingly high rate of self-reported mental health issues compared to those that came before us. 

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As the realities and culture of ability necessarily change as our society does, how we view accessibility must change also.  While the initial disability rights movement focused on physical disabilities, with the increased medical understanding and awareness of mental health conditions, we are now tasked with figuring out how these conditions fit within our previously existing framework. When is it beneficial to fit mental health conditions into our understandings and culture around disability and where does it not quite fit?​​

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The New Generation

I am part of a new generation, one that has grown up with the Americans with Disabilities Act, a biomedical understanding of mental health, and the all reaching force of the internet.

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When I was in middle school, depression visibility trended on social media. It was around this time that many of my friends either dealt with suicidal thoughts or had friends with suicidal thoughts.  From YouTubers I watched, posts I read online, and other media I consumed, I was introduced to the idea of depression as a medical disease in the same sense as a cold or flu. This garnered a new legitimacy to my friends' symptoms, and my goal became finding them treatment. From the internet, I learned that I needed to tell my friends to seek therapy and medical diagnoses.

 

From this understanding, I explored the possibility that my own mental health struggles might be a medical condition. After bringing up my concerns to my parents and doctors, I eventually was diagnosed and began treatment for Social Anxiety Disorder.  In my own life, this shift to the biomedical framework has been a mix of positive and negative. Diseases happen to someone and are not a person's fault, so in some way, this framework helps alleviate the stigma of those struggling with mental health. In another way, by viewing mental health conditions as disease, we may expect a simple cure and separate our mental health from our environment and lifestyle to an extreme. When I first started to attend therapy, I expected to be diagnosed and fixed like I would with any other type of medical issue, but that's not how effective therapy works.

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This shift came from the kids, up.  I had to explain all of medical nature and spectrum of depression and anxiety to my parents along with the rest of my friends. These first conversations were treacherous. While to me, getting a diagnosis meant the problems are legitimate and we can focus on a solution, my parents didn't want me to think that there was something wrong with me.  As a 13-year old, my perspective wasn't exactly reputable, but I think our disconnect reveals some insights about the generational divide.  To our parents, diagnosis of mental illness was more extreme and life-altering.

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Characterizing this shift and why it's occurred is complicated because it draws from the influence of countless forces of society, culture and technology. One guess is that the more that accommodations are given, the more that we expect them. When I'm immersed in media where people advocate for depression to be treated as a legitimate disorder, I'm more willing to view my own unique mental barriers in a medical framework. If a classmate's physical disability is respected and problem-solved, I may expect that by labeling my own brain struggles in a similar way to those physical disabilities, I may be treated likewise with respect and consideration.

 

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Accessibility in the Age of Information

I am completing my final year of study with a major in Computer Science and minor in User Experience design.  In this academic sphere, accessibility concepts have dominated my coursework.  While my experiences may not be indicative of curriculum across the country, I find it curious  which settings these conversations have occurred.   While I've taken several accessibility-focused classes in my technology discipline that discuss frameworks like inclusive design and the disability spectrum as the standard, my friends studying anthropology, sociology, political science and even nursing haven't had anywhere near the equivalent focus on disability-related concepts.  While disability studies is seen as a social science, topics centered around disability are becoming increasingly relevant in the technology and design fields.  Why? Because now more than ever, the technology, rather than medical or political systems, determines accessibility. 

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Today's technology has the potential to provide greater access than ever before.  Immobility matters less if you can complete activities important to quality of life through a screen. Eye tracking software even enables those with near full body paralysis to communicate. 

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Through the internet, even fame and fortune can be accessible to all. Singer and YouTuber Corpse Husband has over 300 million views on his videos, several top-100 hits, and a platinum selling single.  While he is completely anonymous, he has opened up in interviews about the mental and physical health challenges he faces.  The singer has multiple debilitating chronic health conditions and deals with agoraphobia that makes it extremely difficult for him to leave his home. Despite this, he's been able to release popular music from inside his own home reaching massive numbers of people. 

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Similarly, another anonymous content creator, Ironmouse, streams massively popular videos despite her severe health conditions.  Ironmouse has Common Variable Immunodeficiency (CVID), that left her bedridden and isolated.  A traditional career wasn't possible for Ironmouse due to her condition, and she had been relying on support from her family member before receiving internet fame. Now with her internet career, Ironmouse financially provides for her family members and has raised huge sums of money for various charities, including for CVID. 

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While people with conditions like these two internet celebrities have existed forever, before the internet, they were more limited in the influence and interactions they may have on others.  Now, people have the ability to expose themselves to a range of people that they may have never been able to encounter in their everyday lives. I'm a faithful viewer and recommend the YouTube channel Special Books by Special Kids, in which a wide range of people with disabilities are interviewed about their life experiences. (Check it out here). 

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Not only can those with disabilities connect with those that don't share their condition, they can also connect with those that do share it. Condition-centered social media groups have the potential for good and bad. While they can turn into an echo chamber and perpetuate misinformation, they can also find solidarity with others with similar conditions.  Connecting with others can help provide new solutions and help a person just feel less alone with their condition.  Groups can generate new ways of understanding their condition, that has the potential to be either true or false.  The concept of Rejection Sensitive Dysphoria for example, is central to ADHD discussions in many online communities, but is less talked about in in-person and academic contexts.  Whether this is good or bad is... complicated.  It can be an issue when non-qualified sources speak on what is or isn't part of a diagnosis, but also it makes sense that a huge group of connected people with the same condition would find some patterns amongst each other that haven't yet been found by traditional scientific methods. ​

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While this is a complicated issue, several polarized online debates show the passionate and exacerbated opinions of many social media consumers on related situations. A few months ago, a TikTok user posted a video about her disappointment over not being considered for time blindness accommodations for her ADHD for an internship she had been applying to.  Time blindness is another ADHD symptom that has had some academic study but is talked about more prevalently in online ADHD communities and is absolutely not known by the general public.  This user's video went viral, with reactions on many other social media platforms receiving millions of views and other types of high engagement. Most reactors were in disbelief, expressing frustration with her entitlement and lamenting a decline in personal responsibility.

 

It's true, for many situations, an accommodation for time blindness would not be practical or possible, and the existence of time blindness as an ADHD symptom is still under some debate by scholars. Online ADHD spaces are full of issues, and I am no way excused from the problems that exist in these communities. I've seen it over and over again. Neurodivergent people, happy to have a label that explains their differences from the rest of society, attach parts of their experience to that label that may not necessarily be part of their neurodivergence. It's cathartic to label your behaviors that you've been mistreated for as legitimate and relatable to others like you. The issue can be that through the harsh separation between the neurodivergent and the neurotypical in this content, the majority of people might be able to easily relate to what the person describes and assume that they too must have the condition too because they're not normal as well. The truth is, that being not normal is normal. Consider though, that the fact that many "normal" people might be flocking to these labels might reveal a deficit in how we treat what we have ruled to be neurotypical variations of the human mind.

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What is just as concerning though, is the intense and aggressive nature of the responses that the viral TikTok received.  On the internet, we're able to learn about more topics than every before, but we're also in danger of assuming that we know everything just because we've seen it once. While some criticism of the TikTok seemed sincere, there also came a wave of intense and aggressive criticism from users outside of the community that the TikTok creator usually engaged with.

 

By interacting or viewing the content of a person online, you're only exposed to a fraction of their lived experience, so it can be dangerous to make broad overarching statements about a person without fully understanding their situation, especially for a topic as nuanced as accommodations. 

 

In the same way that people with disabilities can have more visibility with others and amongst themselves than ever before, those with hateful and ignorant views towards those with disabilities also have that same potential for visibility and echo chambers.  While a view might only belong to a small minority, by being overrepresented on the internet, people that are the subject of their ignorance have greater chances than ever before of being exposed to them. 

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Just like it has great potential to enable people to do things that they never could before, technology has equal potential to exclude. 

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In the past, the responsibility of creating an accessible world came down to the government. By determining the standards of public infrastructure and employment accommodations, the government absolutely does still contain much of the power for accessibility potential. But because technology is the new setting for our enrichment, and our social and professional lives, it's the companies that develop these technologies that have power whether our world will be accessible, or if it won't.

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Defining Accessibility

Let's take some time to examine the new definition of accessibility that's been perpetuated at tech conferences and among design professionals.  Note that this does not mean that it carries through to the actual design of products, as academics and conference speakers tend to be motivated by good will and corporations tend to be motivated by profit. No matter, investigating this perspective is valuable because the conversations held in these settings trickle down to entering the vocabulary and perspectives of many in the tech industry. 

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Instead of a condition, disability is now defined as the relationship between a person and their environment. In this way, disability is context specific. A person with a bad wrist may struggle with turning a doorknob in the same way that someone holding groceries also would. 

 

Just as a person with average abilities can be disabled situationally, such as having to hold groceries, accessibility does the opposite for people with disabilities. It changes the obstacle in a way that the person is situationally, not disabled. For example, wheelchair basketball is a wheelchair accessible sport.

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Wheelchair basketball isn’t accessible because it gives a modification for disabled people to play the same basketball as everyone else, it’s accessible because it’s a new sport entirely, where being chair-bound doesn’t matter because every athlete is faced with the same limitation. 

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Unlike the history of the disabled-lead campaign for disability rights legislation in the U.S., this accessibility movement has kept momentum in tech from financial gain instead of ethics. Simply put, visually accessible user interfaces are profitable. 

 

Accessibility is often profitable for tech corporations because a design that’s accessible to people with limitations will be even more accessible for those who do not. If someone with a reading or processing disorder can interpret your webpage, it will be so easy to understand for those without. 

 

There are many cases that exist within tech where accessibility is obviously  beneficial. For example, high contrast colors are helpful for those that are both colorblind and not and though it disproportionately helps those with the disability, it benefits everybody.  The cost of designing an interface with high contrast colors instead of low is negligible to none. 

 

However, there are other cases where the cost of equitable access is high. If creating a website accessible to blind users requires an expert that can write the alternative text and change the design appropriately, the company may not be financially motivated to make their product accessible in this way. When an employer chooses who they will hire, the employer will compare the value of their labor in comparison to a more abled person with the same pay.  If a person's disability will impact their productivity, it seems like an easy choice to select the other candidate.

 

These decisions are complicated, and increasingly so with the expanding definition of disability. As we create the new technology, write the new laws and settle on the new culture, we must reflect on what disability has meant and what it should.