How we understand the concepts of disability, ability and accessibility have radically changed over the last 100 years. How will they change in the next 100?

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I'm not a teacher,  legislator,  lawyer, or doctor.  I can't tell you the answers to the nuanced accessibility-related decisions that are specific to your expertise. Instead, I hope to present you with examples-based suggestions on how we might internally frame situations related to accessibility going forward.

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Accessibility by Design

The work floors of Peckham's facility in Lansing, Michigan resemble any manufacturer's. Workers bend over industrial machines and rows of materials, crafting uniforms for the U.S. military.  But instead of photos I've seen of workers cramped into shadowy and cluttered sweatshops, Peckham evokes freedom. Two story high windows line the walls and stretch across the ceiling, basking the workers in natural light.  Handmade art covers the other walls, each piece dedicated to one of the facility's employees. Workers on this factory floor display diversity across many axes, including race, dress, and ability. 

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At the conception of this building a few years ago, Peckham staff had an interesting conversation with the architects they'd hired. Contrary to the architects' usual process, staff insisted they attend several company wide town hall meetings before even beginning to draft concepts for the company's new headquarters.  The impacts of these meetings touch every piece of how the building looks today. 

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The bathroom on the main floor is unlike any I've ever seen. I even snap a picture with my phone (after checking I'm invading no one's privacy, of course). If an architect were to design the bathroom without an understanding of Peckham's individual needs, they likely would have defaulted to a standard design of many slim stalls and one wheelchair accessible stall at the end.  Peckham employs more wheelchair users than most companies, but they're still a small minority. As this initial meeting with people across the company showed, wheelchair users aren't the only ones who can appreciate large stalls and floor to tall dividers that guarantee privacy.  Today, all but one of the stalls in the main floor bathroom of the facility are wheelchair accessible, and stalls range from floor to ceiling with no sneaky gaps. In contrast to other bathroom designs, the wheelchair stalls sit at the front rather than the back, which makes sense for bathroom users with low mobility. While a design like this may have some minor drawbacks to non-wheelchair users, like a slightly higher chance of having to stand in line, the difference it makes to wheelchair users is massive. 

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There are many more examples of the fruits of this preliminary community consult that extend beyond accommodating classical understandings of disability. People affected by trauma indicated their value of places to sit in the dining hall with their backs to a wall, so booths were added to the layout.  Peckham also employs many refugees, many being Muslim, that communicated their needs for a prayer room. In the building's design, the prayer room has windows facing Qibla, and stations immediately outside to wash feet, dryers at foot height, and a place for shoes.  

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The design of this room also emphasizes that on top of an initial discussion, designing for accessibility requires continuing and cyclical feedback. When the architects first created the foot washing station, they placed one unit. However, the Muslim community members were able to communicate their need for foot washing stations separated by gender.  Then, the architects designed two faucets next to each other, but they needed more feedback to understand the intricacies of the request, that the male and female faucets needed to be visually and physically separated. 

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By receiving direction from a diverse set of people in the very first step of the design process, the architects were able to create a space that was accessible to a diverse group of people. ​ Not only does this accessibility benefit the employees, but the company also can constantly improve from being made up of people with vastly different lived experiences and abilities. 

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Let's Stop thinking in Accommodations

Peckham's new headquarters are an example of accessible design.  By creating a place that automatically affords a range of abilities, extra accommodations don't need to be given retroactively.  In contrast to accessible design, accommodations single out the person being accommodated from the rest.  Accommodations give a person something “extra”, with the intention of granting them equitable access.  

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When deciding whether or not accommodate someone, we do some sort of internal cost-benefit analysis to decide whether the value to the person needing accommodations outweighs the cost to others.  Imagine the accommodated and accommodating as either sides of a set of scales. The weights are our resources: money, time, and energy. 

 

But in this linear way of thinking, if the scale is tipped in favor of accommodation, it must fundamentally be tipped away from the good of the rest of the majority. For example, if everyone got to take unlimited days off of work with no rationale, the company would likely no longer be profitable, and the company’s decline would negatively impact every one of the employees. In the metaphorical opposite tipping of the scales, if no one was allowed any days off for health conditions, individual employees' lives would suffer tremendously. 

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In this way, the needs of individuals in the question of accommodations are pitted against the needs of the majority. For a person with an ability limitation to be recognized as deserving accommodations, they must advocate for why their access is worth the cost to the rest of society.

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Rose's regular treatment without insurance would cost more than she could make as an upper-middle class earner in an entire year.  The tradeoff in this situation seems as straightforward as the metaphor of the scales. Sure, if Rose were to not receive treatment, she would be totally disabled and not be able to contribute to society by working, but as shown by the dollar tag attached to her treatment, even if she were to work, she wouldn't be able to make up for the cost of her treatment.  Rose struggles, because she sometimes doubts whether her treatment is worth the financial burden it puts on others.  

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In situations like Rose's, we encounter our own set of scales. Do we advocate for ourselves, because it's important to prioritize yourself and advocate for your well-being? Or do we follow our internal morals, that remind us that being selfish is wrong? This ethical conundrum gives an added burden to those in need. 

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One of the reasons that accessible design triumphs over retroactive accommodations is that people are never put in this position.  At the Peckham building, a prospective Muslim employee wouldn't have to negotiate a space that they can go to for Salah when they're applying to work there, because it was already designed for them. 

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It's impossible to switch from accommodations to accessibility entirely. No one can design a system that is accessible to everybody, so ultimately, accommodations are necessary if a space is to be totally inclusive. But when we do think about accommodations, let's remember that the scale metaphor is an approximation of the dilemma, and doesn't account for the nuance. 

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By looking at these situations upon a linear axis, a set of scales that can be tipped towards one or the other, we may forget that the boundaries between these two sides are arbitrary.  Instead of the disabled pitted against the normal, every person has their own individual needs that require accommodation.

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No one in Rose's life, not doctors, not her friends, family, even acquaintances, would want her to stop treatment because it's too expensive.  This is because a direct cost-benefit tradeoff ignores important parts of humanity.  Because we value human life, because we can even want strangers to not suffer, sometimes its okay if the rest of society pays a bit more.

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And it's not just Rose vs. everyone. There are others with Rose's condition that are benefitted by access to treatment, and others that will someday benefit when they inevitably develop their own health issues. There are others, still, that do not have and will not have Rose's same condition, but benefit from the expectation set by Rose's treatment to apply to their own situation.

 

The costs and benefits we estimate for accommodations may not be as accurate as we first imagine.  The Curb-Cut Effect describes how designing to make something accessible for disabilities helps an even wider group of people. For example, audio books were first created for the blind, but are the preferred form of reading for many non-blind people today for a huge variety of reasons.  While creating closed-captioning to make your content accessible to the deaf might sound like a lot of work, with new AI technology, it will be a lot easier than transcribing the whole audio. 

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But for now, let's throw away the limitations. As technology develops, many of our design barriers crumble away. Instead of constraining ourselves to what has been done, what would the world be like if we expand the borders of what it could be?

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Is the answer Universal Design? 

As introduced in the beginning of this project, tech companies and designers have latched onto the importance of accessibility. The Universal Design movement emerged in the early 2000's from architecture, and has become a buzzword at universities and tech conferences. 

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Universal Design means design for everyone.  Within this framework, we try to create products and experiences that are inclusive and accessible to as many people as possible. This design philosophy does a great job of accounting for the disability spectrum, because it just focuses on providing access instead of measuring the validity of the need.  

 

The concept of Universal Design is great, but in reality, it's had a hard time making the switch from academia to industry. There are several reasons. 

 

Most simply, designing for everyone is necessarily hyperbole.  No one design can be accessible to everyone, as different people's needs contradict each other.  When a website relies on images, those that are blind may struggle to get the full experience. But when a website relies on text, it will be hard for someone with a reading disability to engage. The fierce debates taking place in many American workplaces across the country show a similar contradiction. While work-from-home schedules have been a miracle for much of the working population, for those like me, it's been a disaster. While some people are enabled by the flexibility of a work-from-home schedule, others struggle to engage without a separated work space or in-person interaction with coworkers. What can we do to be accessible, when considering one person's need may contradict another's? How do we make the right decisions when balancing the many dimensions of this vast diversity?

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Our brains, our bodies, our lives and our needs are so different. Truly inclusive design is never possible for this reason, but it can be an ideal we can aspire to. One approach is to include options and flexibility, so access doesn't rely on one singular path. 

 

The other, more obvious, reason for the lack of adaptation of the Universal Design framework by corporations, is that they are, well, corporations.  The philosophy at the root of universal accessibility in many ways necessarily contradicts with corporate objectives.  As businesses, tech companies are incentivized by financial benefit. While inclusive designs expand their customer base up to a point, designing for the majority of consumers will always be the main goal of the company. Some changes make a design more inclusive without any sacrifices to the needs of the majority, but any change that makes worse the experience of the majority at all will pair with a prospect of financial loss.  For example, if all of the Peckham stalls were not accessible, perhaps a new stall could be added, creating a minimal reduction in the wait time of visitors to the building. While this minimal wait time is a minor burden on abled visitors in comparison to the burden of a disabled person using an abled bathroom, with money as a motivator, abled people win. 

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Within the tech fields, there are many iterations on this framework.  While I don't necessarily disagree with the aims of these movements, I cringe away from wanting to associate my own design philosophy with them.  Because corporations are constructs instead of individuals, I don't expect human-centered decisions to take place on a corporate level. Something's not right. As a potential customer that cares about accessibility, I know that corporations are incentivized to make me think they're designing their products accessibly. As someone aware of both the massive range of human diversity and economics, I know that corporations are not incentivized to be accessible to an expansive amount of people. 

 

As an intern at a big tech company, I personally encountered this. Among designers in a major division of this Fortune 500 company, a single designer specialized in accessibility. On their own time, they hosted office hours for anyone across the company interested in improving their work for accessibility. Efforts were put on the backs on individuals instead of the company itself.  This lone designer had to advertise their office hours amongst employees all by themselves, and accessibility standards weren't pushed or expected by management. While sometimes their accessibility recommendations would be entertained, in most cases, they were dismissed in later stages of the development cycle. 

 

On the surface level, the company appeared to care about accessibility. Designers had to take a small web course about the importance of diversity and accessibility at the beginning of their employment, that included words like universal and inclusive design. In practicality, they weren't given any specific standards for implementing these accessibility standards.  Groups within the company hosted accessibility-focused workshops, but employees had to seek them out on their own time, and they were not considered in their workload expectations. ​

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As shown by the one-man accessibility specialist, individual employees can make a big difference.  Also though, these individual efforts seem like a fight upstream when the systems in place do nothing to elevate inclusive design. 

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Not just Citizens, but Laborers, of the Information Age

As both me and those that I've interviewed are students, we have not yet fully arrived on a fundamental aspect of American lives: living as adults in an economic system where we earn through our contributions.  It's a real quandary.  How can we make an equitable world for people of varying abilities when ability is the measurement of how much money we make, and thus, the power, access, and control we have over our day-to-day lives?

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Concerns about financial independence were prevalent in every interview I conducted.  Luke is able to have his needs met through his father's wealth and good insurance, but he knows if he were to lose access tomorrow, there would be no way to provide for himself the things he needs for survival, even through federal programs of assistance for the disabled. Rose has struggled throughout her education because she knows that she absolutely needs to have a well paying job before she reaches 26. After she leaves her parents' insurance, she'll need it to cover the medications and treatment she needs.  While her siblings got to explore their skills and take risks, Rose's education and career so far have been paired with a cloud of looming pressure and anxiety.  This compounds on the direct effects of her limitations themselves that have made career and education hard, like her mental and physical health issues making her take longer to complete high school. 

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I described to you the diversity and accessibility of Peckham. But how is this possible if Peckham is a company? Peckham is a company, yes, but it is also a nonprofit residential vocational program. 

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To learn more from the niche of people with disabilities in the workforce, I toured Peckham and asked a lot of questions. By looking at what succeeds at Peckham, we can envision might realistically succeed for other people.  

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Peckham's financial ability to support a diverse set of workers comes from a mix of profit, donations, and contracts from the U.S. government under the AbilityOne program.  While this government program granting contracts with companies with a large percentage of people with registered disabilities exists, Peckham is one of very few that has acquired one of these contracts.  Admins shared with me that they are in danger of losing their contracts, as they haven't been able to meet the demands for some time now. 

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While Peckham supports a large percentage of significantly disabled people, they haven't been able to sustain meeting the percentage required by the government without lowering their standards of support for their employees.  Even among disability advocates, opinions are split. To make programs like AbilityOne actually feasible, the standards likely need to be lowered, but is that just settling for a compromise? Ideally, federal programs like AbilityOne wouldn't just be limited in impact to a few companies, of which are a drop in the bucket when considering the vast unemployment crisis in the U.S.

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What makes Peckham stand out from similar companies that focus on the employment of those with disabilities is their efforts to make accessibility extend beyond gaining an entry level position. Many other companies make strong distinctions between the abled and disabled employees, and disabled employees are kept from upwards mobility. In Peckham, a large fraction of the administration started on the factory floors. After all, disabled people who have needed Peckham's career assistance and worked on the floor are absolutely the most qualified to make decisions about this population.  

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It seems that the standard is to give people that are kept from traditional employment trajectories because of their ability something they can do to just be part of the workforce, but no more.  In all career fields, all of us at the minimum begin with a deficit of knowledge. To overcome this, we must be taught. Teaching hardly ever wins in a cost-benefit analysis of the payoff and costs to the teacher and student, but it's necessary for the student to one day be able to make real contributions. 

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By training employees, even ones that have limited abilities beyond what we decide is normal, we make an investment in their independence. Peckham purposefully puts all of their job applications online and require all employees to fill out online timesheets, even if they need assistance to learn these skills at first.  Accessibility isn't about making things easier, it's about making what's important happen, even it requires some extra effort. 

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Technology is what's important. Technology is how we can invest in people's futures.  A huge portion of new jobs exist within technology fields, and all jobs have increasing expectations of technology skills. Peckham recognized this and has created a new career route for IT, to help train employees in becoming qualified IT professionals. By enabling people to learn skills that they can use to sustain themselves professionally, we allow them to thrive in our system. ​

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Think New

Within the currently existing framework for disability and accessibility, there will be no revolution. But new technology already has, and will continue to, redefine the boundaries of accessibility can look like. 

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The Internet has provided new access, and new challenges. S is able to use a phone and laptop to write, but would never have been able to complete their studies if handwriting was the only option.  On the other end of the spectrum, Rose observes that her online interactions have been much crueler than her in person ones on the basis of judging her ability issues.  Exactly opposite, Luke has used online interactions to be able to make connections without the prejudice that comes with his visible disability. His online relationships consist of some of his closest friends, and he's aware that this would have been a lot harder if his appearance had made an impression before he got a chance to speak. 

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While there are some very legitimate reasons for not allowing technological aids for accommodations, its important not to have our primary reason be the status quo. Emily shared a frustrating conversation she had had with a professor. Because of her health issues, she sometimes would benefit from watching a lecture at home instead of within the lecture hall to get her attendance grade.  The lectures were already recorded to be posted afterwards, so there was no extra effort needed to be performed. The real time interactive component to the lectures was already online instead of in-person, so Emily just wanted to be able to follow along and engage live in the best way she could. Also, Emily understood that in person lectures are better for paying attention and she indicated no desire to do online over in-person except when her health limits her.  The single line response that Emily received for her request was: We're not an online university. I want to make it clear that the professor was not obligated to accept her request. However, this response implies that they turned down a solution that would help someone in their education purely for a moral ideal of what should be. ​​
 

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The Necessity of Conversation

The Peckham example emphasizes the important of a conversation when designing for a range of abilities. But this communication goes deeper than a step in the process for designers, it's an important part of all situations in which we must consider how to treat those with limited ability.

 

Opinions of disability advocates split in the question of integration vs. separation. While history has highlighted the need for integration, in some cases, there's value to separation.  One Peckham employee with a cognitive disability had worked at the company for several years before he gained enough skills to transfer to a better job at a mainstream company. However, just a few years later, he found himself reapplying for Peckham. What the employee said was that it wasn't too high expectations set on him that made him struggle at mainstream jobs, as he easily fulfilled his job responsibilities. Instead, it was the loneliness.  

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Among the diversity in ability at Peckham, understanding was a cultural expectation. Back in other environments, he felt different and became isolated.  Being a minority comes with it's own cognitive load, with very real health consequences that have been supported by recent studies (check out articles on allostatic load). 

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Our distinct social categories of the disabled and abled make the disabled into the other.  While Peckham is more accessible than most companies, it is in no way unique in it's diversity in ability.  As we've discussed, the spectrum of ability varies across each person in their own unique ways. So why couldn't this employee's new workplace be just as much of a supportive environment as Peckham, had the work culture been different?

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My interviewees described who they have an easier or harder time with on the basis of their disabilities. The overarching theme was curiosity and dialogue over judgement. 

 

When we assume that we understand a person's limitations, its easy for us to decide which asks are needy or lazy instead of genuine. As Rose puts it, “it’s hard to ask for accommodations when it’s very clear that they think it’s a you problem". 

 

Charlotte points out that inaccessibility is usually out of ignorance, not malice.  She wishes that people would have the curiosity to learn, and not by asking her to explain every detail, but to have learned some on their own on the internet or from other sources to at least have a bit of a baseline understanding.  Rose and Luke agree with this, but they both point out that it's not an expectation.  As much as they wish people understood more from the get-go, they know that it isn't a realistic ask. While we can't know everything right away, what if we approached ability related situations with malleable perspectives, ready to learn?

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​The same curiosity over limitations can also be applied to solutions. While we may think we understand what is best for a person on the basis of their ability, the person that needs the change is best suited to problem solve on their own.  Luke describes how the worst nurses he's had are defensive. Luke knows his condition better than anyone, and tries to explain how to do tasks to his nurses when they need it. Instead, he's experienced nurses not listening to him and wanting to do it their own way. 

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Rose talks about a key memory from when she was a kid. Even though she got her work done, she struggled a lot with remembering to bring her flash drive back to school, and was punished frequently for this. At some point, she brought up that she might be able to email her work to herself instead of needing a flash drive, but the teacher automatically dismissed her in the interest of "being fair".  Charlotte recently moved regions and now works with a different diabetes clinic. While this new clinic is better regarded within the medical world, she's had a worse experience with them. She says that the difference is hard to put into words, but it has to do with a prescriptive attitude over dialogue. She'd been misgendered many times as well, one piece of an overall lack of focus on building relationships at this clinic as opposed to her one at home.  The problem with this clinic, as she describes it, is a lack of interest in understanding each person's individual diagnosis and needs instead of categorization. 

 

At the end of the day, people are best at coming up with their own solutions.  While the prescription and categorization of the medical system is useful in some ways, it doesn't encompass the experiences and needs of the individuals we will encounter in our lives. 

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Making lives better instead of people

It's problem solving. All of the positive examples I've explored so far are about coming up with a solution for an access problem.  Note the language here.  By the problem being access, instead of the problem being the individual themselves, our the framing of the problem switches.

 

My favorite quote from all of my conversations comes from Charlotte. She spoke at length about what she wishes things could be like before arriving at the core of it. She describes the attitude she finds best to be:

 

 “We’re not trying to make you better, we’re trying to make your life better."

 

With social categorization, medical labels, and more, we add complexity that's not always necessary in order to create a solution.  In medicine, we don't need to diagnose the cause of a cough to prescribe cough medicine. ​ Similarly, we don't need the diagnosis of a disability to give accommodations. Yes, accommodations shouldn't be needless.  But sometimes you don't need a doctor's note, you can just listen to hear a person coughing in front of you. 

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Dreaming of a Perfect World

One story sticks with me the most from my interviews. Luke always has to have a caretaker with him for his physical needs, so he's never far from a nurse and his parents.  But for one weekend, Luke enjoyed a totally different life. He had stayed in a cabin at a camp with just a friend, no family, no nurse. Luke's friend volunteered, and never complained, in covering Luke's care needs for the weekend.  This isn't something Luke asked him to do, ever, but through this act of kindness Luke got to experience independence from his family like he never could before.  His friend's actions lifted the burden of accessibility from Luke. Hanging out was just that. 

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Moments like these are what I yearn for.  To think that something could never be possible, and then it is. To never imagine myself as capable of some task, and then one day I complete it.  To sit down and speak to others I never could have dreamed of communicating with.  Miracles can't be mandated, just like kindness, but they can happen anyways.

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I'm not sure that I have many more answers than when I began this investigation, but that might be a good thing.  An open mind and a drive for innovation may actually be the best tools for making the world more accessible. Above else, I want to let myself dream not about what is or should be, but what could be. 

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