Broken frames. Navigating imperfect accessibility frameworks for trauma-informed outcomes

Hi! I'm Josh. Thanks for making your way here. I'm excited to have you around.

Is it ok if I ask you three sets of questions? You don't have to answer them. Just think about them.

1. How are you feeling? If you're not feeling too great, you're welcome to put this down. This chapter isn't going anywhere. Check in whenever you're ready.
2. What does disability mean to you? Do you have a disability? Does someone you know have a disability?
3. What does accessibility mean to you? How has it showed up in your work, if at all? How do you approach it?

If we polled everyone reading this chapter, there's a good chance we'll all have different answers to these questions.

Personally, I'm not even sure how I should answer the second question: “What does disability mean to you?”

That might need some context.

I have CPTSD (complex post-traumatic stress disorder). In plain language, it's a long term trauma that continues or repeats for months or years at a time. For example, a common chronic situation that causes CPTSD is long term child abuse. This is unlike PTSD (post-traumatic stress disorder), which is often a short-lived trauma from an event like a car accident or a natural disaster.

Here's some common symptoms of CPTSD identified by The National Center for Post-Traumatic Stress Disorder:

• Alterations in emotional regulation. May include persistent sadness, suicidal thoughts, explosive anger, or inhibited anger.
• Changes in self-perception. May include helplessness, shame, guilt, stigma, and a sense of being completely different from other human beings.
• Changes in one's system of meanings. May include a loss of sustaining faith or a sense of hopelessness and despair.

Growing up in my religious, immigrant household, I was conditioned into believing these symptoms were a matter of character. Of weakness. Not disability.

As of writing this, the DSM-5 (The Diagnostic and Statistical Manual of Mental Disorders, a key reference for the diagnosis and treatment of mental disorders) agrees. It does not recognize CPTSD as a diagnosis.

So what is it then? Am I disabled? Am I not? And, more practically, how might that impact my interactions with the real world where accessibility is both intentionally (and unintentionally) designed, developed, and litigated?

The answer may largely depend on how you, your team, or your client chooses to define and approach accessibility.

We'll cover two common frameworks to approach accessibility (compliance and inclusive design) and break apart their good intentions vs. their unintended (or intentional) misuses. The goal of this chapter? To encourage you to be more critical of these accessibility frameworks and see them as flawed, adaptable tools to be improved for better and more just outcomes for (and with) disabled people.

Accessibility work is both sensitive and complex; and in the wise words of Rachael Dietkus, “sensitive and complex work cannot and should not be boiled down to a checklist.”

A positionality statement before we start. A little on me! I'm Josh. I grew up in a religious, military, Korean immigrant family and spent the majority of my life in a single-parent household. I also grew up with and around disability. I have CPTSD, a product of my family's intergenerational trauma. My interactions with different disabilities has helped me understand the complexity of it all, and inspires me to demystify disability as a part of the human experience without flattening it into a monolith. As an East-Asian cis man, I have unequal privileges in the context of technology. I'm not an expert, and am not certified in trauma as a profession. Although I am a certified professional of web accessibility by the IAAP (International Association of Accessibility Professionals), I see it more as a quantity of privilege than that of expertise. The majority of what I know is derived from my experience working with Veterans at VA.gov as an accessibility lead, my conversations with colleagues and mentors, and the many books and references you will see attached throughout this chapter. Nothing I write about is new. Many of the points you'll read were contributed by a community of folk who edited this chapter: Silvia, kon, Annie & Andy, Soren, Jan, Sarah, Rachel, Michelle, and more. Love y'all to bits. Simply put, I'm no more than a messenger. An advocate. I encourage you to push back, argue, and engage with what I'm going to write. I hope you dig into my references and read what I have read to understand it from your own perspective. I am sure I will have missed things and made mistakes. To say otherwise would miss the point. Instead, I can only hope this will continue to evolve ongoing conversations around accessibility to be more human, more transparent, more just for more people.

Compliance

Arguably, the most common method of approaching accessibility is through compliance by motivating stakeholders on the basis of legal requirements and penalties. Two key motivators for selecting this framework include:

• Liability. In 2020 there were more than 3,000 web accessibility lawsuits filed in U.S. state courts.
• Objectivity. Most global legal requirements are based on the Web Content Accessibility Guidelines (WCAG), which provides a list of “testable criteria for objectively determining if content satisfies them.”

Liability paired with objectivity is an easy sell. From a psychological lens, it provides an easy “switch” through…

• Direction, here's a measurable checklist of requirements and
• Motivation, you're gonna get sued, buddy.

However, looking at compliance alone without thinking about other frameworks (like inclusive design or justice) will…

• Fail to address the subjective experiences disabled people have with products.
• Fail to acknowledge the existence of trauma.
• Motivate companies to seek quick and cheap solutions.

Missing the point with overlays

For example, take accessibility overlays, or technologies that aim to improve the accessibility of a website. As defined by the Overlay Fact Sheet, “they apply third-party source code (typically JavaScript) to make improvements to the front-end code of the website.”

Screenshot of AccessiBe's homepage.

Overlay companies often make use of a compliance framework that focuses on liability (don't get sued) and objectivity (centering testable criteria). But does this guarantee accessible outcomes?

According to many disabled people, no, as captured in this tweet, “Accessibility overlays are not the answer, and AccessiBe is no exception. As a screen reader user, numerous sites have become less usable for me with this overlay. Discrediting reputable accessibility professionals and advocates will not sway me on this view.”

WCAG agrees. It explicitly notes that, “even content that conforms at the highest level (AAA) will not be accessible to individuals with all types, degrees, or combinations of disability, particularly in the cognitive, language, and learning areas.”

And for people with trauma (many of whom often identify with other disabilities or identify their own trauma as a disability)?

Also, a big resounding no.

Take this hypothetical example of a form (based on a real one I've encountered) requiring people with trauma to recall an event that triggered their PTSD in order to be eligible for disability benefits.

Even if the above example meets all WCAG success criteria, uses an accessibility overlay, and is accessible to some people with disabilities it may still…

• Fail to provide a usable experience. For example, you'll notice this form uses a placeholder as a label. This still technically passes WCAG criteria despite documented memory challenges, low contrast, and poor support. While some of these, like low contrast, may be addressed through an overlay; there are limits to improving bad design through code interventions alone.
• Create unsafe experiences for people with trauma. Forcing participants to relive traumatic experiences without explicit consent or access to support is the opposite of a trauma-informed approach. Yet, a team using a compliance framework would have no legal motivations to pursue improvements given trauma is not explicitly recognized or addressed in existing WCAG success criteria.
• Cause considerable psychological distress which can lead to access trauma. An Australian study suggests that “when discrimination or avoidance occurs in the health system, the resultant psychological distress is considerable.” Failing to design usable experiences for disabled people, regardless of trauma, can be a root cause of trauma. As articulated by Robert Kingett, access trauma stems from “the feeling of the world constantly reminding us that the world we're forced to participate in wasn't designed for us.”

The limits of liability and objectivity

Although liability and objectivity are powerful motivators for an accessibility framework, they can work against teams that consider trauma and other cognitive disabilities in the scope of their work.

• Focusing too much on a compliance framework can set the wrong expectations with stakeholders. They may be empowered to push back on anything that goes beyond minimum legal requirements.
• Assuming objective criteria could even be written and legislated within future guidelines…
  • Not all forms of trauma may be recognized. Again, in the case of my CPTSD, it's unlikely a legal entity will consider a diagnosis that is not standardized by the DSM-5.
  • Relying on objective checklists (instead of trauma-informed design research) will never be a sufficient method for designing safer experiences for people with trauma due to how subjective the experience of trauma is.
  • Not all disabled people may benefit from having their disability codified within a legal framework. As Devon Price notes in the case of autistic people, seeking a diagnosis is expensive, can negatively impact immigration applications, and can automatically disqualify someone from military service in the United States.

And for teams that don't consider trauma as a disability? Ignoring trauma will still impact their work regardless.

Why? People are complex. We carry multiple identities and experiences, and can't be cleanly carved up into flat monolithic identities. For example, PTSD can be a direct result of being exposed directly to serious injury. A Veteran who lost their vision due to a traumatizing incident on the battlefield may be able to access a form using a screen reader thanks to WCAG criteria; but WCAG criteria won't be able to address the potentially re-traumatizing experience of having to describe the details on how they acquired their disability in the first place.

Objectively measurable access fought through fear will never be enough on its own. Consider this account by J. Logan Smilges in Crip Negativity:

“...nothing about my education was inaccessible. I could get into the building and to all my classes. And yet despite all this access, ableism still managed to make my life absolutely fucking miserable. If anything, I wanted less access, less contact with ableds, less time spent in spaces structured by neurotypicality, and less energy expended accommodating me into a community that exploited my neuroqueerness as an opportunity to ossify its superiority. Access didn't eliminate ableism; it enabled ableism to bare its teeth.”

In plain language, J. Logan Smilges is arguing that accessibility measured through objective criteria failed in addressing the subjective discrimination they faced in schooling.

So what can we do? Although it's often necessary to use a compliance strategy to get quick wins or consensus to start accessibility work, there are other, more subjective ways of framing the work around disabled people's experiences and not just a set of legal guidelines.

Inclusive Design

Most people likely turn their heads towards inclusive design at this point.

Given the sheer prevalence of the word “inclusion” and a google image smorgasbord of slumpy shoulder stick figures and corporate silhouettes, inclusive design is undeniably a popular subjective approach towards accessibility.

While the how of inclusive design can be vague, many people still adopt it as a framework because it's a powerful perception shifting tool. Notably, it can be used to:

• Foster empathy. A common talking point is that everyone experiences disability. Microsoft's inclusive design guidebook argues that we all may temporarily experience a disability if we fracture a leg or situationally experience a disability if we're holding a child in one arm.
• Demonstrate universal benefits. For example, you might situationally need captions if you forgot to bring your headphones onto the train.
• Shift focus towards design research. Unlike a compliance framework, it focuses more on the subjective experiences of disabled people when using products and services. This allows for a “shift left” approach away from quality assurance and toward design that accommodates more dialogue on usability, and not just access alone.

Inclusive design, at its best, is conducted in good faith through the lens of Kat Holmes' book “Mismatch.” Instead of attempting to define inclusion itself, she reasons that it's an ongoing practice to recognize and remedy exclusive experiences.

But how about inclusive design at its worst? Inclusive design can be used as a tool to maximize exclusion under the guise of inclusion for corporate power and protection:

• Power. Companies and product teams can retain the power to initiate, lead, and decide which disabled groups and individuals to include (and exclude) based on profitability.
• Protection. Inclusive design can both protect corporations from discrimination lawsuits and foster positive press to guard against criticism.

In or out? Money talks.

As noted earlier, inclusive design is commonly framed by accessibility teams as something that demonstrates universal benefits. Microsoft highlights in their guidebook, “points of exclusion help us generate new ideas and inclusive designs. They highlight opportunities to create solutions with utility and elegance for many people.”

On paper, this sounds like a win-win. Corporations are able to innovate new products that can reach broader markets and disabled people can be involved in the design process of products that they may use in the future.

But disability is more complex than a generalized slumpy shoulder matrix. When we talk about inclusion, who are we actually referring to?

Aaron Chu provides a critique here, noting that “the ambiguity in inclusion and the lack of accountability exposes a danger of an inclusion that's driven by profit. A proponent of personalization and configurations, inclusive design emphasizes the idea of “one-size-fits-one.” But the disability community is diverse. How do companies decide which size fits which one?”

Kat Holmes' spectrum of disabilities.

By following the inclusive design persona spectrum (the aforementioned slumpy shoulder matrix showing different classifications of disability across a spectrum of circumstances from permanent to situational) an accessibility team may arguably co-create something that is easy to use for blind, deaf, non-verbal people, and amputees.

But how about people with trauma?

To break it down, let's return to our prior example of a form for disability benefits.

You'll notice that the prior issues with contrast and placeholders have been resolved. There are clear, extendable benefits to these things. For example:

• Designing for people with low vision helps someone struggling to read content on a smartphone in broad daylight. Higher color contrast is an easy, negotiable win that extends to everyone.
• Using a label as a label (instead of a placeholder as a label) increases the touch target, improves compatibility with screen readers, and resolves pesky memory challenges as typing into the field will no longer overwrite the label itself.

But what if it costs too much to address an issue that has no clear extendable benefits? And, more nefariously, what if there's more to profit from not addressing an issue at all? For example, a product manager may argue that only a handful of people are applying for PTSD as a disability benefit. They may question why they're investing into something that will only benefit X amount of people.

In these cases, Chu points to Josh Halstead's critique on profitability, “Halstead believes that when funding is scarce, companies may allocate resources based on the profit potential of a disability group. This, in turn, affects which disabled groups are included in the design process.”

Unfortunately, none of this is new.

There's a sinister history to evaluating disability from a lens of profitability. Ashley Shew reminds us that, “chattel slavery firmed up disability as a physical category, one centered on which bodies and minds have or generate economic value under taxing working conditions. Disability began to be mapped as the group of physical and mental conditions that limited the price at which enslaved people could be sold at auction.”

It's to no surprise that inclusive design as a framework often falls short when it comes to addressing and prioritizing disabilities that aren't as friendly to a bottom line or can't be solved through the overwhelming (and often traumatizing) nature of the design thinking process.

But inclusion doesn't stop at enabling companies to pick between the disabilities a company finds profitable. With full, unchecked control over how inclusion is defined, companies and product teams can “include” disabled people without designing for their interests at all.

Look at all these disabled people!

A critical gap to inclusive design discourse is how we evaluate and define participation in the process itself. Victor Udoewa provides a general critique here:

“Though there are multiple attempts to measure the effects of participation, without a goal or a definition of participation, it is difficult to evaluate whether empowerment happened or the process was successful, which can be different than the evaluation of the design product or artifact… the success of the participatory process is more important than the design because of the effect and impact of the process on the design,”

Without a clear framework for evaluating what participation (or in this case, inclusion) actually means, companies and product teams can unintentionally or intentionally fill in the gaps based on what is most convenient to them (and not people with disabilities):

For example, all of the following may be marketed as “inclusive design” by a company:

• Creating diverse user “personas” based on “objectified assumptions about end users” to “guide product development to fit stereotyped but unvalidated user needs.”
• Conducting usability testing with disabled people on a new AI feature for a product, despite having an existing backlog of severe accessibility features disabled people have demanded instead.
• Hiring a blind, white, cis-man into an accessibility or DEIA leadership position who deprioritizes the interests of people of color, people with non-vision related disabilities, and the LGBTQ+ community.
• Recruiting and interviewing a diverse sample of disabled people, then flattening their comments into sticky notes where a team of ableds attempt to translate and make sense of those thoughts in time-boxed design thinking sessions using inaccessible activity and support cards from the Microsoft inclusive design guidebook. The sessions have no real purpose other than to convert problems into market opportunities because the team is definitely (sarcasm) qualified to decide what is relevant and what should constitute the needs and problems of their new shiny disability personas. (Sidebar on design thinking. Tim Seitz reflects that design thinking is less about the actual output and more about creating a specific working atmosphere that fits nicely into a corporate calendar.)

In doing so, companies can garden their public image to look “inclusive” to disabled people without doing the hard work. They can even twist inclusion into a tool for mitigating discrimination lawsuits.

Dr. Nancy Leong calls out a couple of common tactics and examples in her book Identity Capitalists:

• “Professing the value of diversity” on a website to “rehabilitate a company's image at a time of negative publicity.” For example, Walmart boasts their efforts towards belonging, diversity, equity, and inclusion despite denying an employee intermittent leave as a reasonable accommodation for severe pain due to a neurological disability affecting her right hand and wrist.
• Using some underserved people to deny discrimination against others. For example, “The Department of Veterans Affairs won a race discrimination claim brought by a Hispanic man who did not receive a promotion for which he claimed he was well-qualified; the court noted that ‘the promotional decision was made by a Hispanic,' which ‘indicates an absence of discrimination.”

Screenshot of Walmart's Belonging, Diversity, Equity & Inclusion page and a screenshot of an article from the U.S. Equal Employment Opportunity Commission.

It's easy to evaluate how effective this framework can play out in the public. For example, can you guess this company?

• They've tested with users with parkinsons who have left feedback saying, “your product makes it easy for me!”
• Their website features a blind man quoting that “accessibility is the right thing to do.”
• They quote and showcase an immense diversity of disabled people on their social media pages.