Digital accessibility and disability inclusion
A landscape with green pasture in the foreground, a flock of grazing sheep, a pale green crop field, a swath of forest in full fall colors, and hills patch-worked with crop fields. Thick clouds hug the horizon and blanket the sky overhead, with a band of cloudless sky in between.
What can we learn from healthcare quality initiatives to help us make progress in improving the quality of the technology we rely on for our health and well-being, focusing specifically on measures related to accessibility for people with disabilities?
In the early 2000s I did consulting work for the Dartmouth Hitchcock Medical Center in New Hampshire. DHMC had data about its performance for different quality measures that it could compare against other hospitals and against the national average. They wanted to make this data available on their website, to help patients and families make informed decisions about where to put their trust and get their healthcare.
I created prototypes for a new section called Quality Reports and evaluated the designs with patients and families. The Quality Reports feature reported comparative data on how well DHMC measured up against the top 10 hospitals and the national average on a variety of diseases, procedures, and cost comparisons.
The measure included what seemed like little things, like “Aspirin at discharge: Percent of eligible patients a prescription for aspirin when discharged from the hospital after a heart attack.” And obvious things, like “Advice for heart attack patients to quit smoking: Percent of eligible heart attack patients who were advised to quit smoking.” And really big and scary things, like “In-hospital heart attack mortality rate: Percent of patients admitted for heart attack who die while in the hospital.”
Since working on the project back in 2003, access to hospital quality data has evolved and expanded. DHMC still publishes the overall quality and safety scores and detailed ratings on patient experience. But today’s best source for this type of data is the Care Compare feature on Medicare.gov, launched in September 2020. The site combines multiple “find and compare” tools to allow people to compare facilities and providers as well as hospitals. DHMC’s quality measures are available, and you can customize comparisons, for example, by comparing DHMC with other acute care hospitals in the region.
The DHMC project and subsequent developments are an outgrowth of the Hospital Quality Initiative (PDF), which developed measures and data collection protocols and provided open access to quality measures using Hospital Compare, which was launched in 2005. The objectives of the Hospital Compare feature are to:
Let’s break down the components of a measure by looking at the three measures from above: aspirin prescribed at discharge, advice to quit smoking, and hospital deaths. The following table includes three elements of a measure: the measure name, description, and rationale for including it as a measure. Many other elements are defined for each healthcare quality measure, but let’s focus on these three.
| Measure | Description | Rationale |
|---|---|---|
| Aspirin Prescribed at Discharge | Acute myocardial infarction (AMI) patients without aspirin contraindications who are prescribed aspirin at hospital discharge. | Aspirin therapy in patients who have suffered an acute myocardial infarction reduces the risk of adverse events and mortality. Studies have demonstrated that aspirin can reduce this risk by 20% (Antiplatelet Trialists’ Collaboration, 1994). National guidelines strongly recommend long-term aspirin for the secondary prevention of subsequent cardiovascular events in eligible older patients discharged after AMI (Antman, 2004 and Smith, 2001). Despite these recommendations, aspirin remains under-utilized in eligible older patients discharged after AMI (Jencks, 2000). |
| Adult Smoking Cessation Advice/Counseling | Acute myocardial infarction (AMI) patients with a history of smoking cigarettes, who are given smoking cessation advice or counseling during hospital stay. For the purposes of this measure, a smoker is defined as someone who has smoked cigarettes anytime during the year prior to hospital arrival. | Smoking cessation reduces mortality and morbidity in all populations. Patients who receive even brief smoking-cessation advice from their care providers are more likely to quit. National guidelines strongly recommend smoking cessation counseling for smokers hospitalized with AMI (Fiore, 2000; Antman, 2004; and Smith, 2001). Despite this recommendation, smoking cessation counseling is rarely provided in eligible older patients hospitalized with AMI (Jencks, 2000). |
| Inpatient Mortality | Acute myocardial infarction (AMI) patients who expired during hospital stay. | Mortality of patients with AMI represents a significant outcome potentially related to quality of care. This rate-based indicator identifies an undesirable outcome of care. High rates over time may warrant investigation into the quality of care provided. |
We can learn a lot by exploring the many dimensions and connections that make this type of initiative possible, and to ideate how a similar approach might be used to invigorate efforts to improve quality in digital accessibility.
Borrowing this model from healthcare, let’s envision a Technology Accessibility Quality Initiative — we could call it “TechAqui” — with these stated objectives:
Sounds great, right? Imagine being able to compare accessibility features of different technology to choose the best, most accessible option, and to watch accessible options grow more numerous as technology companies make accessibility core to their values and operations and become more competent at building to accessibility standards.
For measures, we need to measure what matters — little things, obvious things, and big things. Using the structure above as a model, Technology Accessibility Quality Measures might include:
| Measure | Description | Rationale |
|---|---|---|
| Accessibility email address | Dedicated email address for accessibility-related communications. | A dedicated accessibility email address, such as accessibility@acme.com, provides a communication channel for people who have accessibility-related questions, concerns, and feedback. An accessibility email address allows the organizations to monitor and track reported accessibility issues and take programmatic measures to correct them. |
| Accessibility webpage | Dedicated webpage for accessibility-related communications. | A dedicated webpage provides information for people seeking accessibility information. Some accessibility regulations require organizations to post a “public notice” with information about the organization’s accessibility program, including contact information and grievance procedures. |
| Executive leadership | Accessibility program leader with cross-organizational authority and influence. | An executive leader can establish and maintain accessibility as a core value, guiding principle, and common practice, requiring individuals within the organization to prioritize accessibility in their work. Other technology quality initiatives benefit from executive leadership, e.g., Chief Security Officer, Chief Privacy Officer. |
We have constructed a digital world that largely does not follow accessibility standards. As our reliance on technology grows, so does the urgency to build for accessibility. Inaccessible technology prevents people from essential activities, such as working, learning, getting healthcare, and taking care of others. When we use technology in high-risk contexts, accessibility barriers could cause significant harm to health and safety.
We in the technology industry have a lot to learn from healthcare about how to take our role seriously. A comprehensive set of Technology Accessibility Quality Measures would be a good starting point, helping define quality and motivate professionalism in a field the sorely needs it.
Let me know if you would like to explore this idea further. You can always reach me at sarah.horton@gmail.com or @gradualclearing.
Download slides from #a11yTOConf session, Accessibility Quality Indicators ~ Love Made Visible: Accessibility Quality Indicators #a11yTO 2020 (PPT).
Much-needed tools for meaningful discussions, from the Design Thinking for Educators Toolkit, by Riverdale Country School and IDEO.
When signing up to be an “IHEG Insider,” the question “What is your gender?” is asked using a radio button control. The control is presented with two options: “Male” and “Female.” The question is listed as “Required Information” on the signup form.Radio button controls are the most insistent of all user interface patterns. They force us to choose one from a set of options, on the premise that we will not have more than one answer or that our answer is not “It depends.” Radio buttons are a mutually exclusive input control that user interface designers reserve for cases where the system needs to ask a question that can have only one answer.
Technology is a mirror. It can respect and reflect our diversity or deny and divide us. Read Radio buttons define us. Let’s make better tech for perspectives on collecting gender information.
My mother and I are trying set up the Photo app to automatically import photos from her phone. Since my father died in June, she has been using her phone much more, including the camera. At family gatherings she takes photos of people, couples, and families. They are some of the best photos, since we are at our most beautiful when smiling at someone we love dearly.
We are trying to log into the iCloud account set up by my father, using Apple’s iForgot service — an unfortunate and insensitive name for our use case.
Our tendency to push edge cases to the margins of interaction design has painful consequences—in this case, after my father died.
Read Design for when there is no “later” on Medium.
We don’t always know what words to use when talking about disabilities, and this keeps us from having important conversations and making progress.
We all have disabilities. Those of us who fall into the category of “disabled” are people whose conditions are considered limiting enough to need accommodations in order to be self-sufficient and live independently. That said, the disabling effect of conditions can be dependent on context.
Disability becomes a handicap only when we encounter barriers.
—George Covington and Bruce Hannah, Access by Design
Design can make a condition disabling—or irrelevant. And technology has a huge role to play in minimizing barriers. We must be able to talk about disabilities without letting awkwardness about language get in the way.
We all want to be considered for who we are, not only our age, gender, clothes, or hair color. A disability is one attribute of many. It does not define a person.
People-first language is a concept that emphasizes the person first—“people with disabilities” versus “disabled people,” “person who uses a wheelchair” versus “wheelchair-bound.” It also minimizes negative connotations of disability—“disabled” versus “handicapped,” a person “with muscular dystrophy” versus “afflicted by muscular dystrophy.” Using a people-first approach when talking about disabilities may help alleviate concern about saying the wrong words.
The people-first approach is based on a conceptual framework of placing the actor (“person”) before the attribute (“who is blind”). There are other schools of thought, including inclusive language in the UK.
The table below is adapted from the helpful Resource Guide for Teaching Students with Disabilities (PDF) from Cornell University. The purpose of the table is to demonstrate the difference between affirmative and negative phrases, and to show a “people-first” framework for talking about disabilities.
Words matter and people matter. But let’s not let hesitancy about using the right words keep us from talking about how to minimize disability through technology and design.
| Affirmative phrases | Negative phrases |
|---|---|
| Disability, disabled | Defect, crippled, handicapped, invalid |
| Non-disabled, person who does not have a disability | Normal, able-bodied |
| Person who is blind, person who is visually impaired, person with low vision | The blind |
| Person who is deaf, person who is hearing impaired, person who is hard of hearing, person who has hearing loss | Suffers from hearing loss, deaf |
| Person who has multiple sclerosis | Afflicted with multiple sclerosis, suffers from multiple sclerosis, victim of multiple sclerosis |
| Person with epilepsy, person with a seizure disorder | Epileptic |
| Person with depression | Suffers from depression |
| Person who uses a wheelchair, wheelchair user | Wheelchair-bound, confined to a wheelchair |
| Person who is unable to speak, nonverbal | Dumb, mute |
| Person of short stature, person who has dwarfism | Dwarf, midget |
| Person who stutters | Stutterer |
Table adapted from Cornell University Resources Guide for Teaching Students with Disabilities (PDF) section on “Communicating with People with Disabilities”
Where did you go
when I had my back turned
and my hands in the sink,
washing the dishes we dirtied
on this evening of excess,
and you said my soup made your groin
ache and your chin tremble, and
I leaned forward, laughing,
and put my hand on your arm,
then I stood to collect the plates,
stacking them up my arm like
a row of buttons, and you remained
seated until halfway through washing the pile
of dishes, I was alone again, and my
gut turned cold and mean and began to
eat itself for spite because I realized
I had just dined on soup from a can
and you were never there at all.
In the past years I’ve often found myself in the role of change agent—someone responsible for advancing new ways of doing things. It’s the most challenging role I’ve ever held, and I’ve reflected quite a bit on what works and what doesn’t. More recently I’ve been in the role of assisting other change agents. I have had to move beyond reflection to being able to articulate beliefs, approaches, and methods.
The expression “herding cats” had to have been coined by a change agent. It’s hard work, advancing a new program or belief—particularly one that is not widely valued within the community. Getting a group of freethinking individuals headed in the same direction can require coaxing, cajoling, and treats.
Not everyone is inclined to cat herding. I’m more of a dog person, myself, and believe effective change management needs more of a pack approach, with clearly defined roles and strong leadership.
Here I outline some key factors that influence success in leading and governing change to integrate accessibility into culture and practice within an organization.
For the Harvard Web Publishing Initiative we started each new project with a project charter. One of the key components of the charter was a section on project governance, where we identified roles. To create the governance matrix we asked questions like, Who has the authority to initiate the project? Who has the authority to approve the design? Who is responsible for defining the strategic direction? Who is responsible for the quality of the content? Who is accountable for misinformation? We required that they identify one person in answer to each question.
Projects worked best when these three attributes came together—when the person responsible for taking action also had the authority to make decisions and was accountable for the result—for example, when the person responsible for developing content also had authority to make decisions about content strategy and was accountable for misinformation. Projects that were more difficult to bring to fruition were those where the roles were divided among team members, or where the understanding of defined roles was not clear, or the roles were not universally accepted and heeded. All the projects in the initiative were successful in the end, but in some cases, progress was more challenging.
For accessibility to be successfully integrated into an organization, everyone involved in making decisions that affect accessibility needs to understand their role and responsibilities, and appreciate how their decisions affect the ability of others in meeting their responsibilities. Starting from a governance structure that everyone understands—and believes in—is a key step in advancing toward a practice of accessibility.
At The Paciello Group, or TPG, we help organizations achieve and sustain accessibility in their digital product and service offerings. I would characterize many of these efforts as “disruptive” in the sense that accessibility is not always universally valued, within the organization or in the market it serves.
That said, in many cases accessibility is a requirement, and there is a growing understanding within product development that, while retrofitting for accessibility may meet obligations, it is costly and the result is not satisfying for anyone—the equivalent of putting a wooden ramp on the side of a building to provide access. Instead of waiting until QA to consider accessibility, product development teams are taking a more mature approach to accessibility, and are looking to increase their knowledge and skills, and embed accessibility into their processes from the start.
Because this shift in approach requires organizational change, one person typically leads the activity. The role is often characterized as an “accessibility evangelist”—a person responsible for organizing the effort, raising awareness, providing training and resources, reviewing products and identifying accessibility issues for repair. This is usually not a senior role within the organization. It is often someone in an existing role within the organization who has an interest in supporting people with disabilities.
I remember one of my good friends, Professor Mark Williams, commenting to me at some point when I was at Dartmouth, “So you have been given lots of responsibility and no authority.” I don’t recall the specific project he was referencing. Many of my projects relied on my ability to persuade people of the validity of taking a certain path, and the strength of the commitment of the community. But his observation helped me understand at least one reason why the work was so difficult.
Now that I am advising organizations on how to advance accessibility, I believe one key is to move away from roles that have responsibility but no authority, and that rely on persuasion and good will to be successful. Accessibility means changing values and culture. To successfully shepherd a community through fundamental changes, we need to give the people with responsibility for making things happen the authority to make decisions.
With authority and responsibility come accountability. Accessibility in practice requires significant change to processes and skillsets. It also involves making accessibility a “non-negotiable” requirement, on par with security and privacy. Those responsible for implementing accessibility in practice must also be given the authority to make decisions that influence its success, and must be held accountable when products are released with features that do not comply with accessibility standards, and are found to be inaccessible.
Moving from assigning an “accessibility evangelist” to making someone accountable for inaccessible products is quite a leap. Very few organizations have raised their accessibility program to such a stature. A search for “Chief Accessibility Officer” on LinkedIn returned seven (7) results. But organizations that are truly committed to building accessible products would be wise to make the leap.
Because what’s the likelihood of getting a herd of cats to go in the same direction? By identifying a person who can lead the initiative— someone who has the authority to define roles and responsibilities and who is responsible for ensuring accessibility obligations are met—organizations can take long strides verses short, incremental steps toward building a culture and practice that supports accessibility.
As noted, not many organizations have made accessibility a “chief” concern. I think we will see more of this level of commitment in the coming years. In my opinion we should be appointing Chief Experience Officers with accountability for accessibility as part of providing a quality user experience. But that’s a topic for another day.
In the meantime, how do we make organizational progress toward building capacity and support for accessibility, without leadership and governance?
BJ Fogg has a “flip book” that I love called Designing for Lasting Change. It’s a great source of insight and inspiration, confirming the value of “baby steps” and providing encouragement to hold fast in advocating for radical change. I highly recommend giving it a read, and keeping it close at hand.
Here are some thoughts for baby steps:
As BJ Fogg notes, “Don’t underestimate the concept of small changes.” Incremental steps put people on the path to bigger changes. Making accessibility easy and part of existing practice will build momentum and lead to more significant changes.
It’s been a year since I made the leap from higher education to a job in accessibility at The Paciello Group, or TPG as we are more commonly known. Here in my anniversary post I reflect on some of the good stuff that’s happened this past year.
Whitney Quesenbery and I completed our book, A Web for Everyone: Designing Accessible User Experiences, and Rosenfeld Media sent it out into the world in January 2014. We’ve been getting great feedback about how accessible and usable the book is, which is just what we were shooting for—to make accessibility approachable and achievable. There’s an excerpt from the interaction chapter at A List Apart and the personas are on UX Magazine.
We included interviews in the book, which we really enjoyed doing—chatting with people in the accessibility community about topics near and dear. We wanted to keep doing that so we launched A Podcast for Everyone, with help from Rosenfeld Media, UIE, TPG, and O’Reilly. We plan to keep cranking out episodes every two weeks, indefinitely.
My work at TPG has been intense—in a good way. I started out doing technical reviews of websites, web applications, mobile sites and apps, desktop apps, even telephone services. With my TPG colleagues—the best accessibility mentors in the world (and who are, incidentally, located all over the world)—readily available in my Skype window, I learned a ton about the technical underpinnings of accessibility in digital products and services. I continue to learn new things from my colleagues every day. Today I learned about taps, swipes, and other touch events from Patrick Lauke.
The other focus of my work at TPG has been on building out a practice of Accessible User Experience. TPG has been doing user research activities for a long time, and when I came on board I was tasked with formalizing and building out those services. Fortunately, TPG hired David Sloan around the same time as they hired me. Dave worked for many years as a researcher, teacher, and consultant at the University of Dundee and is an expert the impact of accessibility on user experience. We’ve been reviewing mockups, wireframes, and prototypes to advise on accessibility implications at the design phase. We had several user research engagements, doing stakeholder interviews and usability studies. We have a series of Accessible User Experience training webinars that teach ways to bring accessibility into UX activities. We had a really interesting and challenging engagement creating a roadmap for integrating accessibility into the culture of a large multinational.
Overall, it’s a great time to be working in accessibility with a focus on user experience. Companies are becoming more aware that accessibility cannot be addressed after-the-fact and result in an acceptable outcome for anyone. The costs are high, for producer and consumer. I look forward to continuing work with my TPG colleagues and the accessibility and user experience communities to bring accessibility into user experience, so that products and services are accessible and enjoyable for everyone.
