Inclusive Research: Making Research Accessible to People with Disabilities

What is our role as qualitative researchers? To discover the whys behind behavior? To help our clients understand their customers and constituents? What if we told you there is a significant population of people we regularly ignore, sometimes on purpose, and ignoring them is not only an ethical and legal liability, but also a disservice to our clients?

We’re referring to people with disabilities. As people and professionals, we have an ethical and legal responsibility to make our methods accessible to people with disabilities, and our profession is found wanting in this respect. We believe we can make a few simple changes and an overall greater effort to change that.

Understanding Disabilities

The world of disabilities is broad and complicated. Creating abstractions helps make it easier to understand. For example, the Canadian National Association of Disabled Students (NEADS) categorizes the types of disabilities this way:

Physical Disabilities – These affect a person’s mobility and dexterity and may include loss of limbs.
Visual Impairments – Only 5 percent of people with visual impairments are completely blind, and these impairments can be caused by many different factors.
Intellectual Disabilities – These affect a person’s ability to learn or process information and can also inhibit their ability to communicate what they know.
Hearing Impairments – People don’t have to be completely deaf to qualify as hearing impaired. If a person loses their hearing after the age of 3, they can retain good speech and lip-reading ability.
Speech Disabilities – This includes stuttering and the inability to utter sounds clearly.
Psychiatric Disabilities – This is the most commonly misunderstood disability category. These can be related to stress, major depression, bipolar disorder, anxiety, and schizophrenia. Depression is the most common form of these disabilities.
Neurological Disabilities – This category is associated with damage to the nervous system resulting in the loss of physical or mental function.

While these categories are helpful, we should recognize that people often don’t fit neatly in a single category. They often qualify under multiple categories. Also, keep in mind there are many variations under these categories. For example, someone who has a visual impairment can be anywhere from color blind to completely blind. They may have been born with their impairment or they may have become blind later in life.

Disabilities are not always visible or obvious. People can be disabled but appear completely able-bodied at first glance. Trust the person in front of you. If they say they have a disability and need accommodations, believe them.

People with Disabilities as a Market

While it would be great if we could convince our clients to do inclusive research simply because it’s the right thing to do, we’re practical enough to know righteousness isn’t enough. There has to be a financial incentive. So let’s look at the numbers.

According to Pew Research, in the United States, more than 6 percent of the population identifies as having a disability. However, that statistic depends on self-reports and may be inaccurate. Sometimes people may technically qualify as having a disability, but don’t think of themselves that way. The largest consumers of health care services and products are people with disabilities but they are rarely incorporated in health care research. This ignores a $400 billion USD a year market and a quarter of all health care expenditures.

The disposable income of people with disabilities is comparable to other desirable target markets. According to the Amercian Institutes for Research, the disposable income of people with disabilities in the U.S. is $490 billion. Compare that to the disposable income of African Americans, which is roughly $501 billion.

Let’s compound this argument with the fact that people become more likely to be disabled as they age. According to the National Institutes of Health, while 21 percent of people 15 years or older qualify as having a disability, that number jumps to 50 percent when we look at people 65 and older. Remember, the global population is aging. This means the number of people with a disability in the world is guaranteed to increase over time.

Legal Implications of Disabled Exclusion

The Americans with Disabilities Act (ADA) was signed into law in 1990. It mandates that people with disabilities cannot be discriminated against for jobs, education, transit, and public space. A landmark lawsuit against Target in 2008 determined the Internet also counted as a public space and therefore should be accessible to people with disabilities. The lawsuits haven’t stopped there. Between 2017 and 2018, there was a 277 percent increase in accessibility lawsuits under the ADA.

If the ADA requires businesses to eliminate barriers against inclusion, can we as researchers honestly say that we are in compliance? Could we be held legally liable?

Why Make Research Inclusive

If the past few years in media has taught us anything, it’s that visibility matters. Not only is seeing people like yourself in positions of power and influence empowering, it’s a wake-up call for everyone else. It is nearly impossible to create solutions to problems you were never aware of. Bringing marginalized people to the forefront of any creation process is a great way to promote visibility and accessibility to our clients.

Tech companies are increasingly getting on board. Companies with a web presence that do not build and test for accessibility are vulnerable to lawsuits. Ignorance and infrequent occurrences are no longer excuses. Top people in technology recognize solving for these infrequent cases make their systems easier for everyone to use. Although sites and apps can be technically accessible under official guidelines, it doesn’t mean the site is usable by people with disabilities. Research and testing inclusively matters.

A study in Australia by the Centre for Inclusive Design showed that adding inclusive elements to an existing product can increase development costs by 10,000 times compared to a product that was designed to be inclusive from the beginning.

When clients ask for creative workshop participants, suggest incorporating people with disabilities. They tend to work their creative muscles far harder than people without disabilities on a regular basis. Their lives depend on it. Thinking about snack packaging is small potatoes in comparison to navigating how to make dinner when you’ve lost the use of one of your arms.

Governments should also be looking to listen to people with disabilities if only because of the fact that these people are also their constituents. A ban on drinking straws was considered no big deal to most people, but for people with certain disabilities, not having access to a plastic straw means they cannot drink fluids. Talking to people with disabilities during the policy development process would have brought this to people’s attention.

In-Person Qualitative Research

When booking a facility to conduct in-person research, carefully verify their accessibility. People mean well but often don’t know if their facility is fully accessible. Check:

Will the room and hallways accommodate wheelchairs?
Are there automatic doors and elevators, and are these easily accessible?
Will the bathroom accommodate a wheelchair, and can they get to it easily?
Are the tables high enough? Are they height adjustable?

It will be more difficult for someone with a disability to come to you, so expect to pay a higher incentive.

Of course, all of this can be avoided by offering to do the session remotely or offering to go to their home or other location of their choice. That will make everything much easier.

Recruiting

You can work with your usual recruiting partners, but often they are not prepared to handle this kind of request. Recruiters who specialize in people with disabilities may be unprepared or unwilling to do a partial recruit to incorporate a few people with disabilities into the study. You can also try partnering with a services or advocacy agency, but they usually prefer maintaining ongoing relationships rather than one-off projects. While there are no perfect answers right now, we believe if we keep pushing for these services in our regular recruiting requests, it will become easier over time.

When Lauren was regularly recruiting people with disabilities for usability testing at a telecommunications company, it was a learning process. When she started, the recruiter sent her people with disabilities, but their disabilities didn’t necessarily affect their ability to use or comprehend the digital products being tested. Eventually, Lauren learned to incorporate specific questions into screeners that directly related to the project at hand. For example, she added the following three questions into a recent screener:

Would you describe yourself as a person with a disability?
If yes, how do you define your disability?
Does your disability affect your ability to do any of the following activities?
Going from place to place
Reading a book
Using the Internet
Communicating directly with others
Completing household chores
Using a smart phone app
Taking part in civic activities

If they said yes to question one, and either C or F to question three, they would qualify for the study because their disability affects their ability to use the product being tested.

We would also include detailed instructions for how to join the session remotely and how to reach us if they had any problems. If the session was in-person, we would include further details on getting to the facility, including:

Nearest parking for people with disabilities,
Nearby public transit options,
Where the accessible entrances and elevators were located,
How to get to the accessible washroom,
What to expect during the session,
An offer to receive feedback to make the session easier for them to participate.

Also, if you can provide your participation instructions in written, audio, and visual formats, that’s great. People are usually able to process at least one of these three formats.

Etiquette and Consideration

A lot of the apprehension about working with people with disabilities is that we don’t know how we can interact in a way that is personal and respectful. Here are some simple ground rules:

Use person-first language. Recognize their humanity before their disability. This applies to your interactions with the clients, the facilities, the recruiters, and possibly the participant.
- Instead of saying someone is autistic, say they are a person with autism.
- Instead of saying someone is paraplegic, say they are a person with paraplegia.
Speak directly to these participants, not to their interpreter. Make sure you have their attention before you start speaking.
Ask if they want your help before giving it.
Don’t touch them, their assistive devices, or their service animals without their permission.
Be attentive and patient when talking with someone who has difficulty communicating.
If you don’t know what to do, how to address someone, or how to put them at ease, ask them.

When you’re doing your rapport-building, be considerate of the types of disabilities in the room or online. One time Lauren had to interview someone with severe cerebral palsy. He was wheelchair bound and had difficulty speaking. Lauren’s usual
rapport-building subjects of cooking, running, and volunteering with a bike parking service were not going to connect with this person and she had to think fast. If you are in a situation where a physical activity is not going to connect with your participant(s), try talking about the books you like to read, a TV show you are currently binging, or a movie you recently saw. You can get as creative as you like, if you keep in mind the physical, mental, and emotional limitations of the person in front of you.

Online Qualitative Research

Our research methods and practices should be accessible to people with disabilities online and a good place to start is by asking our research platform providers if they are WCAG 2.0 or 2.1 compliant. WCAG stands for Web Content Accessibility Guidelines. It was developed by a governing body of web practitioners known as the W3C, World Wide Web Consortium. The guidelines state that web content should meet the criteria bulleted in the sidebar accompanying this article.

What You Can Do to Ensure WCAG Compliance

It’s not always up to the software and web platforms to be compliant. You can also do your part.

Make sure your color contrasts are strong enough to tell the difference between text, links, and buttons by using an online tool.
White space is great, but if there’s too much of it, people using magnifying functions can get lost.
- Error messages make it clear how you expect people to format the answers to the questions. These should be located above the question and answer so screen readers will see them as related. Think about a time when you entered a faulty piece of information while trying to buy something online. A good system will tell you what went wrong and tell you where and how to fix the error.
Make the online navigation and participant instructions as explicit as possible.
Use words with pictures and pictures with words for people who may be able to perceive one, but not the other.

You can ask your participant what aids they use for their computer and navigating the web and see if those devices are compatible with the platform you are using. If they are not, try to find a workaround or an alternative to the platform you’ve chosen.

More about WCAG Guidelines

This is generally what we are asking for when we ask our software providers to be WCAG compliant.

The actual guidelines of the WCAG are much more specific.

Perceivable

- Incorporate text alternatives with visual stimuli. This helps people with low vision by providing text descriptions of photos.
  They may not be able to see your photo, but they will be able to hear the text using a screen reader program.
- Use captions and text summaries for videos and audio recordings.
- Make sure content is programmatically labeled (coded within the web page) to be read in different ways (i.e., by screen readers for people with low vision).
  Links, search fields, buttons, pictures, etc., are all labeled as such within the code of a webpage so a computer program can tell a person with low vision what it is.
- Design elements should be easy to read (font sizes, color contrasts).

Operable

- Participants can operate the page with only a keyboard.
  People with low vision or mobility issues may not be able to use a mouse or a trackpad. They often use keyboards or some other navigation aid to progress through a website or computer program.
- The software or program must allow plenty of time to perform tasks.
- The visual display doesn’t cause seizures.
  Avoid flashing lights, strobing effects, and loud sudden noises.
- Tell people how to proceed with words and symbols (such as NEXT>).

Understandable

- Use easy reading levels.
  Some people learned to communicate with sign language, making written English their second language. Keep your language simple and direct. This is also helpful for doing research with immigrant populations.
- The design is predictable.
  This is a fuzzy concept, but essentially it means designing with familiarity in mind. Think about how you can almost always figure out how to shop at any given online retailer. It is because they use many of the same design elements.
- Help people avoid and correct mistakes.
  We’re all human, and we make mistakes. Good systems give users the opportunity to go back and fix things or provide ways to avoid making those mistakes in the first place.

Robust

- Provide maximum compatibility with as many web browsers as possible.

Conclusion

Don’t get us wrong. This is hard, and even though we think about this a lot, learn about it, and try to incorporate it into our work regularly, we’re still struggling. We expect inclusive research to be something we’ll always have trouble with. However, it’s important that we, and our professional community, keep pushing for this because our role is to surface the voices and truths of people who would otherwise go unheard. People with disabilities are far too often ignored.

For Further Reading

Making Extra-Curricular Activities Inclusive, National Educational Association of Disabled Students. (2019, October 30). Retrieved from www.neads.ca/en/about/projects/inclusion/guide/pwd_01.php
Inclusive Design, Microsoft Design. (2019, January 22). Retrieved from www.microsoft.com/design/inclusive
7 Facts about Americans with Disabilities, Pew Research. (2019, October 30). Retrieved from www.pewresearch.org/fact-tank/2017/07/27/7-facts-about-americans-with-disabilities
A Hidden Market: The Purchasing Power of Working-Age Adults With Disabilities, American Institutes for Research. (2018, April 06). Retrieved from www.air.org/resource/hidden-market-purchasing-power-working-age-adults-disabilities
“Huge Financial and Social Benefits to Inclusive Design, Report Shows,” Marketing magazine. (2019, October 30). Retrieved from www.marketingmag.com.au/news-c/news-inclusive-design-disability