What people living with disability can teach us

The Pew Internet Project recently issued a short report noting that people living with disability are less likely than other adults in the U.S. to use the internet: 54%, compared with 81%. The first question many people ask when they hear that is, Why? The second is, What can be done? The third is, or should be, What can we learn from this?

Why?

Statistically speaking, disability is associated with being older, less educated, and living in a lower-income household. By contrast, internet use is statistically associated with being younger, college-educated, and living in a higher-income household. Thus, it is not surprising that people living with disability report lower rates of internet access than other adults.  However, when all of these demographic factors are controlled, living with a disability in and of itself is negatively correlated with someone’s likelihood to have internet access.

Just 2% of American adults say they have a disability or illness that makes it harder or impossible for them to use the internet. Eight percent of people living with a disability say this is true. However, this estimate is based on a telephone survey, which does not include people who are not able to use either a landline or cell phone due to hearing loss. If you are interested in more details on this issue, Evans Witt, CEO of our polling firm, Princeton Survey Research Associates International, recommends the following article:

Inclusion of People With Disabilities in Telephone Health Surveillance Surveys,” by Susan Kinne, PhD, and Tari D. Topolski, PhD [PDF]

What can be done?

Three articles covering our report did a nice job of laying out some answers to this question. Please note that my job is to provide data points like the ones listed above so other people can map solutions. Neither I nor the Pew Internet Project takes positions on policy issues or makes recommendations about how to “fix” problems that some people see when they encounter our objective data.  I’m providing the following links as context for discussion.

Pew: Disability or illness hinders many Americans from using the Internet,” by Alex Howard, Gov20.govfresh.com

For the disabled, just getting online is a struggle,” by Wilson Rothman, MSNBC

What are the barriers to the Internet for people with disabilities?” by John Moe, Marketplace Tech

The best quote came from Tom Foley of the World Institute on Disability, who talked in the Marketplace piece about the expense of screen readers, Braille displays, and other accessible technologies. When asked why broadband is important to people living with disabilities, he simply says, “I’m a blind guy… I can do research online. I read the Pew report when it was emailed to me. Twenty years ago I couldn’t do that as a blind person. But with access to the internet and access to accessible technology, all those opportunities are open to me…I can become better educated, I can get a better job, I can pay my mortgage, I can pay my taxes, and I can send my kids to college.”

What can we learn?

Dean Karavite, Lead Human-Computer Interaction Specialist at the Center for Biomedical Informatics, Children’s Hospital of Philadelphia, was one of the first people I emailed when I released this report. We had met at the Connected Health Symposium in Boston, where he discussed emerging technologies for people with disabilities.

His response intrigued me:

“My first reaction to the report was depression, but I think that’s a good thing. The data is sobering. I may be wrong, but my interpretation is the ‘digital divide’ is alive and well for people with disabilities…

“[In an upcoming project] we will be applying HCI/usability methods to an assessment of the contemporary PHR (patient portal – as provided by HIT vendors linking patient to physician) to support the requirements of people with disabilities. The foundation of this work is to create detailed use cases/scenarios (what are the important tasks people need to perform?) and couple these with detailed user profiles.

“Up until now I was, in my mind, concentrating on types of disabilities for our profiles, but your report has me thinking more broadly (and will be an invaluable resource). For example, in assessing the current PHR, we need to include response time over dial up. When I worked at IBM we actually had a standard for system performance (I believe it was a screen had to download at 7 seconds on a dial up line with a 56k modem). Sadly, I thought this type of thing was no longer needed, but obviously not. My own PHR with my doctor’s office takes about ten seconds per page on a very fast cable modem. However, I think the lesson here is beneficial to everyone – create applications that are lean, efficient and fast. A person with a disability and a 56k modem has similar requirements to someone using a mobile device – performance![emphasis added]

That insight reminded me of a bedrock usability principle from the early 2000sany improvement made to a website’s navigation that favors older users also benefits younger users. Everyone completes tasks faster if the navigation is clear.

I would love to see Pew Internet data spark more insights, conversations, and stories like the ones listed here. Please let us know if you have questions we can address in our research!

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Comments

11 Responses to “What people living with disability can teach us”

  1. I will agree with Dean’s comments – the coming together of usability and accessibility means that while the “divide within the divide” (a term coined by NCAM staffer Mary Watkins) is unfortunately still very real, the needs of the larger community will bring additional solutions and expertise to bear on the problem of access to technology for people with disabilities.
    Of course, one cannot discount the correlation of low employment rates among people with disabilities and the cost of broadband. But even with such subsidies as the recent announcement of Comcast’s $10/mo. plan, there is simply too many reasons for many people with disabilities to be frustrated by both the form and content of the Internet.

    Next Pew study?: which web sites do people with disabilities visit most often? And why?

    Larry Goldberg, Director
    WGBH National Center for Accessible Media

    • Susannah Fox says:

      Thanks, Larry!

      For those who don’t know his organization, NCAM stands for National Center for Accessible Media, a “non-profit R&D organization dedicated to achieving media access equality for people with disabilities.”

      http://ncam.wgbh.org/

      I love the idea of finding out which online resources are most useful to people living w/disability. Pew Internet just completed a non-representative, online survey of members of the National Organization for Rare Disorders which provided respondents the opportunity to tell us about favorite websites. We’ll publish some of the results on Rare Disease Day, Feb. 28.

  2. Jim Tobias says:

    Thanks so much for doing this study, and I hope we’ll see more from Pew on this topic. Like many other accessibility advocates, I was taken aback by what looks like a lower number of people whose disabilities jeopardize their use of the Internet — we’ve been using numbers like 30 million, based on aggregated Census numbers and assumptions about people with multiple functional limitations. So perhaps we’ll all dig deeper as we move ahead. I’d encourage you to contact, if you haven’t already, the Interagency Committee on Disability Research, which has a Subcommittee on Disability Statistics.

    If I could suggest a follow-up to this study, it would be to break down Internet use into its many separate functions, such as ’email’, ‘buying something online’, ‘watching videos’, etc. I think Pew has done this before, and found a lower ‘function count’ for people with disabilities. If there are certain functions that users with disabilities are underutilizing, it might point to the need for specific accessibility improvements, especially if the disabilities were disaggregated (e.g., deaf users watch fewer online videos because so few are captioned).

    • Susannah Fox says:

      Thanks, Jim!

      You are right – we have much more data about internet users living with the disabilities we included in this survey. The current report had to be short and to the point in order to get it out to reporters in time for the Monday news peg (DOJ’s deadline for comment on the ADA). I have a series of reports planned for the next few months and I love the idea of doing a chart pack showing this group’s online activities.

      The Pew Internet Project’s next report will come out on Tuesday and will examine who looks online for health information and what topics they search for – people with disabilities are included, but not the focus of that report.

      Thank you again for the thoughtful comment!

  3. RICHARD PROCUNIER says:

    I am late deafened and perseverant and technical.
    Recently it came to my attention that the disabled need special access (maybe just a recognized code word) when complaints about HDTV or equivalent problems are made. I spent over 2 hours getting across to ATT staff about lack of captions which could have been solved in 10 minutes. Staff are trained to deal with a different client.

  4. Dana Mulvany says:

    I found the question, “Does your disability make it harder or impossible to use the Internet?” somewhat unclear. I was initially surprised that relatively few people answered “yes.”

    What was the real intent of this question?

    As a person with hearing loss, I have no trouble using most of what’s available on the Internet. What I have trouble with are inaccessible practices, like providing video or audio without any accompanying text to describe the sounds. It’s not my disability itself that makes it harder for me to use the Internet—it’s the use of inaccessible practices that creates barriers for me and other people with hearing loss or other disabilities.

    The Internet used to be completely accessible to people with hearing loss. Only after it became easier to provide audio and video online did some of the uploaded content start becoming inaccessible. The majority of the content is still accessible, but in recent years, more and more companies have been using uncaptioned videos and audio files on their websites. When there are workarounds available that content providers have opted not to use, is it proper to describe the Internet itself as being inaccessible?

    Personally, I probably use the Internet even more than someone without a hearing loss because it offers so much to me that *is* accessible. I’d rather look up information on a company’s web site and do my own troubleshooting than call a business and struggle with accented speech or with person who’s simply reading what to do off a computer screen. I’m probably a more skilled user of the Internet than most people—but I do find uncaptioned videos and audio files inaccessible to me. How am I supposed to answer the question, “Does your disability make it harder or impossible to use the Internet?” I could answer the question with “no” or “yes.”

    I would choose to say “no” because it’s not my disability alone that makes it harder to use the Internet. What makes the Internet harder to use is when content providers don’t make their content accessible and user-friendly.

    Dana Mulvany, MSW
    Differing Abilities
    dmulvany@usa.net

    • Susannah Fox says:

      Dana,

      Thank you so much for your detailed feedback! When we included all six of the federally-approved questions about disability, then added that last one that specifically addressed the internet, we thought we were covering the majority of the population (in the past we asked a single question that combined chronic disease and disability, which was unsatisfactory). Clearly we need to do more in order to capture a true picture of this population and I’m committed to trying to do that.

      Since we just became acquainted, I wanted to let you know that the Pew Internet Project has a good history of open-source research. We welcome critique and try to listen to all constituencies when we are designing our projects.

      In fact, I often use this blog to crowdsource questions, in addition to getting peer opinions from other researchers in the field before a survey goes onto the phones. On Tuesday I will release a report that is based on a series of questions developed on this blog.

      See:
      http://e-patients.net/archives/2010/07/crowdsourcing-a-survey-health-topics-2.html

      I share your concern about how the internet has changed because of audio and video. That’s why I attend every panel I can about accessibility (such as the one at Connected Health, where I saw Dean Karavite and Larry Goldberg). That’s also why I was disappointed by a presentation I saw last fall at the Gov 2.0 Expo by Judy Brewer of the W3C.

      See:
      http://www.gov2expo.com/gov2expo2010/public/schedule/detail/12965

      Her comments were excellent, but didn’t cover the challenge of closed-captioning or recommendations about which tools and sites work best for people who are hard of hearing. I was hoping for a list of recommended websites – is Vimeo better than YouTube? Is LinkedIn more accessible than Facebook? Maybe that list doesn’t exist, but I was hoping for more concrete direction. Can you list some of the work-arounds you mention?

      Again, thank you for sharing your experience and insights!

  5. […] Internet harder or impossible; 8% of people with disabilities report this problem.  There’s some more detail and an online dialogue about the study. Pew will be releasing more reports […]

  6. Jim Tobias says:

    The UK Ofcom Consumer Experience Report has somewhat higher stats on people with disabilities and their difficulties using technology: http://stakeholders.ofcom.org.uk/binaries/research/consumer-experience/research09.pdf

    • Susannah Fox says:

      That is a goldmine of a report for me — thanks so much for pointing it out. I’ll comb it to see what questions they used to measure the UK population and see what we can learn from it for the US.

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