By Carmen R. Gonzalez of Healthcare Communications Group. Follow her @crgonzalez.
American novelist James Baldwin once said, “An identity would seem to be arrived at by the way in which the person faces and uses his experience.” The same can be said of those with physical disabilities who are using Twitter as their stage to create newfound identities, unconstrained by their bodies’ limitations. Intrigued by how Twitter has empowered people to find their voice and gain acceptance and recognition, I offer a brief overview of the new frontier being established on Twitter by these communities.
Connecting to the World
One of the more dramatic uses of Twitter by those with limited mobility involves University of Wisconsin-Madison biomedical engineering doctoral student, Adam Wilson, who has designed a powerful communication system. His technological feat allows people with ALS, brain-stem stroke or high spinal cord injuries to chat on Twitter. (Read here to watch a video about his invention.) Wilson’s computer interface allows people with mobility restrictions to select letters that flash on the computer screen with their thoughts. Brain waves are detected by his system using an electrode-wired cap. Still in its infancy, this technology is planned to enter clinical trial soon. While it is a slow-going process, as most users can select ten characters a minute, it offers a means to freely converse with the outside world without anyone knowing that the sender is disabled.
Yearning for a wider social playground, Glenda Watson Hyatt, a.k.a. The Left Thumb Blogger (@GlendaWH) and author of the popular DoItMyselfBlog, joined Twitter’s ranks. “Working from home can be lonely and isolating at times, but Twitter provides me with much needed water cooler chatter, so I no longer feel like I’m working in a vacuum,” says Hyatt. Given her steady blogging stream and active life, it is hard to describe Hyatt’s cerebral palsy as a physical challenge rather than a speed bump. Using only her left thumb, Hyatt can keep up with the pace of Twitter’s 140-character conversations, while its direct messaging features have become her preference over email. She has observed Twitter benefiting others with physical challenges too, e.g. serving as a listening tool by people with hearing impairment to monitor the Twitterstream at a recent Successful Outstanding Bloggers Conference, to gain a better sense of what presenters were talking about. “It’s not quite the same as real-time captioning, but it’s a helluva lot cheaper!” she says.
Advocacy For and By the People
In a novel example of combined social media and activism, students at the University of Minnesota decided to take matters into their own hands when the problem of handicap parking abuse was raised. A writing instructor, John A. Hatcher, challenged his students to come up with a solution. They gathered their laptops, a map of the campus and their trusty new application, Twitter. (Read here to get the details of their project.) They canvassed the campus for parking violations and recorded their findings through Twitter messages flagged by the hashtag #umdparking. The students then wrote about their findings and submitted their article to the campus newspaper, encouraging readers to check out their results on Twitter The students then connected with a university student group dedicated to advancing disabled community issues. While it is unknown if the university leadership has decided to add more disabled-parking spaces, the simplicity and power of this experiment is testament to the new opportunities afforded by Twitter.
According to Pat Ramsey, founder of the technology consultancy firm Slash25, who spoke recently at AccessU, a conference dedicated to the disabled community, says, “Twitter is another channel where the disabled may be heard. This technology gives access not ordinarily available.” Ramsey promotes greater accessibility with social media tools among those with limited mobility, yet notes there are significant barriers to participation, including software incompatibility. “Aggregators like Tweetdeck are impossible to use because their controls and fields aren’t recognized by the interfacing software,” he observed. Ramsey added that without applications like AccessibleTwitter and McTwit, many in the disabled community would be not able to use Twitter at all.
That’s where groups like AbilityNet (@AbilityNet) take their cue in helping people keep pace with technology, no matter their age, health condition, or disability. Located in the UK, AbilityNet has harnessed a broad array of social media tools, including Twitter, to “expand digital inclusion for the disabled,” says David Banes, Director of Development. With the advent of applications like AcccessibleTwitter and McTwit, Banes does not see as many barriers to Twitter participation as before. Rather, “there is a great deal of sharing of new information on technology-as with the use of Microsoft Surface (the new tabletop desktop)- and other key issues on Twitter,” says Banes. He notes that as the disabled become more familiar with Twitter, they are adding new applications to expand its functionality and are “shaping their own community.”
One person already shaping her community’s identity is blogger Sandi Wassmer (@sandiwassmer), owner of Copious Ltd., a digital agency in the UK. Sandi, who is visually impaired, wanted to advance the work of Action for Blind People, a charity providing support services for blind and partially sighted people. She decided to blog for the organization, writing on all aspects of living with a disability-from the practical to the sublime. Unexpectedly, she has learned that, “my musings seem to be hitting home pan-disability,” she says. By promoting her blog on Twitter, she has expanded traditional views of what visually challenged people can do and demonstrated first-hand that all people have more in common than what our physical differences indicate.
Spreading the Word
Unsurprisingly, one of the most popular uses of Twitter by disabled community groups is to share resources, scientific research, and legal rights-related news and contacts. Melissa Loe, Communications Director for the Texas Council for Developmental Disabilities (@TxCDD), has harnessed the power of Twitter to, “help more people -disabled or not-to become connected with resources, services, support, and other information they might not know exist.”
The same is true for organizations such as The Autism News (@theautismnews) which reports legal rulings on behalf of those with autism and their caregivers. Likewise, the U.S. government has its own web site for people with disabilities (@Disabilitygov) promoting information about disability programs, services, laws, and benefits.
Sharing success stories of resilient individuals who overcome their disabilities is commonly performed by support groups and associations, as shown here by United Cerebral Palsy of Greater Houston (@Empower4All):
Plus, solidarity among the disabled is communicated through promotion of anniversary events and other gatherings. For example, the Paralyzed Veterans of America Chapter 1946 (@PVA1946) encouraged remembrances of their fallen military brothers and sisters over the 2009 Memorial Holiday.
Part of why Twitter is so successful is because “it is purely text-based,” says Internet broadcaster and IT executive Jonathan Mosen. Blind from birth, Mosen was an early Twitter adopter and uses the platform to promote his radio show, while also leveraging it for advocacy. Mosen tells a story involving an international treaty in the works on material development standards for the disabled community, noting that there was resistance from the U.S. to such guidelines. Once that piece of political news hit the Twitter fan, he said, “a hashtag was created (#sccr18) for all to comment upon and thus began an organizing movement directed at the White House.” The effort paid off. “Before you knew it, the White House announced that it would back down and not impede the progress of the treaty’s development,” he says. While such immediate grassroots activism is assisted by Twitter, Mosen cautions, “the challenge remains to make Twitter as user-friendly as possible for those who aren’t tech-savvy.” He believes that innovations like JAWS and TwInBox are improving accessibility, so the trend is moving in the right direction. Interestingly, Mosen has even taken to acting as an ersatz program debugger, rooting out incompatibility issues and suggesting solutions by connecting with technicians via Twitter.
Fundraising Through Community Building
Just as disease-oriented groups like the American Cancer Society (@AmericanCancer) have created Twitter profiles to advance their organization and provide awareness on treatment and prevention, so too have philanthropic groups for various physically disabled communities. The Special Olympics (@SpecialO) and its related chapter organizations across the United States have set up shop on Twitter, promoting their fundraising events while also connecting with supporters. By encouraging their fans to retweet their messages, they created their own viral marketing campaign on the fly.
Crowdsourcing
While it is common for business people to network on Twitter, it is a positive sign of autonomy and confidence for disabled community-based folks to stake out the same for their audience. In one recent experience by AbilityNet, two disabled entrepreneurs polled their followers to determine the likely success of their software idea, dedicated to assisting physically challenged persons. The community responded clearly that the idea would not be profitable since similar software already existed on the market for free. “That was highly valuable information that saved these business people countless sums of money,” says Banes.
Gaming for All
Beyond the world of business, trendsetters are expanding access across the realm of digital technology, and those opportunities include gaming. Assistive technology provided by purveyors such as OneSwitch (@OneSwitch) bridge the link between people with cerebral palsy and other mobility disorders to the gaming frontier. This company has a variety of tools that make popular games/consoles easier for disabled individuals to control, including Playstation 2. As described by Barry Ellis on the OneSwitch web site, “I like the thinking that a person is disabled by their environment rather than their condition.”
The Road to an Improved Twitter
One of the most common refrains from active Twitter users with physical challenges is that Twitter’s most serious flaw is not necessarily about technical accessibility, but about its general reach. Pratik Patel, President and CEO of EZFire, which provides IT tech solutions and support to non-profit organizations, thinks that, “Twitter has a larger problem about general accessibility to the platform.” Patel notes that Twitter hasn’t done a very good job of explaining its technology to people, and while that may give flight to one’s imagination, it prevents ordinary users “from understanding what the implementation actually does.”
As a blind user, Patel relies on TwInBox as his plug-in that integrates Twitter into his Microsoft Outlook application. Given his technical background, Patel has high expectations for Twitter that include greater transparency with developers, to make the program more robust. He also sees an opportunity for Twitter to highlight clients that are accessible to the disabled community on its home page, rather than featuring celebrity profiles as it does now. Hyatt chimes in with her recommendation for Twitter to provide for adjustable font sizes, to assist the visually challenged.
Some of Twitter’s biggest accessibility issues could be more easily resolved by lending a helping hand to developers. One software engineer, Jamal Mazrui, created a program called McTwit to assist visually challenged persons to gain access to Twitter. Relying on his understanding of the Python computer language, and every resource he could scout in the library, Mazrui built an extremely robust application with features that are not found elsewhere (e.g. using a hot key to generate a list of the followers of one person). Ordinarily, when Twitter users send tweets, the application they are using is indicated at the bottom of their message, such as Twitterfeed, Tweetdeck, and others. Unfortunately, Twitter’s new authorization rules aren’t compatible with McTwit, so there’s no mention of McTwit on Twitter messages issuing from it. The irony here is that few people who could actually benefit from it are aware of McTwit, and by hiding its name, it remains a secret. Mazrui, who is blind, also advises how Twitter could make its program easier to use by visually challenged persons: Judiciously use headings so screen-reading equipment can more easily navigate page content.
Essentially, Twitter has the ability to champion full participation among all users, even those whose bodies are challenged. Despite its shortcomings, Patel makes clear that, “Twitter has allowed my natural voice to emerge.” How tweet it is.
TwiTip, 3rd July 2009
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