Social media and disability rights activism:
Is the Internet finally providing ‘liberating technology?’
Presentation for Society for Disability Studies conference
June 18, 2011, San Jose, CA
By Beth Haller, Ph.D., Towson University
In the 1990s, media and disability scholar Jack Nelson (1994, 1999, 2000) wrote often about the technology he felt would be change the lives of many people with disabilities. In particular, he saw the Internet as a game changer, with its ability to allow people with disabilities to better access the social world without leaving their home computer.
The Internet was heralded as the “liberating technology” that allowed people with disabilities to be less isolated, as well as a way for people with disabilities to interact with others with fewer barriers (Sussman, 1994).
I won’t talk about it but at this same time, there was a lot of discussion as well about emerging virtual reality and what it might provide for people with disabilities. Cal State Northridge began a conference on technology and disability back in 1985. Early papers at the conference looked at the topic of virtual reality and other kinds of tech for PWD.
The CSUN conference on tech continues and has expanded to include exhibitors and “features more than 300 general session workshops and more than 150 exhibitors displaying the latest technologies for persons with disabilities” (CSUN, 2011).
But what Nelson was looking at specifically was the Internet’s power to transform lives. However in the early 1990s, when Nelson was making his predictions, only email, basic Web pages, bulletin boards, real-time online chats, and rudimentary virtual reality existed.
I argue that for all its promise, the Web 1.0 days of the Internet only provided “liberation” for some tech-savvy people with disabilities, rather than the whole community en masse. But I have more hope for Web 2.0 and social media and social networking.
For this paper, I analyzed some current disability activism that uses social media and argue that the promise of the Internet and cyberspace as a “liberating technology” is finally being fulfilled through social media and the social networking it provides. The add-on of mobile phone technology and its applications, as well as the ease of joining social media such as Facebook, YouTube and Twitter, have combined to truly bring together the global disability community for activism, information exchange, and enjoyable social interaction (Dobbs, 2009).
I argue that social media has reinvigorated some disability rights activism, as well as fostering more interaction within the disability community regardless of age, ethnicity, gender, disability or geography. Social media allow disability advocates to use vast global networks of “friends” or “followers” to better promote the issues or events important to them.
First a word about the structure of these media:
One thing that is different about social media such as Facebook, YouTube, and Twitter is that they are simple to use. In the past, anyone wanting to have a Web presence had to know some basic html or how to use Web design software. But the pre-set templates used in social media mean that in a couple of minutes anyone can be online with a Facebook page or Twitter account. They are easier to use than even basic blogger software. And I would argue FB and Twitter are less daunting because you can’t write that much.
However, there are some accessibility issues especially for people with visual impairments, intellectual disabilities (Fairweather and Trewin, 2010) or who use screen readers. I am not an apologist for FB but I think the same tech that makes FB so easy to use – pre-set templates – is what confounds screen readers. On the flipside, FB makes communication easier for people with hearing impairments or speech disabilities.
The power of social media for activism comes down to several aspects – the ease of sharing information through posting links and pictures and thoughts and the ease of having that same information sent to the networks of many other people. What would have been called “forwarding” in Web 1.0 but is called the Share button on FB or the Retweet button in Twitter. And for YouTube, the ease of putting information in a visual format that makes it more accessible to many people worldwide.
Those who study the impact of social media on activism in general put forward several theories about what social media provide;
Tech writer Noorin Ladhani says: “Online social activism through social media should not even be compared to the physical act of social activism. Instead, it needs to be considered and evaluated as a vehicle for free speech, information sharing, and online organizing (2011, p. 57). She adds FB makes it much easier to organize people rather than the email or phone lists used in the past.
The benefits of Activism 2.0, according to those who study the intersection of cyberspace and communication (JasonF, 2011), are:
Using social media to coordinate group gatherings
Assembling organized numbers of people
Using social media to warn like-minded people about those who are against the group’s activist stance
Real time updates allows a group to adjust to any actions against it
Getting messages to people not directly involved but still interested in the activism
Enlist support and/or coverage from the media and others around the world
Those who watch political advocacy say “in today's social media age, any issue advocacy or public affairs campaign that relies solely on traditional media and paid advertising will simply not succeed” (Lawrence, 2010).
As you might expect, this has many implications for disability activism. For example, as recently as a few weeks ago, British activists used social media to organize a protest against disability cuts, The protest brought London traffic to a halt for an hour (BBC News, 2011).
Disability activist and writer Laura Hershey explained how social media like Facebook fosters ongoing connections between disability rights advocates from around the world. Hershey, who had spinal muscular atrophy, explained, “it's not so much about meeting new people as staying connected with longtime fellow advocates: ‘When you see people once or twice a year, or even less often, it's hard to keep up with them. Facebook lets us stay in contact, even see each other's photos of home, families, local actions, travels, etc’" (Dobbs, 2009).
New Mobility reported that “social networking can, in many cases, propel [disabled] people into additional civic involvement when attending every meeting or demonstration is unrealistic.” Basically social networking provides some added accessibility for people with disabilities to participate in activism.
"Participating in quasi-political action through Facebook is easy," says power chair user TK Small, a 44-year-old Brooklyn attorney, disability radio show co-host and real-life advocate who is also a member of 11 Facebook activism groups (Dobbs, 2009).
NY disability activist Mike Volkman (2009) says it was worth trading anonymity for advocacy through social media like Facebook. After he joined FB, he said the largest group he interacted with there were members of the disability rights community. About a third of his FB friends “are what Justin Dart referred to as ‘colleagues in justice,’" Volkman says.
For him, FB allows barriers of time and distance to melt away. FB creates a kind of “open space” for the disability rights community – “an unregulated, unprogrammed time and place where free-flowing ideas can spring up out of nowhere. We have people in every corner of the country, and we have new friends from far-flung places like Great Britain and even Mongolia who want to be a big part of what we are doing” (Volkman, 2009).
Social media becomes a way for disability rights organizations & activist to steer people across the Internet to their activities.
For this paper, I analyzed the social media presence of several disability organizations – National Adapt Freeourpeople on FB and Twitter and DREDF on FB and Twitter.
National ADAPT Twitter feed, which has 1700+ followers, and FB page, which has 1600+ friends, has become a repository for much of what is going with ADAPT nationally and locally, as well as connecting to other disability rights initiatives by posting links, pictures and videos.
When ADAPT protested Medicaid changes in DC in early May, it live tweeted much of what was going on, including the arrest of about 100 disability activists. Its Twitter feed included:
Pictures from ADAPT protestors and others and information about those arrested
It gave links to any media coverage.
It gave information so someone who wanted to participate but couldn’t be in DC could follow along.
People not in DC could even become active by calling Rep. Paul Ryan via the phone # ADAPT tweeted. Ryan’s budget proposal would cut Medicaid funding by more than $700 billion and shift control of the program to the states.
The tweets really try to build a cross-disability community. A May 3 tweet said: “Remember that ADAPT fights for all disabilities: physical, dd, psychiatric, blind, deaf, autism, MCS, everyone. That is why we are here.”
Later in May, local ADAPT groups held protests in Chicago, Philadelphia and Minnesota and the live tweeting continued with updates, photos and videos from those actions. For example, “Check out awesome raw video from @uptakemn http://bit.ly/jgenn7 -- really captured passion/support + security professionalism” (Sorem, 2011). The video was uploaded on a MN citizen journalism site The Uptake and was titled, “I’d Rather Go To Jail Than Die In A Nursing Home.”
Because FB is a more visual medium with thumbnails of pictures and videos to draw people in, many orgs use them for that purpose. After the May DC action, ADAPT’s FB page became a repository for protestors pictures as National ADAPT was tagged in many of the activists photos.
The Disability Rights Education & Defense Fund (DREDF) has had a YouTube channel since 2009. DREDF’s activism takes place in the courtroom and through lobbying and public policy development primarily but the 32-year-old org has embraced social media.
It regularly tweets about disability rights and access cases in the news, government policy changes, and its own advocacy work. For example, in April 2011, it tweeted about the FB page it set up as an Action Alert for people to Call/Email Congress to Cosponsor the IDEA Fairness Restoration Act on Wednesday, May 4, 2011. This bill would allow parents to recover expert witness fees when they prevail in due process hearings and court actions under the IDEA. Through FB and Twitter, DREDF is reaching out to people with disabilities and their families about significant disability rights issues.
Its YouTube channel has training videos such as helping parents understand the special education process and how to advocate for their disabled child and it has posted its historic video (formerly a VHS tape), “The Power of 504”: “Award-winning 18-minute documentary video, which captures the drama and emotions of the historic civil rights demonstration of people with disabilities in 1977, resulting in the signing of the 504 Regulations, the first Federal Civil Rights Law protecting people with disabilities. Includes contemporary news footage and news interviews with participants and demonstration leaders.”
These are just a few of the hundreds (maybe thousands) of examples of disability organizations, disability activists, and individuals with disabilities using social media to further the cause of disability rights. The power of social media for activism will only grow in strength, I believe. As tech watcher Noorin Ladhani says, social media should be evaluated as a tool for change, not as the tool that will change the world.
As activist Mike Volkman says, “What we are doing now with Facebook really shows the true potential of what the Internet can do to transform our society. We are seeing changes that rival historically the invention of the printing press.” With social media, the Internet truly is becoming the “liberating technology” that was promised for people with disabilities.
Let me end with a Justin Dart concept that applies, I believe, to the use of social media for disability rights activism. He spoke of the disability community “rededicating itself to united advocacy" (2010), and social media can make that unity happen.
BBC News (2011, May 26). London pensioner and disabled protest disrupts traffic.
Cal State Northridge (2011, Feb. 27). CSUN Disability Conference to Explore Global Assistive Technology, [press release] http://blogs.csun.edu/atcsun/news/csun-disability-conference-to-explore-global-assistive-technology/
Dobbs, J. (2009, Sept.). “Why does Facebook matter?” New Mobility, http://www.newmobility.com/articleViewIE.cfm?id=11499.
DREDF YouTube channel. (2009). The power of 504, part 1, http://www.youtube.com/user/DREDFvideo#p/u/15/HMC5UuiIQkI.
Fairweather, P. & Trewin, S. (2010, June). Cognitive impairments and Web 2.0. Universal Access in the Information Society, pp. 137-146.
JasonF. (2011, April 12). Don’t worry activism isn’t changing, it’s getting better!
The Art of CyberDribble blog, http://artofcyberdribble.blogspot.com/2011/04/dont-worry-activism-isnt-changing-its.html
Ladhani, N. (2011). The Organizing Impact of Social Networking. Social Policy, 40(4), 57.
Lawrence, D. (2010). How Political Activists are making the Most of Social Media. http://www.forbes.com/2010/07/15/social-media-social-activism-facebook-twitter-leadership-citizenship-burson.html .
Nelson, J. (2000). The Media Role in Building the Disability Community. Journal of Mass Media Ethics, Vol. 15 Issue 3, p180.
Nelson, J. (1999, August). The media's role in building the disability community. Paper presented at the Association for Education in Journalism and Mass Communication.
Nelson, J. (1994). The Virtual Community: A Place for the No-Longer-Disabled. Paper presented at the Association for Education in Journalism and Mass Communication. Atlanta, Ga.
Sorem, B. (2011, May 11). “I’d Rather Go To Jail Than Die In A Nursing Home”- Handicap Protest Budget Cuts, The Uptake, [Video], http://www.theuptake.org/2011/05/11/protesters-disrupt-debate-on-mn-anti-gay-constitutional-amendment/
Sussman, V. (1994, Sept. 12). Opening doors to an inaccessible world. U.S. News & World Report. P. 85.
United Advocacy. (2010). Justin Dart. From one came much. Continuing the revolution of empowerment. http://www.unitedadvocacy.org/.
Volkman, M. (2009, Sept.). Trading anonymity for advocacy. New Mobility, http://www.newmobility.com/articleViewIE.cfm?id=11499