Disability research, digital innovations and online activism

Blog
September 28, 2011

Filippo Trevisan, University of Glasgow

Guest Contributor

This entry is part of the CFHSS’s VP Equity Issues series on diversity, creativity and innovation / diversité, innovation et créativité.

In 1980, disability scholar and activist Vic Finkelstein hypothesized a not too distant future in which “impaired persons will […] no longer be oppressed by disabling social conventions and disabling environments but will be absorbed in the mainstream of social interactions.” In his view, technological development was to be an important enabler of social change, and Information and Communication Technologies (ICTs) in particular were to be central to the “liberation” of disabled people.

Yet, some thirty-odd years later, and despite having witnessed the role that digital media have allegedly played in crucial socio-political events such as the 2008 United States presidential election and this year’s Arab Spring, Finkelstein’s original proposition remains largely untested. As well, our understanding of the relationship between digital media and the lives of disabled people remains incomplete.

Although several works have appeared in recent years questioning disabled people’s position in the “information era,” the vast majority of these have framed the discussion in terms of access and accessibility, with very few venturing into qualitative analyses of internet use for interpersonal relationships by disabled people. While I could not agree more that access and accessibility should be top priorities for scholars, technology developers, disability campaigners, and policymakers alike, I am also firmly convinced that limiting ourselves to this perspective inevitably will mean we overlook an essential part of the picture here. An aspect that certainly deserves to be explored is that of online disability activism, and recent developments in British politics provide a suitable case study.

As someone who is passionate about researching the potential of new media to empower those who are traditionally excluded from politics and public decision-making, I have been watching with great interest as UK disability groups have turned to the internet in ever increasing numbers over the past twelve months. While a pilot study I completed just over a year ago on these same issues yielded extreme caution when considering the effects of online campaigns on the empowerment of disabled internet users, current government plans for a radical overhaul of the benefits system seem to have provided disability groups with a strong motivation to embrace digital media for mobilising, organising, and communicating their attempts to influence decision-making.

Not only have established organisations experimented with innovative routes in digital campaigning, but new collaborations have also been forged (sometimes where ancient rifts existed), and entirely new groups of disabled activists have been formed online.

In connection with their internal structure and their relationship with the internet, these groups seem to me to be falling under three different categories:

- Formal organisations: pre-existing disability organisations using the internet to boost their campaigns (including both non-profit and membership groups);

-“Digitised” activists: activists (mostly disabled) who met at a demonstration or event and have since “gone digital” as a way to sustain their efforts in the longer term;

- Digital action networks: activist networks generally started by disabled bloggers and operating exclusively online.

Indeed, each one of these three typologies could prompt a whole series of different research questions, including issues of whether pre-existing organisations are likely to be challenged in their “traditional” ways of campaigning; whether digital action networks that have formed around a specific issue can become sustainable in the long term; and whether virtual participation can be as effective as physical presence at a meeting or protest rally. However, what really strikes me as I am preparing to analyse these actors’ digital strategies in detail is the impressive array of online platforms on which they are engaged, often displaying terrific technological know-how. From Facebook to Twitter, and from websites to blogs, these groups seem capable of a co-ordinated effort combining multiple digital outlets in a complementary fashion.

In particular, initial interviews with disabled bloggers from digital action networks have already revealed that familiarity with ICTs in a collective of campaigners with direct experience of impairment can generate innovative uses of online platforms and “DYI” solutions to some of the difficulties deriving from poor web design. As such, initiatives like The Broken of Britain’s, #TwitterStories are great examples of how committed disabled campaigners can make online participation work for “ordinary” disabled users with diverse needs.

Although my research journey into these issues is only at the very beginning, and it will take significant time and effort to distinguish myths from reality, the impression is one of change. There is vibe and excitement in the UK around digital campaigns, not least because “they make disabled people feel less useless,” as a disabled participant once told me. If mainly as a response to government policy plans, disability activism seems to be alive and energised both offline and online, with the addition of new faces, who often join through digital channels. This is somewhat in contrast with the situation in countries where disability politics is currently not as contentious as in the United Kingdom.

I spent this summer in Washington DC talking to American disability organisations to understand what makes them somewhat less inclined to collaboration and experimentation than their British counterparts when it comes to digital campaigning. One thing stood out amongst others: the lack of a motivating reason. Beyond cultural and historical differences, circumstances can push people down unprecedented avenues, and this seems to be what happened in the UK. While times are difficult in the US too, the disability policy debate there does not seem to have reached levels requiring local groups to step out of the “ordinary.” This not only calls for comparative research, but also highlights the need to explore the role of contingent events as possible catalysts of online participation for disabled users. It is when people feel threatened that they are most likely to share their anger and frustration through digital communications. British disability organisations seem to have been ready to channel those feelings into some sort of online participation.

While these observations may generate more questions than one can possibly answer, what in my opinion should be taken away from this post is that access and accessibility issues should not let us overlook the fact that a very sizeable percentage of disabled people in countries such as the United Kingdom and the United States  describe themselves as regular internet users. For this very reason, and in light of the examples that I have briefly illustrated above, it becomes imperative for researchers to explore the lived experiences of disabled internet users: What exactly are disabled users doing on the internet?  What type of online exchanges, if any, are they becoming involved in? What are their perspectives on this type of communications and its impact on their lives?

Finding answers to these questions may seem like a cumbersome task. However, reaching beyond accessibility issues to assess the social, economic, and political impact that digital media have on the lives of disabled users is the only way to ensure that research on the relationship between disabled people and the internet becomes truly integral to the disability debate. In turn, such work would also be likely to reinforce the arguments in favour of truly inclusive web design: the best way to make sure that disabled people do not miss out on the digital “revolution” is for researchers to collect and share their experiences.

Filippo Trevisan is a Doctoral Candidate in Digital Politics & Disability in the School of Social and Political Sciences at the University of Glasgow, United Kingdom. Email: f.trevisan.1@research.gla.ac.uk