Disability and Diversity as New Media (draft)

One distinction between 20th and 21st century media is the introduction of networks. Networks operate very differently from broadcast media, in part because they are spaces of actions.

Visual culture began on a system where the audience was passive, absorbing messages without offering much feedback. Network culture however is founded on a value system of engagement and participation within mediated channels of communication. Over the last few decades, researchers have witnessed and reported on an incredible amount of activities within these spaces. Communities have been established, people experimenting with their identity and culture (Ito, 2008[i]; Ito et al, 2008[ii]; boyd, 2011[iii]) within these mediated spaces.

This evolution of our media has changed the nature of representation. Traditional media rendered possible what Jean Beaudrillard[iv] called the precession of simulacra. For Baudrillard our mediated society replaced all reality and meaning with symbols and signs. He argued that these simulacra are not merely mediations of reality. Simulacra have come to precede the real, they hide that the real as relevant to our understanding of our lives. Simulacra have replaced traditional myths, they are the significations and symbolism of culture that construct perceived reality, the acquired understanding by which our lives and shared existence is and are rendered legible. Baudrillard believed that society has become so saturated with these simulacra and our lives so saturated with the constructs of society that all meaning has been rendered meaningless by being infinitely mutable.

But with new media, media has taken on different dimensions, which are altering how simulation affect our lives.  Sherry Turkle, in her book Life on the Screen: Identity in the Age of the Internet[v], forsaw that the personal computer would induce changes in our minds. She argued that we are learning to feel comfortable about coexisting and conversing with intelligent machines. We are learning to trust simulations and treat them as sentient beings. And we are learning to accept a new view of our own selves that fits well into a world of pervasive simulation. In this process: “We come to see ourselves differently as we catch sight of our images in the mirror of the machine“. For Turkle :

“As human beings become increasingly intertwined with the technology and with each other via the technology, old distinctions about what is specifically human and specifically technological become more complex. Are we living life on the screen or in the screen? Our new technologically enmeshed relationships oblige us to ask to what extent we ourselves have become cyborgs, transgressive mixtures of biology, technology, and code. The traditional distance between people and machines has become harder to maintain. The computer is an evocative object that causes old boundaries to be renegotiated.”

This renegotiation of boundaries has not only been with machines, but also with ourselves. We are learning to co-exist with simulated versions of ourselves. People have used these simulation to experiment with new forms of “reality”, which have now began to reinfiltrate physical life.

Through networks, we are developing new metaphors of ourselves. In recent years, I have witnessed mesmerizing new realities made possible by new media co-designs such as the emergent digital lives of people normally marginalized, if not oppressed, by dominant communication infrastructures. Much self-determination has developed in virtual worlds: Paraplegics dancing, people meeting virtually and marrying in real life, autistic children expressing themselves with ease, physically disabled children learning about the body through gaming, communities of people helping each other cope with depression and cancer by creating art and spaces to share experiences, poor communities developing sustainable economies and virtual protesters influencing governments’ decision making. Key to all these activities has been an incredible sense of community where people share experiences, care and help each other in order to enhance their social lives.

In the case of “disability”, mental or otherwise, networks have also become learning commons. Many bloggers now openly question the medical established norms and the use of drugs to regulate “deviant” behaviors.

For instance, the blog beyondmeds.com shares thoughts, ideas and positive experiences of dealing with mental illness, eliminating psych drugs from one’s life. The blog discusses how to approach healing instead of numbing the mind with drug use. Blogs of this type allow people to witness other realities and aesthetics then those of our cultural institutions. People can now do their own research, find communities where they can question and find answers, witness other people’s experiences. In these digital spaces,  via the experimentation with the self and simplification of modern space, some can regain access to sensory life and potentially eventually being able to re-engage spatial difference as we will see in chapter 10.

The massification of new media is also reintroducing on a large scale, the notion of personalized norms and values. Via the Internet, Mobile phones and digital media, some people are finding or redefining their own voice. In parallel, science is also experiencing a paradigm shift where the demonstrated individuality of our genes, neural systems and cells is challenging many of the medical beliefs of the last few centuries.

Digital technologies have allowed a renewed awareness of diversity to infiltrate our society. Via the discourse of new actors, such as amputee turned pop culture icon Aimee Mullins, alternate societal meta-narratives and imaginaries that re-define “difference” as a strength and potential for new ways of being, have emerged. One to this dialectics is appearing via the figure of the “Super-Abled human”.

This passage from one of her Ted Talks exemplifies that point:

“ (…)  the conversation with society has changed profoundly in this last decade. It is no longer a conversation about overcoming deficiency. It’s a conversation about augmentation. It’s a conversation about potential. A prosthetic limb doesn’t represent the need to replace loss anymore. It can stand as a symbol that the wearer has the power to create whatever it is that they want to create in that space. So people that society once considered to be disabled can now become the architects of their own identities and indeed continue to change those identities by designing their bodies from a place of empowerment. And what is exciting to me so much right now is that by combining cutting-edge technology — robotics, bionics — with the age-old poetry, we are moving closer to understanding our collective humanity. I think that if we want to discover the full potential in our humanity, we need to celebrate those heartbreaking strengths and those glorious disabilities that we all have. I think of Shakespeare’s Shylock: “If you prick us, do we not bleed, and if you tickle us, do we not laugh?” It is our humanity, and all the potential within it, that makes us beautiful.” (Mullins, 2008[vi])

The values of empowerment and freedom to recreate our selves do not remain solely in the realm of mediated discourse.  The advent of 3d printing has facilitated drastic changes in how objects are manufactured.  Objects that once needed to be design for expensive production processes can now be created at home on a computer attached to a 3d printer. The significance of this technological shift is as important as the birth of the Internet and, later, that of social media has been for our societies. It allows the public to integrate within their physical realities the ethos of the diy and peer-to-peer movements.

Designers and researchers have now noticed that objects all have a bias implied in their design, which often isolates individuals from other potential aspects of social life. Institutional aesthetics such as those of the medical community or other “expert” communities often disregard the experience (sensorial, social, mental and/or physical) that these objects create in their users. Within a new media perspective, user experience has to become key, which implies a co-design approach that involves the user community as much as the “expert” in the creation of artifacts.

Already, it has facilitated the integration of alternate design paradigms in industrial design work. For instance, Industrial designer Scott Summit during his Ted Talk “beautiful limbs” explained how with the advent of 3d printing, his industrial design practice has moved from the design of products for mass consumption to the individually designed prosthetic legs that are unabashedly artificial and completely personal. He abides to a design philosophy that echoes Aimee Mullein’s discourse:  “If you are designing for the person, you don’t settle for the minimum functional requirement, you see how far beyond that you can go. (..) If you can nail that, you stand to improve the quality of life for somebody for every moment, for the rest of their life.[vii]  This lead him and his team to design limbs that become extensions of peoples’ aesthetics, their values, their fashion and their activities, each piece potentially becoming a work of art.

Alternate systems of aesthetics are stabilizing within our society that are re-establishing “disability” as normal instead of as pathology. In the art realm, artists with “disabilities” have disseminated works that embrace their differences. Hello, Savants! is an example of a collective of such creative people who for, about a decade, have shown and shared their experiences internationally by creating experiential commercial work and personal projects. Focused on the needs and culture of people with a “super-ability”.

It is clear that some types of “diversity” and “disability” are being celebrated both in the industrial and public making cultures and many are rising to the challenge of redefining their selves and the norms our society have used to define/label them. In as such, these notions are going through a new media moment, people re-inventing alternative aesthetic values and forms of discourse related to what it means to be human.  And while physical abilities are well on their way to be considered differences instead of pathology, the human mind and its differences are now at the forefront of redefinition.

next: Cognitive Difference as New Media

[i] Ito, Mizuko (2008). “Introduction.” In Networked Publics, edited by Kazys Varnelis, 1-14. Cambridge, MA: The MIT Press.

[ii] Ito, Mizuko, Heather A. Horst, Matteo Bittanti, danah boyd, Becky Herr Stephenson, Patricia G. Lange, C. J. Pascoe, and Laura Robinson (2008). Living and Learning with New Media: Summary of Findings from the Digital Youth Project In The John D. and Catherine T. MacArthur Foundation Reports on Digital Media and Learning. Cambridge: MIT Press.

[iv] Baudrillard, Jean (1981). Simulacra and Simulation (The Body, In Theory: Histories of Cultural Materialism). University of Michigan Press.

[v] Turkle, Sherry (1997). Life on the Screen: Identity in the Age of the Internet. Simon & Schuster.

[vi] Mullins, Aimee (2008). aimee mullins: it’s not fair having 12 pairs of legs. Ted Talks.  http://www.youtube.com/results?search_query=aimee+mullins%3A+it%27s+not+fair+having+12+pairs+of+legs&sm=1

[vii] Summit, Scott (2011) Beautiful artificial limbs: Scott Summit at TEDxCambridge 2011. http://www.youtube.com/watch?v=fir5HI0Gwrc


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