Ramps like us, baby we were born to run

One of the most exciting facets of disability in the 21st century is the gadgets. The motorized chairs, the innovative prosthetics, the art-like ramp architecture. This innovation is torpedoing daily, as folks with disabilities enter higher economic brackets & positions of power, and as the baby boomer generation ages and moves into disability.

But that excitement is also fuelled by fear – a fear of ‘doing it wrong.’ I am invited to speak about my life as an artist with a disability frequently, in large part due to my rock n’ roll style, and casually accessible language. Language is one of the biggest reasons that barriers still continue to exist in the ways that they do. The Canadian population lives in a nation-state that has drafted this mosaic politic of celebrating diversity, but it also serves as a means of invisibilizing those very different needs and histories. If we are all different colours and we are all Canadian, than we have always been and there is nothing to atone for.

Disability is a scary one of those ‘diversities’ because no one understands it fully. I mean, you can’t always see it, everyone experiences it differently, it demands creativity, and above all, it is impossible to predict how it will be impacted by its environment, and vice versa.

The current law-enshrined recognition of disability in Ontario is called the AODA, and it is set up to ensure that progress in greater accessibility follows a linear momentum of change, implementing financial fines on those businesses and public structures that fail to comply. Beyond this legislature, rights-based disability thinking involves the relationship individuals living under the state have to the social assistance programs in the country, still largely seen by the public as drains to the economy, and a liability.

What does this have to do with post-secondary educational models? Potentially, everything. Let me introduce you to Raul Krauthausen.

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Krauthausen is a disabled man living in Berlin, who bought himself a 3D printer just over a year ago. After making various projects with his new toy, he decided to use the printer to print himself a ramp.

“I decided to print a ramp because I am a wheelchair user. I often have problems getting into places with just one step in front of the entrance. I thought it would be good if I could carry one with me on the back of my wheelchair, not too big and not too heavy.”

Krauthausen had never created a prototype for a ramp-object before, but like any savvy Google generationer, he watched how-to videos on youtube, and has experimented with 26 prototypes of ramps now with his printer.

He hasn’t been innovating alone. In addition to accessing the self-published, pedagogically participatory universe of youtube tutorials, he has been consulting with other communities regarding his ramp project on a site called Thingiverse, offering up the latest version of his ramp prototype free to download, and inviting others to share & improve upon its design.

The goal for him isn’t just the object but its means. The cost of printing his ramp is 50 euros. Because the percentage of the population to use disability related innovations, their cost is quite often invariably high, resulting in an even smaller about people that can actually afford the devices.

Ramp art & innovation is certainly a fascination of mine, not only because of its creation of access, but its figurative demonstrivity. Krauthausen’s ramp is fun & sexy! It withstands the load of his chair, while being a fun colour, and stealthily stored in his backpack. His co-conspirators on the internet even encouraged him to experiment with lego as materiality, which he reportedly accomplished in 30 hours, with over 600 lego pieces.

Another man 3D-printed a prosthetic hand for his son. For $10. This is quickly becoming the future. And with 3D printers being available for public use in many cities, it will be.

No longer needing to wait for institution to revolutionize and then meet individual needs, the individual is at once able to connect to a network and innovate in spite of isolation. And through this previously isolated reality, cyborgian dreams become realities.

Esteemed scholar Margarit Schildrick writes about the disabled body after Deleuze, citing it as the ultimate ‘queered body.’ Through an elegant unpacking of Deleuze & Guattari’s idea of assemblages, we understand that an autonomous sexual self is a myth, and in fact, a relationship with a caretaker, with a prosthetic, with a smartphone, is a demonstrability of our networked selves and current overlapping realities.

In the classroom then, to engage with social & digital media is deploy a litany of stratagems present across boundaries of physical institutional structures, less-limited by economic status, even serving to offer an interrogation of past mechanisms of innovation. The Internet possesses semblances of capitalism, however is equally as available as an anti-capitalist tool.

Disability, as I’ve mentioned, is integrally unpredictable. To ‘embrace’ disability then, is to learn a fly-by-the-pants creativity that offers innovation in each seminar a student uses Skype to attend class, in each closed captioned tutorial exercise, in a learning of cultural products & practices belonging to marginalized communities not your own, but shared in a communion of education as global/local networkings.

Found in Translation: Multi-Sociality, Disability, and Digital Media

If you were to look at my undergraduate transcript, you’ll quickly and quizzically notice that I’ve ‘multi-tasked’ my educational areas of interest as many times as my browsers on any ether-day.

In my first year at Trent University, I took Spanish 100, with the aim of future work in Latin American countries, and a year abroad. I found the language relatively easy to engage with, given its similarity to French. I did all my homework, participated in the class seminar and lab seminar, though I found the latter surprisingly challenging.

But about three weeks into the course, a curious thing happened; an event that changed my life forever. I received an email, one that I inspected almost too swiftly, considering it to be spam. It appeared as this:

To: Jes sachse
Subject: mama (fss)

Text:
I have a daughter. I live in Peru. I want to chat.

Angela

It was, before almost deleting the message, the letters ‘fss’ that caught my eye. FSS is the acronym for my disability, Freeman Sheldon Sydrome. At this realizing, the wheels began spinning, and I then vaguely recalled registering on a disability community website years prior, where I might have shared my email.

Not a moment before the thought completed itself, this person popped up on my MSN Messenger (yes, I am dating myself here. too bad I didn’t say ICQ). She sent me an instant message saying “Hola”, to which I replied excitedly with the two phrases I knew in Spanish: Hola! Mi llama Jes. Yo soy Canadiense!

My earnest studentship gave the person on the other end of the chat the indication that I spoke Spanish, and she immediately launched into too many questions too fast, which had me scrambling around my student apartment for my beginner textbooks and dictionary.

With a bevy of books on my lap, I realized quickly that this was slowing me down, and not necessarily the best way to chat with this woman and find out why she had contacted me. It was then that I dissevered the free translation website, which allowed me to plug in Spanish sentences, and render them into English, and draft my replies and do the reverse.

In two hours that flew by like two minutes, I learned that Angela lived in Peru with her husband and three children, the youngest of whom was diagnosed with Freeman Sheldon Syndrome. At a year and a half, Esmeralda had grown into a lively little girl, but faced many challenges associated with a disability that is quite rare. The genetic lottery is 1 in 150 million for FSS, and today there are approximately 65 known cases- which means that in certain countries, physicians have little to no experience with FSS.

The culture of disability in Peru is one of shame. Angela confided that the doctors had accused her being an alcoholic, and a a drug addict, to have produced a child like Esmeralda. Children with disabilities often live lives segregated from the rest of society, in care and education institutions.

Angela’s community had raised money for her to buy a computer, which the internet cafe in the neighborhood allowed her to run a line to her home, so that she could research and try and connect with other parents of children with FSS. Which led her to me.

Our relationship was a welcomed addition to my already full course load. We chatted for about two hours every night, with a webcam (minus sound). Angela asked countless questions that had been keeping her up at night. “She snores loudly when she sleeps – is this normal?”

“Her feet are like this. What are your feet like?”

Her other children, Franco and Fiore would be in the room as well, giggling and pushing their faces up to the screen. As the months passed, I used free translation less and less, but not so much the phrase ‘No entiendo’.

When December approached, I stared at the OSAP I had remaining in my bank account, a sum indicative of a shy little recluse, living thriftily and not drinking. Then I had a thought: what if I visit Angela in Peru?

Because of the rarity of FSS, and the genetic mutation involved in its production, I had never met another person with FSS in person before. I suppose I too had turned to the Internet at one point, but Wikipedia’s summary was a little terrifying and diagnosing.

If you Google image searched FSS in December of 2005, four images might have come up; eyes blacked out, medical shots portraying bodies that bear facial similarities. But Angela exchanged photos of Esmy, and we discovered that she looked remarkably like I did (and was affectionately given the nickname ‘Latina Jessikita’).

Arriving in Lima by myself, I was met at the airport by Angela and her husband Raul, who lived a rural village called Huaycan-Vitarte, about a hour from Lima city proper, and speak only a few English words between them. I can recall the challenge of the taxi ride to their house, how much more challenging it was without the facilitation of the Internet, and yet how different a community experience it was to be in person with Angela and her family.

Through the Social Media Project, I was reminded of this adventure when I begun to think about Modern Languages and the Internet. When we talk about the technology of the book, we inject a fear into the apparent ‘scattered’ organization of the Internet, and the loss of ‘print’ and the mastery we have.

In Mark Poster’s book “What’s the Matter with the Internet?”, he discusses an interview with Baudrillard, and his fear and refusal to merge with machine. He sees his typewriter as subject to his process, and the manuscript as a tangible; a product to consume. And that has been a technology to certainly shape the 20th century. But the 21st century has shown digital media to be not simply objects of utility, but an entire shift of cultural process. We have entered an era of pervasive and perpetual production.

“The screen is a permeable, seductive interface that joins computer and person into a synthetic cyborg. [...] And with this disappearance, I argue, so vanishes the citizen of the nation, the subject formed in the bosom of the nation-state in the age of first of print, then of broadcasting.” (114)

Baudrillard declares “Cyberspace is not of great use to me personally,” when asked about the potential that new technologies offer him. He demonstrates the same fear and ignorance that pundits like Mark Bauerlein do- Bauerlein, being more dismissive and insulting the intelligence and educational desire of today’s youth, and pointing to the digitization as culprit. But as we move away from false fears that ‘print is over’, and ‘social networking is a distraction’, we begin to examine the shift into a multi-sociality that is in fact shifting access to texts in much grander sense.

My experience as new student in a Spanish language course, was that it was the constant, consistent exposure to the language that remedied my learning, rather than the grades in the half hour tech lab, or practical quizzes.

Today, I have several Facebook friends who communicate in multiple languages. Recently, the Microsoft Bing browser has developed a new tool. When these languages appear on my news feed, which is set to English, the browser acknowledges that it is foreign to me, and asks in a hyperlink if I would like a translation.

Presently, in print, the English language is staggeringly dominant. However, digital media stands to influence a multi-lingual reality – one which no longer needs to privilege English. Hypertext markup language (HTML) itself is not inherently English, either.

The further development of these language technologies stands to have a remarkable impact on the Digital Humanities. Perhaps, Baudrillard and Bauerlein dystopically would caution that this new language freedom might create temporal communicators. Reading accounts like the personal narrative I shared above, the authenticity of my practice in the Spanish language spanned only one academic year. After returning from Peru, and completing the entry level course, without regular use, I slowly lost the learned use of the language.

However, I would like to link this technophobia to a greater dystopia of this century, that can be connected to narratives of ‘progress’. Is it necessary for human pursuits of language to take on the form of a consumption? Should I have learned ‘Spanish’, so that I always have ‘Spanish’? What about the language practice I learned in chatting with Angela, the language of CTRL+P, of ALT+TAB, of the computer grammar that could not replicate Peruvian Spanish, the influence of Quechuan words that faded under the force of Spain’s terrible colonization? These words were not in my textbooks either.

They were in the large hands laughing, pressed apron pockets of Abuela, who taught me names and sounds, as I taught scar lines and surgeries; and both, a resilient womanhood. The inherent challenge to nationalism that these global networks incite, threatens of course, those in the dominant power groups. If English becomes less solely necessary, as the reality of the framework and participation in the Internet, we will see increases in attempts to control this shift, undoubtedly. But utopically, we have present a newer opportunity of networking ourselves, that grants certain citizenship to anyone connected to one or any variety of portals.