The Erasure of Disability from the Social Rights Movement

I have been working on my Master’s dissertation, and I’ve also worked on quite a few essays over the past year. As this blog might make abundantly clear, my main area of interest resides in the intersection between human and technology, the blurry lines of where human ends, and cyborg begins; of where cyborg ends, and robot begins. I’m interested in what the definitions for each term would be in a perfect, non-blurry world, where looking a word up in a dictionary meant having a straight answer.

This isn’t, however, the world we live in. And much as definitions shift, change, disappear, reappear due to use (or lack thereof), boundaries of interest do much the same. Whereas when I first embarked on this Master’s degree I believe I would be working with arm or leg prosthetics, their history and the development of their uses, I now find myself going down different paths. Essentially, I have found myself involved with wheelchairs, which for some reason hadn’t even crossed my mind as a prosthetic (how silly of me), accessibility, and disability studies on a deeper, social justice kind of way.

Let me make things clear, this is fantastic. I have been challenged to go with a different path as opportunities arose. Thus, having done some empirical work with wheelchair users and how they engage with public transport, I have also done more theoretical reading on the history of wheelchairs, their development, and how they influenced the disability rights movement.

It was, however, with a heavy heart that while reading not only papers on disability rights movements and disability studies, but also going through textbooks (qualitative studies textbooks), I came to the realisation that there has been an erasure of the disability rights movements from what is more broadly called the “social rights movement”.

Indeed, ableism, the segregation of disabled people, has been registered on many levels. The social stigma that follows a disability has already been pointed out by others, much more eloquently than I ever could (Goffman’s Stigma, which I commented previously, is a great example). What is less pointed out, however, is how this is also done on an academic level. To my surprise, while reading Lennard J. Davis’ paper “Crips Strike Back: The Rise of Disability Studies”, I was surprised to read accounts of legitimised groups (such as Latinos or African Americans), refusing to consider disability studies as part of a multicultural curriculum. Many of this amounts to the fear of linking their racial/ethnical identity to disability which, in their minds, would lessen their legitimate claims. The segregation of disabled people by those who have felt segregation themselves seems incongruous, and yet…

Meanwhile, in textbooks such as “The Essential Guide to Doing Research” by Zina O’Leary, they teach us to “recognise our bias”. This is to be done by considering our status within society which place us in positions of power. Gender, ethnicity, class, religion, from a developing or developed country, language skills, education and even age are pointed out as things to be considered before embarking on research. They are seen as categories that can place us in a position of power, or marginalise us, depending on which “side” of the situation we are on. However, being able-bodied or disabled is nowhere to be found. The same phenomenon occurs on Tumblr, ironically known as a hub for social justice warriors. Though the tag “Ableism” is ripe with complaints, prejudice and the occasional person saying they simply do not understand it, too many other posts calling out on racism, misogyny or even ageism have erased ableism completely (this post is a nice example – intersectional feminism indeed!).

What I’m trying to get across here is that there has been an almost literal erasure of disability from the social rights spectrum of movements. Accessibility, which for those among us who are able-bodied, isn’t an issue. Yet the lack of elevators, ramps, step-free environment complicates transport for entire group of people, it has been incorporated into our routines to the point where we barely notice it. The strongest kind of privilege is the one that isn’t even perceived.

Now, ideally, I need to get back to writing my own dissertation. I hope, however, that this has put forward some ideas of the institutionalised ableism with which we have been living for so long.
References:

1. Lennard J. Davis, “Crips Strike Back: The Rise of Disability Studies”, in American Literary History, vol. 11. no. 3, 1999.

2. Zina O’Leary, The Essential Guide to Doing Research, SAGE, 2004.

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Using 3D printing to create prosthetics

Richard and the Robohand team are doing extraordinary work to promote the use of 3D printers to produce cheaper and more accessible prosthetics. Their hand prosthetics, most ideally suited for those who have amniotic band syndrome, is produced in 20-30 minutes from a file they produced themselves. The prosthetic itself is extremely simple, mechanical (thus not depended on myoelectrical sensors), and supplies amazing functions to the users (move ahead to see Dylan catch a ball thrown by his father).

It is made by the Makerbot Replicator 2 3D printer, they have only added cabling and standard hardware. It works with the user’s wrist movement, and new models can be printed out once the user has outgrown the previous one.

The most amazing part of this work? It is openly accessible. Get access to a 3D printer, and use the file they have put up to print it out, and put it together.

You can support the Robohand team here.

Long hiatus OVER

Yes, there has been a hiatus of 6 months, of which I am not proud. However, as life had a tendency of getting in the way, I now embark on a perilous journey of writing my Master’s thesis. It shall be long, it shall be arduous, and it is already both terrifying and gratifying (which sounds good and feels odd).

Regardless, this space now turns into a blubbering mess of my adventures in thesis-land. Up, up, and away!

Thoughts on “Stigma”

He may see the trials he has suffered as a blessing in disguise, especially because of what it is felt that suffering can teach one about life and people. (…) Correspondingly, he can come to re-assess the limitations of normals, as a multiple sclerotic suggests:
Both healthy minds and healthy bodies may be crippled. The fact that “normal” people can get around, can see, can hear, doesn’t mean that they are seeing or hearing. They can be very blind to the things that spoil their happiness, very deaf to the pleas of others for kindness; when I think of them I do not feel any more crippled or disabled than they. Perhaps in some small way I can be the means of opening their eyes to the beauties around us (…).

– Irving Goffman, “Stigma: Notes on the Management of Spoiled Identity”, 1963.

These thoughts were, again, articulated a while back. This time, it was during my musings as an Erasmus student in Rome, where I took a course on the sociology of deviance. One of the readings recommended was the book cited above. Having already read some Goffman, and being quite an enthusiast of interactionism, some thoughts popped into my head concerning amputees and prosthesis users (I’ve yet to find the appropriate word for those who I wish to concentrate my studies on). 

In any case, on with less than eloquent babble: Goffman’s book “Stigma” was a biggie on my Neapolitan professor’s bibliography (which I attribute to his postdoctoral research having been undertaken in the USA). I’d already read Goffman’s “Interaction Ritual: Essays on Face-to-Face Behavior”, which I found absolutely amazing. However, I read it during my first year of undergraduate studies, and feel that it is now time to go through it again. “Stigma”, on another note, seems to be right up my alley.

Let’s refresh Aimee Mullins TED talk (posted here under). She follows in the same line as the multiple sclerotic interviewed by the author. She declares not feeling any more disabled than “normals”. The terminology utilized is also interesting. For the sake of simplicity, Goffman choses to name “normals” those of us who are not branded or marked or show any trace of outer, or inner stigma. That is to say, those who show no trace of visible, or known, mark of differentiation. Example: a person lacking a limb carries a stigma.

I believe Goffman’s book carries with it an interesting idea to explore when working with cyborgs. Why? Because we may have to redefine the whole concept of physical stigma, specially when it is used as a negative definition. Normality in itself might have to be redefined if becoming a cyborg becomes “normality”. Or, to be rather more precise, it’s not a simple question of normality, but of desirability. What would happen in the case of prosthetic limbs becoming superior to biological ones? 

These post, due to their repetitive, cross-posted nature, are much less developed than I would like them to be. Indeed, if I changed platforms it was with the intent of being able to go further into my research and post rather more interesting points than simply referencing books. Yet for the sake of reference, I shall nevertheless leave this blog here, in hope that it might aid me later or that it might prove to be interesting to someone. 

In any case, I leave you with the inspiring Aimee Mullins’ TED talk.

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Amber Case and Cyborg Anthropology

Her theme takes on a definition of “cyborg” I’ve actually been considering very closely. Do we really need to integrate our tools INTO our bodies to become a cyborg? Isn’t using them constantly ENOUGH for is to become cyborgs?

I love how she talks about losing a computer as a mental loss. It really is. How many of us still remember our best friend’s telephone number by heart? Losing our phones and/or computer entails an actual loss of data!
Then there’s the whole notion she puts out of “second self”. Though I agree with her, what I think about the whole cyborg situation is that there would be an actual singularity. So there wouldn’t BE a second self. There’d be YOU. As a machine, and as a human and both are one and the same.

The phrase that sticks, “Technology doesn’t just get adopted because it works. It gets adopted because people use it.” I’d like to add something on to it : If people adopt it, it’s because people’s morals are able to accept it. How does this have anything to do with cyborgs? I don’t YET think people are ready for this last phase. Talking to one of my friends at college about this whole theme yesterday, she ended the conversation with a very simple, “Yeah, but all that stuff scares me.”

The whole concept of cyborgs continues to be quite touchy. Debates are constantly popping up concerning the actual advantages of constantly being connected to other people via smartphones, etc, and the same will continue to hold true for ever more advanced prosthetics. Oscar Pistorius participating in the Olympics was an example of this, I believe. The sheer amount of people who were either against his participating in the able-bodied Olympics, or who wanted him to choose only one “kind” of Olympics seemed to me enormous (I wish I had statistics to back this up appropriately, but this comes from the talks I’ve had with countless people).

I believe the entire issue derives from the lack of appropriate definition of who can or cannot participate in each of the Olympics, which also has to do with an appropriate definition of prosthetics, enhancement, and cyborgs.

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Steampunk and dieselpunk : the cyborg aesthetic?

Steampunk and dieselpunk : the cyborg aesthetic?

Continuing my series of cross-posting from the old Tumblr-oo, these were my quick ramblings concerning the steampunk fashion. They have been modified as it was originally written over a year ago.
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Through the past year, I have been thinking about this subject quite often. I don’t why my head has constantly been jumping back to what I personally find an aesthetically pleasing genre: steampunk. Then, sometime around Christmas 2011, I realized that steampunk contains what the label cyborg aesthetic might actually be fitting.

Yes, we know, steampunk and dieselpunk are sci-fi genres. What could this ultimately mean to my whole cyborg work? Let’s face it, cyborgs in themselves were, until quite recently, sci-fi themselves. When you really think about it, so was science in general! It took a lot of imagination to come up with some of the researches and ideas scientists do and have.

(Addendum: having gone much further in my research than I had at the time this was originally written, I have changed my views on this. Cyborgs, from the idea of meshing human and non-organic materials, have existed for quite a long time. Indeed, there are 16th century artificial arms, one beautiful sample of these is in the Wellcome Collection. However, this all depends on how we define cyborgs, which is an area with which I am still tackling.)

My main idea here is what kind of potential consequences these sub-genres could have on the popular view of cyborgs. Fans of steampunk usually integrate some kind of mechanical limb (clockworks and all) to their bodies (see picture). Also, this genre seems to be filtering into our mass media, slowly but surely. Justin Biever actually made a steampunk influenced music video for Christmas 2011, and last year’s displays at Macy’s are full of clockworks.

Could this, eventually, have an influence on society’s take on cyborgs? Generally, people seem to shudder when they think of half-mechanical men, but could a large-scale diffusion of this genre’s popularity change that? I have often questioned the possibility of there being some kind of claim of pride over prosthetics, as I’ve often observed in Aimee Mullins’ TED talks (which I shall post in this space at a later date). It comes from a feeling of not having had a limb taken away, but more than that, having something <i>more</i> put in its place.

Possibilities are endless when it comes to the cyborg aesthetic. My header at the moment is a leg designed for Viktoria Modesta, which she proudly wears at galas. I think my point is that prosthetics are more than aides, replacements, limbs. They can go further than a genetic leg.

Photo Credit: Anton (skeep11 on DeviantArt)

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Transcendent Man (2009) by Robert Barry Ptolemy

We’re two days away from a new year, and maybe closer to what Ray Kurzweil defined as the Singularity. To welcome the new era, and to not abandon this blog, I’m cross-posting my old entries from my Tumblr to this space, beginning by this trailer of quite an interesting movie.

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The whole idea of a singularity causes mixed emotions. From “weird”, to “freaky” to, “I can’t wait”, this doesn’t leave anyone neutral. Where does the human stop in the singularity, and when do we become a Homo Electronicus, or is the singularity in itself the definition of a Homo Novus, if you will? Isn’t the point of the singularity to forget there ever was a gap between human and technology? And was there ever really a gap?