Distraction Free Reading

Does ‘Going Sighted’ Make Life Better? Undoing the Desire to Cure Blindness in Russia

In 2017, two Russian deafblind patients—Grigoriy Ulianov and Antonina Zakharchenko—received retinal implants, or so-called “bionic eyes.” Both patients were selected from a pool of applicants, having met the criteria of acquired blindness through retinitis pigmentosa and a capacity to perceive light but not contours of objects. Immediately after, the country’s major media outlets burst with numerous media reports. The titles ranged from the celebratory, such as Breakthrough in Russian Medicine: First Patient Got Bionic Eyes; Magician? Just a Doctor; The Miracle of the Bionic Eye; to the more restrained, with Second Russian Patient Will Receive a Cybereye This Fall; I See But Not Like You Do: On How The First Russian Patient with the Bionic Eye Lives. The overall tone of the reports was marked by magic, wonder, gratitude for the doctors, and profound satisfaction with the procedures. They were mostly celebratory and hopeful about the new possibility of converting up to (approximately) 50,000 blind Russian individuals to sight. In the context of a new federal policy orientation aimed at making Russia inclusive of different abilities, these reports emerged as a token of a hopeful future, in which problems with the well-being of blind individuals would be solved not through systemic measures, but instead, through eradicating blindness. I follow Alison Kafer (2013) in understanding this fantasy of desired technological enhancement as part of the normative curative public imagination.

Curative Imagination

Curative imagination offers limited future imaginaries: in this aspirational future, disability simply does not exist, based on the assumption that disability equals lack and misfortune. In this vein, no report on the bionic eyes addressed what blind people can do in Russia today. Readers of the above articles remain ignorant about how a blind individual in Russia may thrive as blind. The very selection of the expert spokespeople—the operating ophthalmologist, the patients who desired to have their sight restored, the sighted representatives of the Ministry of Healthcare, and other federal healthcare agencies, as well as the administration of the operating clinic—reinforced once again the existing ableist normative discourse that makes the love of sight imperative. Drimtri Polikanov, the head of the So-Edinenie foundation which organized the surgeries, gave voice to these assumptions: “for a person who has not seen anything this is, of course, significant progress in terms of socialization and their return to an active life.”

I asked nine blind interlocutors from my fieldsite to comment on this. All nine responded that the hype around this solution was risky, as it diverted attention from more pressing issues—a lack of activity on the part of blind individuals themselves, and a lack of role models for a successful life as a blind person. One person said pithily:

I leave it to those who seek fame or those who genuinely believe that this can change their blind life, to wait for [bionic eyes]. For me and others, it’s better to act now… You see, when this information [about bionic eyes] goes public, it gives people futile hope. And they start waiting, and their life passes by.

This person highlights the risk of investing energy in desiring retinal implants, which, in turns, may trigger waiting at the expense of “living here and now.” According to this friend, the “futile hope” (that bionic eyes will magically transform blind people into skillful sighted individuals) does not help blind people advance in their life. My interlocutor insists that “it’s better to act now,” that is, to live a public life as a blind person. They are convinced that the broader public needs examples not only of blind individuals living fulfilling lives, but also of their valuable contributions to the production of social well-being. This materializes as active social media posting about the skills and capacities of blind individuals. They post about blind individuals as educators, guides, life-coaches, professionals, and volunteers, who serve as value-producers, successfully competing with sighted individuals in various economic and social domains. They tell stories about blind people enjoying their lives and generating valuable experiences, ideas and practices for broader society. In so doing, they publicize “nonnormative positivism” (Mitchell and Snyder 2015, 5), which in my interlocutors’ approach constitutes a different blind subject—a responsible actor of social and economic networks—as opposed to a blind individual configured through bionic enhancement. In my interlocutors’ view, this subject becomes a posterchild for the status quo of blind individuals as perennial objects of care and cure.

Another interlocutor’s responses to the public hype around bionic eyes raised different concerns:

I am not ready to sacrifice 10 years of my life to conduct experiments on my eyes for the sake of I don’t know what…

Why would I need a surrogate that doesn’t resemble [sight] even remotely? What would I do with it? Walk around? I do it already. Read? With contemporary technology, reading and accessing information are not a problem. Drive? It’s so not worth it to go through this for the sake of nothing.

These responses build on the discussion about the ongoing devaluation of blind subjects’ life experiences, and yet they go further. They point out that aspiring to technologically mediated sight offers blind bodies for sacrifice in the name of technological progress; and this sacrifice does not bring valuable returns to those who sacrifice. The two 2017 implantation surgeries used Argus II, a second-generation retinal prosthesis system developed by Second Sight Medical Products Inc (a California-based company). According to media reports, these patients did acquire eyesight, albeit narrowly understood. The patients said they saw flashes; an object for them appeared like a white field with black surroundings—they saw in black and white; the angle of vision was about 30. These specific features are explained by the features of the implanted product. Sixty electrodes implanted on their retina transmit sixty signals that are further interpreted by their brains and shaped into obscure and unclear images. “To understand what it looks like, it’s enough to take any image, make it black and white, and transform it into 60 circles.” These parameters might well qualify one for a disability in Russia, and yet the produced discourse rendered them ‘sighted’.

A Question of Development

A pixelated still image, taken from a YouTube video, of a person in greyscale. The image is meant to demonstrate how a human may look with the implants discussed. The title of the video is "Presentational video of the project on the bionic eye implantation"

An approximation of what a human may look like with the implants discussed. Image courtesy So-Edinenie.

The operating surgeon—Dr. Takhchidi—enthusiastically compared the poor resolution capacity of the implant (about 60 pixels) to the first cell phones: just as mobile phones became smaller and more capacious, the retinal implantation industry will too become more and more sophisticated. “It is just a question of the development of technology.” No information is provided about possible breakdowns or the device’s longevity, although the developer’s website provides details. The intense psychological, sensory, and cognitive training that is part and parcel of such a transition (see also Sacks 1993) is not discussed at length either. Instead, experts speak of this device as becoming an integral and thus invisible part of the patient’s body—through which the labors and costs of rehabilitation become invisible, and the patients’ responsibility. This shift of attention from rehabilitation and systemic change to the domains of technological advancement and individual effort reproduces disability as dis-abling and focuses on deficiencies (Jain 1999): it lures patients with a desired image of easy sightedness, producing in turn a lack of skill and capacity to inhabit the world, and fuels the demand for further prosthetization by deferring the promised satisfaction.

My blind interlocutors do not fetishize this new prosthetic option because their current system of supporting devices works to sustain their mobility and social lives:

I’d tell you that my inner world has been changing, and it’s getting terribly interesting—all this has been happening only since I lost my sight.

Everybody assumes that the loss of one’s sight robs their life of some purpose, that it diminishes the quality of life. With my own example I can tell that I do not see any problem with the quality of my life. It is just a different life; to claim that I’d live better were I not blind is simply stupid and arrogant.

It is important to understand that this is just a tool.

The most important thing is to understand what one wants besides restoring their eyesight.

Yet, it must be acknowledged, my blind interlocutors enjoy a sufficiently developed set of skills in navigating the social and physical worlds and feel comfortable and self-realized as blind subjects. Because they found ways to thrive as blind, they view this prosthetic system is a tool, not a telos that has a potential to improve quality of life.

I do not seek to discredit the development of prosthetic technology—in numerous cases, it brings substantial and valuable changes to those who choose it. Instead, by bringing my interlocutors’ comments to the table, I aim to challenge the assumption that technologically assisted conversion from blindness to sight is necessarily good in addressing the pressing issues concerning the wellbeing of people with visual impairments. Moreover, I have tried to highlight that the everyday reality around “going sighted” is much more complex, as vision and the form of sensory embodiment that the operated patients experience are not the normative vision and body that can smoothly plug into infrastructures for the sighted. What they get is a body that is challenged to undertake great labor in order to learn to inhabit this world through sensory experience, which, although labeled ‘sight,’ does not provide enough to sustain a sighted life.

This reveals the need to diversify the investment, attention, and work toward including broader concerns—concerns about better rehabilitation systems and more social, economic, political, and cultural opportunities for blind people to thrive as they are.

 

References Cited

Jain, Sarah S. 1999. “The Prosthetic Imagination: Enabling and Disabling the Prosthesis Trope.” Science, Technology & Human Values 24 (1): 31–54.

Kafer, Alison. 2013. Feminist, Queer, Crip. Indiana University Press.

Mitchell, David T., and Sharon L. Snyder. 2015. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. Ann Arbor, MI: University of Michigan Press.

Sacks, Oliver. 1993. “Too See and Not See.” The New Yorker, May 10, 1993, sec. A Neurologist’s Notebook. https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see.

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