Bill Nye Saves the World from Disabled People

Bill Nye Saves the World

Image Description: Bill Nye a 61-year-old white man with grey hair stands atop the earth with his hands on his hips and lab coat billowing out behind him like a superhero’s cape in a promotional image for his Netflix series Bill Nye Saves the World.

When I first heard that Bill Nye would be starring in a new Netflix series, I was initially excited to relive some 90s nostalgia. The show is geared precisely towards us 90s kids who grew up watching Bill Nye the Science Guy. Unlike the show of my childhood, however, Bill Nye Saves the World is entirely geared toward Nye featuring topics that have a global impact. The first episode deals with the politically contentious but generally scientifically accepted topic of climate change. Another episode deals with sex and gender and debunking myths around how sex & gender are binaries.

I, however, became concerned when I noticed that there was an episode on Designer Babies. A concern that was confirmed when I watched the episode.

The episode deals with issues pertaining to in vitro fertilization (IVF), genetic testing and gene editing. All three but the latter two especially have implications for disabled people but Nye and his guests only look at the implications for nondisabled people often in the context of the presumed negative impact of not being able to choose to not have disabled children. There is no discussion of the impact of such technologies on disabled people themselves even though both Nye and his guests acknowledge that not all disabilities can be tested for and thus screened out.

The episode starts badly with a somewhat off topic shoutout to Victorian evolutionary scientist Alfred Russel Wallace. Nye mentions him because he feels that Wallace has gone unrecognized for his contributions to helping create the theory of evolution.

Nye only asks but does not really engage with the question of whether gene editing is either playing God or toying with evolution. It is, however, worth looking at particularly with his shout out to Wallace.

Alfred Russel Wallace like many early evolutionary theorists (Darwin included) used the theory of evolution to shore up arguments of white supremacy. He believed that white people were so superior that eventually, non-white people would die out along with less desirable members of the white population to eventually create a utopia that did not suffer from any social ills*.

John Langdon Down would later expand on that to explain how the clearly superior white race could be tainted with congenitally disabled members. Down theorized that white people were more evolved than other races and that intellectual disability was actually an evolutionary throwback that proved this. He wrote,

Here, however, we have examples of retrogression, or at all events, of departure from one type and the assumption of the characteristics of another. If these great racial divisions are fixed and definite, how comes it that disease is able to break down the barrier, and to simulate so closely the features of the members of another division. I cannot but think that the observations which I have recorded, are indications that the differences in the races are not specific but variable.

These examples of the result of degeneracy among mankind, appear to me to furnish some arguments in favour of the unity of the human species**

John Langdon Down used this theory when he categorized what is now known as Down Syndrome but was originally classified as Mongolian Idiocy.

The history of evolution is full of white men arguing that they are somehow superior and classifying difference as inferior. These classifications had a real social impact on the people being classified. It helped shore up institutional racism. Gave birth to the eugenics movement and has lead to genocide.

This is why looking at the social impact of science on the people being classified as undesirable is so imperative.

Bill Nye however, does not do this instead the only social impact of genetic testing and gene editing given in the episode is the impact on the people doing the classifying. The overall assumption is that disability is bad and that avoiding it is inherently good. So when they consider the potential negative impact gene editing they look at the cost and the people for whom that cost will be prohibitive. They do acknowledge that this disparity in access will almost certainly benefit white supremacy. The downside as it is presented is only that poorer families (who will invariably be disproportionately families of colour) will lack access to the options of gene editing and thus be burdened with disabled children.

The show does not at any point consider the potential social repercussions of gene editing on disabled people themselves.

They do not consider what the ability to choose to not have certain kinds of disabled children (because they do acknowledge that not all disabilities can be tested for) will mean for disabled people whose conditions cannot be edited out.

They do not consider how the economic disparity in access to gene editing technology will expand existing economic disparities for disabled people.

They do not consider what happens when the technology fails because nothing has a 100% success rate. What of the children who were supposed to be born “healthy” but weren’t.

What will this mean for people who acquire disabilities (a population that exceeds the number of people born disabled)?

In a world where disability is not only almost universally considered bad and which contains options to opt out of having disabled children, will support for accessibility legislation like the ADA or AODA continue?

Bill Nye considers none of those questions because they are social ones, not scientific ones. This is the problem with a purely scientific discourse. It ignores the social impact.

At the beginning of the episode, Nye acknowledges the possibility of a slippery slope but he dismisses it by saying that a slope needn’t be slippery. He, however, does this despite forgetting to acknowledge the humanity of disabled people or their very real stake in this conversation. We are to Nye best served by not existing in the first place. It somewhat robs his argument of weight.

No disabled people were included in the episode.

 

 

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*Wallace, Alfred R. “The Origin of Human Races and the Antiquity of Man Deduced from the Theory of “Natural Selection”” Journal of the Anthropological Society of London 2 (1864): Clviii-lxxxvii. JSTOR [JSTOR].

**Down, J. L. H. “Observations on an Ethnic Classification of Idiots.” London Hospital Reports 3 (1866): 259-62.

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When Celebrating Accessible Technology is Just Reinforcing Ableism

So this video has been popping up on my Facebook news feed a lot lately.

It’s a video demonstrating a wheelchair invented by Swiss students and it’s a wheelchair that can climb stairs.

Now I know that stairs are a major physical barrier to wheelchair users and I have no issue with any technology that addresses those barriers. I however find the support of able-bodied people for technology like this troubling.

Viral excitement over adaptive technology seems to be directly connected to whether or not it challenges the social aspect of an inaccessible society. People are all for increased access so long as they don’t have to do anything about it.

It reminds me of another mobility device video that was being widely shared primarily by able-bodied people with the video caption “Making Wheelchairs Obsolete”

The 9 1/2 minute video details the uses of the Tek Robotic Mobilization Device which is basically an upright version of an electric wheelchair. It is specifically designed for people with paraplegic paralysis and isn’t really suited for wheelchair users with other conditions. The video however talks about how users of Tek can get around spaces that are inaccessible to wheelchairs like narrow store aisles. The device is also only really functional indoors with its low to the ground base incompatible with anything but a completely flat ground. Yet whenever I came across this video on Facebook it was always in terms of making wheelchairs and by extension the accommodations associated with them obsolete.

People love the stair climbing wheelchair and the standing scooter because they think it fixes the accessibility issue caused by a lack of ramps or elevators without actually having to install ramps and elevators. The perception is that the problem is solved without any change to society or the environment.

The happy “Look problem solved” mentality is however short sighted for many reasons. Primarily the reason that these devices are not suitable for all people with mobility impairments. Different wheelchair users have different mobility device needs that may not be met by either device. People with mobility impairments who don’t use wheelchairs may also need additional space to maneuver or ramps. The celebration of these kinds of technology show a very narrow understanding of what disability is. In the case of the Tek device, it is only useful indoors so an alternate mobility device is required outdoors.

Secondly for those these devices would help, able-bodied people ignore the cost of these devices and that in most cases that the cost would be shouldered by the disabled user. This essentially assumes that it is ok for certain people to have to pay a price of admission while others do not.

Third it assumes that it is ok to always put the burden of change on disabled people rather than deal with the reasons that accessibility isn’t already the norm. It positions the disabled body as social space where others can enact changes to mobility instead of making the actual social environment more mobility friendly. This ignores both the autonomy of disabled people and the fact that many of us don’t want to be “fixed” either by cure or imposed treatment.

Finally by so clearly associating an accessible environment to disability (therefor rendering it “other” and undesirable) people ignore the universal benefits of an accessible environment. Ramps are useful to people pushing strollers or carrying heavy objects. (for more on the last two points read Emily Ladau’s piece on why it is better to change the environment than people).

Yet this mentality that it is both easier and cheaper to as one person responding to my criticism on Facebook put it “Because it’s vastly cheaper to put shoes on people than to cover the entire world with carpet.” I’m not sure anyone has actually done the math on how much it would cost either to provide all disabled people with various mobility aids vs. Making public spaces accessible. I suspect he might be surprised at the outcome as a single ramp benefits everyone who uses it while a specialty wheelchair (that is likely expensive) benefits only a single person. It also just maintains the idea that if disabled people want access to the world we exist in, that we should have to jump through hoops that don’t exist for everyone else.

The more just solution is to remove the hoops altogether and not make ability to participate contingent on changing the oppressed group so that the oppressor never has to change but can feel like progress has occurred.