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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Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.

Yesterday, on Twitter someone shared this video and asked me for my thoughts.

Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.

I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.

I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I have written before about the impact of not being given the tools to talk about my experience as a disabled person.

Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity.

It depends on the idea that disability is defined entirely in medical terms. That as soon as you’ve given a diagnosis and maybe described a few of the characteristics of that diagnosis that you’ve put that person into a box.

It completely ignores the reality of the disabled experience. Experience, that may be impacted by a specific diagnosis. An experience that very likely expands well beyond it.

Not giving children the words to understand their lives is not only a disservice, it’s straight up Orwellian.

Ignoring a child’s disability in the false hope that it will reinforce some kind of normalization is just an adoption of doublespeak. If we ignore reality, then maybe people will just stop bullying and discriminating against disabled people.

In reality, it only serves to further ostracize disabled children because it teaches them they are different and talking about that difference is wrong. It’s trying to solve the problem of discrimination by having the disabled child internalize their oppression and keep silent.

It infuriates me when parents or medical professionals recommend that children not be told about their disabilities in some misguided belief that this will gift the child with a normal childhood. It won’t.

Children aren’t waiting for a label before they decide to bully a peer. While language can be used to marginalize it is not the source of the stigma. Erasing language will not erase the oppression.

I grew up without a diagnosis for my autism. The lack of the label did not stop my classmates from bullying me so brutally that I changed schools, only to find new bullies at the next school.

When I finally got my diagnosis it was liberating. Finally, I understood my experiences. I had a frame of reference to understand why I behaved the way I did and why people reacted to me the way they did.

Having that diagnosis earlier wouldn’t have saved me from the bullies but it would have saved me from the added pain of not understanding why.

Not learning to talk about my disabilities also left me at a disadvantage when I was put in situations where acknowledging them was important. Because no one talked about my being disabled, no one considered how to accommodate me. I didn’t even realize that I had the right to be accommodated.

The erasure of language doesn’t just impact disabled kids. It impacts their nondisabled peers. It teaches them that disability is a dirty word and justifies prejudices against people who have been labelled. And kids will be labelled regardless of the omission of diagnosis. It just means that the labels will be insults and slurs.

Kids are best served by being taught accurate, respectful language. Disability should be normalized not by trying to create a false framework where the disabled children are just like their nondisabled peers. This utterly ignores the very real differences in experience.

Normalize disability by acknowledging it and by respecting the realities of disabled kids. Model inclusivity and accommodation. These things cannot be done if you haven’t even taught the children how to express their realities and ask for the things they need.

Teach kids how to talk about disability

Empower disabled kids to understand and talk about their lived experiences.

Teach nondisabled kids that disability isn’t something to be ignored or overlooked.

Language and identity are complicated and children, as they mature and grow may decide for a variety of reasons that they don’t like or identify with a certain label. These language preferences should be respected but I would like to see a world where a label isn’t rejected because a child has internalized stigma and prejudice and believes being associated with it makes them less.

Give kids words. Language empowers. Denying kids words is erasure.

Remember that sometimes words aren’t just labels. Sometimes they are identities.

 

 

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If You Care about Autistic People Don’t Just Perform Solidarity

So April is upon us and along with it Autism Bewareness Month (I stand by that word choice). Tomorrow is World Autism Awareness Day and I am already feeling suffocated by all of the faux awareness.

Awareness would be great if it actually meant that people were actually educating themselves about the realities of autistic people. If it meant promoting the voices of actually autistic people. I would be ecstatic if that real awareness translated into acceptance and action. Action, that meant fighting for the rights of autistic people. Unfortunately, more often than not we get shallow shoutouts.

The danger of those shoutouts is not only in their inefficacy and often patronizing messaging, it is also in that they benefit problematic organizations.

Yesterday, I was scrolling through my Facebook feed when I noticed that a friend had added a border to their profile picture. The following image is my own photo with the border as illustration (don’t worry it never made it onto my profile).

autism speaks frame facebook

Image description: A woman with short blond hair, blue eyes and dark blue lipstick, looks directly at the camera. On the bottom is s white border with the Autism Speaks logo (a blue puzzle piece over the words Autism Speaks) and followed by the words “different not less”

First, let’s deal with the messaging. On its face, it’s a positive message but it also doesn’t really tell you anything about me or my experiences as an autistic person. It’s also so basic that it merely pays lip service to my humanity rather than actually affirming it. It exists in the same vein as the empty “special needs” memes that promote “acceptance” through pity.

10940999_769959393059095_6633527766282533542_n

Image description: Black text on a pink background the text reads “anyone willing to post this and leave it on their status for 1 hour? It is Special Education Week & Autism and ADHD Awareness month–This is in honor of all children who struggle everyday”

Images like this often position themselves as dares, the suggestion is do you dare? are you brave enough? The message that those who don’t are morally suspect. Then the images don’t share any actual information but reaffirm the preconceived notion that to be disabled is to suffer.

Not only is this not true awareness it is active misinformation that spreads pity.

Returning to the Autism Speaks Facebook border. While is isn’t as aggressive in its approach to getting people to use it, the end game is the same. You can feel good about the fact that you’ve done something. You’ve helped raise awareness. Admittedly an awareness that consists largely of an acknowledgement that autistic people exist and a general sentiment that it’s probably best to be nice to autistic people.

It doesn’t tell you why you need to be reminded of these facts. It doesn’t tell you about the real risks of violence and bullying that autistic people face. It doesn’t tear down stereotypes about autism. Which means that people are likely going to continue to comfortably believe the misinformation they may have internalized.

This kind of solidarity is predominantly a performance. It may come with good intentions but it ultimately does little or nothing to actually help autistic people. It does make people who add that border to their profile picture feel warm & fuzzy though.

One thing that the widespread adoption of performance solidarity like that border is that it gives a lot of publicity to the organization that created it and that’s a problem.

Autism Speaks is an organization that has a long history of speaking for autistic people with little or no input from actually autistic people. It has spread dangerous narratives about autistic people. It has supported anti-vaccination narratives.

While there have been changes in the organization and it no longer promotes a cure narrative and is no longer overtly anti-vaccination. It still widely benefits from it’s history peddling those dangerous narratives.

consider how the White House is going to “Light it Up Blue” (a practice created by Autism Speaks) tomorrow for the first time in years after the Obama administration halted the practice, in large part because of feedback from the autistic community. Donald Trump is friends with Bob Wright, one of the founders of Autism Speaks and the source of many of the dangerous narratives that the organization no longer officially supports. Trump is also sceptical of vaccines.

So regardless of their official position change. Autism Speaks is still largely associated with those narratives and they crop up in very visible ways. Autism Speaks is almost certainly going to financially benefit from this connection.

Despite their official change of heart, Autism Speaks is still widely disliked by actual autistic people who remember the years of demonization from the organization. It is also far too early to tell whether the official changes in policy will translate into real change in the actions the organization takes.

So, I would ask you not to change your profile picture to include that border this April. I would ask that you not support Autism Speaks.

If you really want to support autistic people this April and hopefully beyond it, you can support organizations that are run by autistic people like the Autistic Self Advocacy Network and the Autism Women’s Network. You can read the work of actually autistic people. You can promote and amplify their voices and work. You can financially support them (shameless plug for my tip jar).

These are things that can actually create a more nuanced understanding of autism and a positive kind of awareness. An awareness that leads to acceptance and action on the right of autistic people.

 

 

If you liked this post and want to support my continued writing please consider buying me a metaphorical coffee (or two or more). Donations help me keep this blog going and support my ongoing efforts to obtain a PhD.

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