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.

 

 

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Mentioning Disability is not an Invitation for Commentary or an Inquisition

I think one of the clearest examples that I experience regularly that disability is not an accepted experience is that I can’t casually reference the experience of being disabled without being met with either pity or inappropriate questions. Sometimes it is both.

For me disability is a huge part of how I experience the world. It impacts how I do every day things. If it is relevant I should be able to reference it in the same way a nondisabled person talks about their day.

When I reference my disability or how it impacted an activity (like referencing how I had to do something differently than the norm). I am not looking for pity. But I all too often get it.

Or in a situation where I am airing a grievance based on discrimination, where empathy (though I usually get pity) is appropriate, it is misplaced. People are sorry that I am disabled not that I experienced discrimination or prejudice.

I have written about how nondisabled people often treat disabled people like public spectacles before. Here, I’m going to address how casual acquaintances try to legitimize inappropriate questions about disability.

This isn’t about those people who accost disabled people on the street to ask “what’s wrong with you?”

Rather this is about those people who you are conversing with casually who take the remotest reference to disability to ask “what’s wrong with you?” even when that question is not a natural progression of the disability reference.

These encounters often involve social coercion on the part of the questioner to get you to answer.

The scenario might involve a peer at work or a fellow guest at a party. They are people who can have genuine reasons to speak to you. They will also use the circumstance of being at work or surrounded by other people to force compliance because failure to comply could have consequences.

For example, you are attending a bridal shower for a close friend but it is being hosted by that friend’s future in-laws so the only person you really know is the bride. Everyone else is either a future in-law or one of their close family friends. As often occurs in these situations people ask what you do.

For me this brings disability up basically immediately because I’m a Disability Studies student. It’s a miracle is people don’t immediately move a conversation about what I study to what I am. Usually, telling someone you are a student elicits questions about the program and what you are planning on doing after graduation.

Not so if you are both disabled and a student of disabilities. Somehow, people see to think that asking about my medical history is a perfectly natural progression from me saying that I study disability. It is always quite clear in these conversations that people aren’t just ascertaining whether I have a personal stake in my field. That could be more respectfully determined by asking why I chose disability studies.

A question like that also would allow me to determine what information I am comfortable sharing. Demanding someone’s medical information is about entitlement and voyeurism. Waiting for a disabled person to make even the vaguest reference to disability first does not make it more acceptable.

Making that demand in front of other people is just coercive. Particularly if refusing will put you in a awkward position. Either with the questioner or in keeping with the bridal shower scenario with the bride.

I have found that simply telling people that you don’t want to share that information is rarely received gracefully when the request originated as a demand.

People tend to realize that a refusal is also a message that the question was inappropriate so they feel the need to justify their right to ask it and shame you for noncompliance (remember this is not a private conversation but one that is happening in earshot of other people). So they ask follow-up questions.

You’re doing a PhD in disability studies, shouldn’t you want to educate people about disability?

The answer I wish I could give: Yes, and an integral part of teaching about and advocating for disabled people is making clear boundaries. It does not benefit disabled people to reinforce the idea that our lives and bodies are available for public consumption.

Additionally, as you point out I am doing a PhD in disability studies which means that in addition to my years of experience as a disabled person, I have spent years and tens of thousands of dollars becoming this qualified. University professors don’t work for free so why should I? If you would like to agree to an hourly rate, I’d be happy to share my extensive knowledge with you. Like any work arrangement though I have the right to have my medical privacy respected and I will not be sharing any personal information unless I choose to do so.

I am just trying to learn, why won’t you educate me? Don’t you want people to understand?

The answer I wish I could give: Setting boundaries is a lesson in respect. If you really wanted to learn, you would accept that lesson rather than expecting me to give you personal information which in the grand scheme of things would tell you nothing about the experience of being disabled. It really only serves to parrot information that can be found in a medical textbook or on WebMD.

 

Ultimately as much as I want to, I don’t say those things. More often than not I just give them the information that they want. This invariably leaves me feeling horrible. The consequences for noncompliance however are greater. In the bridal shower scenario it would put my friend in the awkward position of either defending me or defending a future family member or friend. Either alienating me from them or them from family.

These more public confrontations risk more than angering a single person but can have wider consequences from witnesses who are often just as curious as the original questioner. It is usually easier and often safer to comply in the short term and if the questioner is someone that you are likely to have repeated contact with (like a coworker) consider taking action to change the environment in the long term.

I wish these interactions didn’t happen at all. I wish people’s express desire to learn was genuine and not a convenient excuse to justify inappropriate behaviour. So in case you do genuinely want to learn about disability and don’t want to be an asshole in the process here are a few tips.

If you are able, make an effort to educate yourself on your own time. Read blogs by disabled people. Read academic disability literature (some disability studies journals like Disability Studies Quarterly are public access and can be read for free by anyone).

If you are talking to a disabled person, don’t take any vague reference to disability as an invitation to ask probing personal questions. Make sure any follow up questions are directly related to the person’s original reference.

Let the disabled person decide how much they are willing to share and respect their privacy and boundaries.

Recognize that diagnosis information often says very little about the actual lived experience of disability and should not be considered essential to learning about it.

Thoughts on Disability and Brexit

 

I wanted to take some time to talk about the EU referendum in the context of disability. I’m not going to focus on any disability specific policies held by the EU (though I’m sure they exist and Baroness Campbell tried to get disabled people invested in the campaign to Remain).

Instead, I am going to look at ableist responses to the vote to leave and how Britain leaving the EU could further limit the opportunities of disabled Britons to travel.

One of my pet peeves in foreign policy is the discriminatory way that disabled people are treated in immigration (I wrote a Canada specific critique here). Generally disabled people are severely limited if not completely barred from immigrating. The EU offers something of an exception in that it allows free movement for purposes of residency and work between many of its member states of which Britain was one (and still is for at least the short term). If the EU exit negotiations do not include keeping that freedom of movement, the possibility of moving countries will be all but eliminated.

As a side note the fact that Nigel Farage has all but guaranteed that the pro-Brexit campaign promise of spending more money on the UK’s National Health Service was a mistake will of course also negatively impact disabled British citizens.

But back to immigration. For the average nondisabled British citizen immigration is still an option, though it will now likely involve far more paperwork. Paperwork that often requires applicants to include medical information that would exclude disabled applicants.

This reality is frustrating as in standard form in response to an unpopular political shift, people are discussing emigrating. We see this rhetoric all the time (if X politician is elected, I’m moving to Canada), while the words rarely turn into actual action, and are unlikely to unless some of the more extreme and dire Brexit predictions come to pass (World War III) it is frustrating to see people fall back on an option that millions of British citizens just lost.

Add to that the fact that some of the anger over the result of the referendum has taken a decidedly ableist tone and disabled Britons are not faring well in the immediate response to the Brexit result.

The problem here primarily hinges on the fact that the largest demographic which supported the Leave campaign were over 65 while the youth vote overwhelmingly voted to Remain. Anger has therefor been targeted at the elderly with comments about people who are about to die (I was unaware that life expectancy was so low in Britain that anyone over 65 is in danger of just keeling over).

This demographic split has resulted in a lot of youth anger being focused on the senior population, with one person tweeting

The thing is people aren’t supposed to give up their seats to the elderly out of respect. They do it because age is associated with a loss of mobility. Note that the tweet has been shared over 16,000 times.

The tweeter later defended himself by claiming it was a joke but some responders have doubled down and insisted that they are sincere in their support for the tweet, with at least one going so far as to say that he would demand to know how someone had voted before giving up his seat regardless of whether the person was elderly.

The fact that the anger of the vote so quickly turned to ableism is concerning. The fact that it is used against the demographic that most often voted to Leave is bad enough but the fact that people are clearly willing to extend it to people who are not so clearly associated with the Leave result is especially troubling.

This is the danger of falling back on bigotry in the face of political disagreement. It takes the focus away from why the ideological split really happened and far to often spreads beyond the initial target group. Which doesn’t really make for a funny joke, now does it?

The Flaws in Literally Checking Your Privilege

A couple years ago Buzzfeed published a quiz called How Privileged are You? It contains 100 statements of which the quiz taker is supposed to mark each which applies to them. Each statement is meant to be a point of social and cultural privilege. I have noticed that the quiz is being shared again so I wanted to comment on it and how I feel it can be used but also that it needs to be acknowledged that there are serious flaws in its design and delivery.

The quiz is presented largely without context, it does not discuss the role of intersectionality or even how some of the things that limit privilege for some people may actually expand privilege to others.

I expect the quiz is meant to give people a general idea of how someone can exist with both points of privilege and oppression. It could function as a sort of tempering to the “yes, but” arguments that come up far to often in activist discussions, particularly coming from allies who may not want to acknowledge their privileged position because of how they might fall into a different oppressed category.

The problem is, that as I was taking this quiz, I had a lot of “yes, but…” moments and none of them had to do with me denying my own privilege. In fact one of the first statements that gave me pause was “I have never been the only person of my race in the room” the test assumes that being the only person of your race is always due to a lack of power. However as a white person who has not only been the only white person in the room but the only white person for miles, I can say with certainty that my ability to be in that situation was most definitely a point of privilege. A point that was accentuated by the fact that I was treated with undue deference while I was there. I am also aware that in a reverse situation where any one of those people was brought into a majority white context that the situation of respect and deference would not transfer.

The quiz in no way allows for how privilege intersects with scenarios that would be oppressive for anyone who didn’t share that privilege.

The next one that gave me pause was “I have never worked as a waiter, barista, bartender, or salesperson”, the intent of this one is to highlight financial privilege, the fact that a person has never been in a situation that they have had to take work that is considered to be menial service industry labour.

The problem here is that I personally am physically incapable of doing 3 of the 4 jobs listed. It is not a privilege that I have never held those jobs. I have certainly been in financially precarious enough of a position where you are forced to take any job you can get. The problem was that due to disability, many of the so called “low skill” jobs aren’t even options for me.

This last issue is compounded by how little consideration disability is given on the list. While every other area of privilege and its corresponding oppression used in the quiz (race, gender, sexuality, class, affluence, etc) is given a number of points that deal specifically with the experience of those identities like,

“I have never been told that I am attractive for someone of my race”

“I have never doubted my parents’ acceptance of my sexuality”

“I have never been catcalled”

Disability however is given no nuance, it only has statements like ” I do not have [insert type of disability]”. There are only two statements that might be considered to be about the experience of disability, first “I can afford medication if/when I need it”, though this is not a situation that is as much to do with poverty as disability. There are also two statements dealing with either considering or attempting suicide. There are no statements like,

“I can make spontaneous plans without worrying that the place I want to visit will be physically accessible to me”

“My parents were never advised to institutionalize me”

“I have never been denied a needed work/school accommodation because someone decided it would give me an unfair advantage”

According to that list our oppression stems from out disabilities themselves and reinforces the idea that disability itself is horrible by having the only lived experience context be poverty and suicide, with no mention of how we are treated.

In this way the quiz actually reinforces the oppression of disabled people because rather than highlighting the privilege of not dealing with disability discrimination, the privilege lies solely in not being disabled.

I do understand that the quiz is not meant to be taken while critically analyzing each point of privilege because doing so only lends itself to the sort of “yes, but…” thinking used to deny personal privilege and by extension, the oppressions that must continue to maintain them.

The problem is that the quiz is delivered with no context, there is no disclaimer that acknowledges that due to the intersection of privilege and some of these statements, not everything will affect everyone equally. There is no acknowledgement that the quiz is incomplete and that some statements associated with privilege may actually mean disadvantage. there is equally no mention that due to various privileges of the people who compiled the quiz that not all oppressions might have been dealt with accurately or equally. There should also be a statement explaining that the score you receive at the end will almost certainly be inaccurate because of the aforementioned flaws and that depending on considerations of intersectionality it may be higher or lower.

Being aware of one’s privilege and how it interacts with experiences of oppression and how an individual can experience both privilege and oppression is important and quizzes like this one can be a useful tool to illustrate this but by simply releasing a quiz where all points are presented to have the same impact on everyone that they apply to. This is false. A point that is oppressive to one person can very well be a point of privilege to someone else, the reverse is also true.

I know that it would be impossible to deliver a quiz like this that is flawless, that would consider those intersectionalities and was completely free of the bias of the creators but without acknowledgement of those flaws, you will end up just reinforcing the knee-jerk “yes, but…” reactions that enter into discussions of privilege and oppression. So I wish that at the very least the test had been delivered with a disclaimer rather than simply released without context or commentary.

If it had included that context it would have been a more effective tool in starting conversations about the complex nature of privilege and oppression and how those two things intersect.

Privilege isn’t a checklist, it is far more complicated than that. For true or at least better awareness of privilege, it must come with an acknowledgement of how intersectionality functions, not simply the idea that someone can experience both points of privilege and oppression.

 

 

 

The Scapegoating of Disabled Voices & Activism

I really wish I could stop talking about Me Before You, but it keeps being a source of topics that require discussion. At least this time I can leave behind the book itself, I will instead try and tackle some of the things that have come out of the disability community’s backlash against the novel and film.

In my original post on the book entitled Why are You Complaining? Some People Actually Feel that Way. I tried to take on the all to common defensive argument that as long as some people actually experience certain things or opinions, any and all fictional representations of those experiences is acceptable. I wrote,

Here’s the thing, there is a big difference between actual human people having feelings about their actual lives and experiences of disability (which I’m not here to criticize) and a fictionalized account written by someone who isn’t disabled and which heavily romanticizes very problematic stereotypes about disability (which I am absolutely here to criticize).

Not surprisingly, people still tried to jump on the “but some people feel that way” bandwagon. The thing is that beyond outsiders pointing to their general existence, the voices of disabled people with nonterminal conditions who are or think that they might one day want to seek assisted suicide were glaringly absent. So I went looking for them.

It wasn’t easy, disabled people who are contemplating assisted suicide or who even simply have a more permissible attitude toward it often feel alienated from the rest of the community (which is a problem that requires addressing). Any discussion that includes an individual suggesting that they might one day want assistance with dying (or even expressing a not hardline stance against it) is almost immediately confronted by someone saying,

  • It is not better to be dead than disabled
  • There need to be more treatment and service options for disabled people
  • Ableism teaches newly disabled people to hate themselves
  • The risks of assisted suicide being legalized are too great for disabled people who will be at risk of coercion.

I did however eventually manage to speak to a few people on Twitter. I’m not going to link to any of them because I have witnessed some of the backlash they experience and don’t want to add to it.

The thing is, the more I spoke to them, the more it became clear that these people did not remotely fit into the strawmen arguments of people saying “but some people actually feel that way”, The people saying this, do so with the uninformed conviction that any disabled person who contemplates assisted suicide, does so for the same reasons as the fictional Will Traynor, that reason is that life with a disability is not worth living.

The thing is, not a single person I spoke to agreed. The primary reason for considering assisted suicide was pain (side note: anyone who tries to rebut this in the comments with “they just need better pain management” or “this is just a reason for more pain management research” will have their comments deleted). In every single case, they unequivocally denied the idea “that it was better to be dead than disabled”, They were also all in agreement that the book and film Me Before You was a horrible representation of disability and why someone might want to seek assisted suicide.

Most also expressed concerns about the legalization of assisted suicide that mirror those of people who are fully opposed to it. One going so far as to say that despite her own contemplation of assisted suicide, it should remain illegal because the threat to disabled people was to great to balance out the good it could do for the few who really need it.

At no point did I come across a real life Will Traynor, whose interest in dying mirrored the fiction created by Jojo Moyes. That is not to say that they don’t exist, I’m sure they do and I’m also sure that they don’t hang out on disability twitter, so the odds of my finding them are slim. Which is really to bad because then it might be possible to deconstruct how and why they feel the way that they do. It is hard to fight an ideology that we can’t even engage with. This is one of the many reasons that I think the wider disability community needs to start being more accepting of and dialoging with the people in our community who contemplate assisted suicide, because they exist in opposition of wanting death solely because of disability. The add a viewpoint that actually reinforces and maintains the concerns of people campaigning against assisted suicide and destabilized the all to common mainstream media view that it is disability for its own sake that should be escaped from through death.

On a more personal note, I have also found my words on Me Before You used to reinforce the pro-life agenda. Which is both abhorrent to me as a pro-choice feminist but also odd because as my quote above suggests, I don’t actually condemn anyone’s personal feelings on assisted suicide but rather how harmful fictional representations of assisted suicide and disability can harm and misrepresent disabled people.

The pro-life lobby is not an ally I want, they care far more for their political and religious agenda than they do for disabled people. They don’t affirm the lives of disabled people or care to fight to stop the ableism or lack of services that affect our lives, they also put me in the awkward position of defending Me Before You as their hyperbole on the subject can only undermine, thoughtful informed criticism of the story. One piece that linked to my blog said,

I haven’t (and probably won’t) see the movie, because I prefer to remember Finnick losing his life in a heroic act of self sacrifice in the fetid sewers beneath the Capitol, not (spoiler alert) committing suicide while his approving-yet-heartbroken girlfriend holds his hand, and the bottle of pills.

Um, Louisa never supports Wills decision, saying she comes to terms with it is better but also pushing it. Also she is also not holding the bottle of pills. Also that’s not how assisted suicide works. Pro-lifers like this blogger like to use buzzwords like “the essential value of life”. They however seem to care much less for the quality of that life because they don’t talk about the need for services, ableism or poverty. They only care that they can slot disabled people’s voices into their agenda. These are the same people who use children with Down Syndrome to try an limit access to abortion. With the same platitudes about the intrinsic value of life and no words on making the world welcoming for those children.

In this case people slot our words into their arguments, while in the case of the “people feel that way” crowd, they just assume they know what the arguments are. In neither case does it do justice to our opinions or our activism. In most cases it actively devalues them by either misrepresenting them or shrouding them in hyperbole to shore up arguments that we didn’t sign up for.

In all cases we are straw men whose actual voices and opinions don’t matter as much as the one’s that they can put into our mouths.