The Philosopher’s Dilemma: Why Different Bodyminds Deserve The Right To Live

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Summary: 

In the piece, “Unspeakable Conversations” author Harriet McBryde Johnson recounts her experience with meeting infamous philosopher and professor at Princeton University, Peter Singer. Johnson is a disabled rights activist a part of the organization Not Dead Yet and lives with a neuromuscular disease herself. Familiar with his ideologies relating to infanticide and mirroring beliefs in modern-day eugenics, Johnson was intrigued yet reluctant to meet Singer. Their first interaction is intriguing because Johnson sees some of her own peers chatting with Singer, the man that believes anyone with a disability should not be born/be able to live. They get introduced and suddenly start exchanging emails for a while until Johnson is invited to speak at his university to a group of students with a follow-up Q and A. Upon arrival Johnson notes the attentive audience nodding along to the illogical, quite frankly horrid arguments Singer presents to them. He is professional, respectful, and calm. When Johnson speaks, she adds more of a personal touch while keeping the same professionalism. Afterwards, the two end up going on a walk as they also say their goodbyes and it seems Johnson’s opinion of his character has changed a bit. The chapter closes with thoughts running through Johnson’s head about Singer, about how ignorant people can be when it comes to disability in general. She feels content with concluding that Singer is extremely misguided but truly believes he is doing something helpful. She cannot hate him or violently argue because the world is filled with Singer’s unfortunately, but she was able to make some important dialogue with him that could alter others’ minds.  

Quotes: 

“But I have trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice” (Pg. 10) 

“Within the strange limits of this strange assignment, it seems Singer is doing all he can to make me comfortable” (Pg. 18) 

“If I define Singer’s kind of disability prejudice as an ultimate evil, and him as a monster, then I must so define all who believe disabled lives are inherently worse off or that a life without a certain kind of consciousness lacks value.” (Pg. 26) 

Reflection: 

This reading wasn’t one of my favorites, but I think the writing got away from me towards the end. The theme that stuck out to me the most and seemed one of the most important was the power of rhetoric here. Since Singer had a professional, calm tone about him he would/will always have an attentive audience. Not to mention his status as a professor and famous philosopher. Singer has the privilege of painting his atrocious beliefs as something admirable because not only does he believe he is coming up with a real solution, but his status and demeanor demand interest and respect. If Johnson or anyone with Not Dead Yet were to speak out against Singer in a “aggressive” way that would be completely rational, an audience would see it as irrational depleting the other sides view immediately. Johnson knew for that reason she must remain calm but still added her personal touches in and also was professional. As we are all aware, many people similar to Singer exist in our world and they exist through their usage of rhetoric.  

Sinclair, Jim. “Don’t Mourn for Us”

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Summary:

Sinclair begins by addressing the way Autism is typically viewed, as a tragedy. This is how Sinclair sets up the scene for the rest of xyr message. Sinclair focuses upon the fact that many parents view and treat autism as an illness that is hindering their child from being ‘normal’.  This is not the case. Autism is part of their child and by mourning the child’s condition, the parents are alienating their child. Sinclair argues that it is the parents’ treatment of the child that prevents them from connecting and bonding with them. It is the parents inhibiting the relationship. Having a child is not something parents typically expect but it is something they need to be willing to work with. This is their child, still. Sinclair closes xyr letter by inviting the reader, parents of autistic children, to accept, support and join in their children’s life,

“I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.” Pp.1

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence.” Pp.3

“But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.” Pp.4

Reflection:

This will be fairly short. I do not much to say about Sinclair’s writings, except xe is right. I think what was said in Don’t Mourn for Us goes for all parents. You should never enter parenthood expecting your child to be just like you. They are a person. They will have different opinions, likes, dislikes, and way of thinking, their own personality. They are all ‘alien’. Autistic children are not that different from non-autistic children, they all need to be supported and guided by parents who accept them for who they are. I think I would personally change the audience of this letter to include the autistic child’s peers, because at the end of the day we are not just raised by our parents.

Adults ruin a lot of things…this is one of them.

To Grieving Parents: “Don’t Mourn for Us”

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“Don’t Mourn for Us” by Jim Sinclair

Sinclair begins their letter to parents by calling out the “trauma” that parents feel upon receiving a diagnosis that their child is autistic. They define autism as a way of being, and wishing for your child to not be autistic is akin to wishing for a different child. Then they talk about parents learning a new way to communicate with their children that is often outside of their expectations. Sinclair then talks about the grieving process that parents go through upon diagnosis, relating the grieving not to the loss of their child to autism, but the loss of their dreams of a neurotypical child. They tell parents instead of being sad at their child’s condition, they should be sad about the world that fights against their existence. Sinclair ends the letter with telling parents to look at their children and assist them in the world around them, help them where they can and fight for better living conditions for people with autism.

Quotes:

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5)

Analysis:

Sinclair is clearly responding to the immense amount of parents who exaggerate the grief over their child with autism, the ones who champion for cures or attend autism support groups because their “lives were ruined by autism”. It seems to me that they drafted this letter as a response to those parents, and to new parents, to let them know that while their grief is real, autism is not a death sentence nor an impenetrable wall. Here they are speaking specifically to parents of children with autism, with the hopes of giving them insight to the autistic experience of their exaggerated grief. Sinclair is speaking within the realm of someone with autism, someone who has worked within the autism community, and someone who likely has been the recipient of this exaggerated grief.

Thinking about this article, I think that they do a great job at calling out parents for their traumatizing behavior, saying that the “trauma” that parents experience for their kids is valid, but they have to be careful not to re-traumatize their own children with their grief. Part of why I am so adamant that they are speaking to exaggerating parents is the heavy emphasis that they put on the idea that the “normal” child never arrived. In the following quote, Sinclair discusses that the parents have a loss of a dream child that they could relate to and that would understand them fully.

“What it comes down to is that you expected something that was tremendously important to you, and you
looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–
and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to
hasn’t happened. It isn’t going to happen. No matter how many other, normal children you have, nothing will
change the fact that this time, the child you waited and hoped and planned and dreamed for didn’t arrive” (4).

Parents, with reasonable expectations of the birth of their child, should have a level of expecting their child to be different in some way. I know that in my family’s experience, my sister and her husband were fully of the mind that no matter what child resulted from the pregnancy, there would be happiness and joy at the life that they could provide for the child. We talked about the prospect for disability with my nephew, and are still watching as he grows to see what kind of child he will be. But regardless, he is their dream child because he is *theirs*.

That is to say that I do take issue with the following quote toward the end of the letter.

“This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t
know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents
of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it.
And because this alien child happened to drop into my life, that job is mine if I want it” (4-5).

I take issue with this quote because Sinclair is equating children with autism to aliens who just “land in (your) life by accident”. While yes, some pregnancies can be accidents, my nephew included, it is very clear that you are having a child. The child who is born to you is not an accident, regardless of however they experience life. I know that Sinclair was trying to make the point that for a parent, the way that their child will learn and experience the world will be foreign to them, but to me alien provides connotations of “unknowable”. And saying that you don’t know who the child *is*? They’re your child, plain and simple. Sure we don’t know what they will become, but that is true of every child. On top of this, I do not agree with calling a child, autistic or not, with the marker of “it”. Color me from flashbacks of reading “A Child Called It”, but if you must, at the very least name the child with “they/them” pronouns.

Perhaps I just have strong feelings towards parenting and the raising of children, but I definitely struggle to empathize with parents who see their own child as “other” or “alien”. Do you have to adapt to a whole new learning style on behalf of your child? Yes, but a similar notion can be said of every child.

Away from my parenting rant, I do think that this letter would be helpful to parents with children who are autistic. I think it is a validation of their feelings of loss, but also a call to action to not project their grief onto their child. It certainly sends a powerful message that doesn’t use flowery language to distort its purpose.

Philosophy and Ethics Debates are Once Again Disturbing Me

Isabelle S1 Comment

Harriet McBryde Johnson details in her story her meeting and eventual debate with Professor Peter Singer, who believes that disabled infants are not people and thus it should be legal for parents to kill their disabled child. Johnson, who is notably known for being a disability rights activist, who has congenital neuromuscular disease and occupies a motorized wheelchair, debated Singer and others with similar beliefs, and gave a full account of her meetings, emails and debate with Singer.  

One thing that I think captured my discomfort with this reading was when Johnson explained, “We should not make disabled lives subject of debate”(Johnson 11). I agree with her here, there is something sort of disturbing seeing in an academic setting the blatant disregard for empathy and emotion in some of these arguments. The urge for Singer’s perspective to become completely devoid of emotion and human contact – an impossible feat. As if distancing itself from compassion and delving solely into “facts” (which doesn’t equate to truth but that’s an entirely different discussion to be had) reveals an objective truth that defies the boundaries of morality altogether in its purity. YUCK! This seems to mostly come from nondisabled people in this story, where the distance between a person and “them” (being disabled people) is distinct, it seems to make the argument easier for them to have. The author here is much more patient here than I am, but I’m young and impressionable and quick to judge. It’s hard to appreciate the nuance that I know is there in these arguments when the topic of debate is — once again, like so many other seemingly pointless debates —  on who deserves to live and who deserves to die.

I must say however, that I am absolutely in love with this author’s voice. I can’t quite put my finger on why; maybe it’s because she’s a lawyer, maybe because she’s disabled, maybe because this is her story and she’s told it a hundred times over, but I really want to read more of her work after reading this! I love how she included so many details about the complexity of this situation, the people she’s aligned herself with and opposes, the debate and the trip she took to get there, every part of it is so captivating. I in particular love how she introduced Singer as, “The man who wants me dead”(Johnson 3). This sort of concise language is really refreshing, and her voice is so soothing and easy for me to read.

Peter Singer is Spooky as Hell

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  1. The title and author of the source 

Unspeakable Conversations // Harriet McBryde Johnson 

  1. An objective summary of the reading 

In this reading, the author tells a story of their experience with Peter Singer. Singer is an educator at Princeton University who believes in and fights for assisted suicide and infanticide of disabled peoples. The author is a disabled lawyer, fighting against Singer’s notions, in order to defend their own life.  

In the chapter, the author walks their readers through a series of events—the major ones being: when the author went to one of Singers talks in town, their email exchanges, and the author’s visit to Princeton where they spoke to a class with Singer, toured the campus and had lunch. Each of these events paint a picture of who Singer is, who the author is, and the paradoxical exchange between them. The author brings their own perspective and voice to the writing by inserting further explanation regarding their positionality and beliefs, Singer’s beliefs and actions, and how the two clash/collide. Woven throughout the anecdotal evidence is commentary regarding how the author felt, the thoughts that came up for them, and reflections looking back.  

  1. 3 or more quotations (with page numbers) 

Regarding their differences: 
“To Singer, it’s pretty simple: disability makes a person “worse off”. Are we “worse off”? I don’t think so. Not in any meaningful sense” (McBryde Johnson pg. 10-11). 
“I define Singer’s kind of disability prejudice as an ultimate evil, and him a monster, then I must so define all who believe disabled lives are inherently worse off or that a without a certain kind of consciousness lacks value. That definition would make monsters of many of the people with whom I move on the sidewalks, do business, break bread, swap stories, and share the grunt work of local politics… I can’t live with a definition of ultimate evil that encompasses all of them” (McBryde Johnson pg. 26). 

Regarding non-normalizing:  
“…I have no more reason to kill myself than most people…” (McBryde Johnson pg. 7) 
“…to try to prevent most suicides while facilitating the suicides of the ill and disabled people is disability discrimination” (McBryde Johnson pg. 20) 

  1. A personal reflection naming 2 or 3 take-aways from the reading 

This was such an informative read. I think the way the author spoke about the opposition/togetherness between themselves and Singer was so digestible. They offered complex and deep ways of thinking through a story + analysis lens. I think the story itself was pretty bizarre. It’s one I’ve been sharing with my friends. We’ve been discussing it a bit: how can a person have such specific and seemingly impractical beliefs? How have they not been put in their place? Then again, folks support Trump.  

In reflecting, I am brought back to the idea that Black folks are not responsible for educating nonBlack folks about racism; womxn are not responsible for educating men about sexism. I don’t feel like the author is responsible for putting themselves through that sort of discrimination. But also, they chose that. I don’t know. Lots to think about.  

Unspeakable Conversations – a RAB style review

Djellibeybi19 Comments

Summary:

Unspeakable Conversations, written by Harriet McBryde Johnson, is an essay presented in the book Disability Visibility, edited by Alice Wong. In which she talks about the relationship and correspondence she had with Peter Singer, a professor of philosophy at Princeton. Harriet McBryde Johnson was a lawyer and disability activist with a neuromuscular disease. She talks about the emails she sent to the professor, their debates, and how her views on people like Singer changed when confronted with them face to face.

Reflections:

I must say, I’m surprised at the very cynical nature the author takes with this essay, though I probably shouldn’t be. This woman has a cause to uphold and think of. She is a representative on behalf of her people, going off to a foreign land to debate whether or not they should exist – contentions and misgivings are bound to arise, no matter who you are.

All thoughts, no matter what they come from or how gruesome their content, must be granted an audience at some point, and when we suppress the conversation, it will force it’s way into consciousness. Ideas are hard to kill. Much easier to contain within a few members, but even then you still run the risk of dangerous ideas entering in, the same way we run the risk of getting a disease, though we immunize and mask and regulate. There is no full proof way of escaping ideas, unless by complete isolation which is unsustainable. While I don’t agree with the views of Brian Singer on infanticide and eugenics, and I don’t hold the same views as Harriet Johnson, I will grant them both a seat at the table of ideas.

Notable Quotes:

“Are we “worse off”? I don’t think so. Not in the meaningful sense. There are too many variables.” Pg. 11

“We should not make disabled lives subject to debate.” Pg. 11

“I keep forgetting that even people who know me well don’t know much about my world.” Pg. 14

“But like the protagonist in a classical drama, Singer has his flaw. It is his unexamined assumption that disabled people are inherently “worse off,” that we “suffer,” that we have lesser “prospects of a happy life.” Because of this all-to-common prejudice, and his rare courage in taking it to its logical conclusion, catastrophe looms.

Professional Relations with the Devil

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“Unspeakable Conversations” by Harriet McBryde Johnson

Summary:

This piece is about Harriet McBryde Johnson, who was an American author, attorney, and disability rights activist. She details a particular struggle with a well-known Australian moral philosopher Peter Albert David Singer, who is currently the Ira W. DeCamp Professor of Bioethics at Princeton University. Despite protests from Johnson’s activist peers, she decided to debate with Singer multiple times in public forums and maintain respectful contact with him through email. As a strong proponent for genocide, Singer exhibits a great threat to the disabled community because of his large platform, status, and speaking skills. Throughout the piece, Johnson remarks on how kind and respectful he is to her despite his belief that she should have been killed as an infant so as to not burden her parents. Johnson grapples with the fact that people can hold incredibly dehumanizing and dangerous beliefs and still be pleasant people to be around. She also grapples with the issue of whether she should engage with a man like singer in any way, because speaking with him could give the sense to the public that she is legitimizing his standpoint as one that is worthy of consideration. During her experience of debating with Singer and maintaining a respectful professional relationship she highlighted many various accessibility obstacles, showing that much of our culture’s infrastructure agrees with Singer’s ideas.

Quotes:

-“He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was….” (Wong, 3).

-“We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life” (Wong, 20-21).

“If I decline, Singer can make some hay: ‘I offered them a platform, but they refused rational discussion” (Wong, 11).

Reflection/Response:

Something I really appreciated about this piece was how Johnson expressed some of her major counterpoints to Singer’s ideas, specifically the one about assisted suicide. Singer believes that disabled and terminally ill people should be able to access assisted suicide, and doesn’t understand why she disagrees, because isn’t disability activism about providing more choices and access to disabled people. However, she counters that idea by saying that if we fixed the accessibility problems in the world, many disabled people would not want to commit suicide because then they would be able to function the way the want to in our culture. This point really struck me, because I had been on the fence about assisted suicide and now I’m unequivocally against it. This piece really made me think about how we define good and evil in the world, because as shown with Singer, evil people usually believe they are doing good in the world. It also made me think about how our culture so heavily focuses on social norms of respect and kindness to the point where Johnson was never truly able to express her hatred of him for fear of delegitimatizing herself as a professional, intellectual speaker.

“He Insists He Doesn’t Want to Kill Me”: Assisted Suicide, Disability Rights, Peter Singer and Harriet McBryde Johnson

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Summary:

“Unspeakable Conversations”, the first chapter of Disability Visibility, concerns the correspondences of its author (and attorney) Harriet McBryde Johnson and Australian philosopher Peter Singer. Over the course of the chapter, the two professionally debate ethics in infanticide, how truly “bad off” (page 21) someone with a disability can really be, and whether that ultimately puts their right to live in the balance through assisted suicide programs. Their debate began in 2001 at Charleston during Singer’s lecture “Rethinking Life and Death” (page 25), where Harriet represented a disability rights organization called Not Dead Yet, and challenged his views. The unofficial debate continued over email until their next meeting at Princeton in 2002, where Singer presented his lecture once more, arguing for a ‘humane’ infanticide of those who would be deemed a burden on society to let live, claiming that such individuals are not actually ‘people’ at all. Johnson writes on page 21 that according to Singer, qualifying as a person requires “Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live.” How are such preferences even measured; how is this awareness detected? Unknown so far to science. Not to mention that millions of sentient people (for example those in a coma, nonverbal autistic people, or those with locked-in syndrome), would lose their right to life. This would, at birth, include the author, who could not speak for herself if an institution deemed it just to put an end to what they might see as a societal liability, as if some abled version of herself could exist as a theoretical alternative. As if she is incapable of a happy life from birth. And how are those left to live disabled lives supposed to feel? That they should not exist, that their joy is a glitch in a life that otherwise is just “bad off”? No.

Quote Bank:

“In the lecture hall that afternoon, Singer lays it all out. The ‘illogic’ of allowing abortion but not infanticide, of allowing withdrawal of life support but not active killing. Applying the basic assumptions of preference utilitarianism, he spins out his bone-chilling argument for letting parents kill disabled babies and replace them with nondisabled babies who have a greater chance at happiness. It is all about allowing as many individuals as possible to fulfill as many of their preferences as possible.” – Page 27

“Yes, I am shaking, furious, enraged—but it’s for the big room, two hundred of my fellow Charlestonians who have listened with polite interest, when in decency they should have run him out of town on a rail.” – Page 28

“I’m engaged for a day of discussion, not a picket line. It is not in my power to marginalize Singer at Princeton; nothing would be accomplished by displays of personal disrespect.” – Page 31

Reflection:

I greatly enjoyed the way that Johnson brought bold professionalism to a tired debate, and recentered the marginalized voices that Singer’s rhetoric directly insults and harms. To the reader, please take my reading of this chapter with a grain of salt, because I admire Johnson’s cause, and stand by her efforts to disrupt dominant ableist rhetoric at the heart of where it lives (academic institutions being one of these spaces). 

What I dislike is Johnson’s seeming gratification in confronting Peter Singer. She appears somewhat pressed to “win”, and while I understand she is essentially arguing for her right to exist, I feel that her agenda in doing so precedes her thinking somewhat. Take for example this quote from page 36: “Singer joins the discussion until he elicits a comment from me that he can characterize as racist. He scores a point, but that’s all right. I’ve never claimed to be free of prejudice, just struggling with it.” I completely understand that erasing prejudice is a process, but the issue with making racially offensive comments is not that they ‘score points’ for the opposing side of a tangentially related argument. So, I think an additional sentence of reflection from the author is needed here, at least. Some instance of connection between Singer’s misunderstanding of disability and her alleged mischaracterization that could humanize the discussion a little. Obviously, if Singer doesn’t understand how a child with a mobility impairment might have fun at the beach, he needs some education! That said it all for me. And while yes, it’s a problem that he takes up media space with his rhetoric, maybe he shouldn’t be referred to as “the Evil One” (page 26) in public print; it just seems immature and delegitimizes professional discussion. I saw similar disregard in the following quote from page 40: “when a student asks me a question […] The words are all familiar, but they’re strung together in a way so meaningless that I can’t even retain them—it’s like a long sentence in Tagalog.” So, Tagalog is analogous to meaningless? I found this to be an extremely poor choice of language. I live with a Vietnamese speaker, and it’s not uncommon that my family members will mock his conversations with his mom as gibberish, so to me the Tagalog comment was honestly trashy.

One other example of this behavior that I find problematic and somewhat ironic is on page 27, as Johnson writes: “As an atheist, I object to [Singer] using religious terms (‘the doctrine of the sanctity of human life’) to characterize his critics”, already demonstrating an intolerance for religious beliefs on page 25 “In fact, no god put anyone anywhere for any reason, if you want to know”, but simultaneously bemoaning the fact that “they don’t want to know. They think they know everything there is to know, just by looking at me. That’s how stereotypes work. They don’t know that they’re confused[…]” later on that same page. I wish that Johnson would be as compassionate towards others’ ‘struggle’ against prejudice as she is to herself, because I found her absolute assertion that God is not real, next to a call for open-mindedness, to be hypocritical. And I’m an atheist, too. But I admire more than anything her bold stand for the recognition of damaging and dominant cultural rhetoric, and found the chapter to be well-paced and impactful.

Johnson, Harriet McBryde, “Unspeakable Conversations”

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Disability Visibility: First-Person Stories from The Twenty-First Century, edited by Alice Wong, Vintage, June30th, 2020. (pp. 3-27)

Summary:

The author, Harriet McBryde Johnson, starts her narrative by dropping the reader right into the central conflict of her story. She is at Princeton giving a presentation and participating in an ethical debate against Peter Singer, a well-known Animal rights Supporter and Utilitarian philosopher. Johnson is there to counter Singer’s arguments for selective infanticide. This is not the first time these two intellectuals have gone head-to-head, the first time they engaged in open discourse being in 2001 over disability-based killings and assisted suicide. Despite Singers subscription to veganism and animal rights narratives, Singer strongly supports the killing of disabled people, a group Johnson belongs to. Johnson’s story while featuring some of the argument exchanged between her and Singer is not focused upon the content of their debates. Instead, she focuses upon the how the discussion was conducted. Most of the chapter is spent discussing how Johnson felt overwhelmed by the unfamiliar environment she had entered during each debate. Her being out of her element garnered her criticism from fellow disability rights activists and lawyers. Johnson describes how she felt guilty and foolish for even engaging with Singer. She describes how she entered her interactions expecting Singer to be discourteous and view her as less than human, only to be shocked when he did not. At one point, Johnson describes Singer as the “Evil One”.  Her interactions challenge her ability to hold this view of Singer. The most notable feature of the chapter is Johnson and Singer’s interactions. They both act with grace and treat each other like other humans, there is a respect between them. This surprised Johnson and leads into the larger realization of the chapter, though she cannot agree with Singer’s world view she can not disregard Singer’s humanity. Johnson ends the chapter by extending this sentiment to other’s who see her existence as miserable and declares her intent to keep fighting against ableist rhetoric.

Quotes:

“I shouldn’t shake hands with the Evil One.” Pp.8

“… I have been sucked into a civil discussion of whether I ought to exist, I can’t help but be dazzled by his verbal facility.” Pp.9 (This is a section where the whole paragraph is solid gold. Harriet Johnson’s emotional turmoil over the debate is highlighted very well.)

“I realize I must put one more issue on the table: etiquette.” Pp.13

“I feel like an animal in the zoo. I hadn’t reckoned on the architecture, those tiers of steps that separate me from a human wall of apparent physical and mental perfection, that keep me confined down here in my pit.” Pp.16

“I can’t live with a definition of ultimate evil that encompasses all of them. I can’t refuse the monster-majority basic respect and human sympathy.”  Pp.26

Reflection:

Before I go into my thoughts on the essay I would look to establish that I find most of what Singer says to be offensive. He reminds me of a typical theorist, stuck in their version of the world struggling to fully put themselves into reality. But I can not in good faith say I find all of Johnson’s points convincing. To me both sides have flaws, but Johnson’s side is more appealing and fosters more understanding. All the issues I have with Johnson’s arguments are minute compared to the issues I find with Singer’s. I will end by saying I understand how he reaches the conclusions he does, but that not make them right.

I do not think the ethical debates discussed in this entry of Disability Visibility should be focused upon too heavily. While they are very important conversations, I do not think they are major take away from the narrative put forth by Johnson. For a while now the internet has been the home of the war between the “leftists” and the “anti-SJWs”. I do not know if these are what either group currently identifies as, but they engage in a similar debate culture to the one described by Johnson. I am not talking about the idea of debating an ethical/moral issue in a public forum. I am talking about the idea that to engage with the other side is to be a fool and secede more ground than one should. I think Johnson does a wonderful job in illustrating how this mindset looks and feels. This view tends to inhibit progress quite a bit and requires a considerable amount of personal reflection to overcome. I think the internal and external conflict Johnson describes is a good place to jump off into an examination of a grey world view. Recently most of the discussions I have seen strongly suggest one side is right and the other has little to offer, in other words a black and white world view. Johnson is openly acknowledging that perspectives flaws. This is also the first time the word “evil” has been used explicitly. I will make the disclaimer that I do not believe any author we have read has thought of society as evil but combined they do paint a narrative where society is ableist and is sort of evil for being ableist.  It is hard to express how this affects the audience and the exigence’s palatability. If I had to explain it, I would say defining one side as evil and the other as good injects a rot into the conversation so no one can benefit from the interaction. To be clear, this explanation toes the line of respectability politics and is lacking in nuance. It is important to realize rhetoric is a two-way street, often the rhetor is the unwilling audience to the audience and audience an unknowing rhetor. The audience will either affirm or deny the rhetor’s message. In Johnson and Singer’s discourse, they have a literal audience in the students watching, but they are each other’s main audience. Their discourse extends past the staged debate to more personal interactions. We as a third party will probably never know the actual results of these discussions, but we can assume the effect on Johnson was a blurring between good and evil. These interactions also reaffirm her path to her, which I appreciate. I am glad that she was able to take this experience, use it as motive and grow from it. I think this is what the outcome of all discourse should ideally be.

On Living: Unspeakable Conversations

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cw: infanticide, assisted suicide

“Unspeakable Conversations” by Harriet McBryde Johnson

Johnson begins her essay talking about Peter Singer, the man who wants her, and disabled people like her, to die instead of being born. She briefly mentions that she accepted a conference where he invited her to speak at and how she is often the token disability advocate. She then addresses that there are several questions that people tend to ask her, which follows into the expanded answer of said questions. Johnson names her disability as muscle-wasting disease and talks about the way that she looks and the questions she gets on the street, to how she first meets Peter Singer as a member of Not Dead Yet, a disability rights group actively fighting Singer’s ideas. Johnson attends his panel on infanticide and assisted suicide, refuting his points and finding him infuriating but loquacious. Their debate turns into letters, which eventually turns into an invitation to speak at Princeton. With hesitancy, Johnson accepts and sets the travel plans, which go awry when the airport breaks her wheelchair. With a fixed wheelchair and a short night of sleep, Johnson arrives at Princeton and begins her lecture to Singer’s students. After answering their questions, Singer asks for a walk where they discuss more of Johnson’s points of view. This leads to the evening faculty discussion where they discuss assisted suicide and Johnson does her best to offer commentary on philosophical ideas. Returned home, she has received a book from Singer and recounts the episode to friends and colleagues. While some are satisfied, others find fault that she would engage in civil conversation with him. She later questions her internal motives for conversing with him and the morality of his argument which concludes with her vision for the future.

Quotes:

“But that’s the way it always works, isn’t it? They’re always animals or vermin or chattel goods. Objects, not persons. He’s repackaging some old ideas. Making them acceptable” (24).

“But even if I’m a token, I won’t have to act like one… It’s an old trick, and I’ve laid myself wide open” (11).

“‘You kind of like the monster, don’t you?’…’Yeah, in a way. And he’s not exactly a monster” (24).

Analysis:

Right off the bat, Johnson leads in with some heavy hitting commentary on a very disturbing topic, one that is a high topic of debate today. I confess that I do have my own opinions on these arguments but they are still largely being shaped by alternative points of view. But to start, Johnson is arguing for her right to exist as a disabled person, more specifically, her right to exist at all or to be killed as a child. “‘You kind of like the monster, don’t you?’…’Yeah, in a way. And he’s not exactly a monster” (24). Breaking down the quotes from the text, it is clear that Johnson has come across what many people encounter during these divergent topics, a human. I do not mean that to be funny or clever, but specifically in the context of how her sister conflated Singer’s humanness to the Nazis. That is the issue in these debate spheres. It would be so much easier if the opposition was a monster, someone clearly (perhaps visibly) evil and deadly. But the reality is that so many of the people who propagate these downright deadly and repulsive ideals are the people you pass by on the street, your doctor, your cashier, your coworker. In any other situation, talking with them and engaging is fine, pleasant even, but then they drop the bomb that they believe every person with a severe mental disability should be killed out of mercy. So the answer is both yes and no. Singer is not a monster because he is capable of kind acts, thoughtful conversation and living in good relationship with others. But he is clearly a monster to all people with disabilities, or anyone involved in the eugenics act.

“But that’s the way it always works, isn’t it? They’re always animals or vermin or chattel goods. Objects, not persons. He’s repackaging some old ideas. Making them acceptable” (24). And his argument is one we know well: they (insert identity here) don’t have rational thought or are so dependent that they can’t find true joy in their life, are they even capable of making their own decisions? Or giving the whole power to a family member or a medical system who has no say in the individual’s life choices. It is even worse when you consider the pretty packaging that so many people offer the monstrous point of view. Using relatable, modern terms, catchy slogans and professional lingo, it all sounds very palatable. Of course parents would rather not go into medical debt for a child who is disabled, of course parents would like to raise a happy, healthy baby. And if you had the opportunity to genetically alter the baby so they would not be disabled? Why not? But the issue is that these eugenics principles are being packaged with new wrapping paper to suit their methods. No matter what, they want to take the rights away from people with disabilities, never giving them a chance to live and decide how to live their own lives. People with these polarizing arguments are quick to humanize themselves and dehumanize others.

“But even if I’m a token, I won’t have to act like one… It’s an old trick, and I’ve laid myself wide open” (11). And we all fall into a similar trap as Johnson did. If we don’t engage in discussion at all, how will our voices and views be heard? In matters such as this, it is vital that the life point of view be heard and seen, not brushed aside. However, in engaging at all, you are letting the opposition know that their argument has some sort of ground, ground enough that you think you have to refute it. So how do we combat this? I think the larger question is, how do we fix society so that these aren’t even debates anymore? There is a lot to be done to our medical and community support systems for even the current lives to be at peace, let alone any future lives brought into the world. So in the meantime, while it is difficult to give these ideas a platform, I think we have to debate. Because even if in a debate we change one person’s mind in a room of fifty, that person can go and change another person’s mind. It is a chain reaction of knowledge sharing and empathy, one that will take a while. But first, we have to actually see disability today, acknowledge the people who are living every day, full and complete lives, and do our best to offer support where we can.