“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.

What does “Disability Studies” mean?

“To me, disability is not a monolith, nor is it clear-cut binary of disabled and nondisabled. Disability is mutable and ever evolving.” Alice Wong, Disability Visibility, Pg. xxii

I tend to interpret Disability Studies in three parts. Firstly, that Disability analyzes the history of the Disabled. How they lived in the past. How the attitudes and culture around the disabled has changed over the centuries. Disability is not a new phenomenon, and it has evolved and changed over time. Popular attitudes toward the disabled have and do change – with every moment it seems. And even how the disabled view themselves have changed significantly. How we have treated them has changed. Trying to treat those with disabilities as humans and deserving of love and respect has never been easy, but it is a necessary part of understanding who we are as humans. We can analyze the rhetoric of the past, the record of the ancients, to inform ourselves today.

Secondly, Disability studies analyzes the current climate of disability as it stands now – whether it be in popular culture, in day to day interaction, in social programs such as hospitals and housing services, in religion, in government, and on and on it goes. Now there’s a thought! We are all concerned about equality and representation in media and politics, but how many disabled politicians do you see in government? Why shouldn’t we have people with disabilities in positions of power? Yet I can’t name one physically or mentally disabled person in office today – the only indicators of disability being that a certain representative is claimed to be “insane” or “off their rocker”, which I tend to take with scepticism. A disabled person is usually as capable as an able-bodied person, but it’s still rare to see them in power.

And finally, taking the past and present into consideration, we decide what to do for the future. How can we improve the lives of the disabled, and everyone in general? What actions can we take to stand with and support those with disabilities. What actions are actually helpful and which are harmful? These are things that kind of have to be learned through trial and error, as everyone is different, and what is offensive to one is benine to the other. So, learning what we can, we make our choices and decide how we are going to act, and this will determine the future of the disabled, and by extension, the future of us all.

Where should we go from here?

“I am not ashamed that I cannot fast, but I know many who are, even though they are excused, […]. I miss fasting, but I’m happy to take on my newest mission of reminding those who can’t fast that there is no reason to put themselves at risk.” Maysoon Zayid, “If you can’t fast, give” –Disability Visibility, Pg. 38.

Religion – I come from a Christian background, but I would be interested in learning about how other religions handle disability (e.g. the muslim religion as described by Maysoon Rashid, in her essay, “If You Can’t Fast, Give”.)

“I think that if we limit people with disabilities from participating in science, we’ll sever our links with history and with society. JI dream of a level scientific playing field, where people encourage respect and respect each other, where people exchange strategies and discover together.” Wanda Diaz-Merced “How a Blind Astronomer Found a Way to Hear the Stars” – Disability Visibility, Pg. 173, (also available as a Ted Talk)

Education accessibility – particularly in the physical sciences, (Chemistry, Physics, etc.)

“While retaining the term disability, despite its medical origins, a premise of most of the literature in disability is best understood as a marker of identity.” Simi Linton, Claiming Disability – “Reassigning Meaning”, Pg.12

History of vernacular – I’m a fond fan of the nineteenth century. Got to love Charles Dickens and Jane Austen.

What has stuck out to me so far?

The book, “Disability Visibility” was an interesting read. I haven’t read the whole thing, but I have a fairly wholistic view of the piece. It was intriguing to read about different stories. I watched the video, “How a Blind Astronomer Found a Way to Hear the Stars” while reading the transcription of it written in the book. I appreciated the video because there were some elements of it that could not be transcribed to page, but I understand what the book was going for with this, coming up with a unique presentation of disability and how those who are disabled can and do participate in scientific discovery. I found that to be extremely fascinating, the process of sonification -turning data points into sound bits to make it possible for the visually impaired and blind to analyze the data (and often catching things those who see the data miss). I wonder if it can work with IR graphs in the chemistry department. IR is a (relatively) cheap and (relatively) easy way to determine the functional groups (alcohols, amines, carboxylic acids, ketones, etc.) of a molecule, and I wonder what it would be like if it was sonified. It’s an interesting thought. Chemistry is one of those subjects where it helps to be able to see what your doing, but a major part of it is analysis of data. What things can the blind man see, if we give him the opportunity?

I also found Maysoon Zayed’s essay on being a devout muslim with disabilities to be really fascinating. It made me reflect on my past and the place those with disabilities participate in religious groups. I would love to examine religion more, and the place the disabled have in Christian and Pagan cultures.

I’ve found in my brief life that a great many of the disabled community are kind and generous people who take their faith seriously. I’m reminded of a woman I’ve known who went by the name “Rolly”. She was wheelchair bound, and tried to attend church as regularly as possible. She was a sweet old lady. She would thank me for singing at church in her slurred speech, and she would often talk about missing her mother, a woman who had long passed into eternity. I haven’t seen Rolly in a while, I believe she has passed in the last year – but I may be wrong on that point. She was a sweet woman – one you don’t easily forget. It was sad when she wasn’t able to attend church when covid happened. But it was also beautiful how my church came together to make her feel connected; connecting her to the virtual service, meeting with her at her place when they could, and even singing Christmas hymns outside her window, when they couldn’t be face to face. Those were hard days, and those were beautiful days. It’s sad when a church treats people like Rolly with disdain – she was an essential part of the ministry there, and it won’t be the same without her and people like her. I wish I can say with more certainty what happened to her, but I honestly can’t – I’m sorry.

I found the readings to be most interesting when it covers the history of certain terms, like crip, disabled, ableist, in the vernacular of the disability community and in disability studies. I have never used the word crip before this class, and it’s not a word I intend to use much outside of this context. It’s kind of like the “N-Word” for the black community, and it’s unspoken rule: “It’s okay if a black person uses the word – but if your not black it’s racist.”. Crip occupies a similar space, but with less intensity. I don’t personally adhere to the exclusivity rule of using these words, but I recognize it as part of our culture at the moment, and the collective has the power to ruin me if I use it in common parlance, so I’ll be respectful.

All in all, this class has been rather interesting and has brought up some intriguing subjects. I can’t say it’s my favorite class of the quarter, but it’s certainly engaging, and the professor has done a good job.

Resources

Alice Wong, et al., Disability Visibility, Vintage books (a division of Penguin Random House LLC), June 2020.

Simi Linton, Claiming Disability: Knowledge and Identity, NYU Press, 1998.