analogies & intersections of disabled realities

I find myself thinking a lot about what it means to portray a disabled person in all of their complexity, whether it be in stories, songs, news articles, etc.

Last week, one of my classmates in my creative writing workshop class suggested that I listen to the song Epilogue by The Antlers on their album, Hospice, drawing a corollary between this song and my novel-in-progress. The past couple of days, I have been absolutely mesmerized by the entire album.

Pete Silberman, the leading singer, has stated that this concept album is about an emotionally abusive relationship that he had. The tricky thing, though, is that Silberman uses an analogy of a hospice worker falling in love with a woman with terminal bone cancer who he is caring for, and their subsequent downward spiral of a relationship, to speak about his own experience that does not involve cancer, hospice, etc. The usage of this analogy is obviously a complicated, and perhaps problematic choice. When asked why he used it, Silberman said:

A hospice can be representative of what emotional and psychological abuse can do. Let’s say as a hospice worker, you’re taking a lot of verbal abuse from someone who is dying, cause they’re, absolutely and rightfully so, bitter about what’s happening and feeling like it’s completely unfair, which it most obviously is. And you’re in the position of feeling like you have no right to complain about your situation because it’s so much worse for them. So you think the least I can do is give them a punching bag.

In later interviews, Silberman expressed some concern over using this metaphor, though, especially when fans began approaching him with their stories of losing loved ones who had cancer. He was somewhat taken to task for perhaps “biting more off than he could chew.” He has been reluctant to share many autobiographical details, and has been somewhat frustrated about listeners’ tendencies to try to piece together the definite story.

Hospice is a heartbreakingly raw exploration of an abusive relationship, yes. (The lyrics are absolutely devastating.) In some ways, this album follows The Antlers everywhere. Silberman has noted that he was very angry at the time of making this album, and that it was, in some ways, an act of vengeance. Still, though, the lyrics contain so much nuance; so illustrative of the experience of being in love with someone even as one is being consistently hurt by them.

I have so many questions, though. Sometimes, I think, the drive to find out autobiographical details is precisely because of the marginalized subject matter being addressed. I wonder what it would have been like for fans who related to the songs because of their own experiences with people with cancer in their lives. What it was like for disabled people with cancer themselves to listen to and read the lyrics of this album? What does it say about our ableist cultural imaginary that it is so easy to imagine a hospice patient abusing their caretaker, when, frankly, caretakers in general are much more likely to abuse disabled patients? How much does analogy take away from the specificity of direct experience? How do I listen to this album and intimately connect so very much with the theme of emotional abuse, and (past and present) trauma, while also feeling that the concept / analogy does a disservice to other disabled realities? Also, how do we hold the complexity of a sick and/or disabled person using whatever power they have, and the experience of being pigeonholed by trauma, to abuse and lash out at loved ones?

I hope someday for there to be such nuance in conversations about disability that analogy becomes complex and radiant; not simply reduced. I long for abuse to be discussed always in connection with systemic oppression, and to not simply become “the end of the story.” In some ways I feel that this album tries to start such a conversation with its moments of incredible, multilayered complexity. In some ways I feel let down.

 

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Anna Stubblefield & Disabled People’s Sexual Agency (or lack thereof)

TRIGGER WARNINGS: (possible) rape and sexual abuse, ableist rhetoric around intelligence, development and communication, racism

I’ve been mulling over the case of Anna Stubblefield for a while now, and trying to think of the best way to write a blog post about it here. I am still so puzzled, and maybe that is just the only thing to be sometimes. I’ve tried to condense this post as much as possible, but because the case is so complicated, it is somewhat long.

A brief overview, based on details gleaned mainly from this article in NYT:

+ Anna Stubblefield was a philosophy professor at Rutgers University, and an a white, presumably able-privileged disability rights activist. She learned a great deal from her mother, who was also an activist, about working with disabled people to provide better accommodations. Her ex-husband is a black tuba player and classical composer and they have two kids together. Anna was / is very involved with anti-racist work as well as other social justice issues, too.

+ Several years ago, she began to work with a disabled black man, D.J. or DMan, who has cerebral palsy and is presumed to “have the mental capacity of a toddler” (along with a “very low IQ”). She disagreed with the professional assessment of D.J.’s intelligence and social / relational abilities, and, at the request of his family, began to work with him using facilitated communication, which is a contentious method that potentially allows disabled people to communicate, but which has also been largely discredited (for an overview of the ways in which it has been debunked by mainstream scientific discourse, see this wikipedia article). It is assumed that it is actually the facilitators’ ideas and thoughts that are being communicated, and that the disabled people in question cannot communicate this way.

+ However, many people within disability justice communities, including many disabled people, argue that mainstream perspectives on facilitated communication have an obvious ableist bias and that this method should not be discredited. From this marginalized perspective, DMan’s agency should be respected, and, for example, the ideas presented in this article in DSQ, written by him using facilitated communication, should be respected.

+ Supposedly, Anna and DMan fell in love with each other and had an affair. When Anna told his family about the affair and that they wished to get married, his family was horrified and pursued a legal case against Anna, claiming that there was no way D.J. could consent to a sexual relationship with Anna, and that she had raped him. As this case has been proceeding, many different arguments have emerged, some of which can be reviewed at the following links:

In the face of all of this media coverage, and so much more, I still remain confused. Obviously, I care more about what disabled people, activists and otherwise, have to say on the subject. It’s clear that DMan has no voice, or is granted no voice, in all of this. The judges do not allow any facilitated communication to take place in court because it has been scientifically discredited. I also wonder about how, as a black man, he is also shunted into categories of exclusion and abjection. What kind of power dynamics are at play between a largely white and academic disability activist movement on the one hand, and a much less privileged black family on the other? These are all really significant questions. It seems that Anna really believes she had consent, and I don’t know what to say to that. So many “taboo” relationships are just outright lambasted rather than paying attention to the interstices and nuances. But, on the other hand, what if it is true that DMan was raped, violated, and given words that were not his own? Our legal system relies on the ability to find definite answers, but in this case there don’t seem to be any, really.

 

 

Class Facilitation Plans 2/22

Hi everyone! For our class tomorrow, Ella and I are planning to do a couple things which we wanted to give you a chance to preview if you want:

  • We will show the first five and a half minutes or so of a video, Shit People Say (to Sick and Disabled Queers)https://vimeo.com/65271299
    • Trigger Warnings: ableism, ableist slurs / language, sexual content, cissexism
    • Notes: has subtitles, no image descriptions, has at least one part where ableist slurs and language (intentionally?) go by very fast, very US-centric
  • Like last week’s facilitators, we will hand out paper copies of a worksheet in class, with questions about the readings. We probably won’t be able to get to all the questions, but you will have a chance to work on whichever ones interest you the most individually and, if you want, in small groups (not required though). You may also access and edit the worksheet online here: https://goo.gl/FzrWXf

See you soon!

~Shana