12/19/2016

Euthanasia enthusiasm

by Jan Grue

I was never a great admirer of D.H. Lawrence, even as a teenager. I read Lady Chatterley’s Lover, probably expecting some sort of frisson, some Vitalist thrill, even though the book could hardly carry the same impact in the 1990s as it had on its original publication. That thrill, however, depends entirely on one’s capacity for literary identification – with Lady Chatterley’s erotic awakening, or with Mellors the gamekeeper’s forceful physicality.

Unfortunately I was a wheelchair user, and so instead I couldn’t help identifying, on some level, with Clifford Chatterley. Unlike any other character I’d encountered in the Western canon, he even used a power wheelchair – inexpertly built and prone to breakdowns, but clearly a distant ancestor of the Permobil Trax chair I used – and still use – every day.

Clifford Chatterley is not what literary scholars would call a round character. He is perhaps best understood as a cobbled-together set of neuroses, hostility, and bitterness, the very model of what Tobin Siebers critiqued as the Freudian caricature of a disabled person: Wrapped up in narcissistic anxiety over an equally damaged body and soul.

I reacted to Lady Chatterley’s Lover more or less instinctively, with visceral unease, while reading it in my teens. On the level of comprehension and analysis, things fell rather more solidly into place a few years later, when I came across John Carey’s book The Intellectuals and the Masses. There, Carey quotes the following words from Lawrence’s letters (written in 1908, a full two decades before the publication of Lady Chatterley’s Lover):
"If I had my way, I would build a lethal chamber as big as the Crystal Palace, with a military band playing softly, and a Cinematograph working brightly; then I’d go out in the back streets and main streets and bring them in, all the sick, the halt, and the maimed; I would lead them gently, and they would smile me a weary thanks; and the band would softly bubble out the ‘Hallelujah Chorus’."
Historical colour lithograph of the Crystal Palace in London,
overlooking a vast park with picknicking groups.
There it is: An uplifting, well-orchestrated take on eugenically motivated genocide. Clifford Chatterley, it seems, got off easy. It may be because he was injured in the war, not burdened with a congenital impairment.

John Carey’s point is not that D.H. Lawrence was unique in holding murderously eugenicist views, it is rather that he was fairly representative of his time and milieu. A blog post is not a sufficient format for discussing that history in detail; here, I will merely draw some attention to the enthusiasm of his position, the softly bubbling music that accompanies the march toward the death chambers. And will point this out because of a recent spate of media stories with a similarly enthusiastic view of the deaths of people with impairments and serious illnesses.

Many of these stories have already been subject to some controversy, with disability activists and advocates of euthanasia or assisted suicide joining the debate. The two stories I will refer to here are readable in different ways, depending on one’s politics. My interest in them is chiefly centered on the intersection of aesthetics and morality – in how a certain kind of death is presented in the media as both beautiful and just, and therefore perhaps also necessary.

The first story can be read here: http://www.usatoday.com/story/news/nation-now/2016/09/22/following-last-dance-prom-wisconsin-teen-jerika-bolen-dies/90855656/

Jerika Bolen, a 14-year old girl “followed through on her decision to enter hospice and end an arduous, lifelong fight against Spinal Muscular Atrophy Type 2, an incurable and progressive disease that racked her body and brought continual pain”. It should be noted that SMA type 2, Bolen’s diagnosis, is generally consistent with a life expectancy well beyond late middle age.

In the article linked to, as in multiple other interviews and media texts, Bolen is presented as a rational agent making a rational choice – death over life – because of circumstances that, ultimately, cannot be changed. In the media optics, social and economic factors belong to these immutable circumstances. The “fight” cannot be won by living, only by dying. A celebratory tone ran through many of the news items that covered Bolen’s last few months. The stress was put on her “bravery” and on her autonomy.

Another story, perhaps even more striking because of the accompanying images, can be read here: http://www.chicagotribune.com/news/nationworld/ct-final-party-assisted-suicide-20160811-story.html

Betsy Davis, a “41-year-old artist with ALS, or Lou Gehrig's disease, held the gathering to say goodbye before becoming one of the first Californians to take a lethal dose of drugs under the state's new doctor-assisted suicide law for the terminally ill.” The images showing her saying her goodbyes, surrounded by friends and family, are in their way even more striking than the portraits of Jerika Bolen. Death not only represents a victory, but a cause for celebration.

This is how the case for assisted suicide is put in the age of individual rights: As a triumph of autonomy, a celebration of self-chosen death. There are myriad differences between Bolen and Davis, between their conditions, their decisions, ultimately, of course, between their lives. In the media, however, a number of distinctions and differences collapse. The story remains the same, however, and can be paraphrased as follows: In the struggle against disability and disease, death can be a victory.

Euthanasia and assisted suicide are not, currently, framed by their advocates as state responsibilities or as arenas for state agencies. There will be no lethal chambers as big as the Crystal Palace. Death is a private matter, subject to the autonomous decisions of private citizens. In a word, it has been privatized.

There are distinctly national and regional approaches to the matter of voluntary death, ranging from the libertarian assisted-suicide approaches of the Western United States to the more paternalistic, euthanasia-inflected approach of Belgium. Generally, however, arguments in favor of the facilitation of such death are contingent upon an atomistic conception of “voluntary” – divorced from political structures, economic conditions, and social attachments. Divorced, in short, from nearly everything that shapes the reality of living with impairment or illness. While the band is softly bubbling the Hallelujah chorus, benefits are being cut and safety nets removed all over the developed world. There is every reason for disability scholars, advocates, activists, and for disabled people, to be wary of the current media enthusiasm for euthanasia and assisted suicide.

Recommended Citation:
Jan Grue (2016): Euthanasia enthusiasm. In: Public Disability History 1 (2016) 22.

12/07/2016

Dreamscapes for Public Disability History: How (and Why, and Where, and With Whom) We Collaborate

by Penny Richards and Susan Burch

Historians and collaborators Penny Richards and Susan Burch decided to use this blog space for an extended virtual conversation on public disability history. They invite you to join in the discussion.

PR: So, when people ask you about disability history and ‘the public’, how do you answer?

Black and white photo of Junius Wilson 
on the day he moved into his cottage at Cherry Hospital.
Wearing his favorite Washington football team’s baseball cap,
the elderly black deaf man sits in a wheelchair at the entrance
to the house, looking slightly upward to the photographer 
while holding another baseball cap in his left hand.  

Photo courtesy of John Wasson.
SB: The word that comes to mind is ‘accountability.’ Learning about Junius Wilson’s story, and now many stories of families and Native peoples impacted by institutionalization (including Canton Asylum, a US federal psychiatric institution in South Dakota) clarifies that our work can have significant human impact. My academic training engaged ethical issues narrowly. I don’t recall ever having direct conversations about what it meant to interpret people’s lives: to consider that our historical subjects--however long ago they lived--may have kin or others potentially reading our work now. A conversation with Faith O’Neil (who granted permission to share this) stays with me. Faith’s grandmother, Elizabeth Alexis Fairbault (Sisseton Wahpeton Sioux Tribe) was incarcerated at the Canton Asylum. Faith’s own research uncovered a published Asylum history. It was wounding. Pathological, racist labels from archival sources were left unquestioned, reinforcing stigmatizing depictions of Faith’s ancestor. The book’s public/published presence intensified the hurt. It gives me pause to think about the sprawling distance between “insane patient” and “grandmother” (and Elizabeth Fairbault’s other names, the names that acknowledge her full humanity).

I’m not suggesting that scholars shouldn’t express their own interpretations or avoid tough subjects. To the contrary. But actively considering how our work may--or may not--contribute positively to the communities we study is necessary, too. In its best moments this approach actively engages with broader social justice work, and in so doing creates more thoughtful historical projects.

PR: Accountability is an important ethical standard for disability historians. Even with mostly nineteenth-century projects, I sometimes encounter relations who are interested in the people I describe, because they have a personal connection. Most of my projects involve subjects who wouldn’t have had direct descendants--they’re the spinster aunts and bachelor uncles that don’t always come with stories in the usual local history sources. But if they do have family-generated stories, that’s really exciting. If we can fill in some blanks for each other, that’s an exchange that exemplifies why responsible interaction with community and family histories is so worthwhile.

SB: This seems directly connected to the ‘place’ where your work often appears: open-access, online sites. How does accountability show up for you in this context?

PR: When I write disability history articles on Wikipedia, I think of being accountable to the public who might come looking for stories out of need or curiosity. If a parent is just learning their baby is blind, for example, they may seek biographies to give them a sense of what the future might hold (and not just the hero stories), or articles to help them comprehend the array of programs, organizations and laws they’re encountering. I imagine the student who wants to write a school paper that includes histories related to their own experience of chronic illness. They need accurate and clear language, and links to good and accessible sources for more information. They’re the public I imagine being accountable to, on Wikipedia.

SB: That resonates loudly with me. Generating disability history that’s accessible to a broad public has interlocking benefits: changing the dominant story of disability and disabled people; offering more inclusive models for historical work generally; and inviting more people to come into this work. Accessibility extends beyond how the content is crafted, which is partly why I’m drawn to your engagements with Wikipedia. Sharing the work in accessible formats reduces common barriers that seriously limit the current reach of disability history.

In a somewhat related way, I’m wondering what you think about collaboration in disability history: you’ve collaborated on many different kinds of collaboration (editing other people’s work, co-authoring, synthesizing current works by others, participating in blog-fests etc).

PR: Ah, well, like this very collaboration, I think for me the hardest part is opening up my work life --which is also my home life. Collaborating with me means writing days rained out by seizures, or school calendars, or marching band practice, and that’s stuff I don’t love imposing on other people. But, on the other hand, I likely wouldn’t be so interested in disability history if not for this particular home life, which is also my work life. I guess that’s one of the “hazards” of collaborating across the campus wall--life out here is a little messier and noisier!

An oval-framed photo from about 1903, 
in sepia tones, of an older woman, 
Marion Brown, white hair parted in the center,
 wearing a black cap and dress; the 
photographer's cardboard frame adds 
a red border and the words "Jenner & Co."
I like working with people who have first-hand knowledge or connection to the subject--because I often don’t bring that to the project (I don’t identify as disabled, and I know other privileges can keep me from noticing what I should). I like being able to ask, “What does it seem like she’s really saying here?” and getting an unexpected answer. This happened with the Marion Brown project. I shared it with a group of participants in an MS (multiple sclerosis) program, and they had so many cool insights I couldn’t have reached solely from my own experience. They were animated to find a familiar story in a historical setting--because how often do the words and feelings of people with chronic illness feature in historical narratives, especially ones meant for a general readership? Now that the project has a blog, I get comments from knitters and cheese experts too, all contributing to my understanding of Marion Brown’s life.

Wikipedia is all collaborative. Anyone can rewrite your work, but much of the collaboration happens outside the articles themselves, in WikiProjects that create worklists to focus attention on a specific topic. I’m happy when folks come through and add tags and fix formatting and ask questions. That kind of collaboration has been helpful to me, because I know a group of like-minded volunteers is watching, reading and refining what I write, as soon as I write it--not a year later, when it maybe finally turns up in a print journal, too late to be changed. In general, I like the immediacy of collaboration online (like the format we used to generate this conversation!).

SB: I especially like our collaborations because there’s a strong level of trust (and fun, and activist experience, and shared love of dance). It supports making mistakes as part of the process. How many drafts have we workshopped, re-routing research and writing paths because our conversations revealed some key point?...

The immediate understanding that our work impacts us as people matters, too. Bearing witness to deeply human experiences--tender, lusty, funny, baffling, brutal, and mundane--imprints how and who we are. But it’s rare that (‘academic’) historians breach this topic, at least in public spaces. It’s in quiet hotel corners, living rooms, porches, and Skype chats I’m asked how feel about studying stories often involving significant violence and trauma. Friendship and support accompany the questions. But so do other yearnings: to navigate compassionately these kinds of complicated pasts and also navigate compassionately our own lives in the present. I imagine this as part of a dreamscape of public disability history that’s fully ‘being’ public disability history. Tell me more about how you imagine this--

PR: Both welcoming in and reaching out are important. For the reaching way out, I think there’s a pervasive cultural idea that working with people who have cognitive disabilities is something different from working with any other group, with children or older folks or across language obstacles; but it’s not a “special case”. Pedagogy is pedagogy, collaboration is collaboration, we look for common ground, we find starting places, we ask for help when we’re stumped. If written language and specialized vocabulary aren’t the best mode of exchange, maybe we gather in material culture, museum professionals, even visual artists and sound designers, to make disability history accessible. And we’d best approach both welcoming and outreach aspects of public disability history as opportunities for mutual exchange--not as a one-way interaction.

I’ve been glad to see disability as a theme in the StoryCorps project, and disability history too, through the Disability Visibility Project. The project at Swansea about disability in a mining society did some extensive and creative outreach too.

Can we have disability history booths at resource fairs? At equipment expos? At playdates at accessible playgrounds? Not here and there, but as one of the usual things that disability historians do? That’s my dreamscape.

SB: [Nodding enthusiastically]. A dreamscape that holds space for wide sharing of information and local in-person interactions: yes! And inviting more people to recognize disabled people’s active presence in big and small lived histories. The challenges of resources, of inaccessible environments, of contexts that work against these kinds of public connections..to return to a self-reflective process (and perhaps public disability community reflective process) of considering ‘who’s not here’ and why…

PR: Well, we’re on a blog, so we should maybe use the possibilities of the format here to invite others into the conversation now. As historians, I guess we’re always up for stories from real life. In comments, readers, we’d love to know your ideas for a public disability history dreamscape, for your experiences of collaborations across the campus wall, and the mutual exchanges that were successful (or at least lesson-filled). What are the barriers you’ve encountered? What rewards made it worth the effort?

Recommended Citation:
Penny Richards & Susan Burch (2016): Dreamscapes for Public Disability History: How (and Why, and Where, and With Whom) We Collaborate. In: Public Disability History 1 (2016) 21.