What's Mine is Theirs?

“When you work hard, the results are yours.”  When I was young, that’s what my dad would often say to motivate me to study hard.  I wish things were that simple. 

I took a hiatus from blogging partly because I have been busy working on various articles for publication, and partly because I was applying to an academic program, and didn’t want to say things that can give them pause if the admissions committee members were to google me.  For academics, blogging about our own ideas and thoughts would not count for evaluation and promotion purposes.  Not even if they were well researched.  (But I would admit that I’m not blogging for an academic audience.)  Only peer-reviewed articles published in high-impact journals would count.  Self-published blog entries may get us in trouble for nothing when we express controversial ideas.  So many academics with very interesting ideas wouldn’t even blog, especially if they are pre-tenure.  

If my dad was correct, the result of my research work would be mine, whether in the blogosphere or in academic journals.  But copyright provisions in the publishing industry make clear that the results of my work are not necessarily mine.  I may own my ideas while they are still in my head or on my computer – and trust me, they are brilliant in my head!  But the journals own the copyright of the result of my ideas – i.e., the article – and they get to decide how that is distributed or shared.  For many people who don’t have access to an academic library or a good library collection (e.g., in poorer countries), they may have to purchase (or in some cases, rent) an article of interest, which can cost more than $1.20 per page.  Not from me.  From the publisher.  So, even if we work hard, the results aren’t ours.  If I want to share “my” article with the world by making it Open Access, some journals would charge $2000+ per article.  Some scholars, particularly those with grant money, may pay for that because that can get more people to read and cite their work, which is worth something in the academic world.  

A friend who advocates for technological and informational freedom took me to see Cory Doctorow recently and motivated me to blog again.  It’s no coincidence that these two gentlemen also share a love for Ubuntu, which is so much more than just an open source operating system.  Doctorow’s fascinating new book, Information Doesn’t Want to be Free, examines the state of copyright and creative success in the digital age.  True to his word, Doctorow told the audience – after the host announced all the usual prohibitions at most artists’ or writers’ appearances – that he would be fine if people wanted to take his pictures or even record his interview and put them on the web.  A lesson from his talk and his book is relevant here: if a publisher refuses to publish your work unless they can put a lock (e.g., copyright) on it, “you can be pretty sure that those locks aren’t there for your benefit.”

Sadly, unlockers have not been treated kindly.  Some may remember Aaron Swartz, who would have turned 28 on November 8^th if not for his suicide 22 months ago. Instrumental in the campaign to prevent passage of the American Stop Online Piracy Act (SOPA), Swartz was being charged with wire fraud and violations of the Computer Fraud and Abuse Act for systematically downloading academic journal articles from JSTOR, a digital repository.  These charges carried a cumulative maximum penalty of $1 million in fines, 35 years in prison, and more.  

Many academics are passionate about their work and treasure any opportunity to facilitate dialogues and progress in their respective fields.  They would likely have been happy to share their work publicly.   But depending on the copyright provision, they may not have been allowed to do so.  Doctorow’s book reminds me of how our current intertwining evaluation and publishing practices make it difficult for real exchange and promotion of knowledge.  

Efforts have begun to facilitate the adoption of Creative Commons in the academic world to expand the sharing of scholarly work, with some universities (MOOCs) also recognizing the value of making course materials open access.  Moreover, various accomplished scholars have taken a stand in raising awareness of certain for-profit journals. In the case of academic journals, when publications are no longer restricted to the print form, scholars can also be more creative in using other media to share their work.  And maybe at that point, I can tell my dad that not only are the results of the hard work mine – I can even decide how to present them!

Image Source: work hard;a photo taken by myself of the book signed by Doctorow; Swartz

Til Death Do You Have Dignity

Last week, I saw a preview of Whose Life Is It Anyway? (by Brian Clark) at the Cultch.  The powerful performance is about a witty sculptor, Ken, who became quadriplegic after a car accident.  Having lost his mobility and facing the prospect of living in an institution from there on, Ken believes that his form of existence is undignified.  He severs ties with loved ones and refuses various life-sustaining treatments that the hospital imposes on him.

Refusal of life-sustaining therapy is already legal in Canada. Justified by the ethical principle of respect for autonomy, patients who are capable of making healthcare decisions can refuse medical treatment, even if doing so would foreseeably lead to their death.  In recent years, debates about the so-called right to die focus on whether the autonomy argument also supports physician-assisted suicide and/or euthanasia.  

For this post, I will put aside the nuanced distinctions among various forms of assisted deaths.  My focus here is on people’s expressed desire to die allegedly because of their impairment.  Many argue that one’s desire to die is a private matter, such that control over one’s death is a natural extension of the right to privacy and an expression of one’s autonomy.  If people believe that their life with impairment is unbearable, even if they are not terminally ill, they should be allowed to end their intolerable suffering and have control over when and how they die.  

But discussions that focus on the person’s impairment often overlook the socio-political context within which people consider their life as not worth living. People with impairments, some of whom spend prolonged periods in institutionalized care due to lack of home support and other social resources, frequently lose control over their identity.  They are often desexualized, infantilized, and presumed to be globally incompetent by others.  While studies show that people with impairments often report a higher quality of life than that projected by people without impairments, our society continues to see a life with impairment as pitiful and tragic, and this attitude can further marginalize people with impairment and contribute to their despair.  Even though many are passionate in fighting efforts to legalize euthanasia or physician-assisted suicide as matters of civil liberties, few are as fervent in promoting suicide prevention by correcting the disabling social environment that causes or exacerbates people’s despair in the first place.  

Would Ken have wanted to live if he could return home with support instead of having to move to a care home? As I illustrate in a forthcoming book chapter, various court cases show that some people with impairments who seek assisted death would want to live if social support and opportunity-enhancing arrangements are available, even if their physical condition remains unchanged, suggesting that other factors can have significant impact on one’s quality of life and desire to live. 

The founder of Realwheels Theatre, which produces this play, maintains that the play isn’t about the value of a life with disability, but an individual’s right to choose.  But individuals never choose within a social vacuum.  Without examining the contexts of people’s desire to die and the social structure within which people form such desire, we cannot ascertain the autonomy of these decisions. 

Having lost a family member to suicide and other loved ones to terminal illnesses, I am keenly aware of the unbearable anguish that some go through, to the point that death appears to be the only feasible escape or comfort route.  My clinical ethics work has also given me a window to the agony suffered by many who struggle to hold on to hope.  I mourn for those who live or die in utter despair and loneliness, whatever the cause of such despondency, and yearn for better access to social and relational resources, mental health care, and end-of-life care.  In the context of impairments, we need to bear in mind that non-clinical concerns regarding the loss of social significance, communicative problems, living arrangements, quality of care, and loneliness often contribute to people’s suffering.  When an individual chooses death as the only viable way to escape an intolerable situation partly brought on by the social environment, it seems “perverse and unfair to say that this is an expression of self-determination or autonomy.”[i]

Perhaps Ken’s story is really about a right to live with dignity – to have one’s voice heard, to have one’s full humanity recognized regardless of one’s level of functioning, to be able to rely on others without feeling guilty, and to have control over one’s own identity and living environment.  Until we all live in a world that sees life with impairment and dependency as equally worthy and provides appropriate opportunities for people to flourish and retain hope, even legal access to euthanasia or physician-assisted suicide won’t guarantee dignity, in life or in death.  

Images: Euthanasia/Youth in Asia; Dis-Ability; Suicide Prevention/Assisted Suicide

 

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[i] Jerome Bickenbach, “Disability and Life-Ending Decisions,” in Physician Assisted Suicide: Expanding the Debate, eds. Margaret Battin, Rosamond Rhodes, and Anita Silvers (New York: Routledge, 1998), 123-132: 128.