Academic literature on the topic 'Citizens Free Library (Washington, Pa.)'

Abstract Background. The phase 3 PALLAS trial (NCT02513394) compared two years of the CDK4/6 inhibitor palbociclib with endocrine therapy of provider choice, versus endocrine therapy alone, as adjuvant treatment for patients with Stage II-III hormone receptor-positive HER2-negative (HR+/HER2-) breast cancer. Genomic subtype (PAM50 intrinsic subtype) measured from whole-transcriptome RNA sequencing data was defined in the protocol of the PALLAS trial as the primary biomarker for analysis of prediction and prognosis. Clinical data have been previously presented (Gnant et al, JCO 2022), and the trial now has 5-year median follow-up. Methods. As part of trial eligibility, all participants in PALLAS provided a tumor tissue block prior to randomization (surgical if primary resection, core biopsy if neoadjuvant treatment) for translational analyses (TRANS-PALLAS). The biorepository and laboratory were blinded to identity and processed samples in random order, to minimize bias. Nucleic acids were extracted from samples with sufficient tumor tissue and cellularity (>25 mm2 with ≥20% cancer nuclei). The Genome Sequencing Center at Washington University St. Louis performed whole-transcriptome RNA sequencing. Libraries were prepared from 1 µg DNase-1 treated total RNA, if total RNA DV200 >28 (Agilent Bioanalyzer), using an unbiased library protocol of RNA HyperPrep kit with RiboErase (HMR) (Kapa Biosystems, Wilmington, MA). 100 bp paired-end sequencing was performed on NovaSeq 6000 using S4 Reagent Kit (Illumina, San Diego, CA), with 48 libraries pooled per lane. Intrinsic subtype was determined using Bioclassifier package (Research PAM50 script, Parker et al.) only for the analysis population of primary breast cancer samples that had not been exposed to prior neoadjuvant therapy. Invasive disease-free survival (IDFS) will be visualized using Kaplan-Meier plots, with log-rank test between groups. Cox models of proportional hazards will be developed to evaluate prognosis adjusted for known clinical covariates, or for predictive interactions. The pre-defined level of significance is a two-sided 0.05. Results. From the total study population of 5796 enrolled patients, 4655 tissue blocks had sufficient tumor content to process for RNA, with 3931 yielding sufficient RNA for sequencing, and 2669/4655 (57.3%) submitted tissue blocks had DV200 ≥28 and were successfully sequenced. Clinical unblinding revealed 2370 unique patients (1182 in the palbociclib treatment arm and 1188 in the control arm) with intrinsic subtype defined from their untreated primary tumor: 1555 (65.6%) luminal A, 287 (12.1%) luminal B, 167 (7.0%) HER2-enriched, 310 (13.1%) basal-like, 51 (2.2%) normal-like. We will report the results for association of molecular subtype, proliferation score, and Risk of Recurrence (ROR) scores with invasive disease-free survival (IDFS) by treatment arm at the meeting. Conclusions. The TRANS-PALLAS cohort represents one of the largest biorepositories of HR+/HER2- early breast cancer reflecting contemporary systemic management in the framework of a prospectively randomized global trial. Required tumor block submission in this phase 3 trial yielded data from unbiased whole-transcriptome RNA sequencing of the primary tumor prior to treatment from 41% of the PALLAS participants. The proportion of luminal A cancers was unexpectedly high (66%), indicating a lower-risk distribution of cancers in this population. The planned analyses of prediction and prognosis are ongoing and those results will be presented at the time of the meeting. Support: AFT, ABCSG, Pfizer, ECOG-ACRIN, NSABP Foundation, GBG, BIG; Clinicaltrials.gov Identifier: NCT02513394; https://acknowledgments.alliancefound.org Citation Format: Daniel Stover, Dominik Hlauschek, Erica Mayer, W. Fraser Symmans, Mark Watson, Iros Barozzi, Martin Filipits, Karla Ballman, Meritxell Bellet- Ezquerra, Justin Balko, Gabor Rubovszky, Nicholas Zdenkowski, Adam Brufsky, Guenther Steger, Claudine Isaacs, Sibylle Loibl, Fernando Henao, Meredith Regan, Yuan Liu, Christian Fesl, Patrick O'Brien, Angela DeMichele, Michael Gnant, Otto Metzger. Protocol-defined biomarker analysis in the PALLAS (AFT-05) adjuvant trial: Genomic subtype derived from RNA sequencing of HR+/HER2- early breast cancer [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr GS03-07.

Image 1: A Little Free Library. Image credit: Nadine Kozak.IntroductionLittle Free Libraries give people a reason to stop and exchange things they love: books. It seemed like a really good way to build a sense of community.Dannette Lank, Little Free Library steward, Whitefish Bay, Wisconsin, 2013 (Rumage)Against a backdrop of stagnant literacy rates and enduring perceptions of urban decay and the decline of communities in cities (NCES, “Average Literacy”; NCES, “Average Prose”; Putnam 25; Skogan 8), legions of Little Free Libraries (LFLs) have sprung up across the United States between 2009 and the present. LFLs are small, often homemade structures housing books and other physical media for passersby to choose a book to take or leave a book to share with others. People have installed the structures in front of homes, schools, libraries, churches, fire and police stations, community gardens, and in public parks. There are currently 50,000 LFLs around the world, most of which are in the continental United States (Aldrich, “Big”). LFLs encompass building in multiple senses of the term; LFLs are literally tiny buildings to house books and people use the structures for building neighbourhood social capital. The organisation behind the movement cites “building community” as one of its three core missions (Little Free Library). Rowan Moore, theorising humans’ reasons for building, argues desire and emotion are central (16). The LFL movement provides evidence for this claim: stewards erect LFLs based on hope for increased literacy and a desire to build community through their altruistic actions. This article investigates how LFLs build urban community and explores barriers to the endeavour, specifically municipal building and right of way ordinances used in attempts to eradicate the structures. It also examines local responses to these municipal actions and potential challenges to traditional public libraries brought about by LFLs, primarily the decrease of visits to public libraries and the use of LFLs to argue for defunding of publicly provided library services. The work argues that LFLs build community in some places but may threaten other community services. This article employs qualitative content analysis of 261 stewards’ comments about their registered LFLs on the organisation’s website drawn from the two largest cities in a Midwestern state and an interview with an LFL steward in a village in the same state to analyse how LFLs build community. The two cities, located in the state where the LFL movement began, provide a cross section of innovators, early adopters, and late adopters of the book exchanges, determined by their registered charter numbers. Press coverage and municipal documents from six cities across the US gathered through a snowball sample provide data about municipal challenges to LFLs. Blog posts penned by practising librarians furnish some opinions about the movement. This research, while not a representative sample, identifies common themes and issues around LFLs and provides a basis for future research.The act of building and curating an LFL is a representation of shared beliefs about literacy, community, and altruism. Establishing an LFL is an act of civic participation. As Nico Carpentier notes, while some civic participation is macro, carried out at the level of the nation, other participation is micro, conducted in “the spheres of school, family, workplace, church, and community” (17). Ruth H. Landman investigates voluntary activities in the city, including community gardening, and community bakeries, and argues that the people associated with these projects find themselves in a “denser web of relations” than previously (2). Gretchen M. Herrmann argues that neighbourhood garage sales, although fleeting events, build an enduring sense of community amongst participants (189). Ray Oldenburg contends that people create associational webs in what he calls “great good places”; third spaces separate from home and work (20-21). Little Free Libraries and Community BuildingEmotion plays a central role in the decision to become an LFL steward, the person who establishes and maintains the LFL. People recount their desire to build a sense of community and share their love of reading with neighbours (Charter 4684; Charter 8212; Charter 9437; Charter 9705; Charter 16561). One steward in the study reported, “I love books and I want to be able to help foster that love in our neighbourhood as well” (Charter 4369). Image 2: A Little Free Library, bench, water fountain, and dog’s water bowl for passersby to enjoy. Image credit: Nadine Kozak.Relationships and emotional ties are central to some people’s decisions to have an LFL. The LFL website catalogues many instances of memorial LFLs, tributes to librarians, teachers, and avid readers. Indeed, the first Little Free Library, built by Todd Bol in 2009, was a tribute to his late mother, a teacher who loved reading (“Our History”). In the two city study area, ten LFLs are memorials, allowing bereaved families to pass on a loved one’s penchant for sharing books and reading (Charter 1235; Charter 1309; Charter 4604; Charter 6219; Charter 6542; Charter 6954; Charter 10326; Charter 16734; Charter 24481; Charter 30369). In some cases, urban neighbours come together to build, erect, and stock LFLs. One steward wrote: “Those of us who live in this friendly neighborhood collaborated to design[,] build and paint a bungalow themed library” to match the houses in the neighbourhood (Charter 2532). Another noted: “Our neighbor across the street is a skilled woodworker, and offered to build the library for us if we would install it in our yard and maintain it. What a deal!” (Charter 18677). Community organisations also install and maintain LFLs, including 21 in the study population (e.g. Charter 31822; Charter 27155).Stewards report increased communication with neighbours due to their LFLs. A steward noted: “We celebrated the library’s launch on a Saturday morning with neighbors of all ages. We love sitting on our front porch and catching up with the people who stop to check out the books” (Charter 9673). Another exclaimed:within 24 hours, before I had time to paint it, my Little Free Library took on a life of its own. All of a sudden there were lots of books in it and people stopping by. I wondered where these books came from as I had not put any in there. Little kids in the neighborhood are all excited about it and I have met neighbors that I had never seen before. This is going to be fun! (Charter 15981)LFLs build community through social interaction and collaboration. This occurs when neighbours come together to build, install, and fill the structures. The structures also open avenues for conversation between neighbours who had no connection previously. Like Herrmann’s neighbourhood garage sales, LFLs create and maintain social ties between neighbours and link them by the books they share. Additionally, when neighbours gather and communicate at the LFL structure, they create a transitory third space for “informal public life”, where people can casually interact at a nearby location (Oldenburg 14, 288).Building Barriers, Creating CommunityThe erection of an LFL in an urban neighbourhood is not, however, always a welcome sight. The news analysis found that LFLs most often come to the attention of municipal authorities via citizen complaints, which lead to investigations and enforcement of ordinances. In Kansas, a neighbour called an LFL an “eyesore” and an “illegal detached structure” (Tapper). In Wisconsin, well-meaning future stewards contacted their village authorities to ask about rules, inadvertently setting off a six-month ban on LFLs (Stingl; Rumage). Resulting from complaints and inquiries, municipalities regulated, and in one case banned, LFLs, thus building barriers to citizens’ desires to foster community and share books with neighbours.Municipal governments use two major areas of established code to remove or prohibit LFLs: ordinances banning unapproved structures in residents’ yards and those concerned with obstructions to right of ways when stewards locate the LFLs between the public sidewalk and street.In the first instance, municipal ordinances prohibit either front yard or detached structures. Controversies over these ordinances and LFLs erupted in Whitefish Bay, Wisconsin, in 2012; Leawood, Kansas, in 2014; Shreveport, Louisiana, in 2015; and Dallas, Texas, in 2015. The Village of Whitefish Bay banned LFLs due to an ordinance prohibiting “front yard structures,” including mailboxes (Sanburn; Stingl). In Leawood, the city council argued that an LFL, owned by a nine-year-old boy, violated an ordinance that forbade the construction of any detached structures without city council permission. In Shreveport, the stewards of an LFL received a cease and desist letter from city council for having an “accessory structure” in the front yard (LaCasse; Burris) and Dallas officials knocked on a steward’s front door, informing her of a similar breach (Kellogg).In the second instance, some urban municipalities argued that LFLs are obstructions that block right of ways. In Lincoln, Nebraska, the public works director noted that the city “uses the area between the sidewalk and the street for snow storage in the winter, light poles, mailboxes, things like that.” The director continued: “And I imagine these little libraries are meant to congregate people like a water cooler, but we don’t want people hanging around near the road by the curb” (Heady). Both Lincoln in 2014 and Los Angeles (LA), California, in 2015, cited LFLs for obstructions. In Lincoln, the city notified the Southminster United Methodist Church that their LFL, located between the public sidewalk and street, violated a municipal ordinance (Sanburn). In LA, the Bureau of Street Services notified actor Peter Cook that his LFL, situated in the right of way, was an “obstruction” that Cook had to remove or the city would levy a fine (Moss). The city agreed at a hearing to consider a “revocable permit” for Cook’s LFL, but later denied its issuance (Condes).Stewards who found themselves in violation of municipal ordinances were able to harness emotion and build outrage over limits to individuals’ ability to erect LFLs. In Kansas, the stewards created a Facebook page, Spencer’s Little Free Library, which received over 31,000 likes and messages of support. One comment left on the page reads: “The public outcry will force those lame city officials to change their minds about it. Leave it to the stupid government to rain on everybody’s parade” (“Good”). Children’s author Daniel Handler sent a letter to the nine-year-old steward, writing as Lemony Snicket, “fighting against librarians is immoral and useless in the face of brave and noble readers such as yourself” (Spencer’s). Indeed, the young steward gave a successful speech to city hall arguing that the body should allow the structures because “‘lots of people in the neighborhood used the library and the books were always changing. I think it’s good for Leawood’” (Bauman). Other local LFL supporters also attended council and spoke in favour of the structures (Harper). In LA, Cook’s neighbours started a petition that gathered over 100 signatures, where people left comments including, “No to bullies!” (Lopez). Additionally, neighbours gathered to discuss the issue (Dana). In Shreveport, neighbours left stacks of books in their front yards, without a structure housing them due to the code banning accessory structures. One noted, “I’m basically telling the [Metropolitan Planning Commission] to go sod off” (Friedersdorf; Moss). LFL proponents reacted with frustration and anger at the perceived over-reach of the government toward harmless LFLs. In addition to the actions of neighbours and supporters, the national and local press commented on the municipal constraints. The LFL movement has benefitted from a significant amount of positive press in its formative years, a press willing to publicise and criticise municipal actions to thwart LFL development. Stewards’ struggles against municipal bureaucracies building barriers to LFLs makes prime fodder for the news media. Herbert J. Gans argues an enduring value in American news is “the preservation of the freedom of the individual against the encroachments of nation and society” (50). The juxtaposition of well-meaning LFL stewards against municipal councils and committees provided a compelling opportunity to illustrate this value.National media outlets, including Time (Sanburn), Christian Science Monitor (LaCasse), and The Atlantic, drew attention to the issue. Writing in The Atlantic, Conor Friedersdorf critically noted:I wish I was writing this to merely extol this trend [of community building via LFLs]. Alas, a subset of Americans are determined to regulate every last aspect of community life. Due to selection bias, they are overrepresented among local politicians and bureaucrats. And so they have power, despite their small-mindedness, inflexibility, and lack of common sense so extreme that they’ve taken to cracking down on Little Free Libraries, of all things. (Friedersdorf, n.p.)Other columnists mirrored this sentiment. Writing in the LA Times, one commentator sarcastically wrote that city officials were “cracking down on one of the country’s biggest problems: small community libraries where residents share books” (Schaub). Journalists argued this was government overreach on non-issues rather than tackling larger community problems, such as income inequality, homelessness, and aging infrastructure (Solomon; Schaub). The protests and negative press coverage led to, in the case of the municipalities with front yard and detached structure ordinances, détente between stewards and councils as the latter passed amendments permitting and regulating LFLs. Whitefish Bay, Leawood, and Shreveport amended ordinances to allow for LFLs, but also to regulate them (Everson; Topil; Siegel). Ordinances about LFLs restricted their number on city blocks, placement on private property, size and height, as well as required registration with the municipality in some cases. Lincoln officials allowed the church to relocate the LFL from the right of way to church property and waived the $500 fine for the obstruction violation (Sanburn). In addition to the amendments, the protests also led to civic participation and community building including presentations to city council, a petition, and symbolic acts of defiance. Through this protest, neighbours create communities—networks of people working toward a common goal. This aspect of community building around LFLs was unintentional but it brought people together nevertheless.Building a Challenge to Traditional Libraries?LFL marketing and communication staff member Margaret Aldrich suggests in The Little Free Library Book that LFLs are successful because they are “gratifyingly doable” projects that can be accomplished by an individual (16). It is this ease of building, erecting, and maintaining LFLs that builds concern as their proliferation could challenge aspects of library service, such as public funding and patron visits. Some professional librarians are in favour of the LFLs and are stewards themselves (Charter 121; Charter 2608; Charter 9702; Charter 41074; Rumage). Others envision great opportunities for collaboration between traditional libraries and LFLs, including the library publicising LFLs and encouraging their construction as well as using LFLs to serve areas without, or far from, a public library (Svehla; Shumaker). While lauding efforts to build community, some professional librarians question the nomenclature used by the movement. They argue the phrase Little Free Libraries is inaccurate as libraries are much more than random collections of books. Instead, critics contend, the LFL structures are closer to book swaps and exchanges than actual libraries, which offer a range of services such as Internet access, digital materials, community meeting spaces, and workshops and programming on a variety of topics (American Library Association; Annoyed Librarian). One university reference and instruction librarian worries about “the general public’s perception and lumping together of little free libraries and actual ‘real’ public libraries” (Hardenbrook). By way of illustration, he imagines someone asking, “‘why do we need our tax money to go to something that can be done for FREE?’” (Hardenbrook). Librarians holding this perspective fear the movement might add to a trend of neoliberalism, limiting or ending public funding for libraries, as politicians believe that the localised, individual solutions can replace publicly funded library services. This is a trend toward what James Ferguson calls “responsibilized” citizens, those “deployed to produce governmentalized results that do not depend on direct state intervention” (172). In other countries, this shift has already begun. In the United Kingdom (UK), governments are devolving formerly public services onto community groups and volunteers. Lindsay Findlay-King, Geoff Nichols, Deborah Forbes, and Gordon Macfadyen trace the impacts of the 2012 Localism Act in the UK, which caused “sport and library asset transfers” (12) to community and volunteer groups who were then responsible for service provision and, potentially, facility maintenance as well. Rather than being in charge of a “doable” LFL, community groups and volunteers become the operators of much larger facilities. Recent efforts in the US to privatise library services as governments attempt to cut budgets and streamline services (Streitfeld) ground this fear. Image 3: “Take a Book, Share a Book,” a Little Free Library motto. Image credit: Nadine Kozak. LFLs might have real consequences for public libraries. Another potential unintended consequence of the LFLs is decreasing visits to public libraries, which could provide officials seeking to defund them with evidence that they are no longer relevant or necessary. One LFL steward and avid reader remarked that she had not used her local public library since 2014 because “I was using the Little Free Libraries” (Steward). Academics and librarians must conduct more research to determine what impact, if any, LFLs are having on visits to traditional public libraries. ConclusionLittle Free Libraries across the United States, and increasingly in other countries, have generated discussion, promoted collaboration between neighbours, and led to sharing. In other words, they have built communities. This was the intended consequence of the LFL movement. There, however, has also been unplanned community building in response to municipal threats to the structures due to right of way, safety, and planning ordinances. The more threatening concern is not the municipal ordinances used to block LFL development, but rather the trend of privatisation of publicly provided services. While people are celebrating the community built by the LFLs, caution must be exercised lest central institutions of the public and community, traditional public libraries, be lost. Academics and communities ought to consider not just impact on their local community at the street level, but also wider structural concerns so that communities can foster many “great good places”—the Little Free Libraries and traditional public libraries as well.ReferencesAldrich, Margaret. “Big Milestone for Little Free Library: 50,000 Libraries Worldwide.” Little Free Library. Little Free Library Organization. 4 Nov. 2016. 25 Feb. 2017 <https://littlefreelibrary.org/big-milestone-for-little-free-library-50000-libraries-worldwide/>.Aldrich, Margaret. The Little Free Library Book: Take a Book, Return a Book. Minneapolis, MN: Coffee House Press, 2015.Annoyed Librarian. “How to Protect Little Free Libraries.” Library Journal Blog 9 Jul. 2015. 26 Mar. 2017 <http://lj.libraryjournal.com/blogs/annoyedlibrarian/2015/07/09/how-to-protect-little-free-libraries/>.American Library Association. “Public Library Use.” State of America’s Libraries: A Report from the American Library Association (2015). 25 Feb. 2017 <http://www.ala.org/tools/libfactsheets/alalibraryfactsheet06>.Bauman, Caroline. “‘Little Free Libraries’ Legal in Leawood Thanks to 9-year-old Spencer Collins.” The Kansas City Star 7 Jul. 2014. 25 Feb. 2017 <http://www.kansascity.com/news/politics-government/article687562.html>.Burris, Alexandria. “First Amendment Issues Surface in Little Free Library Case.” Shreveport Times 5 Feb. 2015. 25 Feb. 2017 <http://www.shreveporttimes.com/story/news/local/2015/02/05/expert-use-zoning-law-clashes-first-amendment/22922371/>.Carpentier, Nico. Media and Participation: A Site of Ideological-Democratic Struggle. Bristol: Intellect, 2011.Charter 121. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 1235. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 1309. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 2532. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 2608. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 4369. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 4604. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 4684. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 6219. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 6542. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 6954. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 8212. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 9437. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 9673. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 9702. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 9705. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 10326. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 15981. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 16561. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 16734. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 18677. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 24481. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 27155. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 30369. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 31822. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Charter 41074. “The World Map.” Little Free Library (2017). 26 Mar. 2017 <https://littlefreelibrary.org/ourmap/>.Condes, Yvonne. “Save the Little Library!” MomsLA 10 Aug. 2015. 25 Feb. 2017 <http://momsla.com/save-the-micro-library/>.Dana. “The Tenn-Mann Library Controversy, Part 3.” Read with Dana (30 Jan. 2015). 25 Feb. 2017 <https://readwithdana.wordpress.com/2015/01/30/the-tenn-mann-library-controversy-part-three/>.Everson, Jeff. “An Ordinance to Amend and Reenact Chapter 106 of the Shreveport Code of Ordinances Relative to Outdoor Book Exchange Boxes, and Otherwise Providing with Respect Thereto.” City of Shreveport, Louisiana 9 Oct. 2015. 25 Feb. 2017 <http://ftpcontent4.worldnow.com/ksla/pdf/LFLordinance.pdf>.Ferguson, James. “The Uses of Neoliberalism.” Antipode 41.S1 (2009): 166-84.Findlay-King, Lindsay, Geoff Nichols, Deborah Forbes, and Gordon Macfadyen. “Localism and the Big Society: The Asset Transfer of Leisure Centres and Libraries—Fighting Closures or Empowering Communities.” Leisure Studies (2017): 1-13.Friedersdorf, Conor. “The Danger of Being Neighborly without a Permit.” The Atlantic 20 Feb. 2015. 25 Feb. 2017 <https://www.theatlantic.com/national/archive/2015/02/little-free-library-crackdown/385531/>.Gans, Herbert J. Deciding What’s News: A Study of CBS Evening News, NBC Nightly News, Newsweek, and Time. Evanston, IL: Northwestern University Press, 2004.“Good Luck Spencer.” Spencer’s Little Free Library Facebook Page 25 Jun. 2014. 26 Mar. 2017 <https://www.facebook.com/Spencerslittlefreelibrary/photos/pcb.527531327376433/527531260709773/?type=3>.Hardenbrook, Joe. “A Little Rant on Little Free Libraries (AKA Probably an Unpopular Post).” Mr. Library Dude (9 Apr. 2014). 25 Feb. 2017 <https://mrlibrarydude.wordpress.com/2014/04/09/a-little-rant-on-little-free-libraries-aka-probably-an-unpopular-post/>.Harper, Deb. “Minutes.” The Leawood City Council 7 Jul. 2014. <http://www.leawood.org/pdf/cc/min/07-07-14.pdf>. Heady, Chris. “City Wants Church to Move Little Library.” Lincoln Journal Star 9 Jul. 2014. 25 Feb. 2017 <http://journalstar.com/news/local/city-wants-church-to-move-little-library/article_7753901a-42cd-5b52-9674-fc54a4d51f47.html>. Herrmann, Gretchen M. “Garage Sales Make Good Neighbors: Building Community through Neighborhood Sales.” Human Organization 62.2 (2006): 181-191.Kellogg, Carolyn. “Officials Threaten to Destroy a Little Free Library in Texas.” Los Angeles Times (1 Oct. 2015). 25 Feb. 2017 <http://www.latimes.com/books/jacketcopy/la-et-jc-little-free-library-texas-20150930-story.html>.LaCasse, Alexander. “Why Are Some Cities Cracking Down on Little Free Libraries.” Christian Science Monitor (5 Feb. 2015). 25 Feb. 2017 <http://www.csmonitor.com/Books/chapter-and-verse/2015/0205/Why-are-some-cities-cracking-down-on-little-free-libraries>.Landman, Ruth H. Creating the Community in the City: Cooperatives and Community Gardens in Washington, DC Westport, CT: Bergin & Garvey, 1993. Little Free Library. Little Free Library Organization (2017). 25 Feb. 2017 <https://littlefreelibrary.org/>.Lopez, Steve. “Actor’s Curbside Libraries Is a Smash—for Most People.” LA Times 3 Feb. 2015. 25 Feb. 2017 <http://www.latimes.com/local/california/la-me-0204-lopez-library-20150204-column.html>.Moore, Rowan. Why We Build: Power and Desire in Architecture. New York: Harper Design, 2013.Moss, Laura. “City Zoning Laws Target Little Free Libraries.” Mother Nature Network 25 Aug. 2015. 25 Feb. 2017 <http://www.mnn.com/lifestyle/arts-culture/stories/city-zoning-laws-target-little-free-libraries>.National Center for Education Statistics (NCES). Average Literacy and Numeracy Scale Scores of 25- to 65-Year Olds, by Sex, Age Group, Highest Level of Educational Attainment, and Country of Other Education System: 2012, table 604.10. 25 Feb. 2017 <https://nces.ed.gov/programs/digest/d15/tables/dt15_604.10.asp?current=yes>.National Center for Education Statistics (NCES). Average Prose, Document, and Quantitative Literacy Scores of Adults: 1992 and 2003. National Assessment of Adult Literacy. 25 Feb. 2017 <https://nces.ed.gov/naal/kf_demographics.asp>.Oldenburg, Ray. The Great Good Place: Cafés, Coffee Shops, Bookstores, Bars, Hair Salons, and Other Hangouts at the Heart of a Community. New York: Marlowe & Company, 1999.“Our History.” Little Free Library. Little Free Library Organization (2017). 25 Feb. 2017 <https://littlefreelibrary.org/ourhistory/>.Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. New York: Simon & Schuster, 2001.Rumage, Jeff. “Little Free Libraries Now Allowed in Whitefish Bay.” Whitefish Bay Patch (8 May 2013). 25 Feb. 2017 <http://patch.com/wisconsin/whitefishbay/little-free-libraries-now-allowed-in-whitefish-bay>.Sanburn, Josh. “What Do Kansas and Nebraska Have against Small Libraries?” Time 10 Jul. 2014. 25 Feb. 2017 <http://time.com/2970649/tiny-libraries-violating-city-ordinances/>.Schaub, Michael. “Little Free Libraries on the Wrong Side of the Law.” LA Times 4 Feb. 2015. 25 Feb. 2017 <http://www.latimes.com/books/jacketcopy/la-et-jc-little-free-libraries-on-the-wrong-side-of-the-law-20150204-story.html>.Shumaker, David. “Public Libraries, Little Free Libraries, and Embedded Librarians.” The Embedded Librarian (28 April 2014) 26 Mar. 2017 <https://embeddedlibrarian.com/2014/04/28/public-libraries-little-free-libraries-and-embedded-librarians/>.Siegel, Julie. “An Ordinance to Amend Section 16.13 of the Municipal Code with Regard to Exempt Certain Little Free Libraries from Front Yard Setback Requirements.” Village of Whitefish Bay, Wisconsin (5 Aug. 2013).Skogan, Wesley G. Police and Community in Chicago: A Tale of Three Cities. New York: Oxford University Press, 2006.Solomon, Dan. “Dallas Is Regulating ‘Little Free Libraries’ for Some Reason.” Texas Monthly (14 Sept. 2016). 25 Feb. 2017 <http://www.texasmonthly.com/the-daily-post/dallas-regulating-little-free-libraries-reason/>.“Spencer’s Little Free Library.” Facebook 15 Jul. 2014. 25 Feb. 2017 <https://www.facebook.com/Spencerslittlefreelibrary/photos/pcb.527531327376433/527531260709773/?type=3>.Steward, M. Personal Interview. 7 Feb. 2017.Stingl, Jim. “Village Slaps Endnote on Little Libraries.” Milwaukee Journal Sentinel 11 Nov. 2012: 1B, 7B.Streitfeld, David. “Anger as a Private Company Takes over Libraries.” The New York Times (26 Sept. 2010). 25 Feb. 2017 <http://www.nytimes.com/2010/09/27/business/27libraries.html>.Svehla, Louise. “Little Free Libraries—The Possibilities Are Endless.” Public Libraries Online (8 Mar. 2013). 25 Feb. 2017 <http://publiclibrariesonline.org/2013/03/little-free-libraries-the-possibilities-are-endless/>.Tapper, Jake. “Boy Fights Council to Save His Library.” CNN 4 Jul. 2014. 25 Feb. 2017 <http://thelead.blogs.cnn.com/2014/07/04/boy-fights-to-save-his-library/>.Topil, Greg. “Little Free Libraries in Lincoln.” City of Lincoln, Nebraska (n.d.). 25 Feb. 2017 <http://lincoln.ne.gov/City/pworks/engine/row/little-library.htm>.

Since the mid-eighties, personality and mood have undergone vigorous surveillance and repair across new populations in the United States. While government and the psy-complexes 1 have always had a stake in promoting citizen health, it is unique that, today, State, industry, and non-governmental organisations recruit consumers to act upon their own mental health. And while citizen behaviours in public spaces have long been fodder for diagnosis, the scope of behaviours and the breadth of the surveyed population has expanded significantly over the past twenty years. How has the notion of behavioural illness been successfully spun to recruit new populations to behavioural diagnosis and repair? Why is it a reasonable proposition that our personalities might be sick, our moods ill? This essay investigates the cultural promotion of a 'script' that assumes sick moods are possible, encourages the self-assessment of risk and self-management of dysfunctional mood, and has thus helped to create a new, adjustable subject. Michel Foucault (1976, 1988) contended that in order for subjects to act upon their selves -- for example, assess themselves via the behavioural health script -- we must view the Self as a construction, a work in progress that is alterable and in need of alteration in order for psychiatric action to seem appropriate. This conception of the self constitutes an extreme theoretical shift from the early modern belief (of Rousseau or Kant) that a core soul inhabited and shaped being, or the moral self.2 Foucault (1976) insisted that subjects are 'not born but made' through formal and informal social discourses that construct knowledge of the 'normal' self. Throughout the 19th century and the modern era, as medical, juridical, and psychiatric institutions gained increasing cultural capital, the normal self became allegedly 'knowable' through science. In turn, the citizen became 'professionalised' (Funicello 1993) -- answerable to these constructed standards, or subject to what Foucault termed biopower. In order to avoid punishments wrested upon the 'deviant' such as being placed in asylum or criminalised, citizens capitulated to social norms, and thus helped the State to achieve social order. 3 While 'technologies of power' or domination determined the conduct of individuals in the premodern era, 'technologies of the self' became prominent in the modern era.4 (Foucault, 'Technologies of the Self') These, explained Foucault, permit individuals to act upon their 'bodies, souls, thoughts, conduct and ways of being' to transform them, to attain happiness, or perfection, among other things (18). Contemporary psychiatric discourses, for example, call upon citizens to transform via self-regulation, and thus lessened the State's disciplinary burden. Since the mid-twentieth century, biopsychiatry has been embraced nationally, and played a key role in propagating self-disciplining citizens. Biopsychiatric logic is viewed culturally as common sense due to a number of occurrences. The dominant media have enthusiastically celebrated so-called biotechnical successes, such as sheep cloning and the development of better drugs to treat Schizophrenia. Hype has also surrounded newer drugs to treat depression (i.e. Prozac) and anxiety (i.e. Paxil), as well as the 'cosmetic' use of antidepressants to allegedly improve personality.5 Citizens, then, are enlisted to trust in psychiatric science to repair mood dysfunction, but also to reveal the 'true' self, occluded by biologically impaired mood. Suggesting that biopsychiatry's 'knowledge' of the human brain has revealed the human condition and can repair sick selves, these discourses have helped to launch the behavioural health script into the national psyche. The successful marketing of the script was also achieved by the diagnostic philosophy encouraged by revisions of Diagnostic and Statistical Manual or Mental Disorders(the DSM; these renovations increased the number of affective (mood) and personality diagnoses and broadened diagnostic criteria. The new DSMs 6 institutionalised the pathologisation of common personality and mood distresses as biological or genetic disorders. The texts constitute 'knowledge' of normal personality and behaviour, and press consumers toward biotechnical tools to repair the defunct self. Ian Hacking (1995) suggests that new moral concepts emerge when old ones acquire new connotations, thereby affecting our sense of who we are. The once moral self, known through introspection, is thus transformed via biopsychiatry into a self that is constructed in accordance with scientific 'knowledge'. The State and various private industries have a stake in promoting this Sick Self script. Promoting Diagnosis of the Sick Self Employing the DSM's broad criteria, research by the National Institute of Mental Health (NIMH), contends that a significant percentage of the population is behaviourally ill. The most recent Surgeon General report on Mental Health (from 1999) which also employed broad criteria, argues that a striking 50 million Americans are afflicted with a mental illness each year, most of which were non-major disorders affecting behaviour, personality and mood.7 Additionally, studies suggest that behavioural illness results in lost work days and increases demand for health services, thus constituting a severe financial burden to the State. Such studies consequently provide the State with ample reason to promote behavioural illness. In predicting an epidemic in behavioural illness and a huge increase in mental health service needs, the State has constructed health policy in accordance with the behavioural sickness script. Health policy embraces DSM diagnostic tools that sweep in a wide population by diagnosing risk as illness and links diagnosis with biotechnical recovery methods. Because criteria for these disorders have expanded and diagnoses have become more vague, however, over-diagnosis of the population has become common . 8 Depression, for example, is broadly defined to include moods ranging from the blues to suicidal ideation. Yet, the Sick Self script is ubiquitously embraced by NGO, industry, and State discourses, calling for consumer self-scrutiny and strongly promoting psychopharmaceuticals. These activities has been most successful; to wit: personality disorders were among the most common diagnoses of the 80's, and depression, which was a rare disorder thirty-five years ago, became the most common mental illness in the late 90's (Healy). Consumer Health Groups & Industry Promotions Health institutions and drug industries promote mood illness and market drug remedies as a means of profit maximisation. Broad spectrum diagnoses are, by definition, easy to sell to a wide population and create a vast market for recovery products. Pharmaceutical and insurance companies (each multibillion dollar industries), an expanding variety of self-help industries, consumer health web sites, and an array of psy-complex workers all have a stake in promoting the broad diagnosis of mood and behavioural disorders. 9 In so doing, consumer groups and the health and pharmaceutical industries not only encourage self-discipline (aligning themselves with State productivity goals), but create a vast, ongoing market for recovery products. Promoting Illness and Recovery So strong is the linkage between illness and recovery that pharmaceutical company Eli Lilly sells Prozac by promoting the broad notion of depression, rather than the drug itself. It does so through depression brochures (advertised on TV) and a web page that discusses depression symptoms and offers a depression quiz, instead of product information. Likewise, Psych Central, a typical informational health site, provides consumers standard DSM depression definitions and information (from the biopsychiatric-driven American Psychiatric Association (APA) or the NIMH, and liberal behavioural illness quizzes that typically over-diagnose consumers. 10The Psych Central site also lists a broad range of depression symptoms, while its FAQ link promotes the self-management of mood ailments. For example, the site directs those who believe that they are depressed and want help to contact a physician, obtain a diagnosis, and initiate antidepressant treatment. Such web sites, viewed as a whole, appear to deliver certified knowledge that a 'normal' mood exists, that mood disorders are common, and that abiding citizens should diagnosis and treat their mood ailment. Another essential component of the behavioural script is the suggestion that the modern self's mood is interminably sick. Because common mood distresses are fodder for diagnosis, the self is always at risk of illness, and requires vigilant self-scrutiny. The self is never a finished product. Moreover, mood sickness is insidious and quickly spirals from risk to full-blown disorder. 11 As such, behavioural illness requires on-going self-assessment. Finally, because mood sickness threatens social productivity and State financial solvency, a moral overtone is added to the mix -- good citizens are encouraged to treat their mood dysfunctions promptly, for the common good. The script thus constructs citizenship as a motive for behavioural self-scrutiny; as such, it can naturally recommend that individuals, rather than experts, take charge of the surveillance process. The recommendation of self-determined illness is also a sales feature of the script, appealing to the American ethic of individualism -- even, paradoxically, as the script proposes that science best directs us to our selves. Self-Managed Recovery Health institutions and industries that deploy this script recommend not only self-diagnosis, but also self-managed treatment as the ideal treatment. Health information web sites, for example, tend to displace the expert by encouraging consumers to pre-diagnose their selves (often via on-line quizzes) and to then consult an expert for formal diagnosis and to organise a treatment program. Like governmental heath organisation's web sites, these commonly link consumer-driven, broad-spectrum diagnosis to psycho-pharmaceutical treatment, primarily by listing drugs as the first line of treatment, and linking consumers to drug information. Unsurprisingly, pharmaceutical companies support or own many 'informational' sites. Depression-net.com, for example, is owned by Organon, maker of Remeron, an SSRI in competition with Prozac.12 Still, even sites that receive little or no funding tend to display drugs prominently; for example, Internet Mental Health, which accepts no drug funding lists drugs immediately after diagnosis on the sidebar. This trend illustrates the extent to which drugs are viewed by consumers as a first step in addressing all types of mood sicknesses. Consumer health sites, geared toward Internet users seeking health care information (estimated to be 43% of the 120 million users) promote the illness-recovery link more aggressively. Dr.koop.com, one of the most visited sites on the Internet, describes itself as 'consumer-focused' and 'interactive'. Yet, the homepage of this site tends to include 'news' stories that relay the success of drugs or report on new biopsychiatric studies in depression or mental health. Some consumer sites such as Consumer health sites, geared toward Internet users seeking health care information (estimated to be 43% of the 120 million users) promote the illness-recovery link more aggressively. Dr.koop.com, one of the most visited sites on the Internet, describes itself as 'consumer-focused' and 'interactive'. Yet, the homepage of this site tends to include 'news' stories that relay the success of drugs or report on new biopsychiatric studies in depression or mental health. Some consumer sites such as WebMD prominently display links to drugstores, (such as Drugstore.com), many of which are owned in part or entirely by pharmaceutical companies.13 Similar to the common practices of direct-to-consumer advertising, both informational and consumer sites by-pass the expert, promote recovery via drugs, and direct the consumer to a doctor in search of a prescription, rather than health care advice. State, informational and consumer web sites all help to construct certain populations as at-risk for behavioural sickness. The NIMH information page on depression -- uncanny in its likeness to consumer health and pharmaceutical sites -- utilises the DSM definition of depression and recommends the standard regime of diagnosis and biotechnical treatments (highlighting antidepressants) most appropriate for a diagnosis of major, rather than minor, depression. The site also elaborates the broad approach to mood illness, and recommends that women, children and seniors -- groups deemed at-risk by the broad criteria -- be especially scrutinised for depression. By articulating the broad DSM definition of depression, a generalisable 'self' -- anyone suffering common ailments including sadness, lethargy or weight change -- is deemed at risk of depression or other behavioural illness. At the same time, at-risk groups are constructed as populations in need of more urgent scrutiny, namely society's less powerful individuals, rather than middle-aged males. That is, society's decision-makers--psychiatric researchers, State policy-makers, pharmaceutical CEO's, (etc) are considered least at risk for having defunct selves and productivity functioning. Selling Mood Sickness These brief examples illustrate the standard presentation of behavioural illness information on the Web and from traditional resources such as mailings, brochures, and consumer manuals. Presenting the ideal self as knowable and achievable with the help of bio-psychiatric science, these discourses encourage citizens to self-scrutinise, self-define, and even self-manage the possibility of mood or behavioural dysfunction. Because the individual gathers information, determines her pre-diagnosis, and seeks out a recovery technology, the many choices involved in behavioural scrutiny make it appear to be a free and 'democratic' activity. Additionally, as individuals take on the role of the expert, self-diagnosing via questionnaires, the highly disciplinary nature of the behavioural diagnosis appears unthreatening to individual sovereignty. Thus, this technology of the self solves an age-old problem of capitalist democracy -- how to simultaneously instill citizen's faith in absolute individual liberty (as a source of good government), and, at the same time, the need to achieve the absolute governance of the individual (Miller). Foucault contended that citizens are brought into the social contract of citizenship not simply through social and governmental contracts but by processes of policing that become embedded in our notions of citizenship. The process of self-management recommended by the ubiquitous behavioural script functions smoothly as a technology of surveillance in this era, where the ideal self is known and repaired through biopsychiatric science, the democratic responsibility of a good citizen. The liberal contract has always entailed an exchange of rights for freedoms -- in Rousseau's terms 'making men free by making them subjects.' (Miller xviii) When we make ourselves subjects to ongoing behavioural scrutiny, the resulting Self is not freed, rather it is constrained by a perpetual sickness. Notes 1 This term is used in a Foucaultian sense, to refer to all those who work under and benefit or profit from the dominant biological model of psychiatry dominant since the 1950's in the U.S. 2 For more discussion, see Ian Hacking, Rewriting the Soul; Multiple Personality and the Sciences of Memory. (1995) 3 In his essay 'Technologies of the Self' (1988) Foucault outlines the four major types of technologies that function as practical reason and entice citizens to behave according to constructed social standards. Among these are technologies of production (that permit us to produce things), technologies of sign systems (permitting us to use symbols), and the technologies of power and self mentioned in the above text. Through these technologies, operations of individuals become highly regulated, some visible and some difficult to perceive. The less visible technologies of the self became essential to the smooth functioning of society in the modern era. 4 'Technologies' is used to refer to mechanisms and actions of institutions or simply social norms and habits, that work, ultimately, to govern the individual, or create behaviour that serves desires of the State and dominant social bodies. 5 Peter Kramer, author of the best-selling book Listening to Prozac (1995) contends that his patients using Prozac often credited the drug with helping their true personalities to surface. 6 The two revisions occurred in 1987 and 1994. 7 Of that group, only five percent of that group suffers a 'severe' form of mental illness (such as schizophrenia, or extreme form of bipolar or obsessive compulsive disorder), while the rest suffer less severe behavioural and mood disorders. Similar research (also based on broad criteria) was published throughout the 90's suggesting an American epidemic of behavioural illness; it was claimed that 17% of the population is neurotic, while 10-15% of the population (and 30-50% of those seeking care) was said to possess a personality disorder. (Hales and Hales, 1995) 8 The most widely assigned diagnoses in this category today are: depression, multiple personality, adjustment disorder, eating disorders and Attention Deficit Hyperactivity Disorder (ADHD), which have extremely broad criteria, and are easily assigned to a wide segment of the population. 9The quizzes offered at these sites are standard in psychiatry; the difference here is that these are consumer-conducted. Lilly uses the Zung Self-Assessment Tool, which asks 20 broad questions regarding mood, and overdiagnoses individuals with potential depression. By responding to vague questions such as 'Morning is when I feel the best', 'I notice that I am losing weight', and 'I feel downhearted, blue and sad' with the choice of 'sometimes', individuals are thereby pre-diagnosed with potential depression. (https://secure.prozac.com/Main/zung.jsp) Psych central uses the Goldberg Inventory that is similarly broad, consumer-operated, and also tends to overdiagnose. 10 The DSM and other psychiatric texts and consumer manuals commonly suggest that undiagnosed depression will lead, eventually, to full-blown major depression. While a minority of individuals who suffer ongoing episodes of major depression will eventually suffer chronic major depression, it has not been found that minor depression will snowball into major depression or chronic major depression. This in fact, is one of the many suspicions among researchers that is referred to as fact in psychiatric literature and consumer manuals. A similar case in point is the suggestion that depression is a brain disorder, when in fact, research has not determined biochemistry or genetics to be the 'cause' of major depression. 11 Increasingly, Pharmaceutical sites are indistinguishable from consumer sites, as in the case of Bristol-Meyers Squibb's depression page, (http://www.livinglifebetter.com/src/htdo...) offering a layperson's depression definition and, immediately thereafter, information on its antidepressant Serzone. 12 Like the informational and State sites, these also link consumers to depression information (generally NIMH, FDA or APA research), as well as questionnaires. References American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, D.C: American Psychiatric Press, Inc., 1994. Cruikshank, Barbara. The Will to Empower: Democratic Citizens and Other Subjects. Ithaca, NY: Cornell University Press, 1999. Foucault, Michel. Madness and Civilization; A History of Insanity in the Age of Reason. New York: Vintage, 1961. - - - . The Order of Things; An Archaeology of the Human Science., New York: Vintage, 1966. - - - . The History of Sexuality; An Introduction, Volume I. New York: Vintage, 1976. - - - . 'Technologies of the Self', Technologies of the Self; A Seminar with Michel Foucault. Ed. Luther Martin, Huck Gutman, and Patrick H. Hutton. Amherst: University of Amherst Press, 1988. 16-49. Funicello, Theresa. The Tyranny of Kindness; Dismantling the Welfare System to End Poverty in America. New York: Atlantic Monthly Press, 1993. Hales, Dianne R. and Robert E. Hales. Caring For the Mind: The Comprehensive Guide to Mental Health. New York: Bantam Books, 1995. Healy, David. The Anti-Depressant Era. Cambridge, Mass: Harvard University Press, 1997. Kramer, Peter D. Listening to Prozac; A Psychiatrist Explores Antidepressant Drugs and the Remaking of the Self. New York: Viking, 1993. Miller, Toby. The Well-Tempered Self; Citizenship, Culture and the Postmodern Subject. Baltimore: The John Hopkins University Press, 1993. - - - . Technologies of Truth: Cultural Citizenship and the Popular Media. Minneapolis: University of Minnesota Press, 1998. Office of the Surgeon General. Mental Health: A Report of the Surgeon General. 1999. <http://www.surgeongeneral.gov/library/me...> Rose, Nickolas. Governing the Soul; The Shaping of the Private Self. London: Routledge, 1990. Links http://www.drugstore.com http://psychcentral.com/library/depression_faq.htm http://www.wikipedia.com/wiki/DSM-IV http://www.nimh.nih.gov/publicat/depression.cfm http://www.livinglifebetter.com/src/htdocs/index.asp?keyword=depression_index http://my.webmd.com http://www.mentalhealth.com http://www.surgeongeneral.gov/library/mentalhealth/home.html http://www.prozac.com http://my.webmd.com/ http://www.a-silver-lining.org/BPNDepth/criteria_d.html#MDD http://psychcentral.com/depquiz.htm Citation reference for this article Substitute your date of access for Dn Month Year etc... MLA Style Gardner, Paula. "The Perpetually Sick Self" M/C: A Journal of Media and Culture 5.5 (2002). [your date of access] < http://www.media-culture.org.au/mc/0210/Gardner.html &gt. Chicago Style Gardner, Paula, "The Perpetually Sick Self" M/C: A Journal of Media and Culture 5, no. 5 (2002), < http://www.media-culture.org.au/mc/0210/Gardner.html &gt ([your date of access]). APA Style Gardner, Paula. (2002) The Perpetually Sick Self. M/C: A Journal of Media and Culture 5(5). < http://www.media-culture.org.au/mc/0210/Gardner.html &gt ([your date of access]).

IntroductionFor over five years, Romanians have been using their bodies in public spaces to challenge politicians’ disregard for the average citizen. In a region low in standards of civic engagement, such as voter turnout and petition signing, Romanian people’s “citizenship of the streets” has stopped environmentally destructive mining in 2013, ousted a corrupt cabinet in 2015, and blocked legislation legalising abuse of public office in 2017 (Solnit 214). This article explores the democratic affordances of collective resistive walking, by focusing on Romania’s capital, Bucharest. I illustrate how walking in protest of political corruption cultivates a democratic public and reconfigures city spaces as spaces of democratic engagement, in the context of increased illiberalism in the region. I examine two sites of protest: the Parliament Palace and Victoriei Square. The former is a construction emblematic of communist dictator Nicolae Ceaușescu and symbol of an authoritarian regime, whose surrounding area protestors reclaim as a civic space. The latter—a central part of the city bustling with the life of cafes, museums, bike lanes, and nearby parks—hosts the Government and has become an iconic site for pro-democratic movements. Spaces of Democracy: The Performativity of Public Assemblies Democracies are active achievements, dependent not only on the solidity of institutions —e.g., a free press and a constitution—but on people’s ability and desire to communicate about issues of concern and to occupy public space. Communicative approaches to democratic theory, formulated as inquiries into the public sphere and the plurality and evolution of publics, often return to establish the significance of public spaces and of bodies in the maintenance of our “rhetorical democracies” (Hauser). Speech and assembly, voice and space are sides of the same coin. In John Dewey’s work, communication is the main “loyalty” of democracy: the heart and final guarantee of democracy is in free gatherings of neighbors on the street corner to discuss back and forth what is read in the uncensored news of the day, and in gatherings of friends in the living rooms of houses and apartments to converse freely with one another. (Dewey qtd. in Asen 197, emphasis added) Dewey asserts the centrality of communication in the same breath that he affirms the spatial infrastructure supporting it.Historically, Richard Sennett explains, Athenian democracy has been organised around two “spaces of democracy” where people assembled: the agora or town square and the theatre or Pnyx. While the theatre has endured as the symbol of democratic communication, with its ideal of concentrated attention on the argument of one speaker, Sennett illuminates the square as an equally important space, one without which deliberation in the Pnyx would be impossible. In the agora, citizens cultivate an ability to see, expect, and think through difference. In its open architecture and inclusiveness, Sennett explains, the agora affords the walker and dweller a public space to experience, in a quick, fragmentary, and embodied way, the differences and divergences in fellow citizens. Through visual scrutiny and embodied exposure, the square thus cultivates “an outlook favorable to discussion of differing views and conflicting interests”, useful for deliberation in the Pnyx, and the capacity to recognise strangers as part of the imagined democratic community (19). Also stressing the importance of spaces for assembly, Jürgen Habermas’s historical theorisation of the bourgeois public sphere moves the functions of the agora to the modern “third places” (Oldenburg) of the civic society emerging in late seventeenth and eighteenth-century Europe: coffee houses, salons, and clubs. While Habermas’ conceptualization of a unified bourgeois public has been criticised for its class and gender exclusivism, and for its normative model of deliberation and consensus, such criticism has also opened paths of inquiry into the rhetorical pluralism of publics and into the democratic affordances of embodied performativity. Thus, unlike Habermas’s assumption of a single bourgeois public, work on twentieth and twenty-first century publics has attended to their wide variety in post-modern societies (e.g., Bruce; Butler; Delicath and DeLuca; Fraser; Harold and DeLuca; Hauser; Lewis; Mckinnon et al.; Pezzullo; Rai; Tabako). In contrast to the Habermasian close attention to verbal argumentation, such criticism prioritizes the embodied (performative, aesthetic, and material) ways in which publics manifest their attention to common issues. From suffragists to environmentalists and, most recently, anti-precarity movements across the globe, publics assemble and move through shared space, seeking to break hegemonies of media representation by creating media events of their own. In the process, Judith Butler explains, such embodied assemblies accomplish much more. They disrupt prevalent logics and dominant feelings of disposability, precarity, and anxiety, at the same time that they (re)constitute subjects and increasingly privatised spaces into citizens and public places of democracy, respectively. Butler proposes that to best understand recent protests we need to read collective assembly in the current political moment of “accelerating precarity” and responsibilisation (10). Globally, increasingly larger populations are exposed to economic insecurity and precarity through government withdrawal from labor protections and the diminishment of social services, to the profit of increasingly monopolistic business. A logic of self-investment and personal responsibility accompanies such structural changes, as people understand themselves as individual market actors in competition with other market actors rather than as citizens and community members (Brown). In this context, public assembly would enact an alternative, insisting on interdependency. Bodies, in such assemblies, signify both symbolically (their will to speak against power) and indexically. As Butler describes, “it is this body, and these bodies, that require employment, shelter, health care, and food, as well as a sense of a future that is not the future of unpayable debt” (10). Butler describes the function of these protests more fully:[P]lural enactments […] make manifest the understanding that a situation is shared, contesting the individualizing morality that makes a moral norm of economic self-sufficiency precisely […] when self-sufficiency is becoming increasingly unrealizable. Showing up, standing, breathing, moving, standing still, speech, and silence are all aspects of a sudden assembly, an unforeseen form of political performativity that puts livable life at the forefront of politics […] [T]he bodies assembled ‘say’ we are not disposable, even if they stand silently. (18)Though Romania is not included in her account of contemporary protest movements, Butler’s theoretical account aptly describes both the structural and ideological conditions, and the performativity of Romanian protestors. In Romania, citizens have started to assemble in the streets against austerity measures (2012), environmental destruction (2013), fatal infrastructures (2015) and against the government’s corruption and attempts to undermine the Judiciary (from February 2017 onward). While, as scholars have argued (Olteanu and Beyerle; Gubernat and Rammelt), political corruption has gradually crystallised into the dominant and enduring framework for the assembled publics, post-communist corruption has been part and parcel of the neoliberalisation of Central and Eastern-European societies after the fall of communism. In the region, Leslie Holmes explains, former communist elites or the nomenklatura, have remained the majority political class after 1989. With political power and under the shelter of political immunity, nomenklatura politicians “were able to take ethically questionable advantage in various ways […] of the sell-off of previously state-owned enterprises” (Holmes 12). The process through which the established political class became owners of a previously state-owned economy is known as “nomenklatura privatization”, a common form of political corruption in the region, Holmes explains (12). Such practices were common knowledge among a cynical population through most of the 1990s and the 2000s. They were not broadly challenged in an ideological milieu attached, as Mihaela Miroiu, Isabela Preoteasa, and Jerzy Szacki argued, to extreme forms of liberalism and neoliberalism, ideologies perceived by people just coming out of communism as anti-ideology. Almost three decades since the fall of communism, in the face of unyielding levels of poverty (Zaharia; Marin), the decaying state of healthcare and education (Bilefsky; “Education”), and migration rates second only to war-torn Syria (Deletant), Romanian protestors have come to attribute the diminution of life in post-communism to the political corruption of the established political class (“Romania Corruption Report”; “Corruption Perceptions”). Following systematic attempts by the nomenklatura-heavy governing coalition to undermine the judiciary and institutionalise de facto corruption of public officials (Deletant), protestors have been returning to public spaces on a weekly basis, de-normalising the political cynicism and isolation serving the established political class. Mothers Walking: Resignifying Communist Spaces, Imagining the New DemosOn 11 July 2018, a protest of mothers was streamed live by Corruption Kills (Corupția ucide), a Facebook group started by activist Florin Bădiță after a deadly nightclub fire attributed to the corruption of public servants, in 2015 (Commander). Organized protests at the time pressured the Social-Democratic cabinet into resignation. Corruption Kills has remained a key activist platform, organising assemblies, streaming live from demonstrations, and sharing personal acts of dissent, thus extending the life of embodied assemblies. In the mothers’ protest video, women carrying babies in body-wraps and strollers walk across the intersection leading to the Parliament Palace, while police direct traffic and ensure their safety (“Civil Disobedience”). This was an unusual scene for many reasons. Walkers met at the entrance to the Parliament Palace, an area most emblematic of the former regime. Built by Communist dictator, Nicolae Ceaușescu and inspired by Kim Il-sung’s North Korean architecture, the current Parliament building and its surrounding plaza remain, in the words of Renata Salecl, “one of the most traumatic remnants of the communist regime” (90). The construction is the second largest administrative building in the world, after the Pentagon, a size matching the ambitions of the dictator. It bears witness to the personal and cultural sacrifices the construction and its surrounded plaza required: the displacement of some 40,000 people from old neighbourhood Uranus, the death of reportedly thousands of workers, and the flattening of churches, monasteries, hospitals, schools (Parliament Palace). This arbitrary construction carved out of the old city remains a symbol of an authoritarian relation with the nation. As Salecl puts it, Ceaușescu’s project tried to realise the utopia of a new communist “centre” and created an artificial space as removed from the rest of the city as the leader himself was from the needs of his people. Twenty-nine years after the fall of communism, the plaza of the Parliament Palace remains as suspended from the life of the city as it was during the 1980s. The trees lining the boulevard have grown slightly and bike lanes are painted over decaying stones. Still, only few people walk by the neo-classical apartment buildings now discoloured and stained by weather and time. Salecl remarks on the panoptic experience of the Parliament Palace: “observed from the avenue, [the palace] appears to have no entrance; there are only numerous windows, which give the impression of an omnipresent gaze” (95). The building embodies, for Salecl, the logic of surveillance of the communist regime, which “created the impression of omnipresence” through a secret police that rallied members among regular citizens and inspired fear by striking randomly (95).Against this geography steeped in collective memories of fear and exposure to the gaze of the state, women turn their children’s bodies and their own into performances of resistance that draw on the rhetorical force of communist gender politics. Both motherhood and childhood were heavily regulated roles under Ceaușescu’s nationalist-socialist politics of forced birth, despite the official idealisation of both. Producing children for the nationalist-communist state was women’s mandated expression of citizenship. Declaring the foetus “the socialist property of the whole society”, in 1966 Ceaușescu criminalised abortion for women of reproductive ages who had fewer than four children, and, starting 1985, less than five children (Ceaușescu qtd. in Verdery). What followed was “a national tragedy”: illegal abortions became the leading cause of death for fertile women, children were abandoned into inhumane conditions in the infamous orphanages, and mothers experienced the everyday drama of caring for families in an economy of shortages (Kligman 364). The communist politicisation of natality during communist Romania exemplifies one of the worst manifestations of the political as biopolitical. The current maternal bodies and children’s bodies circulating in the communist-iconic plaza articulate past and present for Romanians, redeploying a traumatic collective memory to challenge increasingly authoritarian ambitions of the governing Social Democratic Party. The images of caring mothers walking in protest with their babies furthers the claims that anti-corruption publics have made in other venues: that the government, in their indifference and corruption, is driving millions of people, usually young, out of the country, in a braindrain of unprecedented proportions (Ursu; Deletant; #vavedemdinSibiu). In their determination to walk during the gruelling temperatures of mid-July, in their youth and their babies’ youth, the mothers’ walk performs the contrast between their generation of engaged, persistent, and caring citizens and the docile abused subject of a past indexed by the Ceaușescu-era architecture. In addition to performing a new caring imagined community (Anderson), women’s silent, resolute walk on the crosswalk turns a lifeless geography, heavy with the architectural traces of authoritarian history, into a public space that holds democratic protest. By inhabiting the cultural role of mothers, protestors disarmed state authorities: instead of the militarised gendarmerie usually policing protestors the Victoriei Square, only traffic police were called for the mothers’ protest. The police choreographed cars and people, as protestors walked across the intersection leading to the Parliament. Drivers, usually aggressive and insouciant, now moved in concert with the protestors. The mothers’ walk, immediately modeled by people in other cities (Cluj-Napoca), reconfigured a car-dominated geography and an unreliable, driver-friendly police, into a civic space that is struggling to facilitate the citizens’ peaceful disobedience. The walkers’ assembly thus begins to constitute the civic character of the plaza, collecting “the space itself […] the pavement and […] the architecture [to produce] the public character of that material environment” (Butler 71). It demonstrates the possibility of a new imagined community of caring and persistent citizens, one significantly different from the cynical, disconnected, and survivalist subjects that the nomenklatura politicians, nested in the Panoptic Parliament nearby, would prefer.Persisting in the Victoriei Square In addition to strenuous physical walking to reclaim city spaces, such as the mothers’ walking, the anti-corruption public also practices walking and gathering in less taxing environments. The Victoriei Square is such a place, a central plaza that connects major boulevards with large sidewalks, functional bike lanes, and old trees. The square is the architectural meeting point of old and new, where communist apartments meet late nineteenth and early twentieth century architecture, in a privileged neighbourhood of villas, museums, and foreign consulates. One of these 1930s constructions is the Government building, hosting the Prime Minister’s cabinet. Demonstrators gathered here during the major protests of 2015 and 2017, and have walked, stood, and wandered in the square almost weekly since (“Past Events”). On 24 June 2018, I arrive in the Victoriei Square to participate in the protest announced on social media by Corruption Kills. There is room to move, to pause, and rest. In some pockets, people assemble to pay attention to impromptu speakers who come onto a small platform to share their ideas. Occasionally someone starts chanting “We See You!” and “Down with Corruption!” and almost everyone joins the chant. A few young people circulate petitions. But there is little exultation in the group as a whole, shared mostly among those taking up the stage or waving flags. Throughout the square, groups of familiars stop to chat. Couples and families walk their bikes, strolling slowly through the crowds, seemingly heading to or coming from the nearby park on a summer evening. Small kids play together, drawing with chalk on the pavement, or greeting dogs while parents greet each other. Older children race one another, picking up on the sense of freedom and de-centred but still purposeful engagement. The openness of the space allows one to meander and observe all these groups, performing the function of the Ancient agora: making visible the strangers who are part of the polis. The overwhelming feeling is one of solidarity. This comes partly from the possibilities of collective agency and the feeling of comfortably taking up space and having your embodiment respected, otherwise hard to come by in other spaces of the city. Everyday walking in the streets of Romanian cities is usually an exercise in hypervigilant physical prowess and self-preserving numbness. You keep your eyes on the ground to not stumble on broken pavement. You watch ahead for unmarked construction work. You live with other people’s sweat on the hot buses. You hop among cars parked on sidewalks and listen keenly for when others may zoom by. In one of the last post-socialist states to join the European Union, living with generalised poverty means walking in cities where your senses must be dulled to manage the heat, the dust, the smells, and the waiting, irresponsive to beauty and to amiable sociality. The euphemistic vocabulary of neoliberalism may describe everyday walking through individualistic terms such as “grit” or “resilience.” And while people are called to effort, creativity, and endurance not needed in more functional states, what one experiences is the gradual diminution of one’s lives under a political regime where illiberalism keeps a citizen-serving democracy at bay. By contrast, the Victoriei Square holds bodies whose comfort in each other’s presence allow us to imagine a political community where survivalism, or what Lauren Berlant calls “lateral agency”, are no longer the norm. In “showing up, standing, breathing, moving, standing still […] an unforeseen form of political performativity that puts livable life at the forefront of politics” is enacted (Butler 18). In arriving to Victoriei Square repeatedly, Romanians demonstrate that there is room to breathe more easily, to engage with civility, and to trust the strangers in their country. They assert that they are not disposable, even if a neoliberal corrupt post-communist regime would have them otherwise.ConclusionBecoming a public, as Michael Warner proposes, is an ongoing process of attention to an issue, through the circulation of discourse and self-organisation with strangers. For the anti-corruption public of Romania’s past years, such ongoing work is accompanied by persistent, civil, embodied collective assembly, in an articulation of claims, bodies, and spaces that promotes a material agency that reconfigures the city and the imagined Romanian community into a more democratic one. The Romanian citizenship of the streets is particularly significant in the current geopolitical and ideological moment. In the region, increasing authoritarianism meets the alienating logics of neoliberalism, both trying to reduce citizens to disposable, self-reliant, and disconnected market actors. Populist autocrats—Recep Tayyip Erdogan in Turkey, the Peace and Justice Party in Poland, and recently E.U.-penalized Victor Orban, in Hungary—are dismantling the system of checks and balances, and posing threats to a European Union already challenged by refugee debates and Donald Trump’s unreliable alliance against authoritarianism. In such a moment, the Romanian anti-corruption public performs within the geographies of their city solidarity and commitment to democracy, demonstrating an alternative to the submissive and disconnected subjects preferred by authoritarianism and neoliberalism.Author's NoteIn addition to the anonymous reviewers, the author would like to thank Mary Tuominen and Jesse Schlotterbeck for their helpful comments on this essay.ReferencesAnderson, Benedict R. Imagined Communities: Reflections on the Origin and Spread of Nationalism. London: Verso, 2016.Asen, Robert. “A Discourse Theory of Citizenship.” Quarterly Journal of Speech 90.2 (2004): 189-211. 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Cisneros, Josue David. “(Re)bordering the Civic Imaginary: Rhetoric, Hybridity, and Citizenship in La Gran Marcha.” Quarterly Journal of Speech 97.1 (2011): 26-49. “Civil Disobedience, Corruption Kills.” Facebook, 11 July 2018. 12 July 2018 <https://www.facebook.com/coruptia.ucide/videos/852289114959995/>. “Cluj-Napoca. Civil Disobedience.” Corruption Kills. 9 Sep. 2018 <https://www.facebook.com/coruptia.ucide/videos/847309685457938/>.Commander, Emily. “European Personality of the Year: Florin Badita, Founder of Corruption Kills.” Euronews, 31 May 2018. 12 Sep. 2018 <http://www.euronews.com/2018/05/31/european-personality-of-the-year-florin-badita-founder-of-corruption-kills>.“Corruption Perceptions Index 2017.” Transparency International, 21 Feb. 2018. 20 July 2018 <https://www.transparency.org/news/feature/corruption_perceptions_index_2017>. 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Photo ID 129550055 © Katarzyna Bialasiewicz | Dreamstime.com ABSTRACT It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon, and today, about 20 percent of people in the US live in jurisdictions that permit MAiD. The New York State legislature is currently considering a bill that would permit Medical Aid in Dying for terminally ill patients in certain defined circumstances. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions. This demonstrates that legislation can simultaneously grant terminally ill citizens the civil right to access MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. Given the copious evidence gathered in the past decades, concerns about abuse can no longer be credited as grounds for opposing the passage of legislation that is demonstrably both effective and safe. INTRODUCTION It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon,[1] and today, about 20 percent of people in the US live in jurisdictions that permit MAiD.[2] Other jurisdictions, including New York, are actively considering adopting MAiD laws. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions, demonstrating that legislation can permit MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. The data should allay the concerns of those who oppose MAiD due to the risk of abuse, coercion, and a hypothetical slippery slope. We, as a society, as clinicians, and as ethicists, must remain vigilant and prevent abuse of MAiD, given the potential risks in the community and in congregate care settings and the risk of patient exploitation by family members. However, given the copious evidence, concerns about abuse do not justify opposition to legislation that is effective and safe. I. New York’s MAiD Bill The New York State legislature is currently considering a bill that would permit MAiD for terminally ill patients in defined circumstances.[3] The bill applies only to adults with a terminal illness or condition that is “incurable and irreversible” and “will, within reasonable medical judgment, produce death within six months.” The bill contains numerous protective requirements: MAiD requests can only be made by the patient themself; requests cannot be made by healthcare agents, surrogates, or anyone else; MAiD requests must be made both orally and in writing to the patient’s attending physician; No person is eligible for MAiD solely because of age or disability; The patient’s attending physician must determine the patient has a qualifying terminal illness, has decision-making capacity, and has made a voluntary, informed decision to request MAiD, in the absence of coercion; These determinations must be confirmed by a second consulting physician in writing; If the attending physician has any concern that the patient may not have decision-making capacity, the patient must be referred to a mental health professional; The attending physician has additional duties to the patient, including ensuring the decision is informed, by discussing the patient’s condition and prognosis; discussing the MAiD process, and treatment alternatives like palliative and hospice care; offering referrals to other appropriate treatment, like palliative and hospice care; and educating the patient that their request can be rescinded at any time and offering them an opportunity to do so; The written request must be witnessed by at least two adults who cannot be (i) related to the patient, (ii) entitled to any portion of the patient’s estate, (iii) employed by a healthcare facility where the patient is receiving treatment or residing, (iv) or the attending physician, consulting physician, or mental health professional determining decision-making capacity; and MAiD medication must be self-administered by the patient, and it must be voluntarily ingested.[4] ARGUMENTS FOR AND AGAINST MAiD II. No Evidence of Abuse of Existing MAiD Laws MAiD supporters and critics alike have a concern about the abuse of MAiD. For this reason, MAiD laws throughout the US incorporate strict eligibility criteria and protective procedural requirements. For instance, patients are eligible only if they are terminally ill with six months or less to live, more than one physician must be involved, and requests must be witnessed (by individuals unrelated to the patient who will not profit from the patient’s estate). MAiD requests have been closely examined in the 27 years since Oregon became the first state to legalize the practice. The results show that these compassionate and protective measures have worked. There have been no documented or substantiated incidents of MAiD abuse since Oregon became the first to implement a MAiD law in 1997.[5] In 2019, the executive director of Disability Rights Oregon (DRO), an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported that DRO has never received a complaint that a person with disabilities was coerced into obtaining a prescription for MAiD drugs.[6] A recent study of aggregated data from all nine of the US jurisdictions with publicly available MAiD records from 1998 to 2002 found that 95.6 percent of those who died by MAiD were non-Hispanic white individuals, and 53.1 percent were male.[7] 72.2 percent of these individuals had at least some college education, 74 percent had a cancer diagnosis, and the median age of MAiD death was 74 years old. Only 11 percent of patients were uninsured. MAiD users tend to be white, older, educated, diagnosed with cancer, and insured. Fears that MAiD would overwhelmingly be used by (or on) the poor, the uninsured, the uneducated, or racial and ethnic minorities have not materialized. This data has actually raised a converse concern: that MAiD may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.[8] Opponents of MAiD may argue that the recent relaxation of certain legal restrictions in some jurisdictions is evidence that the slippery slope to unrestricted euthanasia has begun. This is a mischaracterization. Certain restrictions have been adjusted. For instance, Oregon and Vermont removed the residency restriction that previously excluded non-residents from eligibility.[9] Both states changed the residency requirement due to lawsuits challenging the constitutionality of requiring residence.[10] New Jersey’s law will likely change soon, as well.[11] Initial MAiD laws were drafted to be highly restrictive out of concern about unintended and unforeseeable consequences. Given the gravity of the subject, decades ago, it was better to err on the side of caution, even if that meant excluding from eligibility people who ought to, ethically or legally, be included. Now, with nearly 30 years of experience and data, we can better determine which requirements are necessary to appropriately protect patients, clinicians, and society. Restrictions proven to be unnecessary can now be modified. The core purposes of MAiD laws and the rights and protections they provide are not changing. Rather, a few aspects of the regulations are being adjusted so they are not more restrictive than necessary to achieve their purpose. The ever-growing body of evidence that MAiD laws can adequately protect against abuse and the mythic slippery slope has assured many that their fears will not materialize.[12] For example, NYU bioethicist Arthur Caplan was once a vigorous opponent of MAiD. He worried that MAiD laws would lead to the abuse of the poor, uninsured, and disabled in service of cost-saving or the convenience of others. [13] But, after closely following the empirical evidence from MAiD early-adopters, Oregon and Washington, Caplan changed his mind. In 2018, he argued in favor of the NY MAiD bill before the New York State Assembly Standing Committee on Health.[14] Discussing his review of evidence from these states, Caplan stated: I found no cause for my concerns, none with respect to the slippery slope. There isn’t solid evidence of coercion or duplicity being exercised with respect to people who choose assistance in dying in either state. The police, government officials, families of those who have chosen to use the legislation and the general citizenry find no causes or basis for changing the laws due to abuse or misapplication . . . These slippery slope arguments are just not true . . . there is no current factual support for this slippery slope argument that vulnerable individuals are at risk for being coerced into using the law.[15] Decades of evidence has shown that legislation can simultaneously grant terminally ill patients access to MAiD while also protecting against coercion and abuse. In the face of this evidence, continuing to deny access to MAiD because of hypothetical abuse is unjust and unethical. III. Views of Opponents are Neither Grounded in Fact nor Consistent with Current End-of-Life Practices a. Risk of coercion One common argument heard today from some disability advocates who oppose MAiD goes something like this: Everybody who would qualify for and use MAiD is (or will become) a disabled person, so MAiD only kills people with disabilities. The most common reasons people choose to end their lives via MAiD are disability issues, like loss of autonomy, less ability to engage in activities, and loss of dignity. They argue that, instead of making it easier for disabled people to die, we should make sure that proper services and support exist so that disabled people do not choose to die. Such disability-rights-based arguments tend to assert that to avoid abuse, we must prohibit MAiD altogether. They argue that legalizing MAiD will inexorably lead to abuse and coercion, and disabled people will be pressured into suicide. Some even argue that MAiD laws are the first step to euthanasia, noting the path in other jurisdictions.[16] As an initial matter, people with disabilities deserve adequate support and services, and these are not always available to them. People with disabilities have faced tremendous discrimination in the healthcare system and have been historically prevented from accessing proper care and asserting their autonomy. Ensuring that all can access adequate end-of-life care, like palliative or hospice care, is an ongoing battle that ought not be abandoned. But fighting for adequate end-of-life care and legalizing MAiD are not mutually exclusive. In Oregon, 90 percent of those who access MAiD are enrolled in hospice and states with MAiD laws tend to have better access to palliative care than states without.[17] MAiD proponents seek only to add another choice for the dying, not to diminish any other options. This is reflected in the text of New York’s pending bill, which explicitly requires patient education and referrals to appropriate end-of-life services, like palliative care and hospice.[18] No one has openly argued that society should hold terminally ill patients hostage in order to obtain broader support and funding for palliative care, but that is the practical effect. Beyond the need for supportive services and proper access to the full range of end-of-life care options, the disability argument fails. First, the assertion that MAiD laws will be abused and disabled people will be coerced into suicide is not grounded in fact. To the contrary, real-life evidence gathered in over two decades of legal MAiD has shown no documented or substantiated incidents of abuse, as discussed above.[19] The slippery slope has simply not materialized. Advocates for people with disabilities who are opposed to MAiD have not clearly articulated exactly who is vulnerable to being coerced into obtaining a MAiD prescription or even how such coercion could logistically occur. Most people with disabilities are not vulnerable to MAiD abuse, as they do not have a qualifying terminal illness or lack decisional capacity due to a developmental disability and are therefore not eligible. MAiD opponents appear to be claiming that all those who qualify for MAiD are vulnerable and seek protection from MAiD laws. But this would include many of the people that, over the past decades, have aggressively and publicly advocated for access to MAiD – terminally ill people, like Brittany Maynard,[20] many of whom lobbied hard for the passage of MAiD laws while knowing that they themselves would die before the laws passed. Opponents of MAiD from a segment of the disability rights community are telling individuals who they claim, without permission, as members of the MAiD opposition community, that they must all endure unimaginable suffering without a MAiD option because they must be protected from theoretical coercive harm. People with disabilities should be allowed to make their own choices. No one, not even the most well-meaning advocate, should be allowed to obstruct a patient’s end-of-life choices – those choices belong to the patient alone. b. Argument That the Demand for MAID is a Result of Poor Disability Services Second, the argument that terminally ill patients would decline MAiD if only they had better disability services or support is disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying. No provision of supportive services can change this. And it is perfectly reasonable for someone who knows that they will die in less than six months to want some control over the manner of their death and to avoid the deterioration, indignity, and suffering that could come with it. The argument construes a MAiD death as a choice to die rather than live with a disability. But individuals choosing MAiD are not choosing death – death is coming and coming quickly. MAiD simply offers some control over this reality, giving patients an option that is safe, certain, and painless. Certainly, supportive hospice services should be available for these individuals. But there is no evidence demonstrating that any amount of service would eliminate the need and desire for the MAiD option. c. Inconsistent Positions on MAID and Other Ending Life Care Options: Palliative Sedation and VSED MAiD opponents who are concerned about abuse and coercion often hold inconsistent views on other currently available ending life care options.[21] For example, some argue that palliative sedation[22] renders MAiD unnecessary and does not present the same ethical problems.[23] However, whereas MAiD can only be chosen by the patient themself (and the patient must have decision-making capacity), the same is not true for palliative sedation. Palliative sedation, a valuable modality of end-of-life care, does not have to be initiated by the patient. If the patient is deemed not to have decision-making capacity to make that decision, their healthcare proxy can decide to initiate the process and continue it until the patient dies. Individuals other than patients often choose to begin palliative sedation and continue it to its inevitable conclusion. And because palliative sedation does not require enabling legislation, none of the protective safeguards incorporated in MAiD legislation are available to protect those who receive palliative sedation. Some may try to differentiate between palliative sedation and MAiD by saying that once started, palliative sedation can always be discontinued – it need not end in the patient’s death. This is true, but the very process of palliative sedation will inevitably make the patient insensible or unconscious or otherwise unable to exercise a choice to stop sedation. With MAiD, the patient must self-administer and ingest the medication on their own, with death following quickly. The patient can choose to forgo MAID up until the very moment of self-administration. Considering MAiD’s procedural safeguards, including that only the patient may choose and administer MAiD, MAiD patients are offered more protection from potential abuse than patients who receive palliative sedation. While some have vocally opposed MAiD for decades, there has not been similar opposition to the option of voluntarily stopping eating and drinking (VSED). With VSED, adults with decision-making capacity make a voluntary decision to refuse nutrition and hydration to die more quickly. People choosing VSED are, essentially, making the same choice that people choosing MAiD do. But VSED is a less predictable process that takes much longer to complete. Unfortunately, the process also carries a risk of unpleasant side-effects, though proper care can help mitigate them. Additionally, the practice of VSED is not constrained by statutorily defined protective measures, as is the case with MAiD – one does not even need to have a terminal illness to choose VSED.[24] It is logically inconsistent for those who oppose MAiD because of the perceived potential of abuse to hold different views about VSED.[25] If malevolent actors can unethically pressure or coerce patients into MAiD, they can also coerce them to stop eating and drinking. As with palliative sedation, it could be argued that an important difference is that VSED can be stopped, unlike MAiD. This argument fails clinically and ethically. As with palliative sedation, the VSED process eventually results in the patient losing consciousness and decision-making capacity. The patient generally becomes unarousable for a period that could last for days or even weeks. For this reason, it is crucial for VSED patients to express their choice in writing (or preferably in video recording)[26] to ensure that they will not be given nutrition or hydration when they are no longer able to enforce their refusal (or if they begin asking for nutrition or hydration). Therefore, there is a period in which the patient cannot decide to end the process, just as with palliative sedation. To the extent that someone is so concerned with potential abuse of MAiD that they seek to ban it but have not expressed similar concerns with VSED, these positions are inconsistent. At a NYS Bar Association-sponsored conference on MAiD in 2019, David Hoffman asked a MAiD opponent whether, “as someone who is looking out for the interests of a segment of the disability population,” she supports palliative sedation and VSED.”[27] Kathryn Carroll, who represented the Center for Disability Rights (“CDR”), confirmed that CDR did not oppose palliative sedation and did not offer a position on VSED. She noted the subtle difference in intention: I don’t believe the Center for Disability Rights has taken issue with palliative sedation. And my understanding is that there is a key difference between palliative sedation and assisted suicide, particularly in that palliative sedation, the point is not to bring about the death of the person, but to relieve the pain that they are experiencing. And so the death is more of a side effect rather than the intended outcome.[28] During the questioning, she provided no explanation as to why the potential for abuse would be different among palliative sedation, VSED, and MAiD.[29] The other MAiD opponent on the panel, Dennis Vacco, of Vacco v. Quill[30] fame, interjected but could not explain any ethically significant difference between VSED and MAiD. Instead, he focused solely on palliative sedation, stating that the relevant difference is that palliative sedation can be stopped: . . . treating the pain including what you referred to as terminal sedation, is not moral and legally and ethnically the same as physician-assisted suicide . . . The fact of the matter is – the difference is you can terminate that treatment, and it’s the permanent aspect of physician-assisted suicide that goes back to what I said 20 minutes ago. You can’t put the bright line anyplace else other than where it is.[31] But, as discussed above, that difference is of little import, given that palliative sedation results in patients without the ability or capacity to make the choice to stop treatment. Vacco then reverted to his concerns about the potential for coercion and the elusive slippery slope, referencing his primary argument that the only way to ensure there is no abuse of a MAiD law is not to have one at all: The bright line that is created by the law in the state of New York, which makes physician-assisted suicide a manslaughter in the second-degree, or assisting suicide by anybody, manslaughter in the second degree . . . is unfortunately the only place that line can be. That line should not move further toward accommodation. And we see here in the context of . . . all of the so-called protections in the statute. With every protection that is not prohibition, with every protection, you raise the possibility of abuse. You raise the possibility with every protection.[32] Neither Vacco nor Carroll addressed the fact that many common practices today can be the result of coerced decisions. These practices have none of the safeguards contained in MAiD legislation. As another panelist, David Leven, stated: consider that people who want to have life-sustaining treatment withdrawn, whether it’s a ventilator or feeding tube, they can also be coerced by family members. That can happen even more often, of course, because that process takes place more and more often, and there are none of the safeguards that we’re talking about here . . . there are risks involved in any process which might result in a hastened death. But there seems to be very little risk involved with medical aid in dying based on the experience in 40 years and the nine states which now permit medical aid in dying.[33] There is an inescapable inconsistency within the disability argument: one cannot logically be so concerned about the abuse of legalized access to MAiD to justify opposing all MAiD legislation while simultaneously supporting options like palliative sedation or VSED as abuse-free alternatives. d. Argument Against Speaking for a Community with Diverse Views Finally, while some disability advocates opposing MAiD will claim terminally ill patients as part of their community, they have no right or authorization to speak for the extremely heterogeneous group of terminally ill patients or the disability community[34] as a whole. The disability community is not homogenous; while some members oppose MAiD, others support it.[35] Recent polling indicates that MAiD may have broad support across the disability community.[36] e. MAiD Opponents Hold the Rights of the Terminally Ill Subordinate to Their Personal Morality and Unsubstantiated Theoretical Concerns The argument that does not get much attention, the one that is the simplest and perhaps even the most compelling, is that all killing is wrong, and the government ought not to be in the business of enabling it. That is certainly a compelling religious and moral argument against individuals engaging in any form of acts that result in ending a human life. But such an ethical or theological position does not dictate that individuals who hold different views on personal morality should be precluded by the state from accessing the most safe, certain, and painless means of addressing an invariably terminal illness. Arguments like the one described above by Vacco (that the only way to completely avoid potential MAiD abuse is to prohibit MAiD) are essentially claiming that the safest thing to do is to subordinate the suffering of the terminally ill to avoid the more subtle task of balancing the interests of two different groups of New York state citizens. But surely, that is the role of the legislature every day. And we should expect no less from the legislature on this issue. The best way to ensure no one dies in car accidents is to prohibit driving. But instead of doing so, we implement safety regulations (like speed limits) to balance the right to travel with the right of everyone else not to be killed in the process. Evidence demonstrates that MAiD legislation can also strike a balance between the rights of the terminally ill and the need to prevent harm. It is not justifiable to support a blanket prohibition of MAiD. CONCLUSION Opponents of MAiD have had decades to cite problematic case studies or formulate a compelling moral argument against it that is grounded in data rather than an assertion of their personal morality. Plainly, no one on either side of the MAiD legislative discussion wants to see anyone subjected to involuntary euthanasia or coerced into MAiD as a better alternative to palliative care when such a plan of care is a viable alternative to “ending life care.” However, enough time has passed, and the risk of coercion has been given sufficient study and debate that we can now conclude, as a society, that the rights of the terminally ill and the rights of persons committed to living their best and longest life with a disability are wholly compatible. It is time for the legislature to strike the appropriate balance and give the terminally ill a well-regulated, responsible pathway to obtaining medication that can relieve their suffering in a manner that is safe, certain, and painless. - [1] Oregon’s Death with Dignity Act, Oregon Health Authority, https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/index.aspx [2] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [3] Medical Aid in Dying Act, A.995-A, N.Y. St. Assemb. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A; see also, Medical Aid in Dying Act, S.2445-A, N.Y. St. Senate (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/S2445A. [4] Id. [5] Ronald A. Lindsay, Oregon’s Experience: Evaluating the Record, 9 The American Journal of Bioethics 19 (2009), https://doi.org/10.1080/15265160802654137; Christopher A. Riddle, Medical Aid in Dying: The Case of Disability, in New Directions in the Ethics of Assisted Suicide and Euthanasia 234 (Michael Cholbi & Jukka Varelius eds., 2nd ed. 2023), https://doi.org/10.1007/978-3-031-25315-7; Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY ST. BAR ASSOC. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/; Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1; Fact: Medical Aid in Dying Laws Work to Protect Patients. (n.d.). Compassion & Choices. Retrieved September 5, 2023, from https://compassionandchoices.org/resource/fact-medical-aid-in-dying-laws-work-to-protect-patients; Frequently Asked Questions. (2021, December 7). Death With Dignity. https://deathwithdignity.org/resources/faqs/. [6] Bob Joondeph, Letter from Disability Rights Oregon (DRO), Compassion & Choices (Feb. 14, 2019), https://www.compassionandchoices.org/docs/default-source/default-document-library/disability-rights-oregon-dwd-letter-2-14-19.pdf. [7] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [8] Id. [9] Medical Aid in Dying: Act 39: Patient Choice and Control at the End of Life, Vermont Ethics Network, https://vtethicsnetwork.org/palliative-and-end-of-life-care/medical-aid-in-dying-act-39 (last visited Sept. 21, 2023). [10] Gideonse v. Brown, No. 3:21-cv-01568-AC (D. Or.); Bluestein v. Scott, No. 2:22-cv-00160 (D. Vt.). [11] Govatos v. Murphy, No. 2:23-cv-12601(D.N.J.). [12] Medical associations, historically opponents of MAiD, have begun adopting neutral positions, reflecting changing attitudes of the medical community. E.g., California Medical Association removes opposition to physician aid in dying bill, California Medical Association (May 20, 2015), https://www.cmadocs.org/newsroom/news/view/ArticleId/27210/California-Medical-Association-removes-opposition-to-physician-aid-in-dying-bill; Board directs CMS to develop and distribute “End-of-Life Act” education to members, Colorado Medical Society (November 22, 2016), https://www.cms.org/articles/board-directs-cms-to-develop-and-distribute-end-of-life-act-education-to-me; Vermont Medical Society Policy on End-of-life-Care, Vermont Medical Society (2017), https://vtmd.org/client_media/files/vms_resolutions/2017End-of-Life-Care.pdf (last accessed Sept. 21, 2023); but see Physician-Assisted Suicide, AMA Code of Ethics, https://code-medical-ethics.ama-assn.org/ethics-opinions/physician-assisted-suicide. (5.7 provides opinion opposing MAiD; opinion 1.1.7 provides opinion on conscientious objection.); The American Medical Association could vote to change its stance on medical aid in dying, Death with Dignity (Nov. 10, 2023), https://deathwithdignity.org/news/2023/11/ama-could-vote-to-change-stance-on-maid/ (Update notes that the AMA did not change its stance from opposed to neutral at its November 2023 interim meeting in Baltimore, but referred the resolutions for further study). [13] Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1. [14] Id. [15] Id. [16] Id. (noting the laws in Netherlands, Belgium and Canada.); see also National Council on Disability, The danger of assisted suicide laws: Part of the Bioethics and Disability series (2019). https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508.pdf. [17] Sean Riley & Ben Sarbey, The unexamined benefits of the expansive legalization of medical assistance-in-dying, 19 J. Bioethical Inquiry 4, 663 (2022) (citing Oregon Health Authority Center for Health Statistics, Oregon Death with Dignity Act: 2018 Data Summary (2019), https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year21.pdf and R. Sean Morrison, et al., America’s care of serious illness: A state-by-state report card on access to palliative care in our nation’s hospitals, 14 J. Palliat. Med. 10, 1094–1096 (2011)). [18] Medical Aid in Dying Act, A.995-A, N.Y. St. Assembly. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A [19] See also, Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (cataloging research in multiple countries and concluding that “there is no evidence that assisted dying laws have a disproportionate effect on people with disabilities”). https://doi.org/10.1111/bioe.13036 [20] Eyder Peralta, As Planned, Right-To-Die Advocate Brittany Maynard Ends Her Life, NPR (Apr. 3, 2014), https://www.npr.org/sections/thetwo-way/2014/11/03/361094919/as-planned-right-to-die-advocate-brittany-maynard-ends-her-life (Activist Brittany Maynard moved to Oregon after she was diagnosed with a malignant brain tumor, because her home state did not permit MAiD at the time). [21] Ending life care is defined as the final stage of the end-of-life care continuum, where the patient chooses to end their life as a means to end their suffering or unacceptable quality of life. [22] Palliative sedation is defined as “the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life,” and it carries a risk of hastening death. Molly L. Olsen, Keith M. Swetz & Paul S. Mueller, Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments, 85 Mayo Clin Proc 949 (2010). https://doi.org/10.4065/mcp.2010.0201 [23] E.g. Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide, Not Dead Yet, https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide (last visited Dec. 8, 2023) (describing palliative sedation as “a legal solution to any remaining painful and uncomfortable deaths; one that does not raise the very serious hazards of legalizing assisted suicide”); Testimony of CDR’s Kathryn Carroll, Esq. Opposing NY Assisted Suicide Bill A2383A, Not Dead Yet (Apr. 23, 2018), https://notdeadyet.org/testimony-of-cdrs-kathryn-carroll-esq-opposing-ny-assisted-suicide-bill-a2383a. [24] Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [25] This is not to say that MAiD and VSED are ethically identical. Different writers have articulated various reasons why MAiD and VSED are meaningfully different and meaningfully similar. Here we distinguish the potential for abuse, as this is the argument that persists among MAiD opponents, For a broader discussion on the ethics of VSED and how it compares to MAiD, see Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [26] Id.; see also David N. Hoffman and Judy Schwarz, Can Patients Choose to Stop Eating–Even If They Have Dementia–and Can Health Care Facilities Get Paid for Taking Care of Them? Ethics and Reimbursement at the End of Life (Am. Health L. Ass’n Conf. on Long Term Care and the Law 2020). [27] Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY St. Bar Assoc. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/. [28] Id. [29] CDR still does not appear to have articulated a position on VSED. CDR is a major and vocal opponent of MAiD legislation in NY with considerable resources (they state their projected 2010 budget was approximately $29,000,000). About Us, Center for Disability Rights, https://cdrnys.org/about/. [30] Vacco v. Quill, 521 U.S. 793 (1997) (holding that there is no equal protection violation when N.Y. law criminalized assisted-suicide but permitted removal of life-support systems). [31] Health Law Section: Duties, Rights & the Law at the End of Life (2019), supra note 5. [32] Id. [33] Id. [34] Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (providing evidence that “that people with disabilities, and disability rights organizations, have diverse views on the question of whether assisted dying should be legal”). https://doi.org/10.1111/bioe.13036 [35] Us for Autonomy, https://www.usforautonomy.org (last visited Sep 10, 2023); see also, Kathryn L. Tucker, Building Bridges Between the Civil Rights Movements of People with Disabilities and Those with Terminal Illness, 78 U. of Pitt. L. Rev. 329 (2017) (collecting and describing amici participation by disability advocates supporting end-of-life liberty). https://doi.org/10.5195/lawreview.2017.473 [36] E.g., USA/National Public Opinion Survey, Susquehanna Polling & Research, Inc. (Feb. 2023),https://d31hzlhk6di2h5.cloudfront.net/20230307/2e/9e/21/14/d37db7887f3f349202ae6f31/Raben_Crosstabulation_Report_2023.FINAL%20(1).pdf ).