#because this opens discussions about how we politicize bodies and how we interpret them

[uncanny-tranny]

The whole "breasts shouldn't be politicized because the primary purpose of breasts is to feed babies!" can be a fine jumping-off point, but I really wish people thought deeper than that when we talk about the ways in which bodies are politicized and restricted.

Like, why's it that when we talk about breasts, they must have some Higher Purpose? It's true that breasts aren't inherently sexual, but they aren't valuable solely because they can potentially feed a baby. A human body doesn't have to serve a Higher Purpose in order for it to not be legislated against or policed, and I just wish people would remember it isn't always about babies, about other people, about anything else other than the people who have that body.

[sewingscars]

Diversion!!!

To all the trans military and veterans who have fought for our freedom, WE SEE YOU AND WE THANK YOU!!! . 

We will NOT be posting any articles about the Anus-Mouthed-Leathery-Tangerine's tweets from his shitter. This is not to devalue or distract from this mornings news. On the contrary, it is simply a reminder.

 This piece of shit H.R.2796 - Civil Rights Uniformity Act of 2017 was introduced into Congress on 6-7-2017. 

https://www.congress.gov/bill/115th-congress/house-bill/2796 

.Civil Rights Uniformity Act of 2017 

This bill prohibits the word "sex" or "gender" from being interpreted to mean "gender identity," and requires "man" or "woman" to be interpreted to refer exclusively to a person's genetic sex, for purposes determining the meaning of federal civil rights laws or related federal administrative agency regulations or guidance. 

No federal civil rights law shall be interpreted to treat gender identity or transgender status as a protected class unless it expressly designates "gender identity" or "transgender status" as a protected class. 

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YESTERDAY DAY 187- 1/ Senate Republicans secured the 51 votes needed to advance their health care bill after Pence cast the tie-breaking vote. The Senate will now begin debating, amending, and ultimately voting in the coming days on the future of Obamacare. The vote was too close to call until the last moments, when several Republican holdouts announced their support, including Rand Paul, Dean Heller, Rob Portman, and Shelley Moore Capito. Senators Susan Collins and Lisa Murkowski both voted against the motion to proceed. (New York Times / Washington Post / CNN)

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 2/ The Senate will now have 20 hours of debate the health care bill, evenly split between the two sides. Senators can bring up and debate an unlimited number of amendments to the bill as long as they are “germane” to the bill and would not add to the budget deficit. Then a period known as vote-a-rama happens, where Senators votes on the amendments. The first amendment will be the Obamacare Repeal Reconciliation Act, which repeals most of the Affordable Care Act without a replacement. If that fails (as is expected), Senators will then vote on the Better Care Reconciliation Act, which cuts massive portions of the ACA. Because of reconciliation rules, these amendments would require 60 votes to pass. If BCRA fails, Senators will consider what is being called a “skinny repeal,” which repeals the individual mandate penalty, the employer mandate penalty, and the tax on medical devices. (New York Times / Vox / Time / NBC News) John McCain returned to the Senate for the health care vote after being diagnosed with brain cancer last week. McCain’s vote is critical to today’s procedural vote. His absence would have left Senate Republicans with no margin of error. (Washington Post / Politico) Senate Republicans don’t know what’s in their health care plan, but they voted anyway on the motion to proceed. About a half-dozen senators were publicly undecided about whether to start debate on rolling back the Affordable Care Act. Several senators have said they want a “replace” plan ready to go before voting “yes.” An agreed upon replace plan is not in place. The bill will have to pass the House before making its way to Trump’s desk. McConnell forced the procedural vote to put every senator on record. (Politico / Vox / CNN). 

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 3/ Trump ripped Jeff Sessions on Twitter, calling him “very weak” when it comes to investigating Hillary Clinton. Trump has repeatedly taken aim at Sessions in recent days, leading to speculation that it’s just a matter of time before the attorney general resigns or is fired. The recent tweets come a day after Trump publicly described Sessions as “beleaguered.” (NBC News / CNN) 

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 4/ Later in the day, Trump added that he is “very disappointed in Jeff Sessions” but won’t say if he’ll fire him. Trump has previously discussed replacing Jeff Sessions in a move viewed by some of Trump’s advisors as part of a strategy for firing special counsel Robert Mueller in order to end his investigation into the campaign’s efforts to coordinate with the Kremlin to influence the 2016 election. Sessions recently asked White House staff how he could patch up relations with Trump, but that went nowhere. Instead, Trump floated longtime ally Rudy Giuliani as a possible replacement for Sessions. (Wall Street Journal / Washington Post / Associated Press)

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 5/ Sessions is “pissed” at Trump for the attacks, but doesn’t plan to quit. Senate Republicans have said that attacks on Sessions, who spent 20 years in the Senate, strain their relationship with Trump. Many GOP senators have expressed annoyance with Trump’s tweets, saying “I really have a hard time with this” and "I’d prefer that he didn’t do that. We’d like Jeff to be treated fairly.” Senators have also been nonplussed by Trump’s criticism of Sessions’ decision to recuse himself, saying “Jeff made the right decision. It’s not only a legal decision, but it’s the right decision.“ Trump’s senior policy adviser Stephen Miller and Steve Bannon also support Sessions. (The Daily Beast / McClatchy DC)

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 6/ Anthony Scaramucci says it’s "probably” correct that Trump wants Sessions gone. The new White House communications director didn’t want to speak for the president, but said he thinks Trump has a “certain style” and he is “obviously frustrated.” (The Hill)

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 7/ Senate Democrats are planning a procedural move to prevent Trump from making recess appointments by forcing the Senate to hold “pro forma” sessions – brief meetings, often only a few minutes. Democrats are worried Trump could attempt to bypass Congress and appoint a new attorney general and undermine special counsel Robert Mueller’s ongoing probe into alleged Russian meddling in the US election during the planned August recess. (CNN / Reuters) 

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 8/ The Senate Judiciary Committee issued a subpoena to Paul Manafort to testify in its Russia probe. Manafort had agreed to provide notes of the meeting at Trump Tower last year with the Russian lawyer, according to a person close to the investigation. Committee chairman Chuck Grassley and ranking member Dianne Feinstein said they had been “unable to reach an agreement for a voluntary transcribed interview with the Judiciary Committee” with Manafort. (ABC News / Politico) . UPDATE: **The Senate Judiciary Committee has dropped the subpoena against Paul Manafort **and plans are underway for the former Trump campaign chairman to speak to investigators. (Politico) 

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9/ Parents are angry after Trump delivered a politicized speech to tens of thousands of boy scouts. Over 35 minutes, Trump threatened to fire one of his Cabinet members, attacked Obama, dissed Hillary Clinton, marveled at the size of the crowd, warned the boys about the “fake media,” mocked the polls, and said more people would say “Merry Christmas.“ Responding to criticism, the Boy Scouts of America insisted it was "wholly non-partisan and does not promote any one position, product, service, political candidate or philosophy.” (Washington Post / BBC) Trump joked he would fire Health and Human Services Secretary Tom Price if the health care bill doesn’t pass. “Hopefully he’s going to get the votes tomorrow to start on the path to kill this thing called ObamaCare that’s really hurting us,” Trump said during a speech to Boy Scouts at the 2017 National Jamboree. “He better get them, otherwise I’ll say, ‘Tom, you’re fired.’” (The Hill) 

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10/ Trump confirmed a covert CIA program while tweeting that the Washington Post had “fabricated the facts” about his decision to end a program aiding Syrian rebels fighting the government of President Bashar al-Assad. Trump was referring to a story about ending an Obama program where the CIA armed and trained moderate Syrian rebels, a move long sought by the Russian government. (Washington Post / Politico) 

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 11/ A federal judge ruled that Trump’s voter fraud commission may request voter roll data from states. Opponents contend the effort could infringe on privacy rights. The judge said the lawsuit did not have grounds for an injunction because the commission was not technically an action by a government agency – the commission is an advisory body that does not have legal authority to compel states to hand over the data. (Reuters) 

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12/ Jared Kushner bought real estate from an oligarch’s firm represented by the Russian lawyer. Lev Leviev was a business partner at Prevezon Holdings, where Natalia Veselnitskaya acted as legal counsel. Prevezon was being investigated by Preet Bharara for money laundering before he was fired by Trump in March. Prevezon Holdings attempted to use Manhattan real estate deals to launder money stolen from the Russian treasury. In 2015, Kushner paid $295m to acquire several floors of the old New York Times building at 43rd street in Manhattan from the US branch of Leviev’s company. The Prevezon case was abruptly settled two days before it was due in open court in May for $6 million with no admission of guilt on the part of the defendants. (The Guardian) 

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13/ A White House press aide resigned after Anthony Scaramucci said he planned to fire him over alleged leaks. Michael Short is the first to leave after Scaramucci promised all aides “a clean slate” and “amnesty” to prove that they were not leaking. “This is the problem with the leaking,” Scaramucci told reporters outside the White House. “This is actually a terrible thing. Let’s say I’m firing Michael Short today. The fact that you guys know about it before he does really upsets me as a human being and as a Roman Catholic.” Short, who initially said Tuesday that he hadn’t yet been informed of any decision, resigned Tuesday afternoon. (Washington Post / Politico / The Hill) 

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DAY188 - Trump TWEETS ( NO official report, NO press release, NO executive order) that trans people are banned from the military. The Internet explodes. Everything that has been happening is no longer discussed. His diversion has been executed perfectly. MISSION ACCOMPLISHED. #lightingahellfiretocoverashitstorm

[philaprint]

Give Much Respect Due: How Female Rappers Inspire Black Queer Boys

MARCH 02, 2017

By Devyn Springer

It’s 2001. My mother opens the bathroom door and I am in my underwear, breathing heavily like a backup dancer. I have a smile on my face and sweat on my shoulders. My little ribs under my brown skin are sore because I’ve been shaking my hips from left to right for an entire verse and chorus. I’m looking at myself in the mirror and seeing myself as what resembles a Keith Haring painting; vibrant colors, bold lines creating motion. My mother lets out a small laugh, reminding me she is still there watching, and then she joins me in singing the chorus and moving her hips, “Chumpy, I break up with him before he dumps me/ To have me, yes you’re lucky.”

I have an obsession with flipping through my mother’s book of CDs and looking at all of the album art with awe until I find my selection, and I always seem to gravitate towards Missy Elliott, Da Brat or Queen Latifah; not that I am familiar with who those people are at 5 years-old, but because the album art has a curious way of making me feel something that resembles confidence.

It’s 2008.  The Keith Haring painting the mirror had grown familiar with has turned into a small medium brown boy who looks more like a Basquiat painting, or a question walking around waiting for someone to answer it. My body feels awkward like my limbs and shoulders are a bit too big for my middle school being, and I am no longer the best dressed in class. I got headphones for Christmas and haven’t stopped playing Trina’s “Glamorest Life” in my ears since Christmas morning because when her loud and braggadocious voice comes crashing onto the treble-fueled beats, I feel like I fit in a bit more. I feel a strange confidence become me when I hear her rap “who you lovin’ who you wanna be huggin/ I seen her in your six hundred and you claim it's your cousin,” and I am proud of myself for understanding the first half of that line as a Lil Kim reference.

It’s 2011. The Basquiat painting feels like a Marina Abramović piece at this point, as I’ve begun to master the performance art of my own sexuality. I am driving the first car I own at night with the windows down, and Lil Kim tells me, “I used to be scared of the dick/ now I throw lips to the shit, handle it/ like a real bitch/ Heather Hunter, Janet Jacme.” I grip my hand on the passenger’s thigh, we kiss at a red light, and I say “Yo, you’ve gotta Google who Heather Hunter and Janet Jacme are real quick. Kim always comes through with the crazy references!” We laugh and pontificate on that line for a second before kissing again. I used to be scared of the dick lingers in the air, with Kim’s voice heavy and thick and a certain kind of honesty that is uncomfortably interesting, as I sit in the car with the first person to ever have sex with me.

They tell me all I ever do is listen to female rappers. They assure me they don’t think that’s a bad thing. They ask me why that is, and I explain how much I admire not only their lyrical delivery and dramatized personas, but I also love their performances of gender. I adore the way they help me, in some strange and almost inexplicable way, navigate my own relationship to the gender I was socialized into. I enjoy the way their gender within hip-hop, within their songs and lyrics, within their aesthetics, is politicized -- because it is something I am familiar with, and didn’t know how to express until I found them. My relationality to gender has always been one of having identities and labels ascribed to me, with terms and assumptions projected onto my body, and I saw pieces of that in the Black women who inspired me through their music.

Female rappers have narrated more moments of my life than I know how to explain, and have projected feelings on me I either forgot I needed to feel or couldn’t explain that I felt. When Nicki says “you was sleepin’ on me, thinking it was sumber time/ Now I’m a trending topic, lil mama, number signs” there is a breath of relatable energy that exists between us. It is in the way she openly refers to being slept on and openly discusses her struggles being a Black woman in a male-dominated industry that I am able to vibrate in a similar wavelength to her. The way that she is referred to as “difficult” for simply being about her business is a sentiment that resonates deeply with me as well because queer Black boys aren’t allowed to be outspoken without being “sassy” or seen as a queen. And if Nicki Minaj is slept on, her bravado simplified, her demands demeaned, then I can relate to her on a deeper level. And it is in the way she snaps back, reminding her ‘haters’ that she’s now a trending topic, that makes the inner scared and awkward queer boy in me go back to swinging his hips like a Keith Haring painting.

To be Black and queer is to have a strange relationship with space, or the lack thereof, and to have an even stranger relationship with confidence. The space that we are able to carve into this world looks a little different than other people’s. Our space looks nocturnal; night clubs, ballrooms, and dancing in our underwear with our friends to the newest Remy Ma song, grabbing pieces of her confidence and wearing it like an invisible cloak that hides us from the world. Women who rap, much like queer Black boys, manage to be both hypervisible and invisible at the same time; our bodies are sexualized before we have the choice to do it ourselves, and when we do own our own overt sexuality we are called conceited.

We can also look at the queer aesthetic often found in female rappers presentation to fully understand the massive appeal they are able to have to the Black queer community. I heard a friend say one time, “Nicki Minaj is one of the world’s greatest drag queens.” At the time, I was offended. What I assumed to be a transphobic remark likening Ms. Minaj’s appearance to that of a masculine figure was really a sly and subverted critique on the queerness of her aesthetic.

In reality, she is one of the world’s best drag queens, as are Lil Kim, Eve, Missy Elliott, and Left Eye, and several others. Drag and ball culture are such large parts of our Black queer community that you can’t help but notice the aestheticism seeping into the music video of Missy Elliott’s new single “I’m Better,” or the outlandishly early-2000s era fashion that Foxy Brown often adorned. The only one who switches a wig as much as a drag queen is Nicki Minaj, with the extravagance of a couture outfit and high-contoured cheekbones to match.

I am reminded of the artist and philosopher Adrian Piper’s “dear friend, I am black...” calling cards she would give to people who said racist or problematic things to her, and it feels that in this similar sentiment exists female rappers’ performance of gender and sexuality. As if through lyrics and aesthetic they are reminding you, “dear friend, I am a sexual being, I Black woman…” It is as if they understand the need to subvert femininity and sexuality into a performance, one that at times is even exaggerated, for the sake of the artistic statement. And because so much of the vitality surrounding modern interpretations of gender and sexuality is performance, the female rapper has the transcendent ability to do what only an artist can do: blue the line between sociopolitical commentary, art, and expression.

Whether through intentional subversion or simple fashion-forward styling, several female rappers have played with the traditions of gendered clothing and presented themselves as something far more interesting than a gender binary could ever allow them to be. I am reminded of Left Eye in the music video for “Ain’t Too Proud To Beg,” wearing baggie jeans and t-shirts, holding her crotch while she raps her sex-positive lyrics alongside the feminine presentation of Chilli and T-Boz. I think of Lady of Rage in the “Afro Puffs” music video, dressed almost like a biker chick, with her broad shoulders, dark and oversized leather draped from her body, and it makes me think of almost every Da Brat, Queen Latifah, and Yo-Yo music video I’ve watched where they wore traditionally masculine suits and clothing.

Plenty of the visual specificities in fashion and art between the early 90s and now have been influenced by this presentation, with women and other queer people drawing inspiration from this aestheticism. So, when we arrive at a Nicki Minaj, or an Angel Haze, or an Azealia Banks, or a Princess Nokia, or a Lola Monroe, or a Young MA, it is no surprise that they continue to transform and uphold the legacy that was established for them through generations of foremothers. They continue to be the fire-spitting drag queens at the front of a battle for inclusivity and acceptance in a cis-hetero patriarchal industry, one that often reflects the values of the Black community.

As a Black queer boy, female rappers embody much of the confidence we often aspire to and achieve. When Trina taught me to be the baddest bitch, I didn’t know that Queen Latifah had already told me I need to be addressed as “your highness.” When Foxy asked why “all the sudden all these rap bitches got accents too?” Nicki Minaj was ready to ask where the fuck is her curry chicken and her rice and peas? You see, it is in the way they demand to be referred to as a queen and the Queen Bitch, to be given what they deserve, to be adorned with the highest fashion and pop bottles right next to the male rappers, that a confidence so bold and unique exists and flourishes. They are able to embody a powerful, magical feminine strength that reads like confidence but feels like life being handed over in a syringe.

When I was the small boy who was still carefree and still had space in his chest for joy, Missy Elliott, and Left Eye were there to help me shake my hips; their music would bring me the movement and vibrations like in the Keith Haring paintings. When I was an awkwardly small child in a world that felt too big, Trina, Remy Ma, and Foxy Brown gave me the confidence I didn’t know I deserved but definitely needed. I heard Foxy tell me she has these rap bitches in a chokehold at least once a week. And when I became intimate for the first time and love tasted like sex, I had many Lil Kim lyrics that lent themselves to me.

Today as a Black queer activist and artist navigating the world through an intersectional lens, I’m able to see just how monumental the role of a woman rapping on the radio can be for a Black queer boy. I now have the language, voice, and ears to realize that it has been female rappers playing in the background of my life for decades. They’ve always been the ones that have given me life time and time again when the world hands little queer boys nothing but death, and they’ve always been the ones to be doin’ things that you won’t regret.

https://www.philadelphiaprintworks.com/blogs/news/give-much-respect-due-how-female-rappers-inspire-black-queer-boys

[bluewatsons]

Christopher Newell, Disability, Bioethics, and Rejected Knowledge, 31 J Med & Phil 269 (2006)

Abstract

In this article I explore disability as far more than individual private tragedy, suggesting it has a social location and reproduction. Within this context we look at the power relations associated with bioethics and its largely uncritical use of the biomedical model. Within that context the topics of genetics, euthanasia, and biotechnology are explored. In examining these topics a social account of disability is proposed as rejected knowledge. Accordingly we explore the political nature of bioethics as a project.

I. Introduction

The disability rights community has recently made far-reaching claims about the inherently political nature of biomedicine. Yet, that critique is largely met with scepticism by the biomedical community, as well as the bioethics community (Buchanan et al., 2000Buchanan, A., Brock, D., Daniels, N. and Wikler, A. 2000. From Chance to Choice: Genetics and Justice, New York: Cambridge University Press.[CrossRef], [Google Scholar]; Wertz, 2000Wertz, D.C. 2000. “Drawing lines: Notes for policymakers”. In Prenatal Testing and Disability Rights, Edited by: Parens, E. and Asche, A. 261–287. Washington, DC: Georgetown University Press. [Google Scholar]). In a way, with so many departments and institutes of bioethics housed in medical schools, it is clear that hearing the critical voices of marginal communities is a threat not only to biomedicine, but bioethics. There are many within mainstream bioethics who have called for a richer discussion of disability in bioethics (Kuczewski, 2001Kuczewski, M.G. 2001. Disability: An agenda for bioethics. American Journal of Bioethics, 1(3): 36–44.[INFOTRIEVE][CSA][CROSSREF][Taylor & Francis Online], [Google Scholar]). Still for all the calls for openness and hearing the voices of people with impairment, little has really changed because the biomedical establishment continues to reject as merely political the voices of disabled people. For instance, in an influential paper titled, The Politicization of Medical Ethics, Dame Mary Warnock criticises “the absurd political correctness” of critiques of medical ethics offered by people with disability, questioning “ableism,” as if only the marginal voices occupy a political space, or as it is more commonly known, disablism (Warnock, 1999Warnock, M. 1999. The politicisation of medical ethics. Journal of the Royal College of Physicians of London, 33(5): 474–478.[CSA] [Google Scholar], p. 478).

In this article I suggest that a disability perspective offers a valuable dimension to bioethics. This dimension is particularly important as it utilises markedly different premises leading to different conclusions. The lived experience of those who identify as disabled is often rejected as emotional or anecdotal. Yet that their knowledge is rejected can easily be demonstrated through an examination of genetics, euthanasia, and biotechnology. We can discover the crucial role of power relations which foster the disablism dismissed by Warnock and largely only merely acknowledged by mainstream bioethics.

In providing such a perspective it needs to be acknowledged that there is no one disability voice to be presented to bioethics. Indeed, I teach and consult in the area of bioethics; I also identify as someone living with disability. For all of the claims that bioethics listens to many different voices, the social account of disability—an account that claims that disability is more than individual pathology—also reveals a bioethics that either rejects the voices at the margins of able-bodied society, or uses them for the various agendas of bioethics, only to put the disabled voices back on the shelf where they can no longer be heard. This article offers a different account of bioethics from the vantage point of knowledges that are rejected. I shall show that, while disability is often central to many bioethical debates, it is also marginal in terms of any acknowledgement of the voices of people with disability. At its best, a social account of disability is a marginal part of the international bioethics communities, including regulatory bodies and professional practice. In part, this no doubt reflects the disadvantaged structural position of disability in society (Goggin & Newell, 2005Goggin, G. and Newell, C. 2005. Disability in Australia—Exposing a Social Apartheid, Sydney: UNSW Press. [Google Scholar]).

II Disablism and the Politics of Rejected Knowledge

Disablism, or ablism as Warnock puts it, may also be seen in terms of oppression (Abberley, 1987Abberley, P. 1987. The concept of oppression and the development of a social theory of disability. Disability, Handicap & Society, 2(1): 5–20.[INFOTRIEVE][CSA][Taylor & Francis Online], [Google Scholar]). Warnock acknowledges the marginal status of the disabled. She states:

The disabled are constantly put down, their point of view disallowed, because they are comparatively weak. The disabled therefore object that they, as a group with a particular point of view and particular common interests, are not only being disregarded (‘marginalised’) but they are actually the victims of a policy which would eliminate them all together. (Warnock, 1999Warnock, M. 1999. The politicisation of medical ethics. Journal of the Royal College of Physicians of London, 33(5): 474–478.[CSA] [Google Scholar], p. 477)

Oliver puts it in the following way:

If the category disability is to be produced in ways different from the individualised pathological way it is currently produced, then what should be researched is not the disabled people of the positivist and interpretive research paradigms but the disablism ingrained in the individualistic consciousness and institutionalised practices of what is, ultimately, a disablist society. (Oliver, 1996, p. 143)

Still Warnock, in an analysis breathtaking for its lack of structural analysis, despite an awareness of some of the inherent politics, goes on to critique a commonality between feminist and disability groupings, in observing: “What is common to the disabled and the feminist groups, is that both are inclined to place inverted commas around words such as ‘disabled’ or ‘handicapped,’ thus implying that such categorisations are artificial social constructions denoting nothing essential in the person” (Warnock, 1999Warnock, M. 1999. The politicisation of medical ethics. Journal of the Royal College of Physicians of London, 33(5): 474–478.[CSA] [Google Scholar], p 478).

While she tends to generalize somewhat, Warnock does have a point. Much of the critical disability studies literature in the 1980’s and 1990’s revolved around the so-called social model of disability, with the social construction of disability being clearly identified (see, for example, Oliver, 1990; Fulcher, 1989Fulcher, G. 1989. Disabling Policies?, London: Falmer Press. [Google Scholar]). These early critiques could almost be categorized as promulgating the false idea that diseases and impairment are mere social constructions. Few in disability studies actually believe that impairment is merely socially constructed, and such characterizations of the social model of disability may be seen as misleading. Many people living with disease and impairment understand the complexity of diseases or disabilities are hardly just social constructs.

But surely there is a much more substantive critique offered by disability rights advocates and feminists than inverted commas. For some of us Warnock glosses over what disability rights advocates mean when they speak of categorizations and disabling society. For the meanings associated with particular impairment or disease states are socially constructed, and disability surely has many meanings, and one of those meanings certainly belongs to biomedicine. Disability is after all a rather odd category even for biomedicine. How can different impairments in multiple different body parts of different individuals all result in something called disability, without there being some sort of categorization going on? Eyes that don’t work, legs that don’t work, ears that don’t work are all referred to as disability. All people with such a diversity of impairment are put under a single universal category of disability—a category of the same: people with blindness and people with deafness are the same, namely disabled.

Likewise, Warnock fails to identify the essentially political dimension of identifying as having disability or caring for someone with disability. Rather than “…denoting nothing essential in the person,” as Warnock suggests, “disability” may be seen as highly political when one considers both the positive benefits bestowed by society on those with disability, as well as the negative consequences of being so labelled. And indeed taking note of these highly politically charged notions is essential for the social change that even Warnock acknowledges is necessary. Thus, it is necessary to acknowledge the inherent politics of biomedicine—and its moral spokesperson, bioethics—when seeking political change. For example, Ian Parsons (2000), in his stimulating book Cripples, Coons, Fags and Fems, in comparing four human rights movements, suggests that identifying as having disability and celebrating that despite negative norms and structures is a vital component of social change, pointing especially to the gains of other social movements such as the gay and lesbian movement.

Warnock is particularly helpful in summarizing a mainstream bioethical response to the disability rights community’s critique of bioethics, as she decries the “politicization of medical ethics” as if it were never inherently political, or as if only feminist and disability scholars act politically, thus tainting the neutral position of medical ethics. The way in which she makes reference to feminist and disability arguments helps to point to the dissatisfaction with dominant accounts of bioethics, and the importance of the insights of the social sciences such as sociology with regard to the nature and construction of knowledge.

An interesting dimension to the politics of bioethical debates is the way in which despite the veneer of reason and civility, somehow or other non-disabled accounts continue to dominate. A particularly good example of this is found in the work of utilitarian Peter Singer, whose work has long been critiqued, and indeed protested against, by disability activists and scholars. In an early piece of work Peter Singer and Helga Kuhse ask the question Should the Baby Live?, answering this with an unequivocal “no” in a variety of circumstances for infants with severe disabilities (Singer & Kuhse, 1985Singer, P. and Kuhse, H. 1985. Should the Baby Live?: The Problem of Handicapped Infants, Oxford: Oxford University Press. [Google Scholar]). Such conclusions are hardly surprising given that the other part of the title of their early and influential book says it well, The Problem of Handicapped Infants. Instead of seeing the child with impairment as being in need of help and in terms of a social problem, the “handicapped” infant is understood in terms of an individual problem.

In response to this book and question, Alison Davis, a disability activist born with spina bifida, responds with an aptly named review in New Scientist, ‘Yes, the baby should live,’ arguing:

I was born with severe spina bifida, and am confined to a wheelchair as a result. Despite my disability and the gloomy predictions made by doctors at my birth, I am now leading a very full, happy and satisfying life by any standards. I am most definitely glad to be alive. (Davis, 1985Davis, A. 1985. Yes, the baby should live. New Scientist, 54 October 31[CSA] [Google Scholar], p. 54)

Years after this unremarked difference of views there have been so many more skirmishes in the wars over the disabled body. Yet, it is clear that Davis’ critique and alternative narration of disability suffers a continuing form of rejection. How many of these narrations are considered in detail as important insights or as knowledge gleaned from living in and with the phenomenon of impairment, other than as a mere footnote in a bioethics article? As a scholar who works in this area, I can say few.

Certainly, it may be argued that Alison Davis’ case is in many ways exceptional and fortunate. She was granted access to the necessary resources and life situations, including the necessary support for her family, which allowed her to lead what many would view as a successful life. As she goes on to write:

If I lived in a society where being in a wheelchair was no more remarkable than wearing glasses and if the community was completely accepting and accessible, my disability would not be an inconvenience and not much more than that. It is society which handicaps me, far more seriously and completely than the fact that I have spina bifida. (Davis, 1989Davis, A. 1989. From Where I Sit, London: Triangle. [Google Scholar], p. 19)

Her point, which bioethicists (Kuczewski, 2000) have acknowledged as pivotal, even while continually marginalized, is that the cultural and political understanding of the way in which disability is constituted within society is of central importance. Accordingly, it becomes meaningful to see that, for all the increasing presence of disability critiques, these are still seen as critiques and not as knowledge central to the discussion. Thus, the witness of people living with disability remains a form of rejected knowledge (See, for example: Wallis, 1979Wallis, R, ed. 1979. On the Margins of Science: The Social Construction of Rejected Knowledge, Keele, Staffordshire: University of Keele. [Google Scholar]; Richards, 1991Richards, E. 1991. Vitamin C and Cancer, London: MacMillan. [Google Scholar]; Goggin & Newell, 1997Goggin, G. and Newell, C. 1997. Residential consumers & ‘rejected knowledge’: Exploring and acknowledging the margins in broadband services in Australia. Telecommunications Policy, 21(4): 317–328.[CSA][CROSSREF][CrossRef], [Web of Science ®], [Google Scholar]).

III Ethics Committees and the Power of Constituting Knowledge

Before moving to the three examples which are the crux of this article, I would briefly like to examine the role of ethics committees generally, as these committees come to be so important in day to day questions of both clinical and research ethics, as well as government appointed expert panels. Within many countries, ethical issues, including issues important to people living with impairment, are being left to regulatory authorities or ethics committees. In my time as an ethicist, I have dealt with a variety of deliberations of ethics committees where people with disabilities and their organizations have consulted me about their concerns. Often this has been a situation of markedly differing worldviews where minorities are easily dismissed or over-ridden. Here we need to recognize the power dimensions of what goes on in the name of ethics. In many cases there can be perceptions of actual or possible conflict of interest on the part of committee members. Perceptions of conflict of interest go much further than merely direct financial interest.

Indeed, despite all the reforms to this system, a variety of deviants, such as those of us who live with disability, continue as other, outside that which is nice, normal and natural. As McNeill critiques the operation of Australia’s human research ethics committees:

There is a regrettable tendency for committees to rely on a ‘recipe book’ approach that reduces ethics to an application of rules to situations in a poorly considered and legalistic manner. In addition to this, institutional concerns and a bureaucratic perspective predominates. In Australia…people from the institution are in the majority on committees. The institutional members are also the most influential on Australian committees. The community members are taught, on the job, to review in the same manner as the institutional members. Few committees have any members with more than a short course in ethics. Committees exist as a part of the bureaucracy. They tend to function in terms of rules and to be obsessed with rules around informed consent. (McNeill, 2002, p. 115)

Thus, there is a sense that community members are not only taught about the policies and procedures, but also what that committee thinks of as morally relevant. Moreover, the policies and procedures are treated as if they are themselves morally neutral.

Indeed McNeill goes on to critique the role of clinical ethics committees, which have a lesser scope in Australian hospitals:

Ethics, as it is practised by these committees, is an ‘instrumental’ function rather than a process of critical reflection… The basic critique of ethics committees is that they are subservient to the power of the institution and not equipped to confront major issues of power. Yet it is issues of power around which many of the major ethical issues are focussed… There is a need for a critique within hospitals that is emancipatory and examines issues of social organisation and power, especially where there is evidence of conflict, abuse and coercion… There is a need for a critical questioning of hospital culture and the hospital enterprise from an ethical perspective. (McNeill, 2002, pp. 116–117)

Thus, there is the sense that the ethical perspective is what one brings to the table that can be fitted into policies and procedures of ethics committees, without critical reflection on the constituting power of the hospital or governing body to create these policies and procedures, and how the policies and procedures comes to constitute what counts as the ethical dimension.

Michael Cook responds to the way in which our system of biomedical ethical regulation is increasingly being used to determine social policy in an article provocatively entitled: “Designer Babies? Don’t Leave It to the Bureaucrats to Decide”:

I feel gobsmacked. It reminds me of the opening scene in The Hitch Hiker’s Guide to the Galaxy when a Vogon spaceship announces that the planet is about to be annihilated. “People of Earth, your attention, please. As you will no doubt be aware, plans for the redevelopment of personhood, family, and sexuality and morality require the building of a hyper spatial express route through your values, and regrettably they have been scheduled for demolition. An independent ethics committee has given its approval. The process will take slightly less than two of your Earth minutes. Thank you. ()

However farcical Cook’s account, it rings true to those who identify as living with disability. We have felt bowled over on a number of occasions by what is couched as “policies and procedures” constituted by groups in power to streamline the ethical reflective process. In reality these policies and procedures frame the ethical in a way that what we claim as central to the ethical dimension must be fitted to the frame, or stand as rejected, because articulated outside of the frame of the policies and procedures

IV Genetics and Deafness

No better example of the political nature of bioethics, and the disabling nature of it as a project, can be found than in the highly contested area of genetics and the difficult decisions associated with whether or not we should be allowed to screen for or against deafness.

In examining the debate to do with genetics we discover the hidden text associated with disability. On the one hand there have been the controversies to do with whether or not parents may choose to have a deaf child, and screen for or against such an attribute. In the United States recently, a deaf lesbian couple saw some controversy when they opted to choose to have a child with the gene for deafness by the use of reproductive technology. There was much commentary, including by bioethicists, especially in terms of the welfare of the child. Yet in such commentary there was little regard for the cultural context of ethical decisions. As the debate to do with the ethics of the cochlear implant has revealed as well, we may distinguish between the ethical views of the Deaf culture, those who use sign language as their first language, and deaf (hard of hearing) people who unlike Deaf people do identify in term of impairment and loss (See, for example, Lane, 1984; Komesaroff, 2003).

On the other hand, in Australia recently there has been a decision made by a government authority that it is reasonable for a couple to screen out deafness but not to screen for deafness. Here is how the Australian situation was reported:

A MELBOURNE couple have won the right to create a designer baby with perfect hearing… Victoria’s IVF regulator has ruled the couple’s doctors can screen three-day-old embryos to weed out those carrying the defect… The new policy states:

COUPLES cannot select babies with socially desirable characteristics such as eye or hair colour.

DOCTORS cannot agree to parents’ wishes to select embryos that have a genetic abnormality, such as deafness or dwarfism.

THE technique should only be used for conditions or abnormalities that will adversely affect quality of life in a significant way. (Kelly, 2002 )

We may here note the way in which increasingly any form of imperfection becomes a moral trump card which removes any claim to life. In what way is deafness or dwarfism an abnormality? Are there not examples of communities in which people who cannot hear and people of short stature thrive? Do not deaf communities organize themselves in such ways that they can flourish in the world? In these debates we discover the tacit, and not-so-tacit, values associated with the dominance of hearing, non-disabled world values. Further, what seems increasingly remarkable is the non-disabled bioethical commentators who are prepared to ignore the cultural and social dimension of bioethical questions articulated from the moral communities of people who use sign language as their first language and who cannot hear, as they pronounce judgments via seven-second sound bites in the media.

Within these debates disability becomes the anthesis of choice in a world which increasingly regards choice as the ultimate over-arching value. While the veneer of “reason” is applied to these debates, at the end of the day it comes down to a matter of power and whose worldview will rule. Overwhelmingly that worldview reinforces non-disabled values. In western countries which have the veneer of tolerance, disability is the step too far with regard to tolerance.

In this way, we start to understand genetics as an essential replicator of not just reductionist thought, but the entire worldview associated with modern medicine including of course the notion that there are good genes and bad genes (Newell, 1999a]). In making decisions about whether couples should be able to screen for or against deafness we encounter a decision that is not just about value neutral ethics, but inherently political, because it is framed and structured by the dominant community of the hearing public. In this way we glimpse the tacit taken-for-granted values inherent in dominant accounts of bioethics and biomedicine.

V Euthanasia

I now turn to the other extreme of life, the area of euthanasia. In the last couple of decades this has become an increasingly fraught topic within western society. An instance of the latest area of debate is around the recent film “Million Dollar Baby” and the critique by the international disability rights movement of a plot suggesting that it is desirable and positive, indeed noble, that someone should choose to die when they acquire disability. As Stephen Drake and Mary Johnson write:

To our knowledge, few critics have picked up on the films’ shared “right-to-die” message. Had the plot been racial or homophobic killing, however, we’d be hearing an outcry (if the movie ever got made at all). Why the silence? We think it’s because much of society believes it’s the right thing to do, to grant the wish of any severely disabled person who asks us to help them die. (Drake & Johnson, 2005 )

Certainly, we all wish for a “good death” which is what euthanasia means. What is remarkable in the debate regarding euthanasia is that with few exceptions disability has not figured as a worthy issue to be discussed in the debate. Largely unremarked in these debates is the fact that many of us live with the very conditions which are so feared in the euthanasia debate, especially incontinence.

No better example is found than from a highly reported media case, that of Bob Dent, the first person to die following the use of the protocols allowed for in the Northern Territory of Australia Rights of the Terminally Ill legislation. His case attracted worldwide attention. Mr. Dent decided that he would seek to die under the Northern Territory legislation using a computer-controlled machine designed and tended by his general practitioner, Dr. Philip Nitschke. After obtaining the required medical documentation and making other preparations he pressed a computer key which began an infusion of drugs. He became unconscious and died on 22 September 1996. Mr. Dent left a detailed statement dictated to his wife and signed the day before he died:

I have no wish for further experimentation by the palliative care people in their efforts to control my pain. My current program involves taking 30 tablets a day.

For months I have been on a roller coaster of pain made worse by the unwanted side-effect of the drugs.

Morphine causes constipation, laxatives taken work erratically, often resulting in loss of bowel control in the middle of the night. I have a rubber sheet on my bed, like a child who is not yet toilet trained.… My own pain is made worse by watching my wife suffering as she cares for me; bathing and drying me, cleaning up after my ‘accidents’ in the middle of the night, and watching my body fade away. If I were to keep a pet animal in the same condition I am in, I would be prosecuted. I have always been an active, outgoing person, and being unable to live a normal life causes much mental and psychological pain, which can never be relieved by medication.… (Anon, 1996, p. 71)

Central to Bob Dent’s narrative, and indicative of a failure to apply proper palliative medicine measures, incontinence is a silent—and silenced—widespread stigmatizing condition in the community. It is an everyday reality of the lives of many people with disabilities. I personally have wanted to die when I have lost continence.

Yet, within these debates the knowledge of people with disabilities is again rejected. For example, the insights offered by John Hockenberry in his remarkable book Declarations of Independence: War Zones and Wheelchairs, where he explores his own journey regarding disability. On the devastating topic of incontinence, he writes:

My mind told me that there would be no way to survive the humiliation of my body’s very public loss of control. Reality is quite different. My tragedy was simply one of the household chores that day at Yehuda’s House on the West Bank. I presumed that I would need a brain transplant; Yehuda proved that all I needed was some towels and a mop. (257)

Hockenberry also goes on in a counter cultural way to suggest:

Physical limits are a natural binding force in society, bringing people together. The arrogance of presuming that physical limits are somehow in opposition to life and to be hidden away as tragic. When people succeed ‘despite their physical limitations’, just as when crips ‘have the courage to go on despite their disability,’ they are celebrated by the group. But when people’s physical limits have become obvious, they expect to be shunned and left to their solitary self-hatred. It should be just the other way round. Separating oneself through personal triumph over some physical limitation is an act of isolation that repudiates the influences of family and community; openly acknowledging limitations binds and draws people together, as an emblem and reminder of just how similar we all are. (257)

Can we be more counter (Western) cultural, than to suggest that it is the isolation of the radically individual that is non-human, rather than the dependence of us humans upon one another? The choice to die is valorized, the choice to go that lonely route because of the loss of independence, as can be seen in popular culture (“Million Dollar Baby”), or in Dent’s letter. Yet, to choose to see how the social context of Yehuda’s House can so mundanely and routinely handle the seemingly overwhelming stigma of incontinence never enters into debates about disability and assisted dying.

In Hockenberry’s case, a matter-of-fact approach to many of the life feared circumstances, an approach of embrace rather than revulsion, means that we can live through, and indeed thrive and learn through, the very conditions that we “know” to be so appalling. In a society that denies death and disability, so many attributes of disability are feared. Yet, I would suggest that in rejecting such knowledge we also reject the wisdom that people with disabilities bring with regard to the way the dependencies of human nature are handled socially, and the importance of a social account of health, and of our projects of living and dying.

VI. Biotechnology

I now turn to the pinnacle of bioethical topics, biotechnology. It’s a topic on everyone’s lips at dinner, and we are assailed by news of breakthroughs everyday via media headlines. Throughout the western world the debate has particularly raged around the use of embryonic stem cells with significant controversy surrounding a predictable and entrenched problem—the status of the embryo. However, a central and yet marginal aspect of the debate to do with stem cells has been the status of disability. I have written elsewhere, with Gerard Goggin, in depth the 2002 Australian Embryonic Stem Cell debate (Goggin & Newell, 2004).

Many articles in the print media closely mirrored media releases from biotech interests, and were clearly framed by the dominant discourses about disability in which biotechnology was the star. Politicians even wept as they informed the Australian Parliament of the situation of their constituents with disability and how science would deliver them from their tragic existence. Yet within weeks of winning the day for stem cell research those same weeping politicians, who, through stem cell research, would save the lives of the disabled, were discussing “welfare reform” and the importance of removing people with disabilities off pensions. Strangely, they didn’t see any contradictions in their actions. Nor was the government widely questioned, especially in the mainstream media. Indeed it was yet another example of the way in which disability works as a central myth of power in our society. The most potent and evocative image of disability revolves around its status as tragedy and catastrophe.

This stereotype of tragic disability is used in a variety of biotech debates, and continues to be used across health, welfare, and other issues. It was used here to close down, rather than open up, debates about biotechnology. Indeed, one can identify a formula of how disability is represented in our culture and media that could be summarized in this way:

The tragic life of an individual or several devalued individuals is portrayed in a way designed to elicit maximum effect;

A technology is portrayed as delivering a person from disability, provided that society legalise, fund, or embrace such a solution;

Securing the technology means that disability has then been ‘dealt with’; after deploying such rhetoric there is to be no more appeal to emotion, and the solution lies in the rational pursuit of the technology identified in step 2 (effectively there is only one, inexorable logical step);

Disability as a political issue goes away, until next time it is needed in the powerful politics of media representation. (Goggin & Newell, 2005)

Two important points emerge here: First, the emotionally charged response evoked by the tragically disabled is used to move an agenda forward, then all appeal to narrative accounts counter to the political claims of the rhetorician are ruled out as too emotional. Second, there is a closing down of the muckiness of citizenship, and, instead, we find a not-so-subtle, promotion of simple, efficient, industrial solutions to the complex political problems of health.

Moreover, the mainstream print media coverage of the Australian 2002 stem cell debates shows that almost invariably people with disabilities were spoken about, rather than listened to as experts. In effect, people in desperate situations were encouraged to believe that a solution lay just around the corner, even publicly offering themselves up as “guinea pigs” for research, with very few voices critiquing the narrow way the terms of the debate were constructed.

Like a variety of biotech “solutions” the Australian stem cell debate was supposedly about delivering Australians with chronicity and disability from our afflictions. Yet, many people with disabilities face a great range of other pressing problems—and so are not necessarily fixated on a cure. For us the unacknowledged pressing realities of disability include: equipment schemes where we wait for a couple of years for a wheelchair, long waiting lists for access to appropriate health care, rationed attendant and respite care, and the largely ignored poverty of people living with chronic illness and disability.

We need to move our political and cultural institutions, including both bioethics and the media, to take a broader view. These important debates on biotechnology need an adequate balance in terms of cure and care. They also need to involve the people who are the subjects of biotechnology as experts in care and research about our bodies and lives. Important ethical questions include ensuring that the many structural and attitudinal problems faced by people with disability are attended to, with biotech as one plank in many ways of tackling disability. While I have articulated the rejected knowledge of disabled experience, and delineated how that experience is manipulated for the ends of a high tech medicine, I need to stress here that biotechnology and science in general have much to offer people with impairments. The pressing question is whether our future debates will be framed in terms of a gospel of progress in the name of our salvation, or in terms of mundane but vital care that allows us to thrive in society.

VII Beyond Bioethics as a Disablism

For all of the ways in which this article has critiqued dominant accounts of bioethics, it should not necessarily be understood as dismantling bioethics (Disabled Peoples’ International Europe, 2000 ). One of the major challenges for bioethics is to explore its political and power dimensions, and especially the norms which are utilized. Far from being negative, disability can become a particularly important aspect of bioethics. Certainly, the disability critique of bioethics can point to the structural and power dimensions of biomedicine and bioethics. And, there are a variety of scholars whose work has been pivotal for bioethics over the years. (See, for example; Shakespeare, 1995; 1998; 1999; Newell, 1996; 1999b; Asch, 1998; 2001 ). Still, there is more that should be done than the philosophical reflection of those of us living with impairment. In exploring the way in which disability is constituted within bioethics, we will perhaps find a way for the actual stories of people living with impairment—rather than the rhetoric of power brokers—to become central to debate about cure and care. Perhaps our expert knowledge will not just be philosophical discourse, but an articulation of the phenomenon of living with impairment.

In my experience disability is becoming acknowledged as an important topic for a variety of bioethics conferences around the world. Further, it would be unusual for a course in bioethics these days not to at least mention the alternative—if outrageous—perspective of people with disabilities for discussion. Still, as ever, of vital importance is how disability is framed within the wider bioethics discussion. It is not at all unusual for me to be told by students that they have encountered my work presented as an alternative view, but it is always presented in such a way as to foster and reinforce dominant western non-disabled norms.

As a scholar with disability, I must conclude that we remain in the climate where critique of disablism in bioethics is still needed. Yet rather than giving up on bioethics as a project, I want to suggest that it is the rejected knowledge of the disability experience that actually offers bioethics as a project enormous potential. Perhaps those of us who live with impairment will know that our views are being taken on board when disability stops being perceived solely as critique. For it is perhaps best to think of us humans primarily as dependent animals, rather than as rational autonomous wills asserting sovereignty over our bodies. We who live with impairment know this better than most.

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