For the last 37 years, I have
routinely been asked, “Can you have sex?”
I have thought a great deal about why bipedal
people feel free to ask me if I can have sex.
There is no doubt that, as a paralyzed man, my
body is perceived as freakish. Despite 40 years of progressive legislation
designed to empower people with a disability, negative stereotypes stubbornly
cling to people with a disability.
of those stereotypes involves sexuality. People with a disability are viewed as
having spoiled identities and bodies.
are perceived to be inferior, physically deviant, and asexual. Despite the
development of a substantial literature on sex and disability, not much has
changed since Tom Shakespeare published “The Sexual Politics of Disability” twenty
years ago. Disability and sexuality are still treated as incongruous, if not
The intersection of disability
and sexuality is not my area of specialization. Indeed, I rarely write about
sex. I have always preferred to have sex than to write about it.
The intersection of disability and sexuality
has been at the forefront of my mind recently, however, because last year a
controversy erupted over the publication of an essay I wrote in Atrium, The
Report of the Northwestern Medical Humanities and Bioethics Program.
essay, entitled “Head Nurses,” I wrote about
the bad girls of rehabilitation identified as
the “dick police” and “head nurses.”
The “dick police” were
young nurses who taught men how to catheterize themselves. “Head nurses” were
young women who performed oral sex on
certain hard working patients, if they so desired. Shortly before leaving
rehabilitation, I received a visit from a “head nurse” who performed oral
I received that visit because we
were close, and because she knew that, despite repeated requests, I had been
given no information about sex post injury.
My essay appeared in a
special issue of Atrium
, the theme of which was “Bad Girls,” guest-edited
by Alice Dreger, a historian of anatomy. Prior to publication, I worried that
my essay might upset people with limited knowledge of the gritty reality that
people with a disability routinely experience.
I forged ahead, though, because, as I wrote in the essay: “my experience
constitutes a lost part of medical history.”
What I never imagined was that
my essay would prompt an act of blatant
censorship by Northwestern University. Shortly after the “Bad Girls”
issue was released, Northwestern University Feinberg School of Medicine Dean
and Vice President of Medical Affairs Eric Neilson objected to the publication
of my essay. Absurdly, my essay was characterized as “pornographic.”
In response to this criticism, Atrium’s
editor-in-chief, Katie Watson, a faculty member in the Northwestern Medical
Humanities and Bioethics Program, decided to take the entire journal off line. She
told Dreger that she would not allow just one issue to be singled out for “special”
But Watson made no public
announcement that Atrium
had been taken off line. Now, 14 months later, Atrium
is back online as of May 19, 2015.
This is an important though belated
action and in no way diminishes the fact the Bad Girls issue of Atrium was
censored for over a year. During the 14 moths Atrium was censored Alice Dreger,
who repeatedly objected to the censorship, made the whole “Bad Girls” issue
available at her personal website: http://alicedreger.com/Bad_Girls
I will return to the core issue of censorship
shortly, but first some additional background is necessary. Prior to
publication, I asked people I respect to provide comments.
A good friend and a long-time-paralyzed guy
like me read a draft of my essay. When done, he burst out laughing and told me,
“I think some people are going to freak.” More than one colleague read
a draft of my essay and commented “Are you
sure you want to publish this? Parts of this are troubling.”
I clearly underestimated the fierce response
my essay would prompt. In retrospect I should have discussed the history of
nursing and feminism. I did not do so because I felt it was beyond the scope of
While most people
liked what I wrote, a small number of scholars sent me scathing email. Two
Catholic bioethicists deemed me a misogynist and a liar. They published a blog
called “Blowing Up Bioethics: A Response to Atrium’s Bad Girls and Head Nurses.”
In this essay, they charged that “the
Head Nurses article perpetuates views of women, sexuality, and professionalism
that best serve male power, rather than the power of women.” They argued that
“the ‘bad girl’ theme of the Atrium issue allowed for an article that imported
expectations of female subservience.”
Initially, I was
taken aback by this gross mischaracterization of my essay, but the more I
pondered the vehemence of their reaction, the more I thought of an article I had
recently read in the Atlantic
entitled “Disabled and Fighting for a Sex
Life” by Katharine Quarmby. Link:
Quarmby maintained: “Disabled people’s sexuality has been suppressed, exploited and, at
times, destroyed over many centuries. It has been seen as suspect, set apart,
and different from the sexuality of non-disabled people.” Because I had honestly related my experience
in “Head Nurses,” I was charged with being a threat because I refused to set
aside my sexuality and candidly acknowledged
my sexual desire and pleasure. In so doing, I not only asserted my humanity,
but undermined the myth that people with disabilities, especially paralyzed
men, are asexual or unable to satisfy their sexual needs.
My essay is not “a worn-out and objectifying
trope” but a forthright step in a decades’ long effort to reject the negative
assumptions about disability and sexuality. Progress has been made, but as
Shakespeare demonstrated twenty years ago, the interaction of disability and
sexuality is tied to some powerful and negative metaphors. The trope we should
be rejecting is not the allegedly “pornographic” and “misogynistic” oral sex
that in fact took place in a hospital decades ago between two consenting and
mutually-affectionate adults, but rather the trope found in D. H. Lawrence’s Lady
Chatterly’s Lover, in which Lady Chatterly can be satisfied only by a virile gamekeeper
because her husband was paralyzed in the war.
The physical, emotional, and social abuse of
persons with disabilities, and the denial of our sexuality, form a disgraceful
and disturbing history that is not well known.
Few know about “the ugly laws” that restricted the movement and social
integration of persons with disabilities, and even fewer know about the
devastating consequences of the Eugenics movement that legalized the forced
sterilization of persons with disabilities.
It was not until the 1960s, when disabled veterans returned paralyzed
from the Vietnam War, that the general public was exposed to the idea of
disability rights. Building on 40 years
of legislation designed to empower people with a disability, I was among the
first generation of people in the late 1970s with a disability who expected to
resume a typical life post disabling injury. That typical life included sex,
family, education, and employment.
Tuppy Owens, a sex therapist and author of Supporting
Disabled People with Their Sexual Lives, believes that people with a
disability must fight for their “sexual citizenship.” But sexual politics is not yet a significant
part of the disability rights movement. It should be. The fact is that people with disabilities
encounter discrimination on multiple fronts, and that includes barriers against
being empowered to explore their sexuality. Taking down the “Bad Girls” issue
of Atrium, and treating my essay as if it was pornographic or misogynist,
is an act of censorship that reinforces the social isolation of persons with
disabilities and falsely affirms the inability of persons with disabilities to
establish intimate relationships. It is
an act that is completely incompatible with the truth and with the central
tenets of academic freedom. Although the censorship ended after 14 months it remains
a shameful act that should embarrass those at Northwestern University who
purport to value that freedom.
In terms of sexuality,
not much has changed with regard to the sexual options open to people with
disabilities. The denial of one’s sexual
identity and of the physical pleasure sex provides is potentially devastating
to any individual. My essay “Head Nurse” unsettles conventional social norms.
I, as a paralyzed man, am not supposed to be sexual, and I certainly am not
expected to acknowledge receiving sexual pleasure in the form of oral sex. To
deny the realities I wrote about in my essay is to deny the truth – and it is a
truth people should know.
Katie Watson, in an email of April 2,
referred to the controversy my essay created as the “Atrium drama.” But
there is more than just the denial of sexuality and disability at play here. In
recent years, university medical centers, like the one at Northwestern, have
too often been consumed by corporate branding. Their self-presentation focuses
less on the realities of patient care than on the projection of feel-good
stories meant to attract well-insured and paying customers.
Watson admitted that this concern with “branding”
played a significant role in Neilson’s reaction to my essay:
Our administration views Atrium as a “Northwestern
Medicine” publication. I disagree with that characterization (it’s a med school
publication) but just as the “Bad Girls” issue came out the med school &
hospital entered a branding agreement to have a single identity that raised new
sensitivities. As a result, they were very worried that publication of your
article in what was newly considered a NM publication might suggest our
institution/hospital does not value nurses, or that it condoned sexual
relationships between patients and providers in the hospital. I strongly
disagreed with their assessment, and I took every single back issue of Atrium
down in an act of solidarity, because I refused to single out any one author or
Watson went on to explain Atrium
could not go on as it once did. Watson felt bad and asked for a favor:
Until this ridiculous situation is remedied,
when people click on your article title (I’m reconfiguring format so articles
can be accessed individually) would it be okay with you if they got a message
with your email saying to contact the author directly for a copy? (And we’d send you a pdf of your article
individually if you don’t already have that.) This goes without saying, but as
a private citizen with free speech rights protected by the First Amendment you
can respond to those requests however you like.
I was horrified by Katie’s message. This was censorship at the bequest of a
desire to brand a hospital. I replied:
Thank you so much for your explanation re. Atrium.
Needless to say, and for the same reasons that you state, this is unacceptable.
However, to help you out of your bind, I will agree with your
"solution" as a tentative step while formal measures are taken to
protest the University's censorship of my article. But I have one important
qualification: Where my article would ordinarily appear, in addition to the
reference to my email, the site must state: "This article has officially
been censored by Northwestern University. Therefore, anyone wishing to read it
should email me at email@example.com"
My experience with Atrium and
the censorship of my essay and other scholars who made contributions to the
issue edited by Dreger makes me long for the old days. As I wrote in my Atrium
essay, “I am not suggesting we return to our primitive past,” but when corporate
branding distorts and hides the truth it presents far more problematic ethical conundrums
than my decades’ old experience.
Obviously, sexual relations between patients and health care
professionals is inappropriate. I accept
this as a given. What I object to even more, though, are poseurs in white coats
who are dedicated to branding medical institutions by censoring legitimate
scholarship and attempting to erase the lives and experiences that they deem embarrassing.