People who experience disability or illness may get needed personal assistance from a variety of
sources, including paid attendants or nurses, friends, grown children, parents, or spouses/partners.
Narratives describing personal assistance, also sometimes called caregiving, tend to be very
contextual, illustrating the specific relationship between the parties involved. This paper focuses on
several narratives of hands-on support in the context of committed relationships between devoted
lovers, with or without marriage.
Literature is disproportionately full of disabled men whose support needs rob them of virility and
dignity, while turning their wives into willing or unwilling nursemaids. For example, journalist Richard M.
Cohen's memoir of living with multiple sclerosis suggests that, as his physical limitations and need for
help increased, his marriage gradually altered. Cohen writes:
Tumbling After: Pedaling Like Crazy after Life Goes Downhill. I suspect that the helpless-and-
emasculated-man/long-suffering-and-nurturing-woman dyad is largely a stereotype propped up by
literary convention (or vice versa). It seems that modern marriage is predicated on the strict
independence of both spouses – or at least a balanced division of labor, either egalitarian or
gendered. Disability may interfere with both standard gender role performance, and with strict
independence. The typical plot formula has the husband losing independence because he can no
longer do everything for himself, and the wife losing independence because she must take on the role
of primary caregiver.
This formula may reflect the real lived experiences of some couples, particularly those adjusting to a
disability which occurred after the relationship began. But stories shared within the disability
community reveal many other partnership models which integrate disability into the relationship fairly
comfortably. One nondisabled female friend, who is married to a physically disabled man, e-mailed me
the following in answer to some questions I asked while researching this paper: "I loathe it when
people call me a caregiver. Tim and I are equal partners in a marriage in which we both give and both
receive 'care' (and 'care' for each other) and both do things that assist the other" (Robertson).
Despite the reality of such negotiated and workable accommodations of disability within couples, the
bulk of literary narratives, both nonfiction and fiction, assume that disability afflicts relationships with
dependency, imbalance and sacrifice. But rather than take on the dispiriting task of cataloging and
critiquing these works, I am choosing to study two authors who offer more holistic portrayals of hands-
on assistance between intimate partners. (Both present couples in which the primary
assistant/caregiver is male, perhaps partially explaining their avoidance of the stereotypes described
above.) In Paul Monette's Borrowed Time: An AIDS Memoir, and Nancy Mairs' Waist-High in the World:
A Life Among the Nondisabled, the partners' physical support arrangements are characterized not by
the standard tropes of inequality and infantilism, but by vivid images of reciprocity and eroticism.
In her study of family caregiving memoirs, Ann Burack-Weiss notes that "couple care" situations
include "a history of reciprocity, along with a sexual history," and that authors "devote considerable
space to chronicling the earlier give-and-take that cemented their bond" (Burack-Weiss, 69; emphasis
mine). Implicit in Burack-Weiss’ paradigm is the assumption that disability and personal assistance are
incompatible with erotic devotion. However, as many couples will attest, neither the sexual connection
nor the commitment to mutuality necessarily vanish with the onset of illness or disability, though they
may change form. Both Paul Monette and Nancy Mairs illustrate the durability of their partnerships'
interdependence and eroticism, which may actually be enhanced by ongoing acts of personal
assistance.
Interdependence and Reciprocity
Monette writes primarily from the perspective of one providing assistance to a disabled and/or ill
partner; Mairs writes primarily from the perspective of a disabled person receiving such support from
a partner. I say "primarily" because both Monette and Mairs also have some first-hand knowledge of
the converse perspective: Even as he tended to his beloved Roger Hurwitz through a series of AIDS-
related illnesses in the final 19 months of life, Monette knew that he himself was HIV-positive and
might one day need similar support. (Some of Monette's later essays recount, though in far less
detail, the experience of receiving hands-on care from his last lover, Winston.) Likewise, Mairs'
husband George is able-bodied enough to provide her daily assistance with the things that she
cannot do for herself because of her multiple sclerosis; but George has had his own health problems,
including several bouts of cancer, which required Mairs to provide care in the form of loving concern,
medical advocacy, and moral support. In addition, Mairs feels a Catholic worker responsibility to serve
others however she can.
In their narratives, both Monette and Mairs thus chip away at the presumed dichotomies:
disabled/nondisabled, sick/healthy, helper/helpee, carer/cared-for. All bodies have the potential to be
compromised, to need assistance; and when that happens, enough remains for sharing, for helping in
some way, for giving back.
Paul Monette and Roger Hurwitz had forged a strong bond based on compatible personalities, mutual
respect, and a defiant determination to love in a world still hostile to gay relationships. When Hurwitz
voiced fear of the possible impact of his support needs on their relationship, Monette reaffirmed their
commitment: "Roger would say in anguish, 'I don't want to be an invalid, I don't want you to have to
take care of me.' And I would fire him with a speech about our interdependence, gripping his
shoulders as if I would fuse us into a unit" (194).
Their interdependence is illustrated in Monette's frequent use of the first-person plural when referring
to Hurwitz' struggles. Their mutuality is conveyed not through reciprocal actions, but through an
ongoing, sometimes nonverbal conversation which sustains them both. These two recurring motifs
appear in the following passage describing the beginning of one of Roger's medical crises: "I wasn't
sure how to keep him calm and get him to the hospital," Monette writes. "I wasn't sure what I would say
to the parents, who were due in five minutes. I squeezed his hand; he squeezed back." Even when
unable to speak, Roger could still give back to the relationship by returning his lover's hand squeeze.
"All I knew," Monette continues, "was that we were in terrible trouble" (Monette 240). When one is in
trouble, they both are.
In Mairs' view, participating in adult relationships obligates her to consider and act upon other
people's needs. She notes that she will never be the one to provide hands-on help to any of her loved
ones, a fact that is a "source of a grief inconsolable" (80). However, she writes, "I have to work out
right behaviors with whatever skills are left to me" (81). This sense of responsibility forces Mairs to
think creatively about how she can reciprocate for the assistance she receives.
One way she reciprocates is by accepting "with some grace" (82) the assistance she receives from
her husband and others, thus allowing them the sense of righteous accomplishment that she covets.
"Permitting myself to be taken care of is, in fact, one of the ways I can take care of others" (83). This
does not mean passively assuming the role of "intolerable burden... sucking in the resources of all
around me without replenishing them in kind" (76) – an attitude she rejects. Nor does it mean keeping
score of who does what for whom. Instead, Mairs offers this perspective on the help she gets from
George and others: "I view my crippled life less as a contest than as a project, in which others must
participate if it is to prosper" (71).
As writers, both Monette and Mairs identify words themselves as a form of support, acts of caring
communication. Mairs expresses honest, acute regret that she cannot prepare soup to feed the
hungry, but she asserts the value of what she is still able to do for others:
relationship. In this hospital scene, while massaging Roger's wracked body, Monette playfully but
insistently takes his quid pro quo in the form of what might be called "verbal care."
Sensuality and Eroticism
Contrary to stereotypes about repressed Catholics and sex-obsessed gay men, Mairs' narrative has
much more to say directly about the erotic than does Monette's. Mairs maintains that George's
supportive services have not dampened their ardor for each other. "I've heard it said that a sexual
relationship cannot be sustained when one partner provides routine care to the disabled other," she
writes, and then disputes this. "The routine of caregiving doesn't seem to diminish our attraction....
because we have grown so familiar with each other's physical realities, we love each other more
unabashedly and inventively as time goes on" (53). In fact, she notes, her personal assistance needs
entail frequent intimate contact which they both relish:
Mairs' basic daily living support, also brought Paul Monette and his partner together in situations of
remarkable intimacy. At one point, Monette received training necessary to swab the open wound in
Roger's damaged eyes. This "enormous responsibility," Monette writes, made him feel that he could at
last join Roger in physically resisting the effects of the disease – "Finally, something to do" (Monette,
263, emphasis in the original). He characterizes this clinical procedure in a tone both rapturous and
sensual: "There's something nearly sacred – a word I can't get the God out of, I know – about being a
wound dresser. To be that intimate with flesh and blood, so close to the body's ache to heal, you
learn how little to take for granted, defying death in the bargain. You are an instrument, and your
engine is concentration" (263).
The "constant... corporeal conversation" that Mairs describes is echoed in Monette's vignettes about
how he and Roger communicated almost unceasingly, and often physically rather than verbally. Even
on the day Roger died, Monette writes, they "had that queer and eloquent power of the eyelids, and
then he fell asleep" (339).
Intimate partnerships do not always grow and deepen as a result of routine physical care; indeed,
relationships often do not survive the onset of disease or disability. However, in these two nonfiction
books, the tasks involved in physically assisting a lover take on a profound and largely positive
significance. These books avoid traditional gendered models of caregiving, instead portraying
egalitarian relationships, one a heterosexual marriage and the other a same-sex partnership, in which
a male provides skilled, tender hands-on support to his beloved. These narratives attest not just to
the durability of the relationships they describe, but to a view of physical care needs as supporting
both the reciprocal and the sexual bond, and, ultimately, of being a natural part of many individuals’
and couples' lives.
Works Cited
Burack-Weiss, Ann. The Caregiver's Tale: Loss and Renewal in Memoirs of Family Life. New York:
Columbia University Press, 2006.
Cohen, Richard M. Blindsided: Lifting a Life Above Illness: A Reluctant Memoir. New York:
HarperCollins Publishers, 2004.
Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled. Boston: Beacon Press, 1996.
Monette, Paul. Borrowed Time: An AIDS Memoir. New York: Harcourt Brace & Company, 1988
Parker, Susan. Tumbling After: Pedaling Like Crazy after Life Goes Downhill. New York: Crown
Publishers, 2002.
Robertson, Amy. "Re: a question for you to contemplate." E-mail to the author. 13 Jan 2007.
sources, including paid attendants or nurses, friends, grown children, parents, or spouses/partners.
Narratives describing personal assistance, also sometimes called caregiving, tend to be very
contextual, illustrating the specific relationship between the parties involved. This paper focuses on
several narratives of hands-on support in the context of committed relationships between devoted
lovers, with or without marriage.
Literature is disproportionately full of disabled men whose support needs rob them of virility and
dignity, while turning their wives into willing or unwilling nursemaids. For example, journalist Richard M.
Cohen's memoir of living with multiple sclerosis suggests that, as his physical limitations and need for
help increased, his marriage gradually altered. Cohen writes:
Meredith must button my cuffs, sometimes put the key in the lock and turn it. My eyes do not work. She must find the pencil I have dropped, measure the pancake mix. "Your physical needs can be overwhelming," Meredith tells me. Wife to mother is a sad transition. (Cohen 208)Variations on this theme are quite common in recent disability memoirs, such as Susan Parker's
Tumbling After: Pedaling Like Crazy after Life Goes Downhill. I suspect that the helpless-and-
emasculated-man/long-suffering-and-nurturing-woman dyad is largely a stereotype propped up by
literary convention (or vice versa). It seems that modern marriage is predicated on the strict
independence of both spouses – or at least a balanced division of labor, either egalitarian or
gendered. Disability may interfere with both standard gender role performance, and with strict
independence. The typical plot formula has the husband losing independence because he can no
longer do everything for himself, and the wife losing independence because she must take on the role
of primary caregiver.
This formula may reflect the real lived experiences of some couples, particularly those adjusting to a
disability which occurred after the relationship began. But stories shared within the disability
community reveal many other partnership models which integrate disability into the relationship fairly
comfortably. One nondisabled female friend, who is married to a physically disabled man, e-mailed me
the following in answer to some questions I asked while researching this paper: "I loathe it when
people call me a caregiver. Tim and I are equal partners in a marriage in which we both give and both
receive 'care' (and 'care' for each other) and both do things that assist the other" (Robertson).
Despite the reality of such negotiated and workable accommodations of disability within couples, the
bulk of literary narratives, both nonfiction and fiction, assume that disability afflicts relationships with
dependency, imbalance and sacrifice. But rather than take on the dispiriting task of cataloging and
critiquing these works, I am choosing to study two authors who offer more holistic portrayals of hands-
on assistance between intimate partners. (Both present couples in which the primary
assistant/caregiver is male, perhaps partially explaining their avoidance of the stereotypes described
above.) In Paul Monette's Borrowed Time: An AIDS Memoir, and Nancy Mairs' Waist-High in the World:
A Life Among the Nondisabled, the partners' physical support arrangements are characterized not by
the standard tropes of inequality and infantilism, but by vivid images of reciprocity and eroticism.
In her study of family caregiving memoirs, Ann Burack-Weiss notes that "couple care" situations
include "a history of reciprocity, along with a sexual history," and that authors "devote considerable
space to chronicling the earlier give-and-take that cemented their bond" (Burack-Weiss, 69; emphasis
mine). Implicit in Burack-Weiss’ paradigm is the assumption that disability and personal assistance are
incompatible with erotic devotion. However, as many couples will attest, neither the sexual connection
nor the commitment to mutuality necessarily vanish with the onset of illness or disability, though they
may change form. Both Paul Monette and Nancy Mairs illustrate the durability of their partnerships'
interdependence and eroticism, which may actually be enhanced by ongoing acts of personal
assistance.
Interdependence and Reciprocity
Monette writes primarily from the perspective of one providing assistance to a disabled and/or ill
partner; Mairs writes primarily from the perspective of a disabled person receiving such support from
a partner. I say "primarily" because both Monette and Mairs also have some first-hand knowledge of
the converse perspective: Even as he tended to his beloved Roger Hurwitz through a series of AIDS-
related illnesses in the final 19 months of life, Monette knew that he himself was HIV-positive and
might one day need similar support. (Some of Monette's later essays recount, though in far less
detail, the experience of receiving hands-on care from his last lover, Winston.) Likewise, Mairs'
husband George is able-bodied enough to provide her daily assistance with the things that she
cannot do for herself because of her multiple sclerosis; but George has had his own health problems,
including several bouts of cancer, which required Mairs to provide care in the form of loving concern,
medical advocacy, and moral support. In addition, Mairs feels a Catholic worker responsibility to serve
others however she can.
In their narratives, both Monette and Mairs thus chip away at the presumed dichotomies:
disabled/nondisabled, sick/healthy, helper/helpee, carer/cared-for. All bodies have the potential to be
compromised, to need assistance; and when that happens, enough remains for sharing, for helping in
some way, for giving back.
Paul Monette and Roger Hurwitz had forged a strong bond based on compatible personalities, mutual
respect, and a defiant determination to love in a world still hostile to gay relationships. When Hurwitz
voiced fear of the possible impact of his support needs on their relationship, Monette reaffirmed their
commitment: "Roger would say in anguish, 'I don't want to be an invalid, I don't want you to have to
take care of me.' And I would fire him with a speech about our interdependence, gripping his
shoulders as if I would fuse us into a unit" (194).
Their interdependence is illustrated in Monette's frequent use of the first-person plural when referring
to Hurwitz' struggles. Their mutuality is conveyed not through reciprocal actions, but through an
ongoing, sometimes nonverbal conversation which sustains them both. These two recurring motifs
appear in the following passage describing the beginning of one of Roger's medical crises: "I wasn't
sure how to keep him calm and get him to the hospital," Monette writes. "I wasn't sure what I would say
to the parents, who were due in five minutes. I squeezed his hand; he squeezed back." Even when
unable to speak, Roger could still give back to the relationship by returning his lover's hand squeeze.
"All I knew," Monette continues, "was that we were in terrible trouble" (Monette 240). When one is in
trouble, they both are.
In Mairs' view, participating in adult relationships obligates her to consider and act upon other
people's needs. She notes that she will never be the one to provide hands-on help to any of her loved
ones, a fact that is a "source of a grief inconsolable" (80). However, she writes, "I have to work out
right behaviors with whatever skills are left to me" (81). This sense of responsibility forces Mairs to
think creatively about how she can reciprocate for the assistance she receives.
One way she reciprocates is by accepting "with some grace" (82) the assistance she receives from
her husband and others, thus allowing them the sense of righteous accomplishment that she covets.
"Permitting myself to be taken care of is, in fact, one of the ways I can take care of others" (83). This
does not mean passively assuming the role of "intolerable burden... sucking in the resources of all
around me without replenishing them in kind" (76) – an attitude she rejects. Nor does it mean keeping
score of who does what for whom. Instead, Mairs offers this perspective on the help she gets from
George and others: "I view my crippled life less as a contest than as a project, in which others must
participate if it is to prosper" (71).
As writers, both Monette and Mairs identify words themselves as a form of support, acts of caring
communication. Mairs expresses honest, acute regret that she cannot prepare soup to feed the
hungry, but she asserts the value of what she is still able to do for others:
Since most physical acts are denied me, my efforts must take largely intellectual and emotional form. I've become a closer and more patient listener, and I spend time giving information, counsel, and encouragement.... I also express appreciation and approval and affection much more readily. (83-84)While Monette tends to Hurwitz' physical needs, he emphasizes the give-and-take nature of their
relationship. In this hospital scene, while massaging Roger's wracked body, Monette playfully but
insistently takes his quid pro quo in the form of what might be called "verbal care."
I'd get tired after five minutes, bored more than anything, since the massage would always put him to sleep. But then he'd stir and complain, "Don't stop." That night I said, "I'll keep doing it if you tell me how much you love me." So I got him to purr endearments at me – "I love you so much, you're my best friend" – while I worked his muscles. If he was quiet too long I'd tap him and say, "More." (Monette 211)Which brings us to eroticism.
Sensuality and Eroticism
Contrary to stereotypes about repressed Catholics and sex-obsessed gay men, Mairs' narrative has
much more to say directly about the erotic than does Monette's. Mairs maintains that George's
supportive services have not dampened their ardor for each other. "I've heard it said that a sexual
relationship cannot be sustained when one partner provides routine care to the disabled other," she
writes, and then disputes this. "The routine of caregiving doesn't seem to diminish our attraction....
because we have grown so familiar with each other's physical realities, we love each other more
unabashedly and inventively as time goes on" (53). In fact, she notes, her personal assistance needs
entail frequent intimate contact which they both relish:
Even our most mundane interactions bear an erotic charge. I don't mean that we pant and grope every time he tugs my sweater over my head or adjusts my bedclothes.... But he may stroke my neck when he brings me a cup of coffee.... We carry on a constant, often hardly conscious corporeal conversation regardless of our other pursuits and preoccupations. Without my disability to throw us together thus habitually, our bodies might spend their days racing separately from one activity to another, coming across each other only in time to tumble into sleep. (54)Roger Hurwitz' care needs, which at times were far more involved and medical in nature than Nancy
Mairs' basic daily living support, also brought Paul Monette and his partner together in situations of
remarkable intimacy. At one point, Monette received training necessary to swab the open wound in
Roger's damaged eyes. This "enormous responsibility," Monette writes, made him feel that he could at
last join Roger in physically resisting the effects of the disease – "Finally, something to do" (Monette,
263, emphasis in the original). He characterizes this clinical procedure in a tone both rapturous and
sensual: "There's something nearly sacred – a word I can't get the God out of, I know – about being a
wound dresser. To be that intimate with flesh and blood, so close to the body's ache to heal, you
learn how little to take for granted, defying death in the bargain. You are an instrument, and your
engine is concentration" (263).
The "constant... corporeal conversation" that Mairs describes is echoed in Monette's vignettes about
how he and Roger communicated almost unceasingly, and often physically rather than verbally. Even
on the day Roger died, Monette writes, they "had that queer and eloquent power of the eyelids, and
then he fell asleep" (339).
Intimate partnerships do not always grow and deepen as a result of routine physical care; indeed,
relationships often do not survive the onset of disease or disability. However, in these two nonfiction
books, the tasks involved in physically assisting a lover take on a profound and largely positive
significance. These books avoid traditional gendered models of caregiving, instead portraying
egalitarian relationships, one a heterosexual marriage and the other a same-sex partnership, in which
a male provides skilled, tender hands-on support to his beloved. These narratives attest not just to
the durability of the relationships they describe, but to a view of physical care needs as supporting
both the reciprocal and the sexual bond, and, ultimately, of being a natural part of many individuals’
and couples' lives.
Works Cited
Burack-Weiss, Ann. The Caregiver's Tale: Loss and Renewal in Memoirs of Family Life. New York:
Columbia University Press, 2006.
Cohen, Richard M. Blindsided: Lifting a Life Above Illness: A Reluctant Memoir. New York:
HarperCollins Publishers, 2004.
Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled. Boston: Beacon Press, 1996.
Monette, Paul. Borrowed Time: An AIDS Memoir. New York: Harcourt Brace & Company, 1988
Parker, Susan. Tumbling After: Pedaling Like Crazy after Life Goes Downhill. New York: Crown
Publishers, 2002.
Robertson, Amy. "Re: a question for you to contemplate." E-mail to the author. 13 Jan 2007.
| In Sickness and in Health: Paul Monette's and Nancy Mairs' Narratives of Lovers Providing Hands-On Help By Laura Hershey |
 |  |
All files © Copyright 2009 The Sylvan Echo