Deaf Mothers and Reproductive Healthcare:
Identifying Inequalities and Documenting Experiences
Emily Jane Steinberg, MA
Presented at the Wellington Park Hotel, Belfast
Conference on Equality and Social Inclusion in the 21st Century
1 February, 2006
Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
introduction
Tom Humphries, a Deaf American scholar working in California, writes, “Who owns the
Deaf person’s body?… Do doctors and other medical intervention personnel… own it more than
Deaf people themselves? … Individual Deaf people on reaching adulthood sometimes manage to
take control sufficiently to preserve their bodies in an image of wholeness, and insofar as they
are able to do this, they have hope of attaining and maintaining physical well-being. But do
others even know that ownership of Deaf people’s bodies is an issue?” (in Bragg, 2001, p. 357).
If we change Humphries’ ‘person’ to ‘woman,’ and place that woman in Ireland, we
arrive at the crux of the issue before us now: understanding the experience of Deaf mothers in
Ireland, as they negotiate access to maternity care. In short, then, the question guiding my
current project is, who owns a Deaf Irish woman’s body? This paper is the outgrowth of my
current undertaking, a documentary and qualitative research project within the Irish Deaf
community. I arrived in Ireland in September of 2005 to begin a ten-month stay in Dublin,
during which I would interview Irish Deaf mothers and create a report summarizing the themes
of their experiences with maternity care. At present I have completed several in-depth
interviews (I am hoping to complete approximately 15, in total), as well as many informal
discussions with those living and working in the Deaf community. By interviewing Deaf
mothers in Dublin about their experiences interacting with the reproductive healthcare system, I
am working to identify themes of oppression as they are being lived. Once documented, the
commonalities in Deaf Irish mothers’ experiences can be used as the ground for further work in
rectifying the structural inequalities that currently function to deny Deaf mothers access to
healthcare. Hopefully the outcome of this project will be a contribution towards understanding
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
the question, ‘who owns a Deaf Irish woman’s body?,’ and also understanding why that’s a
question that we even need to ask.
But perhaps this is more of a koan than a straightforward query, for it is already clear that
no simple answer exists. Rather, exploring this question begins to illuminate a complex of issues
at stake in the common quest for equality in society today; issues of gender equality, educational
equality, and the treatment by those in power of cultural and linguistic minorities.
Simultaneously, whether the Deaf community or individual chooses to assume a label of
‘disability’ or not, the discourses, both medical and social, on disability must also be considered,
as in the eyes of the law and many doctors, both in Ireland and abroad, deafness is quite
explicitly considered a disability. (For examples of legislative demarcation of deafness as a
disability, see Ireland’s Equal Status Act, 2000, or, from the United States, the Americans with
Disabilities Act, 1990.)
In order to properly engage with the experiences of Deaf Irish mothers as they have told
them to me, it is necessary to first gain an understanding of the histories of power and control
that converge in the body of a Deaf mother in hospital. Throughout the history of western
science and education, deafness has been pathologized and subject to the medical gaze in the
field of audiology. As we will see, attempts have been made to eradicate the ‘affliction’ and also
the ‘symptoms’ of it. Foremost amongst these methods, both internationally and in Ireland, has
been the prohibition of signed languages in schools. Female bodies, especially pregnant and
laboring bodies, have likewise been subject to the invasive and proscriptive ideologies of
obstetric science. Ironically enough, as Jo Murphy-Lawless demonstrates, Dublin maternity
hospitals played a key role in the worldwide advancements of obstetrics. (Murphy-Lawless,
1998).
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I will not attempt a complete history of either science or deaf education. That is far
beyond the scope of this paper, and quite a severe departure from the present issue of Deaf
mothers in Ireland today. But by highlighting some critical moments and emerging themes in the
histories of deaf education and how women and the deaf have been treated by science – histories
of power and control, histories sometimes separate but often overlapping – I hope to better frame
my current project within the power lines and converging dynamics of the past. From here I will
be able to then present the findings of my research within the Irish Deaf community thus far, in
light of both these ideological legacies, and more recent work related to maternity, disability
experience, and the Deaf community in Ireland. First I turn to the early days of deaf education,
in Paris, France, in the late 1700s.
pathologizing the deaf body
Of course, the late 18th century wasn’t the first time that somebody attempted to educate a
deaf child. But the previous methods of instruction used were almost universally informed by
the Platonic equation, language equals speech. (As Deaf Studies scholars love to point out, the
word ‘language’ itself has etymologically excluded manual languages from inclusion: it has its
roots in ‘lingua,’ the Latin word for tongue.) Instructors that did incorporate signs into their
pedagogy did so in isolation, and in private tutoring environments. (see Lane and Philip 1984;
Lane, 1984; Rée, 1999). Sign languages weren’t recognized as actual natural languages in their
own right until the work of William J. Stokoe in the 1960s at Gallaudet University, in
Washington, DC (Stokoe, 1960). Therefore, the founding of the National Institute for DeafMutes in Paris in 1760, with its signing curriculum, was a sharp departure from previous
methods, and is cited as the origin of deaf education using the manual (signing) method. The
institute in Paris, headed by the Abee de L’Epee, was not only the birthplace for signing tutelage,
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
however. It is also the site of medicine’s grand entry into the education of the deaf, and all the
complications that entailed.
Jean-Marc Gaspard Itard was appointed the resident physician at the National Institute for
Deaf-Mutes in Paris in 1800, by L’Epee’s successor, Sicard. Effectively, this marks the
beginning of the pathologizing tendencies of deaf education in the institutional setting, as at this
moment, the position of a physician with rather aggressive views on deafness becomes a normal
installment in the school, and education and science become eager bed-partners. Itard’s
experiments, painful and physically destructive procedures designed to alleviate deafness, were
performed on captive subjects, the many deaf students of the school. Over the years almost
every pupil in the institute was subjected to his ruthless quest for normalization and the
restoration of hearing.
In 1801 he undertook instruction (and detailed documentation of said instruction) of the
wild boy of Aveyron, a ‘wild child,’ without home, family, or language, who had been captured
in the woods of France. The subsequent series of training and trials, all painstakingly
documented, along with the later work of Itard on other deaf pupils at the institute, laid the
groundwork for the fields of audiology1. Perhaps even more salient in regard to the issue at
hand, Itard’s practice of recording patient data was also the birth of the case history – the file of
information and ‘facts’ that delimits the existence of any student, patient, or criminal. Itard
considered his study and observation of the ‘wild child,’ who he named Victor (and in this case,
the performative power of naming and labeling can also be invoked in apprehending the import
of his action to bestow a name, hence, identity, on the boy) to be an exercise in “both diagnosis
and prescription” (Lane, 1976, p. 269).
1
It also paved the way for special education, and ironically, alternative pedagogical methods such as the Montessori
schools. See Lane 1976 and Montessori 1912.
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
Not only did Itard never succeed in converting Victor into a ‘normal’ child, (Victor lived
out his days under the solitary watch of Itard’s housekeeper), but his objective observations and
diagnoses consistently failed to see what strengths the boy did possess, choosing instead to judge
him by his inability to matriculate into Parisian life. He was ‘unseeing’ and ‘unresponsive’ in
Paris, whereas in the woods he was agile and survived on his own. Clearly there is quite a
distinction between his own lived experience and abilities, and the ‘facts’ on file about him.
Victor himself was not deaf. Placing him under the care of Itard, resident physician at the deaf
institute, served not only to bring about the birth of the case history, as noted above, but also to
align a litany of behavioral and educational diagnoses and judgments attached to him, with deaf
children as well. We will see this pattern emerge again, when looking at the dynamics between
obstetric science and women, and the discourses of medicine and disability, and the Deaf
community.
These tensions are brought into stark relief when compared with the institutions (namely
asylums and prisons) of Itard’s contemporaries. These other structures mirror and inform the
emerging ideology of control and normalization present in deaf institutes, both those using the
manual curriculum, like Paris (originally) and the early institutes in the United States, and the
oral schools such as those in Britain and later, Ireland. Deaf institutes provided the primary
means of educating the deaf, and until the advent of mainstreaming, were mainly residential
environments. As such, all aspects of the children’s lives were carefully monitored and
regulated, effectively aiming to tame and reign in the students, creating what Foucault has
termed ‘docile bodies.’ At this point, authority, be it an administrator, prison guard, doctor, or
teacher, begins to take new shape.
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Foucault writes in “The Birth of the Asylum” of the medical ‘personality’ that Tuke and
Pinel brought into the asylums, stating “they did not introduce science, but a personality, whose
powers borrowed from science only their disguise… These powers, by their nature, were of a
moral and social order” (Rabinow, 1984, p. 160). The power of the medical personage was
rooted in observation and recording, in short, the wielding of power/knowledge. (Think of Itard’s
‘objective’ role in describing the wild boy.) With Pinel’s idea to “liberate the insane” in the
asylums, external chains were unlocked, and internal ones cultivated instead, their roots being
found now in morality and self-policing. The medical personage, operating on the borrowed
prestige of the authority of God the Father, or alternatively, the authority of medicine, made the
asylum (and thereafter, the deaf institute), for the first time, a medical space. Rather than being a
dumping ground for all of society’s unseemly, it was ordered, categorized, and guarded by the
medical personage, whose job it was not only to administer labels and admission, but to study
and (ostensibly) cure the deviant and, later, the ill. Health and pathology, normality and
abnormality, became observable and empirical categories. The apotheosis of the medical
personage ensured that dialogue between patient and doctor be virtually impossible. On a much
more immediate level, this impossibility is now being played out when Deaf mothers attempt to
dialogue with their nurses or midwives in hospital, or their GPs.
What we see emerging here is a tautological hierarchy of power. Foucault writes, “the
human body was entering a machinery of power that explores it, breaks it down, and rearranges
it” (Rabinow, 1984, p. 182). In other words, this new type of discipline did not just aid in
regulation and completion of tasks, it mechanized the body and its functions and output such that
the individual was both created and destroyed by it. Audiological status is still a gatekeeper,
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
now, into the Deaf-World,2 or at least, its schools and events. For example, Gallaudet University
and the sporting event the Deaflympics demand an audiogram proving deafness in order to enroll
and participate. I will not engage fully with the complexities of this cultural-medical overlap,
but mention it because it appears time and again. The identities of the Deaf community, both
those self-owned and those foisted upon it by outsiders, are beyond the scope of this paper.
However the battles for ownership and understanding of precisely what it means to be Deaf do
return us to the original query, who owns a Deaf woman’s body?
The oralist agenda that fueled the work of Itard, Alexander Graham Bell, the Braidwoods,
the religious orders that ran the Irish Deaf schools, and many others, is premised on an
understanding of deafness as an illness to be remedied and/or overcome, and the use of a Sign
Language as a habit to be subdued. Without delving too deeply into the philosophical
underpinnings of oralism - or manualism - (many books do this far better than I. See Burch, 2002
or Baynton, 1996, which illuminate the debates in the U.S.), it must be noted that this point of
view stands in contrast to the Deaf cultural view (supported by linguistic research) that Sign
Languages are natural languages and therefore the most natural means of communicating within
Deaf spheres. By extension, it follows that a signing environment would provide the most access
to information in instruction as well. This debate has taken many forms on many continents,
influencing the direction of deaf education in ways that are impossible to ignore. (For a more
detailed examination of the Irish system of Deaf education, see Crean, 1997). From here it is not
a big jump to understand the threads of paternalism and power struggles then, that runs through
the history of deaf education, and then to note the construction of normalcy, as a concept, the
advent of statistics, and more and more exacting methods of measuring society’s strengths and
2
See Lane, Hoffmeister and Bahan, 1996 for a more complete discussion of the term, Deaf-World, and Deaf culture
in general. Also Ladd, 2003.
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ills (Kevles, 1985). At this point we turn from the asylum and deaf institutes and towards
obstetric and gynecological science, wherein similar themes of docile bodies and the all-seeing
medical gaze can be found.
pathologizing the female and mothering body
If the Deaf-World has Itard, women have J. Marion Sims. Sims, the American doctor
dubbed by many the ‘Father of Gynecology,’ worked in the antebellum South, performing
experimental vaginal surgeries on un-anesthetized slave women. His invention of the speculum
brought the medical gaze literally inside woman’s body, where it had never ventured before, and
laid the groundwork for a new era of women’s medicine (Kapsalis, 1997). Sims’ work occupies
contested ground both within the history of medicine, where he has been both lauded and
vilified, and within the physical ground of the women he worked on as well. Slaves, being
considered the property of their owners, were not required or able to consent to such
experimental procedures, which often took place before an audience. Neither were his later
subjects, poor Irish immigrant women coming to his Women’s Hospital in New York City.
His work did not keep him on the American continent however; he traveled extensively
in Europe during the American Civil War, lecturing, among other places, in Dublin. Dublin’s
first maternity hospital, the Rotunda, traces its roots back to before Sims’ time, to 1745 (MurphyLawless, 1998). The role that Dublin hospitals played in establishing obstetric science over the
next centuries was a leading one. Many of the preconceptions and operating assumptions of
doctors working now have their roots deep in the very power dynamics of obstetric science and
its history.
As Jo Murphy-Lawless cogently argues, following a critique similar to Foucault’s,
discipline in hospitals and clinics was a symptom of the attempts on the part of medical personas
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
and administrators to control the untidiness and unpredictability of nature itself, to improve upon
what were seen as nature’s defects or weaknesses, and to provide a working and reliable model
for the body’s functions. Questioning their own roles in the causes spread of illness within the
hospitals, such as the many outbreaks of puerperal fever in Dublin hospitals, was rare. The
position of the doctor was already firm; medical authority functioned as a closed circuit.
In The Birth of the Clinic (1973), Foucault looks at the emergence of the clinic as a
structural unit in the wake of the French Revolution. The construction of medical agency then,
and the debates over medical instruction and medical practice, laid the groundwork for how it
functions now, rendering laboring mothers as little more than objects in the medical
environment. Foucault sees the clinic, and clinical gaze, shifting into an “anatomo-clinic” (p.
137), which looks at all levels of the body and not only the surface. There is a chronology to this
type of diagnosis and pathology, because it is only at the point of dissection and autopsy that the
internal lesions (read: proof of external symptoms) and therefore proof of the doctors’
assumptions, can be seen. This deferral of diagnostic proof is the ideological precursor to
obstetrics’ bent on only retrospectively acknowledging the normalcy of a labor.
Jo Murphy-Lawless discusses the way that no birth is considered ‘normal’ until it is
finished, and therefore is handled by obstetrics as a risk and an abnormal, emergency state. Such
logic privileges the clinical knowledge of the body above that of the patient/mother herself, and
also above the appearance of circumstances. It functions by withholding ‘approval’ until the
conclusion of the event, and guarantees that almost no birth garners the prize of being ‘normal’.
Note the way that obstetrics positions itself as the gatekeepers of life and death, and
posits childbirth as such a potentially deadly event; this is the same thin line that Foucault
demonstrates in the clinic – the line between the life and death of a patient/disease and the
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
medical gaze and medical knowledge of it. This time period in question also witnesses the shift
from the idea of a “disease attacking life” to “pathological life” and series of various kinds of
internal deaths that all lead to (and sometimes succeed) the cessation of human life altogether.
Pathology becomes a lens through which to view all life, bringing suspicion to bear even on the
most apparently normal cases, of childbirth, for instance. Therefore birth itself becomes more
medicalized and made to conform to a hospital’s schedule rather than the natural rhythms of any
individual mother’s body or labor process.
This can be clearly seen in the patterns of modern hospitals’ approaches to maternity
care, where a woman in childbirth is often not allowed to experience a natural labor, but is
“induced” in order to maintain a hospital’s schedule, and meet an ever-shrinking window of time
considered “normal” for such an event. The authority of the obstetric practitioner is thus
eternally reconfirmed vis-à-vis their goal to ‘save’ mothers and babies and render their
experiences ‘normal,’ but normality stops becoming a natural state, and instead is only the
instance of a mother fitting into a proscribed schedule and calendar of events. Either way, the
medical professionals ensure that they are right, or else, in the interest of future success, since
they are of course working to perfect their knowledge, are in the right.
Concurrent with much of this history, both of medicine’s relationship with deafness and
disability in general, and with female bodies, is the history of eugenics and eugenic thought.
Culminating in the mass murders and sterilizations carried out in Hitler’s Germany, eugenics was
a pseudoscientific movement to better humanity’s gene pool. Hitler drew much of his legislative
inspiration for his programs directly from examples in the United States (Biesoldt, 1999). In the
United States, though no law was ever specifically passed demanding the sterilization of Deaf
women, as happened in Germany, laws did exist to sterilize those deemed inferior in other ways,
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
and even without the support of explicit law, many Deaf women were sterilized without their
knowledge, only discovering the damage after the fact. (Audism Unveiled is a documentary film
about discrimination against Deaf people which deals with this topic, among others). This bent
toward eradicating deafness and prohibiting Deaf people from parenting exhibits clearly the
paternalistic and pathologizing views that lawmakers and medical professionals took towards the
Deaf. No small wonder then, that Deaf mothers still face difficulty in negotiating care today.
Deaf mothers as seen by medicine
In recent years in Ireland, a fair amount of attention and energy has been focused on
issues of mothering and maternity. Although disability issues have been raised, and experiences
of minority mothers in the Traveller community, asylum-seeking mothers, and disabled mothers
or mothers with disabled children have been addressed, (Kennedy, 2002 and 2004; Kennedy and
Murphy-Lawless, 2002) there is still decidedly little information pertaining specifically to Deaf
mothers so far. What little has been written is often a product of medicine’s traditional
pathologizing discourse on Deaf mothers, albeit sometimes a tentative response to this as well.
The well-meaning wishes of those beginning to resist a totalizing discourse of pathology and
begin to consider Deaf mothers in their own right are perhaps best illustrated in a chapter of the
book Challenges in Midwifery Care. The chapter in question is written by a midwife herself, and
is entitled “Hearing Impairment and Midwifery Care,” The author, Kelsall, is clearly wellintentioned in writing the piece, but I will use her chapter here as a means of illustrating
precisely the shortcomings and inherited viewpoints of a normalizing science that are functioning
to withhold access to Deaf mothers today.
The title itself points to the first problem, which is that the Deaf mothers (or babies) in
question are being viewed through a strict medical model, one which posits them as lacking and
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
therefore not normal. Rather than referring to them as “Deaf,” Kelsall persists throughout the
article in using a language of disability and impairment, focused on loss. This is in contrast to
the cultural identity of many Deaf adults, who eschew terms such as ‘hearing impaired,’ ‘deafmute,’ or ‘deaf and dumb.’
Kelsall also engages in the medical model of deafness concerning the infant child –
advocating hearing tests and, if the child is deaf, immediate use of hearing aids, speech therapy,
and as a lastly mentioned tool. sign-supported English. The fact that a deaf infant might benefit
from an actual complete sign language, such as ISL, with its own innate grammatical structure, is
not mentioned, but it is instead noted that if the child is kept facing people’s faces at close
proximity all the time, that will be a benefit for the baby to lip-read the adults. This viewpoint is
supported today in practice by Dublin maternity hospitals (newborn babies of Deaf mothers are
sent for hearing tests, whereas babies born to hearing mothers are not), and by the Irish
educational system of visiting teachers for the deaf, who instruct the children in lip-reading and
speech until they are of school age.
Her suggestions for improving access revolve mainly around midwives being positioned
so that their faces (read: lips) are fully bathed in light, to facilitate lip-reading. There is no
mention of how arduous a task lip-reading is in general, let alone how limited a source of
information it might be when a woman is actually in labor. Kelsall does say that an interpreter
should be employed in the case of “those [mothers] who use sign language,” but there is no
discussion of whose responsibility it is to hire or to pay the interpreter. Although she is writing in
a British context, similar issues present themselves in Dublin as well. There is often confusion
about whose responsibility it is to book and pay interpreters. One mother in an interview told me
that she had succeeded in getting an interpreter for her birth, but didn’t know who ended up
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paying for it, only that it was a government body that did so. It would appear that the legislation
regarding this responsibility is unclear, and/or that patients aren’t fully aware of their rights.
One positive point of Kelsall’s chapter is that she recognizes and advocates midwifery to
recognize in a larger sense the role that midwives play in educating mothers (and in this case
Deaf mothers) about the biological basics of pregnancy and childbirth. Of course, without
discussing Deaf education, the assumption alone that deaf mothers need additional education is a
sign that they are viewed as less intelligent or less capable than ‘normal’ mothers. Nevertheless
it is positive to see a medical practitioner at least acknowledge her role as an educator. I will
return to the problem of ante-natal education when discussing my own results momentarily.
Overall it is clear that Kelsall’s heart is in the right place; she seems aware of the
structural inequalities that Deaf mothers face in getting midwifery care for childbirth, however
she has clearly internalized the medical model of deafness, and many of her statements
demonstrate a strong tacit belief in Deaf people being disabled and in need of “training” to be
adequate mothers. I hope by illustrating the underlying medical view of deafness present in
Kelsall’s writing, I have begun to demonstrate how this is at odds with how Deaf mothers view
themselves, and why it is important to document their experiences from their own perspectives,
if services are to be improved.
medicine as seen by Deaf mothers: identifying inequalities
Twenty years ago a study was conducted within the Irish Deaf community, entitled “A
Report on Pre-natal and Maternity Services as Experienced by a Group of Deaf Mothers.” It was
carried out on request of the Ladies’ Club of St. Vincent’s Deaf Centre, by the Adult Education
Service for the Deaf in Dublin. The study was done by questionnaire and garnered 30 responses
(out of 43 letters distributed). Its goal was “to clarify and, where necessary, identify needs in the
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maternity services as experienced by deaf mothers in the Dublin area,” and secondly “to present
the above information … with a view to bringing about improvements in areas where
improvements are deemed necessary” (Doyle et al, 1985, p. 1). When I discovered this report,
thanks to a tip from Anne Coogan, a member of the Irish Deaf community, it became clear that
the majority of people both at the Irish Deaf Society (IDS) and the Centre for Deaf Studies,
TCD, were unaware of its existence. This of course raises issues of distribution and the efficacy
of research without proper dissemination. Regardless of the results of my own work now as
compared to twenty years back, the first report cannot have brought about great change if it is
still largely unheard of. These are highly pertinent points to consider in my own work as well.
Who owns this research when it is completed, and how to inform the Deaf community of my
findings will become critical questions to address by late spring. I leave them aside for the
present, however, and focus on the findings of this initial report, for its existence, now that it has
come to light, provides a historical context for my own work that I heretofore was unable to
achieve.
The main observations were as follows. Foremost, medical staff “did not keep their
patients informed about their condition.” Several mothers indicated that they were patronized
and told “everything is all right,” even when they were in a state of emergency or suffering
complications. Explanations were often reduced to one word answers or being told “good girl.”
Antenatal classes weren’t highly attended due to lack of knowledge about them, and lack of
access to information during the classes as interpretation was not provided. Without interpreters,
communication is reduced to lip-reading or writing notes, however many mothers noted it is
“impossible to lip-read medical personnel who wear masks.” The final recommendation of the
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report was printed in capital letters, stating “every pregnant deaf mother should have access to
the services of a well-qualified interpreter” (Doyle et al. p. 16).
This report was not carried out by a professional or academic organization, rather by a
team of volunteers responding directly to expressed needs in the community. Therefore several
issues of application, as well as tacit and unacknowledged beliefs on the part of the survey team
(presumably representative of their time) go unaddressed. This is perhaps one explanation for
the lack of knowledge in the Deaf community that this report even existed. It becomes quite
useful now however, that I am revisiting this issue. Unfortunately, preliminary findings from my
research indicate that many problems of communication and the attitude of medical personnel
still remain.
Another report that highlights this difficulty was done in 2002, conducted by the IDS
with the support of the Combat Poverty Agency (CPA). This report aimed to discover the
prevalence of poverty (defined as lack of material, cultural and social resources) in the Deaf
community. One portion of the report focuses on poverty and healthcare, and is a very clear
indicator that access to adequate healthcare and health-related information is a serious problem
in the Deaf community. The existence of this report supports the premise of my own work – that
services and understanding of Deaf mothers’ bodies are seriously hampered by the powers that
be, and the structures and practices currently in place. This section of the report includes
firsthand accounts from the interviewees that show the range of ignorance within the Deaf
community concerning Deaf patients. Again, the major stumbling block is communication, and
ignorance on the part of medical staff. Doctors make assumptions about the limitations of a Deaf
person which are incorrect such as “deaf can’t drive,” and foreshorten communication during
visits by neglecting to explain conditions, stating simply “it looks bad,” or attempting to speak
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with another family member or even the patient’s hearing child, rather than make an effort to
communicate directly with the Deaf patient (Conama and Grehan, 2002).
Other reports, such as that of Maria Pierce (“Minority Ethnic People with Disabilities in
Ireland,” 2002), have also been useful in thoroughly grounding my work in the current state of
affairs in Ireland and some themes of minority and disability experiences. Her study includes
one Deaf person who says “no, I don’t see myself as disabled. The deaf community is important.
It is the deaf community that I most strongly associate with” (Pierce, 2002, p. 24). This
sentiment is echoes by the mothers I have interviewed as well. Pierce’s working definition of
ethnicity, based on a common culture and language, arguably could then include Deaf people as
an ethnic group. Although she does not go so far as to make this claim, the fact that Deaf people
do share a culture and language is an important one. This means that a Deaf mother is bringing a
different set of cultural assumptions and values to the table when interfacing with medical
personnel.
Therefore, in a sense my project is one of institutional ethnography, as the Deaf mothers’
experiences become gateways into understanding the functioning of Dublin’s maternity hospitals
(Jung, 2002). In another sense it is a documentary project, recording experiences within the Deaf
Irish community for their own sake. Finally, it is an attempt to record the themes of experience
as lived by Deaf Irish mothers in Dublin so that the community can use the document to fight for
improvements in services. I now turn more specifically to my work to date on this project.
Deaf Irish mothers: documenting experiences
Kennedy and Murphy-Lawless write in their report on asylum-seeking mothers in
Ireland, “the starting point for any change in service provision [for women] has to be women
themselves” (Kennedy and Murphy-Lawless, 2002, p. 40). They continue, stating the
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importance of “spending time with the minority community before designing research, so as to
be aware of all the dimensions that need to be covered in a survey.” When I arrived in Dublin I
spent the greater part of my first three months here volunteering at the Irish Deaf Society in the
Deaforward office, and attending lectures, conferences, and social events in the Irish Deaf
community. I worked to acquire aptitude in Irish Sign Language (ISL) both to gain credibility
within the community and also to be able to conduct interviews later on. I sought out Deaf
mothers and interpreters for informal conversations to aid in structuring my research and to help
in identifying key areas that needed attention, and incorporated their feedback into my interview
questions. I began my interviews in January 2006, and am continuing to locate mothers
interested in participating by word of mouth, networking at Deaf events, and advertising in the
newsletters and journals of the Deaf community.
By interviewing Deaf mothers about their experiences my aim has been not only to
document their experiences but also to spark dialogue within the community around this issue
and also to impart the message that their experiences are valuable and important. It has been
striking to witness the number of times mothers that I have approached have told me precisely
the opposite of this: that they have “no experience” to speak of, or nothing worthwhile to share.
This apparent lack of self-confidence and esteem within the community is difficult to address, as
it has been reinforced by the disabling and disempowering messages that Ireland’s medical and
educational systems have conveyed to the Deaf community for many years. Despite this hurdle I
am convinced that by having these dialogues and personally valuing the lived experiences of
Irish Deaf mothers, that hopefully I can at least offer a counterpoint to this history of negativity.
There have been other climactic hurdles as well. As a hearing person (and perhaps also
as a foreigner) I have encountered a fair amount of suspicion and mistrust in establishing myself
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
here. This is in part due to the unfortunate fact that hearing educators and researchers have often
taken advantage of Deaf communities and used them to their own ends, or to forward their own
careers. I am not speaking only of Ireland’s Deaf community, though it has certainly happened
here as well. These situations breed mistrust and a reluctance to admit outsiders into the
community. Complicating this is that certain camps within the Irish Deaf community, most
specifically, within the academic ranks, are currently engaged in a somewhat separatist agenda.
There is, on the one hand, the dire need for research such as my project to be done. There is, on
the other hand, currently a strongly asserted belief here, that only (Irish?) Deaf people should
conduct research within the (Irish) Deaf community. Several times this issue has been raised
with me since my arrival, and articles citing emancipatory or subaltern research methodologies
have been offered as proof that my project is ill-conceived. Or to put it another way, that it
would be a great project, if only I were a Deaf Irish woman, preferably a mother, myself.
Interestingly enough, several of the very articles and texts I have been pointed towards to cite my
inadequacy for this task also make a very strong case for exactly the sort of cross-cultural work I
am doing.3 Moreover, no small community can work in total isolation from others. I have found
the United States, where I have been working within the Deaf-world and in Deaf Studies for
several years, to be a bit more open-minded in this regard than the current situation in Deaf
Studies in Ireland. It appears to be a matter of cultural identity formation; the American Deaf
community is larger than, and has had greater access to resources than the Irish Deaf community.
Hearing people have become in many settings accepted as allies. Although I hope and assume
that this divide is something that may mend with time, I do think at least one example would aid
3
The Fulbright program itself is founded on cross-cultural understanding. If it were really so impossible to work
successfully within another culture, I doubt I would have been offered the opportunity to come here at all.
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
in making my case, as despite this perhaps being ‘a bad time’ to be undertaking this project, I do
not have the luxury of waiting in Ireland until the (academic) community is more welcoming.
One particular piece I have been referred to is chapter 6 of Ladd’s Understanding Deaf
Culture, which is focused on research methodology. specifically his aspirations for and
experience with subaltern-elite researchers working within the subaltern community. Many of
the issues Ladd raises regarding critical ethnography are parallel to issues and critiques raised
within feminist methodology in response to traditional research approaches. In this sense they
are doing the same work, although he makes no mention of feminist methodology or feminist
epistemology and what those models might offer Deaf subaltern research, I see them already
doing so. (see the Summer 2005 issue of SIGNS: Journal of Women in Culture and Society, for
a survey of current feminist methodological theory and practice). Of course Ladd lays out an
argument for why majority people (such as myself) and those in positions of power cannot
conduct valid or deeply nuanced research within the Deaf community, but his own
methodological approach in situating himself within his research acknowledges just as clearly
that the subaltern-elite researcher is not a perfect solution either. That is, there will always be
dynamics and relationships to negotiate, no matter who the researcher or research participants
may be.
I do not discount the need for more qualified and engaged Deaf subaltern researchers, but
that lack should not keep all research from going forward. By considering my subjective
position in this process and engaging with the Deaf community in Ireland as much as possible
while I am here, I believe that although I am not Deaf, not Irish, and not a mother, I can still
elicit answers and engage in discussions that are fruitful. In addition, as I question Deaf mothers
about their experiences, one of the most stimulating parts of the interviews I’ve had so far, is
Steinberg p. 19
Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
when mothers share their own visions for how to improve services. This is their own
brainstorming, unmitigated by the presence of a dominating or medical gaze, and it is these
recommendations exactly which will be one of the strengths of my final findings. To begin to
solve these issues of access to services from the mothers’ own perspectives is crucial, and in my
interviews I am working to create the beginnings of an opportunity to do this. The sort of
circumstances that give rise to volunteering solutions, especially from women who have already
disclosed their feelings of low self-confidence in interacting with the medical field, are fueled by
my constant drive to respect them and their experiences. that being said, I not turn to the
interviews I have conducted so far, identifying what appear to be the strongest themes arising in
Deaf mothers’ experiences.
Because of the small size of the Irish Deaf community, maintaining anonymity is a
particularly salient concern. At this point in time, as I am only partway through the interview
process, my discussion of results must stick to broad themes so as not to compromise the
confidentiality of the few women so far involved. Therefore for the most part I have avoided
direct quotes. Of course, in presenting these findings outside of the community this task
becomes somewhat easier, but as my goal is to produce a document that has use-value and
interest to the community itself, respecting participant’s privacy and not quoting them in any
context that might reveal their identity is an ongoing consideration. At this point then, I will
only sketch an outline of the themes as they are emerging, with the goal to expand each of these
considerations in greater detail as my research evolves. Additionally, I will draw more links
between the lived experiences and the models of medicalizing Deaf and female bodies that I
have outlined in previous pages.
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
The mothers interviewed discussed births that took place within the last fifteen years to
present. Several common points have come up in the course of the interviews so far. The most
readily apparent issue has been communication, both the method and quality of it. The majority
of mothers reported using writing as the primary means of communicating at doctors visits, both
in hospital and with their GPs. Writing notes usually resulted in a limited information exchange,
with GPs keeping their comments to a concise “very good,” or “your baby is due in one months’
time.” Explanations were never volunteered by the doctors, but had to be asked for, often
repeatedly. Some mothers assumed that the GPs were as curt with all patients, often because of
the quantity of them, evidenced by full waiting rooms and long queues, but others were sure that
it had more to do with them being a Deaf person than anything else. One mother related a story
about her GP, who she’d known for many years. He was always short with her, but now that she
has a (hearing) child, the GP has a different attitude, always chatting with the child when they go
in for a visit. That, to her, is a clear indication that he is unwilling or unable to treat her equally
because she is Deaf. The mothers also noticed that even if hospital staff were friendly, they
could detect feelings of resentment. The nurses obviously didn’t have the patience to be writing
down information or announcements they made for the Deaf mothers, instead they acted put out.
This sort of behavior places the full onus of communication back on the Deaf mother, blames her
for being Deaf, and makes her feel like a burden.
Other mothers echoed this sentiment. In antenatal checkups as well as in labor, without
an interpreter, some mothers would rely on their (Deaf) husbands to help facilitate
communication. This was seen as a mixed solution. On the one hand it is reliable and the
husbands were willing to help and happy to be involved, but on the other hand, especially in the
delivery room, this meant that the couple could not bond and support one another, because the
Steinberg p. 21
Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
husband was constantly struggling to communicate with the delivery team, and then interpret for
the wife. This resulted in a feeling of neglect, of laboring alone, and also was obviously more
time-consuming, thus prolonging the labor. Often if mothers relied on their husbands for
communicating in antenatal visits, they did so only for the first pregnancy, and in subsequent
pregnancies they would attend visits alone.
Antenatal classes offered by the hospitals were attended poorly or not at all, because of
the lack of interpretation provided. One woman said that she went to one class, out of the series,
and brought a friend with her to interpret. Another said that she’d gone to a class organized by
the Deaf Club, but the interpreter was from the NAD (National Association for the Deaf) and
was using Signed English, which she didn’t understand. The inaccessibility of antenatal classes
and the information typically provided there becomes a major concern, leaving the mothers
going into labor feeling quite uninformed and not knowing what to expect during labor at all.
One mother reported that after her first birth, she learned to act “more Deaf” the second
time around. This means that she wouldn’t talk, even though she did have some speech, because
she saw that if she spoke at all, the medical staff didn’t believe she was really Deaf, or they then
forced the communication medium into a spoken and lip-read one, rather than respecting her
wishes for an interpreter. This points to misperceptions and ignorance on the part of medical
staff about deafness in general, and specifically the Deaf community in Ireland, which, as a result
of many years of oral education, has many members who are fully Deaf but are able to speak if
required. This level of ignorance appears again and again throughout Deaf mothers experiences.
When asked in the interviews about the amount of information that they’d receive in
these visits, the consensus is that it was always a bare minimum. Some mothers rectified this by
repeatedly asking questions, in writing, to the GPs. Others relied more on friends in the Deaf
Steinberg p. 22
Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
community, or on books or websites, to learn about pregnancy and birth. One woman expressed
that during pregnancy and the delivery, she was afraid to ask any questions at all, for fear of
appearing stupid. Other mothers echoed this, saying they’d never ask the GP if they had a
question, but would always go back to the Deaf community and other women for answers.
The most recent birth is within the past year. Of mothers who have not had children in
several years, there is a tendency for them to express great hope that services are better now, that
interpreters would be provided more readily, and that, to paraphrase several mothers, “If I was
pregnant again now, I’d know what to do to get my needs met.” As I continue the interviews,
hopefully speaking with more mothers of younger children as well, I will be able to see if this
hope is being born out.
From looking at the issue of communication, it is clear that there is a gap between Deaf
mothers’ understanding of their own needs, and the medical staff’s knowledge about Deaf people
and their needs. As already noted, language ranks high on this list. Deaf mothers expressed that
medical staff need to understand that English is not their first language, and so even if they are
writing to communicate, it is still a struggle. The observation was often made that doctors
seemed to think the mothers weren’t smart, or that Deaf are in general less intelligent, because
they use ISL or because they struggle with English. This is related to a history of seeing
deafness as a medical illness and a disability. One mother noted that once she was handed her
file, to hold while waiting for her turn to be called. She looked inside and saw that it said “deafmute.” She had to explain to the doctor why that is inappropriate language. It was a clear
indication to her of exactly how uninformed medical practitioners are about the Deaf community.
Another strong indication of the medical practice of seeing deafness as a disability actually came
after the births. Deaf mothers are instructed to bring their newborns for a hearing test, in most
Steinberg p. 23
Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
cases within three weeks of the birth. Several mothers noted that they asked the other (hearing)
mothers in their delivery ward if they had to bring their children for the test, and none of them
did. This treatment made the Deaf mothers angry. They felt as though the hospital were
ignoring the fact that they were fine and healthy mothers, with fine and healthy babies, and only
were concerned with the audiological status of the newborn. In addition, in the case of the
children that did turn out to be born deaf, within weeks a visiting teacher of the deaf showed up
on the family’s doorstep to begin oral instruction and teach the baby to lipread. The family was
not informed that this would take place, and had no choice but to tolerate the visits and
instruction, despite the fact that the entire family’s primary means of communication was ISL.
During the interviews, the mothers volunteered many recommendations as to how to
improve services for Deaf mothers. I list some of these here, without going into too much detail
of application, to provide a sense of first of all, the insight that Deaf mothers have into how to
alleviate many of the difficulties they experienced, and secondly, the ease with which some of
these small changes could be implemented, with huge effect. For instance,
a Deaf woman should be employed by the hospitals to explain breastfeeding to new Deaf
mothers. Interpreters should be provided in antenatal classes. Information available in English
pamphlets should also be available in ISL, for example on DVDs that can be borrowed and
watched at home, and Deaf mothers should be informed of the availability of this information.
Hospitals should be aware of the ISL interpreter agencies in Ireland and how to book an ISL
interpreter. Medical staff should be informed about the basics of Deaf culture in Ireland, be told
the ISL is a full language, and understand that English is most Deaf people’s second language
and that it is inappropriate to judge a Deaf mother based on her English skills. Expectant Deaf
mothers should be informed of hospital protocol before the birth, including being forewarned
Steinberg p. 24
Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
that they will be required to get a hearing test for their baby. They should also be informed of
the role of the visiting teacher if the baby is found to be deaf. These and more recommendations
are growing out of the interviews so far, and, in combination with the recorded experiences I am
gathering in the interviews, will hopefully together make a very strong case for implementing at
least some of these changes and improving maternity services for Deaf mothers in Ireland.
At this point all the births discusses have been in the three major Dublin maternity
hospitals; Holles Street, the Coombe, and the Rotunda. Each mother left the hospitals with
strong feelings about the quality of care and service but at this point in my interviews I can’t yet
draw any firm conclusions in comparing one to the next. I don’t know if this will happen further
down the road or if the conclusions will be more relevant to general service protocol in all the
hospitals. On this note, when the interviews are completed, I hope to distribute my findings to
the maternity hospitals themselves, as well as present them to the Equality Authority, the
National Disability Authority, and of course the Irish Deaf Society, the Irish Deaf Women’s
Group, the Centre for Deaf Studies and the Deaf community as a whole, so that the community
can make use of this work now and in the future. Interviews will be completed by March and I
will have compiled the findings by June.
Already at this point in my research, it is quite clear that the needs of Deaf mothers have
not been adequately met by maternity hospitals and GPs in the Dublin area. Those mothers who
have gotten better services in recent years have fought for it on their own, often becoming more
aggressive and assertive than they would normally be, in order to demand their rights. By the
end of this project I hope to have documented this issue with a degree of thoroughness that
perhaps can help to ensure that in the future, Deaf mothers can avail of equal access and equal
services as a matter of course.
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Deaf Irish Mothers And Reproductive Healthcare: Identifying Inequalities and Documenting Experiences
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