“The man of a thousand voices
talking perfectly loud
But nobody ever hears him,
or the sound he appears to make”
The Fool of the Hill – The Beatles
Abstract
During recent years, among the numerous fights that feminist movements are carrying on, there is the one of “representation”. Even those who never had studied something about Sociology or Gender Studies, might understand the importance and the powerful impact that a faithful representation of the multi-faced reality can have on the masses and new generations that are approaching not only the social contexts, but to a deeper knowledge of themselves.
Roughly some communities of people are still being ignored by the new narration, whose voices have not been heard yet or whose figures are still moving in the shadows. For this purpose my research is aiming at grasping a bit of ground for a small group of women who are part of the disabled community. In spite of that I should warn all my readers that this paper will give you just a limited overview of the whole panorama that is shield under a broader definition such as: ‘cis-gender women without uterus’.
Introduction
There is this pretty popular The Beatles song called: “The Fool on the Hill” that spoke about a man “of a thousand voices talking perfectly loud”. He is there, on the hill, but “ nobody ever hears him” or “the sound he appears to make”. He is there, he is talking, maybe even shouting, but looking at him from the outside he seems to be invisible. So we ask ourselves: what is around him? Is there someone? Why is he being ignored by everyone?
If I write the word “disability” what comes to your mind at first?
Supposing you connected the word with a person, what does she/he/they look like? How stereotypic is the figure in your head?
This will be our starting point.
There are thousands of disabilities around the world, every country in their medical department has a list of codes and each of them is associated with a certain pathology or condition, but not all of them are visible. Did you know that? Let’s refer to them as the “invisible disabilities” and now let’s dig into the story of the community mentioned before. As you might catch from the title there is a “hill” which is the topic of representation in feminist panorama and a “hole” that needs to be filled up, that it has always been there even if no one seems to really take care of or stand up for.
The “hole”
What I called “hole” represents the 5% of reproductive-aged women worldwide that have Uterine Factor Infertility (UFI). UFI is the technical medical terminology used to refer to people with certain conditions that led them to being unable to carry a pregnancy due to an undeveloped or absent uterus. Individuals who have had their uterus surgically removed or whose uterus does not function fully are also included under this term. This is a previously irreversible form of female infertility.
My case studies focus on women who have undergone hysterectomy surgery or were born with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome.
Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome
“When I turned fourteen I started having several health issues and after four infinite months I found out that I was born without a uterus, I did not even know that it was possible.
From that day on, I felt this detachment from my body and the world, as if I was not real, a joke of nature. Surfing on the net, typing my syndrome’s name I always found myself in front of almost empty pages. Everything was confusing and frustrating and I felt alone, as I was the only one.” (Interviewee n.1)
Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome is a rare congenital disorder regarding the female reproductive system and it is enclosed in the umbrella term “Differentiation of Sexual Development (DSD)” (Fliegner et al., 2014). MRKH occurs in the first weeks of fetal development affecting one person over 4000-5000 and it is characterized by the absence or underdeveloped uterus and a shortened vagina; both determined by an atypical development of Müller’s ducts. Despite what has just been written, secondary sexual characteristics and external genitals are developed normally. Subjects who are experiencing Rokitansky syndrome, have normally-functioning ovaries and a female chromosome pattern (46,XX), even though typically do not experience menstrual cycles, this leads women affected by this pathology to not be able to carry a pregnancy despite having an hormonal level comparable to healthy women.
Many women with this condition feel defective and inferior, and surgical and non-surgical treatments, often experienced with shame and embarrassment, can reinforce these beliefs (Heller-Boersma et al., 2009)
Hysterectomy
No hysterectomy story can be the same as another: each surgery has his or her own reasons.
(Utero – Leah Hazard)
Immediately after cesarean delivery, hysterectomy surgery is one of the most frequently performed procedures in gynecology across many places in the world. It consists in removing the uterus and in some cases also the appendages, tubes and ovaries. Individuals undergo this procedure due to various medical reasons such as: uterine cancer, endometriosis, fibromatosis or uterine prolapse – as one of the first cases with positive outcome registered in history by English obstetrician Percival Willughby on Faith Raworth-. It is considered as an invasive intervention both physically and psychologically, and therefore it should be the last hope in those cases where there are no other viable alternatives.
‘A woman I talked to put a note on the mirror that says ‘You’re still a woman’. A Reminder for her – and for all of us – that the uterus is often indissolubly linked to the identity of a person, and that its removal is therefore as powerful as its presence.’
Research journey
Writing down about this topic and titling my research as the “hole” of the hill, makes me feel the need to include a section centered on the tangible deficit of evidence and pre-existing studies about the subject-matter; since during the research stage, I considered this lack as evidence itself.
The whole process of collecting datas and conducting interviews gave me a lot of struggle from the research of: analytical data and medical reports, building a solid feminist bibliography, finding women who agreed to the idea of sharing their experiences and being interviewed. On one hand, we can more easily understand the obstacles encountered with the construction of oral primary sources through the interview process. Mainly for two distinct causes: firstly cis-gender women without a uterus are statistically rare and UFI is not a particularly widespread condition, secondly we ought to consider the strong psychological impact and traumatic experience that these groups of women have to deal with;These pieces of information help us understand those who declined my proposal for an interview.
Therefore, I find the absence of articles, research, or other sources about the community of women without a uterus particularly relevant. Considering that I am writing this paper as an insider. I have experienced this deficit twice: first time seven years ago as a patient and this year as a student. In the first case, accessible information about the new life condition (that I and many others like me experienced) was crucial in determining myself and in the process of recognition as part of a community; this deprivation inevitably affects in a negative way the sufferer. As a student – who is trying to investigate with oral methodology supported by a literature bibliography – the huge fragmentation of information is a wall that is urged to be demolished.
My journey in looking for relevant sources was supported by numerous meetings with different professional figures; from professors to feminist associations, journalists, libraries, activists and doctors. None of these professionals were able to suggest a title related to the subject of my study.
At least in Italy, nowadays there is no general census on the precise number of women without a uterus and we should not be satisfied by sectorial statistical data such as MRKH syndrome patients or yearly number of hysterectomies. We need a targeted statistical survey (that should be continuously updated) that gives scholars access to precise numbers allowing them to structure new research on this topic.
Methodology and literary selection
As briefly mentioned before, the methodology I used for this research is: Oral History supported by a background work conducted on written sources from the medical and statistics fields plus feminist literature. I considered it the best choice because it would have been quite impossible to rely just on pre-existent sources. Oral History gave me the opportunity to create new primary sources, starting from the experience of people that are still in the shadows.
In the light of the low number of interviews conducted, I made a further decision regarding the type of chosen text. Examining my literary selection, two of the chosen books (3), (8) and a part of the degree thesis of Faggiana S. (1), include the transcription of interviews of women with Rokitansky syndrome or who were subjected to hysterectomies.
The voices of the “hole”
In this section you will find a collection of quotations made by community members. It is a conscious stylistic choice to paraphrase anything and simply leave the space to the voices of the interviewees. The hope is to give back the sound to that “fool on the hill” that no one “ever hears”.
The themes that I tried to touch on are: the loss of the identity (crisis), hospital and medical experience, relationship with the invisible disability and motherhood.
Loss of identity and identity crisis
P9: “Maybe that’s where this thought that I feel like half a woman started. Because I’m a woman aesthetically, but I’m missing a piece [the uterus]. To be complete you’re missing an important piece.”
P4: “First of all, this [the diagnosis] has given me, with age, the awareness of being a carrier of an emptiness.”
P7: “I didn’t know the name of my syndrome, I didn’t know what it was about. I had never opened my medical records since I started the journey, and so it was just a ‘I’ll pretend it doesn’t exist, until I get punched in the face’, more or less.”
Hospital and Medical Experience
P7: “It’s the body that is taken and used as they want. You don’t know what’s happening to you, you’re tossed around from one side to another.”
Jennifer:“That was the day they told me: Nothing to be done here, there is nothing, you were born without a uterus, good luck and goodbye”
Interviewee n.2: “I have the impression that no one told me about it because more or less I was able to understand what I was getting myself into. I ran away from the surgery for several months then I assimilated the need to do it.”
Relation with the invisible disability
P2: “I learned not to look at it as an illness. I mean, I am like this, it’s my condition… I can’t change it. I was born in this way.”
P10: “My mother still tells me: ‘Don’t say it. It’s a private thing. Don’t say it.’ Maybe that’s what generates that hint of feeling of shame? When your mother tells you: ‘Don’t say it.’ Why shouldn’t I say it? Do you know why? If you shouldn’t say something, it’s because it’s something that can’t be said, it’s wrong.”
Motherhood
Interviewee n.2:“if you experience something like that you have to prepare yourself not to have what you would like. It’s all very tied to the experience of motherhood”
Conclusion
I am aware that this paper touches on a variety of themes and might leave you with a lot of unsolved questions, this was part of my goal. Unfortunately the conclusion of this short research is that there is still a lack of information and no unified community that works on their own recognition. Even though, working on this project, looking at mine and other similar experiences I understand that we need a space. We need our voices to be heard, even when they are not perfectly loud/loud enough. We need to fill the hole, to stop being the fool on the hill.
Bibliography:
citation style APA7
- (1) Faggiana, S. (2021). Analisi qualitativa dell’esperienza di donne con la sindrome di Mayer Rokitansky Kuster Hauser (dissertation). (L. Montali, Ed.).
- (2) Hazard, L., & Gallo, B. (2023). Utero: Storia Intima del Luogo da Cui Tutti Veniamo. Ponte alle Grazie, Adriano Salani.
- (3) Marchi, S. (2017a). Mio tuo solo loro: Donne Che partoriscono per altri. Fandango libri s.r.l.
- (4) Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome. Pennmedicine.org. (n.d.). https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/mayer-rokitansky-kuster-hauser-mrkh-syndrome
- (5) Stang A. (2013). Impact of hysterectomy on the age-specific incidence of cervical and uterine cancer in Germany and other countries. European journal of public health, 23(5), 879–883. https://doi.org/10.1093/eurpub/cks080
- (6) Stone, L., & King, D. E. (2019). Kinship and gender: An introduction. Routledge.
- (7) The beatles. (n.d.). The fool of the hill [CD]. On The fool on the Hill. s.n.
- (8) Vianello, M. (2021). In Fondo Al Desiderio: Dieci Storie di Procreazione Assistita. Fandango libri.
- (9) Zimmermann, J. S. M., & Sima, R.-M. (2022, August 14). Quality of life and sexual function in patients aged 35 years or younger undergoing hysterectomy for benign gynecologic conditions: A prospective cohort study. Obstetrics and gynecology – wiley online library. https://obgyn.onlinelibrary.wiley.com/doi/10.1002/ijgo.14549
