Diana Gioria
The road towards the full affirmation of the right to choose freely regarding one’s body, have a relationship as a couple, form a family and have children is still long and full of prejudices and stereotypes
«Women with disabilities do not have sexual intercourse, therefore they do not need gynecological visits»; «Women with disabilities develop gynecological tumors less frequently» are some of the major false myths circulating about the sexual and gynecological health of disabled women. These and other similar preconceptions exist due to the double discrimination to which women with disabilities are subject: one based on gender, common to all women, and the other as a disabled person. As a result of this heavy form of discrimination, they are not recognized as having any role related to being a woman: as a partner, as a mother and as a professional worker.
What the European standards say
These denials are in contrast with the rights recognized to women and girls with disabilities in the European Union and reaffirmed by the Third Manifesto, according to which they must be protagonists of their own lives in all areas, including sexual and reproductive ones.
Precisely regarding sexuality and gynecological health, it has recently been promoted by UILDM, the Italian Union to Fight Muscular Dystrophythe webinar: «The health of women with disabilities between needs and false myths».
«It is fundamental that we are recognized as having the right to choose freely regarding our body, to have a relationship as a couple, to form a family and have children – underlines the vice-president, Stefania Pedroni -. The road is still long and it is important to recognize stereotypes and prejudices, educate and be educated to respect our body, in all its forms. Research has improved the quality of life of us people with neuromuscular disease and now we can have an active sexual life and give life. This “capacity” of ours now needs adequate structures to be welcomed.”
We need a paradigm shift
We therefore need to implement a paradigm shift. Girls and women with disabilities must be placed at the centre, making them protagonists of their lives also with regard to choices regarding sexuality and reproductive capacity. For this to happen, first of all, it is necessary to change the approach that families have towards them. In fact, they mistakenly consider them as eternal children, without a sexual life and even less capable of having and raising children. Therefore, disabled girls are left to fend for themselves in the complex phase of puberty. This is a very particular moment for all adolescents because, on the one hand, their body changes, prepares for sexuality and reproductive capacity, as they become adults, breasts, hair and hair appear. the menstrual cycle; on the other hand, however, there is a lot of instability and immaturity on a psychological level.
This dissonance generates a great internal conflict. As stated by Dr. Federica Ricci, child neuropsychiatrist and vice-president of the UILDM medical-scientific commission – AOU city of health and science of Turin, «the family must become aware that the transformation of the body from a child to an adult body occurs in daughters with disabilities at equal to their “able-bodied” peers. So they must help them in this delicate transformation of the body by making them aware of it, through exploration with their hands, washing and looking in the mirror.”
Clinics and equipment are not accessible
And that’s not all. Women with disabilities face the lack of accessibility, rather widespread, of clinics and gynecological screening equipment, as demonstrated very well by the data emerging from the report “Sexuality, maturity, disability” conducted by the Psychologists Group and the Uildm Women’s Group in 2022. On a sample made up of one hundred and thirty-one women with In fact, between the ages of 19 and 74, only 55.6% of the interviewees declare that they regularly undergo gynecological visits. The remainder say they do not do so, due to the inaccessibility of the clinics: in 83% of cases the lift is missing; in 61% the patients had difficulty in assuming the appropriate positions to carry out the visit and only 27% found accessible changing rooms.
Obstacle prevention
The non-accessibility of clinics and gynecological diagnostic equipment, combined with stereotypes, do not favor the discussion of prevention at all. As Dr. Paola Castagna, member of the UILMD medical-scientific commission – Sant’Anna Hospital Presidio – AOU Città della Salute e della Scienza of Turin, explains, it is often impossible to carry out pap tests due to the non-adjustable height of the beds; or perform a mammogram, because the mammogram does not go down to the level of the wheelchair.
Due to this, uterine and breast cancers are very common among women with disabilities. Finally, the belief that disabled women do not have sexual intercourse means that they are not protected from sexually transmitted diseases, such as HIV.
Untrained healthcare personnel
In addition to the tangible problem of accessibility, during visits disabled patients are mostly faced with medical and paramedical staff who are inadequately trained to respond to their particular needs. The need for a constructive discussion with experts on the part of women with disabilities, however, also clashes with their reticence to undergo gynecological examinations.
Why? It’s the “fault” of the wrong mentality of families according to which, since girls don’t have a sexual life, visits to the gynecologist are useless. This distrust, as highlighted by Noemi Canavese, clinical psychologist of the UILMD Psychological Group, translates into less than constructive attitudes on the part of disabled patients during visits: they appear fearful, ashamed and uncomfortable. Again according to the expert, another element of “disturbance” is represented by the fact that in the majority of cases, 71%, women with disabilities are accompanied to the visit by a family member or caregiver and this prevents a direct relationship and confidentiality necessary to confide in the doctor.
All these difficulties put together act as a deterrent to gynecological health and prevention. For this reason, it is necessary to make existing clinics accessible and inclusive, and to create others to which disabled patients can turn freely, independently, feeling protected and cared for.
April 3, 2024
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