«The first gynecological visit was quite traumatic: 11 years ago, I wasn’t so aware of the level of systematic stereotypes in which we are immersed, but I immediately felt a sense of inadequacy and discomfort that I didn’t yet know how to name. The gynecologist, turning to my companion, said “let’s do the external examination anyway”, in one sentence eliminating the possibility that a person with a disability could have a complete visit, could have had sexual intercourse, denying those who are disabled and have non-compliant bodies the possibility of having a sexual life.” This is the testimony of a young woman, who we will call Lucia, 28 years old residing in the Marche region, not self-sufficient, in an electric wheelchair and the need for personal assistants to get around and get around.
Because of this bad experience, Lucia waited a long time before deciding on a second attempt. Another failure: «This doctor also took it for granted that I wanted an external ultrasound, she wanted to know in a painstaking way why I was disabled. I have no problem talking about muscular dystrophy, but I try to talk about it when having medical information is useful for the clinical purpose of the visit. But the dystrophy in this case does not come into play and therefore I did not want to give information, and I was taken for grumpy and uncooperative”. Again, it is stereotypes and prejudices that make the outpatient visit in vain.
The third time is the good one: «The gynecologist asked my assistant to go out, we talked first, he called me “lei” and took it for granted that I had had sexual intercourse and that I had to do the internal examination. I felt recognized as a woman. She took great pains to visit me in the wheelchair and we managed together to find solutions. This is an effort that should not be made since one should simply book and have everything ready, it is a right.” In fact, during visits with three different gynecologists in two public structures, the Salesi pediatric hospital in Ancona and a clinic in Asur Marche, Lucia noted «the absence of architectural barriers visible to most people, such as steps, narrow doors but absolute lack of all other features, such as large spaces, electric bed, lift which, for someone like me, are essential for the use of the service».
Stefania Pedroni, psychologist, Uildm
However, for Stefania Pedroni, psychologist and vice-president of the Italian Union against muscular dystrophy Uildm, «beyond the problems of accessibility for those with a motor disability, linked to the narrow spaces and the lack of structural measures, It is the attitude of the clinicians that weighs heavily».
There is an issue of accessibility to health services and the right to health which applies to gynecology, as well as to ophthalmology or dentistry, and all disciplines that require the adoption of certain postures. However, for Stefania Pedroni, «beyond the accessibility problems, linked to the narrow spaces and the lack of structural measures such as the electric bed or the lift, It is the attitude of the clinicians that weighs heavily». We need, Lucia adds, «cultural and for cultural measures such asabsence of prejudices and stereotypes towards disabled people and the need to consider them as if they were not disabled in the exchange of information, relationships and interactions».
Women often report being victims of prejudices from medical personnel which emerge from the communication style, from the questions asked to the patient and from the investigations conducted at the time of the visit. Disheartening experiences that end up distancing them from prevention, screening and health. «I have limb-limb dystrophy, to move around I need a lift or in any case help. I always thought that in a big city the opportunities were different for those with a motor disability and, therefore, I moved to Milan from Modena » she tells us. In fact, «my experience at Niguarda has always been very positive, the staff has always done their utmost to resolve any contingent difficulties. Furthermore, gynecology is coordinated with physiotherapy which provides a lift and an operator trained in the use of the various aids. Also at Niguarda, I take part in oncology screenings, thanks to the provision of a mammograph which does not require me to keep an upright position.”
The Uildm women’s group
Since the 1990s, a women’s group has been active in Uildm, also working on these issues, which are usually little debated, such as that of affectivity and sexuality. Pedroni recalls that women with disabilities suffer from multiple discrimination. Women with motor disabilities experience the difficulties encountered every day by every woman, the well-known discriminations often silenced when not denied related to their gender, but also other discriminations based on disability. These too, like the first, take different forms: they can be direct, the so-called ableism from the English “ableism”, which is a discriminatory and prejudicially devaluing attitude towards people with disabilities (which also includes just taking it for granted that we all have a body like one’s own), or even indirect when, although apparently neutral, they put the disabled person in a disadvantageous position.
«The increase in life expectancy requires that today we also address issues related to sexuality and reproductive health, despite the persistence of judgmental and ableist attitudes reported by our women who also tell of having received devaluing and judgmental comments from your gynecologist such as “are you sure you can handle a small child in your condition?” in an attempt to dissuade them from the idea of pregnancy” comments Stefania Pedroni, who recalls how the technical-scientific commission of Uildm, since last February, also includes a gynaecologist, Paola Castagna from the Sant’Anna Obstetric and Gynecological Hospital in Turin, where there is a disability clinic that provides multidisciplinary assistance to those who, with a motor disability due to trauma, injury or neurodegenerative diseases, want to become a mother . «An example of good practice, which we hope to extend», concludes Pedroni: «Things are changing a bit for everyone, disability or not, also thanks to the different relationship that doctors establish with their patients, made up of sharing decisions and therapeutic alliance”. Finally, to return to the structural and cultural accessibility to gynecological health in the disabled, Uildm, with the support of scientific societies, has distributed questionnaires to specialists to map the situation, already obtaining 65 responses from as many public and private centres, therefore the first results could be communicated soon. Perhaps already on March 6th on the occasion of the webinar organized by Uildm (read below, ndr) and also read Women’s health, as long as they are not disabled.
Photo at the top of Photos by CDC are Unsplash. The other photos are by Uildm