The system of protection built around people with intellectual disabilities in some cases proves oppressive and with regard to the sexual freedom of girls and women with disabilities, it is difficult to find the same openings that are available to grant them in other areas of life. But we will never know how much freedom and life these women can handle if we are not willing to educate them to live both. There is always a window from which life enters: Do you have to work to keep it closed, or study a way to try to keep it open? “My little girl stood in front of me that she had already gone to get my beautiful earrings, the ones with the real pearl, she was jerking me, demanding that I help her put them on. Hanging them by her ears, I brought her in front of the mirror: – but do you see how ridiculous you are?».
It was a story entirely told in the first person, that of La mia creatura (e-book of the “Corriere della Sera”, 2013), a short story that Clara Sereni used to give shape to the worries and cares of a mother. Not just any mother, the parent of a daughter with an intellectual disability.
“My creature,” he mentions it when he thinks about it, probably unaware of the terrible deception that possessive adjectives can generate when referring to people. “My little girl”, so the appointment in other passages, despite the clues that would suggest that the childhood of the daughter has now passed. “I prepared dinner, put on the table, called her. He got up, on the chair there was the Cursed Red Spot, the blood that you do not know when it comes, never once it is regular. I stripped her, washed her, put on everything she needed and another pair of pajamas. Wondering how many times why that unnecessary misfortune, for a woman like her that children certainly will never do. Unless someone takes advantage of her, poor soul so naive and pure, for this reason I never lower my guard” (bold ours in this and in subsequent quotations).
A house like many, perhaps in the province, in an unspecified place. Healthy foods and the comfort of established habits. But protecting is a challenging task because life does not let itself be shut out easily. There are the neighbors, that Ruggero, a bricklayer who always sings American songs, and who she does not like, she never liked, ” to begin with that name, Ruggero: that if one roars sooner or later bites, no?».
Then there is his partner, the foreigner, ” who to hear them is called Maddalena, but black as it is the name will be another for sure, unpronounceable. Together they pretended to be a couple like so many, the different colors of the skin fisted with any claim of normality”.
So there is Teresa, another neighbor who is not inclined to do her own business, the parish priest who comes to bless the house but who is not the same as always, and that social worker who, happened there for other commitments, looks at her daughter with too much insistence.
Finally there is that window that overlooks the courtyard, the one to which the daughter constantly tends, the one from which life, not sought, can enter your house without asking permission.
It is a story both poignant and disturbing that springs from the pen of Clara Sereni. A story that questions us, but gives no answers. And on the other hand, literature also serves this, to cross impervious themes with the illusion that the answers, somewhere, there are. An illusion, precisely, because in this matter the answers are never given, they must be imagined and constructed.
The UN Convention on the Rights of Persons with Disabilities, a lot of things has changed, not that it’s been applied, this no – very little of what is written has been implemented, but at least now there is a piece of paper of a certain importance which says that yes, human rights apply to persons with disabilities.
It was already written in the Constitution, to be honest, but in a less explicit, less detailed way. Now pretending not to understand is less convenient. Then it should be pointed out that there are rights that can be demanded, such as the right to study or work, and others that can “only” be recognized, respected and promoted, such as the right to be recognized as sexed subjects and to be able to express sexuality. These latter rights cannot be asserted against anyone and none, since sexual benefits cannot be claimed from third parties and the sex-economic exchange – which here in Italy is not prohibited, but not even regulated – has no legal cover.
The theme of the sexuality of people with disabilities is repeated cyclically. At the level of the media is often unbalanced on the claim of the service’s sexual, but that is conceived with mode ghettizzanti: it is not required for all persons who have sexual difficulties, but only for people with disabilities, as if only these were the custodians of these needs. In reality, a reflection on the freedom of the individual to dispose of his own body would require that before regulating the exchange of sex-economic function of a small group of users (people with disabilities), it regulated the matter as a whole, inasmuch as it sounds, because less bizarre to think to recognize legally a delicate aspect of individual freedom (to sell your own body) only if and for as long as it is functional for the needs of some people with disabilities.
Yet, regarding the sexuality of people with disabilities there would be much to be said and done, starting with the establishment of Psycho-Sexological guidance and counseling services on the issues of sexuality, affectivity and parenting specifically dedicated to them.
A” disability and Sexuality Service ” is already present in Turin, and is realized in two branches, one for people with intellectual disabilities, the other for those with physical and motor disabilities and their family members. Some projects are also promoted by associations of people with disabilities, but there is nothing organic and structural.
In this scenario, girls and women with disabilities are the most penalized. It is not difficult to find reports documenting the phenomenon. For example, EDF, the European Disability Forum, in March 2019 published the text entitled the rights of women and girls with disabilities in the sphere of sexual and reproductive health [Read More also in “Superando.it”, N. d. R.]. “Women and girls with disabilities-we read in a passage-have always been considered by society as individuals without sexuality (asexual) or suffering from hypersexuality and in any case not suitable to live with a partner and be mothers. This led to strict and repressive control of their sexual and reproductive rights. The management forced the menstrual cycle, sterilization and contraception, forced female genital mutilation and forced abortion are just a few examples of the denial of rights that many adolescent girls and women with disabilities suffer, without, however, having been able to give their consent or understand the reasons. Women and girls with high support needs, those with intellectual or psychosocial disabilities, women who are deafblind and those with multiple disabilities, and in particular those living in institutional settings are particularly vulnerable to such abuse. Women with disabilities are also rarely supported during their motherhood and encounter multiple barriers in accessing reproductive health services and adoption pathways.”
The same document does not fail to advance proposals addressed to the States, among which to ensure that there is no interference in the autonomous choices of women with disabilities on decisions that affect their body since these are personal and private; to ensure that women with disabilities are well-informed about their rights, and that any decisions are taken, in advance, with their fully informed consent: this statement also applies to termination of pregnancy: in this sense, States should decriminalize abortion in all circumstances and legalizzarlo in a way that fully respects the autonomy of women with disabilities; and still, to ensure the end of all forms of discrimination and abuse in both the sterilization of abortion or contraception, forced, is female genital mutilation that to incest; to ensure, finally, that all women with disabilities have full access to justice; to ensure that all women with disabilities have access to adequate sexual and reproductive education.
There is a passage of the text of the EDF, which deserves to be read with special attention, and it is the following: “To fully ensure the principle of autonomy of the States must repeal all forms of removal or restriction of legal capacity, and replace them with mechanisms to support people with disabilities in decision-making”. Perhaps this is one of the most difficult issues to accept, the fact that a system of protection has been built around people with intellectual disabilities, which in some cases is overwhelming.