“Non volevo morire vergine”, the sentimental education of a disabled woman

All of us have a more or less long list of books that, for any reason, have won a special place in our hearts. My personal list also includes “Non volevo morire vergine” (“I didn’t mean to die a virgin”), the last book by Barbara Garlaschelli, issued a few months ago and already (and deservedly!) a little literary success.

"Non volevo morire vergine"

The book tells the story of the writer, who became a quadriplegic when she was 15 after having bumped into a stone while she was plunging into the sea. Barbara Garlaschelli had already told her story in “Sirena (mezzo pesante in movimento)” (“Siren, heavy truck in movement”, a title that, in itself, suggests the self-deprecating tone the woman uses to describe her own condition, softening its hardest and more dramatic sides). But, this time, the perspective is quite different. In “Non volevo morire vergine”, Barbara Garlaschelli shares with her readers her sentimental and sexual education, which, soon after her accident, had seemed to her a chapter that, inevitably, was meant to stay close even being actually open.

Page by page, in “Non volevo morire vergine”, we follow Barbara’s evolution from her condition of “self-hidden” in her own armour to a young woman who becomes aware of the fact that, despite her accident and her being a disabled, still keeps her own femininity and, together with it, the possibility to please, seduce, stimulate desire and – why not?- even love in men.  So, she starts a series of more or less engaging relationships (there are also some asshole, as in everyone’s life, disabled or not), ‘til she meets her Love with the capital L.

Virginity Barbara wants (and succeeds) to get rid of isn’t just the strictly sexual one, but has a wider meaning:

“A virgin not just in my body, but also of experiences, life, mistakes, successes, failures, journeys, sun”

Barbara Garlaschelli tells everything using a light style, which invites to read, but without too much censorship. It, sometimes, can floor some readers, who have still, more or less consciously, a radicated taboo that sees disabled people (and, particularly, women) as beings who, at most, inspire pity, but sure don’t have, as the writer says, “right to physical and mental pleasure, joys of life, in all its declensions” (with everything it implies, also in terms of the incomplete fulfilment of serious policies about accessibility and inclusion).

What led the writer to share such an intimate part of her life through the pages of “Non volevo morire vergine” isn’t exhibitionism, but rather her will to transmit a strong message, not just addressed to the community as a whole, but also to so many people who, more or less voluntarily, renounce love or even, simply, pleasure, convinced (maybe, not just by themselves) they cannot be subject to it.

Barbara Garlaschelli: “Sensuality arises from our mind”

Barbara Garlaschelli

Picture by ©Giampaolo Poli

A few days ago, I talked to you about “Non volevo morire vergine“, the latest book by the Milanese writer Barbara Garlaschelli. In the surge of emotions raised by the book, I got in touch with her and she was immediately available to have a remote conversation with me for Move@bility. Here you have it!

  • First of all, I’d like to thank you for writing “Non volevo morire vergine”: a book that really tugs your heartstrings, and more. Why did you decide to put on paper in a book such an intimate part of your life?  Because I wanted to talk about the sex/disability taboo and, to do it, I chose autobiography to avoid stereotypes and to be able to personally account for what I wrote. Writing is also a matter of accountability and, when you deal with such a delicate subject, you can’t generalize: disabled people aren’t a “category”, but individuals, each one with his own story.  
  • Which part was the hardest to talk about? My father’s death, for sure.

"Non volevo morire vergine"

  • Reading your books, listening to your interviews and readings, an enormous energy and positivity emerge: where can we buy them? I’ve been a lucky woman: I’ve had two great parents, who taught me to live, struggling for my happiness, never backing down. Moreover, my attitude helped me: I’m determined and stubborn. I’m a curious woman and curiosity is a motivation which pushes you to see what’s going on tomorrow…
  • Let’s get into the subject of your book. Even reading some comments to your interviews in these days on social media, it’s clear that there’s an enduring “resistance” to seeing us, disabled people, also as subjects (and objects) of sexual pleasure. Why, based on your own experience, is it so hard to eradicate the taboo around sexuality (and affectivity) of disabled people and, particularly, of disabled women?  First of all, because we live in a Catholic country where sex is, tout court, still seen as a “sin”, something not to mention, if not in a low voice. We’re culturally underdeveloped, scared straight. Being a woman is the logical consequence of what I’ve said: women have to work twice as hard to show their value. Not just in Italy, unfortunately.
  • In your book, you also talk about some men’s embarrassment while confronting with you “from that point of view”: their absurd questions (“But you… there…?”), their awkwardness in the “physical” management of the situation, etc. Such experiences often end up discouraging from trying new approaches: how did you pass that block?  Joining the fray! Fighting against my fear of being rejected. Risking, that’s the only way to live: fear is the worst enemy, I was my worst enemy.
  • Some time ago, I read, on the Internet, the comment by a (theoretically, “able-bodied”) man who stated that “having sex with a disabled woman is always a crime, because there can’t be any consent”. Apart from the nonsense (except for people who are unfit to plead, of course), I had the opportunity to experience personally that some people, even without saying it, agree with it: how can we help them understand that it isn’t so (without bringing up a lawyer, maybe)? I wouldn’t go out of my own way to make such people understand anything. I’d prefer not to spend time with them, and I actually don’t.
  • What would you suggest to a disabled woman without any “willing” friend at her disposal to test her femininity or overtake a “block”?  No, I can’t give advices: everyone has her own road. If I really have to give an advice, it’s to take the risk and walk that road, which, for sure, is in front of every one of us. A “no” won’t kill you. If you give yourself a chance, “yes” will come as well.
  • You tell you’ve also used the online chats, to meet men. Nowadays, there are dating apps “for disabled people” and dating sites addressed to disabled people (and who “loves” them). To me, I have to admit it, they seem to be a little bit sad “ghettos” (even though I love the web, for “that” purpose I still prefer the good old, face to face approach, maybe arisen by chance). What’s your opinion? I think that they’re just another way to meet people. Clearly, there should be (if you want it, but it isn’t a “must”) a “live” meet and there you’ll understand whether you’re really interested in that person or not. But I’m not closed to virtual approaches: it’s just another way to meet, I repeat. It can be funny and even a good way to talk about yourself. You know, idiot people are everywhere, inside and outside the Internet.
  • In your opinion, does a woman who gets disabled during her life (for instance, during her adolescence, as it happened to you, or after) have more chances to keep the perception of her femininity (and the ability to show it to others), compared with another woman who was born disabled (or got it in her earlier years)? I don’t know, I can’t answer this question, since I can only answer based on my personal experience. I, without being aware of it, have always kept it.
  • The main “Move@bility” topic is accessibility, particularly with a physical meaning. How much do architectonical barriers weigh on the possibility to live and express your own sexuality and affectivity? A lot: the ability to move without issues is one of the fundamental things to fight for.  Italy is a total barrier. For who has movement issues, it’s like hell. And that forces a lot of people to stay close at home: it’s like living under house arrest despite being innocent.
  • Let’s end our chat with something more “frivolous”: how can you remain sexy even using a wheelchair or a walking stick, when high heels aren’t even an option, I mean? Personally, I learned to show what I think is beautiful, in my body. Then, you know, sensuality arises from your mind: you must feel sexy there.

Sexuality and disabled people: an enduring taboo

Do disabled people have sex or are, simply, interested in sexuality and in coupledom like the “normal” ones? If we only give a superficial look at the situation, in Italy and abroad, the answer to this question could seem negative. But, actually, things are “quite different”.

Lorella Ronconi

Lorella Ronconi (© Maria Vittoria Peccatori)

We’ll talk about it with Lorella Ronconi, Knight of the Italian Republic for spending her life to establish and protect the disabled people rights, including that to affectivity and sexuality. Lorella,  who is affected by a heavily disabling physical disability, has a solid working background in associations, non-profit organizations, local institutions, where she has put her typically Tuscan stubbornness at the service of the rights of who has no voice, fighting to remove architectonical and cultural barriers that still weigh on the life of millions of disabled people, not just in Italy.

– Hi, Lorella, and thanks for your willingness to have this chat. Would you like to introduce yourself to Move@bility’s friends? 

I’m a Tuscan 54 woman and, even though, since when I was 2, I’ve been living with a chronic genetic disease, I’m still in love with life. Thanks to my parents and to knowledgeable teachers, I was among the first disabled people in Italy who attended “normal” schools. My attitude and openness towards others have always led me to be personally committed to social work. I’m very keen on arts, poetry and web, particularly on social media, that I see as essential tools to overtake cultural barriers which still ghettoize us, disabled people.

– Let’s immediately get to the main subject of this meeting: disabled people and sexuality. Why is this topic still a taboo, in 2016?

At the bottom of the taboo there’s a view of the disabled individual as “sick”, while disability is, above all, a permanent condition (both physical or psychic). Generally, when I deal with this topic in public contexts, I use the following example: when someone is in bed with flu, it’s hard to see him as sexually desirable, so you only take care of him to help him getting over. Well, who sees the combination among disabled people and sexuality as a taboo looks at us, disabled people, as if we’d be permanently in bed with flu: then, woe betide seeing us as sexually desirable or, even less so, active! In the best case, they consider us as eternal children, by nature lacking sexual impulses and desires.

– For disabled women (and we’re well aware of this, since we’re both part of this category), this topic is even more “sensitive”, since it feels the effect of the same cultural legacy that, for centuries, has seen (and, in some cultures, still sees) woman as an “object” and not a “subject”, when it comes to sexual impulses. But is it so, actually?

The different way to look at the two genders is a fact among “able-bodied” people, as you said. Even when we talk about sexuality, we almost automatically think to the disabled man, as if we, the disabled women, didn’t have that need. Media also contribute to empower this opinion: there are still too fee movies, just to give an example, where disability, in all its facets, is described “from a female perspective”. But sexual impulse isn’t linked to the way we walk, see, hear: it’s naturally inside us as human beings, without any difference, apart from the “mechanical” part, among the two sexes, regardless of any disability.

-In your opinion, the advent of the sexual assistant is an effective solution and, if so, is it effective for both sexes? Does it satisfy the natural need for affectivity, besides satisfying instincts (that are natural as well, of course)?

Both for male or female disabled people, sexual assistant, alone, isn’t enough to answer, with a magic wand, all the individuals’ specific needs, even more so in such a delicate field as affectivity and sex. I think we lack a clear project, at a national level, to “design” this professional profile, that, as it is commonly considered, for sure answer more effectively the male “mechanical” needs. For women, it’s a little bit more complex – even at a “mechanical” level- in addition to our greater need for an emotional involvement. We’d need to establish a well-designed professional profile, able to fully answer the “physiological” and emotional needs (these are, for instance, satisfied by the “cuddle-therapy”) of disabled people, both men and women. Prior to the sexual assistant, we must train professional profiles such as care workers, consultants, psychologists and psychiatrists, so that they actually know that disabled people have also sexual and emotional needs to satisfy and can be ready to effectively answer these licit needs. On the contrary, nowadays, too often, the “problem is solved” prescribing bromide pills (which only inhibit libido) or transferring everything, once again, to families, with heavy psychological effects, for parents who have to satisfy their sons “physiological” needs also in such an intimate field and, when ask for help or advice, hardly find people ready to effectively answer their doubts.

– How important is the emotional and sentimental part, in the sexual life of a disabled individual (regardless of the specific gender)? 

It’s fundamental, since love is life, for everyone, including disabled people.

– Let’s try to figure out a scene: two individuals, a disabled and an “able-bodied”, together, in a “very lovely” attitude. In most of cases, people looking at them think they are friends, relatives or, at most, a patient and his/her caregiver/assistant. How can we make those that you effectively defined “dull people” understand that this is absolutely normal?  

We’re in the age of communication, so let’s use it! We need a lot of awareness campaigns also about sexuality, an essential part of the disabled people life, as it is for everyone else. We must “shock”, letting them see first-hand that disability isn’t the opposite of sex and laws of attraction, even towards the “able-bodied”.

– In your opinion, what can we do, under an institutional and cultural perspective, to promote a culture of real acceptance of disability as a condition not to pity, but to see as absolutely normal, overthrowing not only architectonical barriers, but also (and above all) the cultural ones?

Standing up for it, let other people see that we are human beings, not sick pets to take care of. Plus, commit ourselves to see the Convention on the Rights of Persons with Disabilities (signed by Italy in 2009) and the existing laws about architectonical barriers removal  followed, also allocating an adequate budget. But, above all, we, disabled people, must “act as a network” and go into politics, commit personally, together, to get an outcome. Only in Italy, according to ISTAT data, there are more than 4 million of disabled people, plus their relatives: we must “make noise”. We’re not invisible and we mustn’t be so, even when it comes to advertising and marketing: how long will we have to wait until a disabled testimonial appears in a “cool” brand commercial?

We’re looking forward to that! And maybe… Stay tuned!