A few days ago, in the Italian cinemas, came out “Tutti in piedi” (“All stand“), a French comedy that unusually approaches a topic that movies have confronted with many times, mainly in these latest years: love and disability.
What’s unusual in “Tutti in piedi”? First of all, that, somewhat, the tables turn. Jocelyn, the male character, is the typical irredimeable lady-killer, who tries to win every woman he bumps into over. It’s exactly this “predator” instinct that leads him to meet Florence, a charming woman living a very active life, as a refined musician and a tennis champ, who, due to a motoric disability, uses a wheelchair. He immediately falls in love with her and, due to a series of misunderstandings (Florence’ sister, who lives next Jocelyn’s dead mother, having found him sitting on his mother’s wheelchair, thinks he has a motoric disability as well) ends up feeling forced to keep on with his facade, being afraid that Florence wouldn’t accept him anymore, should he show her the way he really is.
A frame from “Tutti in piedi”
That precisely represents, in many ways, a “new” element in the narration of the “standard” dynamics among disabled and non-disabled people: it isn’t Florence who feels to be “unqualified” due to her own condition, but Jocelyn, who’s afraid she wouldn’t like him anymore, should she get to know the truth about him.
The director of “Tutti in piedi”, Franc Dubosc, who also plays the role of Jocelyn, said that the idea to make a movie about disability rose from his mother’s experience, who, in her old age, ended up being unable to walk anymore and having to face the numerous architectonical barriers that, until that time, neither she or her relatives had particularly noticed. From that experience, for the director, arose a new awareness and a growing curiosity towards the daily life of people with a disability, including their relationships with others. While making the movie, he realized that, as time passed by, his fear to hurt the disabled people feelings disappeared, as he kept on shooting. So, he came to the conclusion that, ultimately, you don’t need to pay particular attention while interacting (even for romantic purposes) with a disabled person: you just have to remember that you have a person in front of you, not a disease or a tricky condition.
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.
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.
“Inclusion” and “accessibility”, as I intend them, don’t just apply to transfers, removal of architectonical barriers, access to work. All these fields are very important, better essential, for a good life. But it isn’t less important, as we’ve stated many times, the chance to fully live also an aspect that’s too often underestimated (or totally neglected) of all the people life, including those with any disability: affectivity in all its sides. This is what “Diversamente Amore” (“Diversely Love”) is about. The show was broadcasted some days ago by Rai2 (and can still be watched for a few days on Raiplay.it), presented- better: narrated- by the paralympic champion Bebe Vio.
“Diversamente Amore” narrates, through the direct protagonists, the love stories of five “diverse” couples, that is with at least one of them having any disability. From their daily life, substantially, emerges a message: beyond the specific conditions of people (and the specific needs they imply), a disabled person (whatever the disability is) can love and be loved exactly like anyone else. Limits imposed by her disability condition don’t imply, by themselves, the impossibility to love, nor, even less so, to be loved… even by totally “able-bodied” people.
The idea “Diversamente Amore” starts from is, for sure, good. In a social context where, despite the progresses made in these decades, it’s still normal, for people with a visible disability, feeling as they have “all eyes on themselves” (and not to admire them…), being alternatively seen as “poor sods” to pity (or to avoid, or, in extreme cases, to persecute and use to pour out the worse instincts, as some sad chronicles recall) or “heroes” to be exalted for their “courage”, “strength”, whatever can remember that also who has a disability, beyond his own specific issues, faces exactly the same problems as everyone else (work, love stories, daily problems, etc.) is welcome. Also, the tone of voice used during the narration avoids (almost always, at least) pietism, which too often is typical of these experiments.
But… I don’t know what you think, but, while watching the show, I felt like something was missing. What? Well, for sure, picking just five stories to represent the multi-faced world of disability wasn’t an easy task. But, except for some secondary changes, situations and daily problems narrated in at least two stories were very similar, not to say almost overlayable. Maybe that’s why I’m involved in this, but it would have been nice to watch also stories which differentiate themselves from the die-hard stereotype “motoric disability = wheelchair”. Furthermore, it seemed to me that, also in this case, there was too much focus on the “heroic” side of the couples, their “courage” to get and stay together, both from the “diverse” and the “normal” part of them. That’s true: staying with someone with an “important” disability isn’t always easy. But staying with someone else, even when there’s no disability involved, isn’t always a bed of roses, with St. Valentine’s hearts and cuteness, is it?
An ancient proverb says: “Anything is better than nothing”. So, let’s take what’s good (and that’s a lot) in “Diversamente Amore” and hope that next experiments about this topic will increasingly show the normality of feelings, before the “diversity” among people who are linked by them.
Today, I’ll talk about an Australian 1998 movie that I found out about thanks to Lorella Ronconi, during our chat, some time ago. “Dance me to my song” was directed by Rolf de Heer, a director who, through his movies, gives often a voice to those who doesn’t have it. The movie tells a fictional story, but with many details in common with the real life of Heather Rose, a woman with a very severe disability, died when she was only 36, who wrote the script and interpreted the main character, Julia, a woman suffering from cerebral palsy who uses a speech synthesizer to communicate with the rest of the world. She is included into a project which promotes the autonomy of disabled people. So, she leaves the treatment centre she was hospitalized in and goes to live in a flat all for herself, helped by an assistant, Madelaine, who constantly humiliates and uses violence on her, both psychological and physical. But Julia’s life hasn’t just shadows. Counterbalancing Madelaine, there’s Rix, another professional assistant who, despite her not such reliable look, is able to perfectly empathize with Julia and, above all, treats her respectfully and, all in all, as an individual, rather than a patient. But, above all, there’s Eddie, Julia’s neighbour, who gradually establishes with her a relationship which goes well beyond friendship, causing Madelaine’s grudge and cruel revenge.
“Dance me to my song” is a hard movie, with intense scenes, which leave little or nothing to imagination. It also succeeds in clearly showing how, beyond their specific handicap, people with a (even severe) disability are still, in every way, people like the others, sharing the same instincts and wishes. And – surprisingly? – they can also look fascinating and even sexually desirable at “able-bodied” people’s eyes: the scene where Julia and Eddie make love is as much erotic as it would have been if, instead of a disabled actress, there would have been another corresponding to the classical standards of beauty and normality. Only Madelaine’s short-sighted and influenced by stereotypes view prevents her from understanding that there’s nothing “insane” in what she’s seen, when she took them by surprise.
A must-see movie, “Dance me to my song”, that can also help reflecting on another important topic: the right of disabled people to an autonomous life, being not just “objects” to take care of, but also, and above all, owners of their own lives, under every aspect.
“The theory of flight” is an English 1998 movie, starring Helena Bonham Carter and Kenneth Branagh interpreting the main characters: Jane, a young woman suffering from a severe neurological degenerative disease, and Richard, a penniless artist crazy about flight who ends up, due to a variety of circumstances, becoming her caregiver.
Their relationship evolves, in many ways, following the classical scheme of romantic comedies: after a beginning marked by some mistrust (after all, Richard has to take care of Jane as an alternative punishment for a petty crime, not by his choice), they discover to have more things in common than they had thought. What distinguishes “The theory of flight” from many other movies about disability is the direct approach used to deal with a subject which, still today, is a taboo for many people: disabled people sexuality.
“Many people don’t like walking near me”
“Because it implies friendship”
Jane, as a matter of fact, has a big regret: her disease got worse before she could experience her “first time”. She’s aware she won’t have a long time to live and doesn’t want to die a virgin, then she asks Richard to help her make this wish come true. Even though he is somewhat reluctant, the man accepts. They prepare this “event” taking care of any detail: they reserve a suite at a luxury hotel, she is dressed and made up to the nines, they hire a handsome and nice gigolo. But their attempt fails miserably: in the thick of it, Jane, overpowered by angst, cracks up and Richard, who meanwhile has come running to rescue her, takes her at his home.
Here he finds his ex-girlfriend, who doesn’t believe her eyes and ears when, introducing Jane, he calls her “his new girlfriend” and states they already had sex. In the end, both of them fulfil their respective dreams: after an as exciting as short flight on the biplane he had built (that inspires the movie title), Richard and Jane actually end up having sex.
“The theory of flight” is a delicate, but strongly evocative story, which demonstrates that, after all, disabled people wish exactly the same things as “able-bodied” ones: loving and be loved in return, as human beings, beyond their own limits and deficiencies (and despite them). Contrary to what she used to think, Jane’s wish isn’t experiencing sex, but, rather, feeling loved as a woman. And that’s precisely what she gets from Richard, giving him, in return for it, her joy to share that passion which has led him to be seen as crazy by everyone: the flight, which, in psychology, is strongly connected to the desire for freedom, overcoming obstacles and, precisely, sex.
There are books that leave you indifferent, others which leave a temporary mark, others which change your life. To me, the latter category includes “Me before you” by Jojo Moyes, a story about love and disability narrated with sensitivity, but with hiding the hardness of daily life for who has a first-hand experience of disability and for the people who stay near him, or at least try to do so.
The main characters of “Me before you” are Will Traynor, a young ambitious manager working in the London City who is quadriplegic due to an accident suffered while crossing the street, and Louisa Clark, a small-town girl who, due to a combination of circumstances, is hired as his “morale” assistant. Apparently, they couldn’t be more different. He, handsome, rich and successful, regrets the life he used to live to the fullest, at work, during his spare time, in his liaisons, and, being unable to accept to have lost it forever, has decided to terminate his own life in a Swiss clinic. She, a typical English middle-class girl, who has spent her life in the small town gravitating towards the castle, in the shade of her younger sister, who is pretty, smart and idolized by their parents, who, on the contrary, always holding against Louisa her mediocrity and lack of ambition.
Yet, the gears of fate lead them to meet, when Will’ parents hire her, despite her total lack of the skills needed to assist a quadriplegic man. But she won’t actually be Will’s assistant (for that, there’s another qualified man), but his “motivator”: they expect her to infect” him with her chat and enthusiasm and to lead him to give up his suicide plans. At first, their relationship is almost non-existent, due to her embarrassment and his scornful and insulting words. But, gradually, between them arises a complicity which, in everyone’s eyes, goes well beyond mere liking. She even convinces him to take a vacation in a dreamy place. But, when everything seems going toward the classic Hollywood “happy end”, with the two of them kissing on an exotic beach, reality fall again between them with all its unavoidability, ‘til the final I won’t unveil, should you haven’t read the book.
Will could have been happy, if he had been surrounded by the right people, if he had been given the chance of being himself, instead of the Man on the Wheelchair, nothing more than a variety of symptoms, pitiful
Then, what “Me before you” is? Just a romantic love story, with the added “detail” of his disability? A tear-jerking story for those who are willing to cry? No, it’s much more than this: a polyphonic story, to show the point of view of all the involved people, from Will and Louisa, to Nathan, the healthcare assistant, to Will’s parents, to Louisa’s sister. A story that tells the daily life of severely disabled people, their effort to live with their own condition and to accept to be dependant in every way from other people, their difficulty to be treated casually by those who, in the novel, are called “AB” (the “able-bodied”), the fear to let themselves go to feelings and be a weight or a limit for their loved ones, including companions (if any).
It’s also a chance to think about a subject that’s still a taboo: euthanasia and the right, for who has a severe and terminal disease, to terminate his sufferings in dignity. In the novel, all the aspects of the issue are analysed, taking into account the points of view of the involved individuals: the patient, the woman in love with him, his family, the doctors, the public opinion
“Me before you” isn’t an exhortation to suicide, to throw in the towel. It’s quite the contrary. It’s, above all, an opportunity for everyone to better understand the disabled people reality, their life, their fears and wishes. A chance not to miss at cinemas too, since in a few days the movie will come out. Meanwhile, I’ll start reading its sequel!
Do disabled people have sex or are, simply, interested in sexualityand 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”.
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!
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