On July 27th, I had the pleasure and the honor to take part as a speaker in the Job Factory organised by HRC Digital Generation during the third Italian edition of Campus Party, a global event focused on innovation and creativity and mainly addressed to young people, communities, universities, companies and organizations that, for some days, had the opportunities to discuss and build the future together, using technology as a tool to change tomorrow, in an aware and responsible way. The subject of the 2019 edition, that took place in Milan from July 24th to 27th, was “Diventa Div3rso” (Become Different): below, you can see one of the pictures used on social media to advertise the event.
Then, it was the best occasion to “officially” introduce Move@bility, particularly talking about di work and, therefore, social inclusion of people with a disability, wasn’t it? Here below, you can watch the video registration of my speech, that launches Movea@bility’s YouTube channel.
It was really exciting and valuable to have the chance to meet at Campus Party so many interested young people, who carefully listened to my speech and shared their views about such an important topic, that’s often overlooked even when talking about diversity. I hope I was able to spread the idea, that is also the Move@bility’s starting point: despite our respective diversities and peculiarities, we all are people and, then, have the same dignity, the same rights and, obviously, the same duties. Not only at work.
Would you like to have a look at the presentation I shared at Campus Party? Here you have it! 🙂
I hope to have further opportunities to discuss these topics with a “mixed” audience, not necessarily made up by people who are directly involved it them. Since I believe that a real “disability culture” can only be established involving the whole community, not limiting to look at our own backyard. What do you think about it?
Verona: the city of Romeo and Juliet, fascinating, rich in art, history and magic. How wonderful is walking around its streets, tasting its beauty, giving yourself a rest in a café or going shopping in its city centre… But is Verona accessible for who has mobility issues?Alessia Bottone and Valentina Bazzani tried to answer this question. They are, respectively, author/director and “sitting” main character of the short film “Vorrei ma non posso: quando le barriere architettoniche limitano i sogni” (“I’d like, but I can’t: when architectonical barriers limit dreams”), which describes a day in the life of Valentina, a disabled journalist, going around her city, Verona precisely, among architectonical (and cultural) barriers.
“Vorrei ma non posso” was presented in September and, since then, thousands of people have been watching it, including myself. Since I found it decisively interesting, I decided to get in touch with Alessia and Valentina to let them directly tell me how this interesting (and very useful!) project arose.
-How did the idea of “Vorrei ma non posso” arise?
Alessia Bottone
ALESSIA – I’ve been dealing since a long time, also for my job, with human rights and the direct experience of my family has led me to be particularly sensitive to topics such as autonomy and accessibility referred to people with a disability. Two years ago, I presented a draft of the film at the Massimiliano Goattin award for Young Journalists, getting a financing that allowed me to take action. Meanwhile, I had gotten in touch, through Facebook, with Valentina, reading a post where she told about the umpteenth work discrimination she had been subjected to. From virtual, we passed to real life (we both live in Verona and this made things easier) and started to film the documentary, together with Elettra Bertucco, who took care of shots.
-Which was the biggest issue you had to face while filming “Vorrei ma non posso”?
Valentina Bazzani
VALENTINA – Lots of architectonical barriers: from steps, that, for people moving on a wheelchair and having a limited autonomy like me, represent an often impassable limit, to the lack of ramps on sidewalks or platforms (even removable) to access shops and public places. Not to mention the lack of dressing rooms equipped with sliding doors in clothing stores: it, de facto, forces who is on a wheelchair to try the clothes in front of the other clients, regardless of our privacy… But, above all, cultural barriers: stereotypes and clichés about disabled people are still too entrenched in our country. I dream an equal opportunity life, so everyone must be granted with the same rights and opportunities, so that everyone can demonstrate his own resources, peculiarities and potential. Unfortunately, now, it isn’t so.
-What was people reaction while you were filming “Vorrei ma non posso”?
A. – While filming, not to influence them, we didn’t refer to the documentary, talking with involved people. Of course, we covered their faces with pixels, to ensure their privacy. The way the documentary has been welcomed has, frankly, surprised me: usually, when you deal with such topics, unfortunately, you find just a few people willing to listen to you. On the contrary, both during its presentation and in these months, we noticed a big interest towards the topic we chose: is it a sign that something is moving towards the right direction?
-What is still missing to reach full accessibility, that is urban spaces designed to be suitable for the needs of all citizens (including those with a motoric – both on wheelchair and not- or sensory disability)?
V. – As of now, to get the full accessibility we lack, on one hand, wisdom even during the designing phase, the effort to think spaces also like disabled people would do, or, when possible, directly involve them. But, on the other hand, we also lack the will, from the institutions, to create truly accessible environments for all, at least in public spaces. A lot has been done, but there’s still a lot to do. We disabled people can keep on creating awareness and become “active protagonists”, showing that, thanks to our commitment and our resources, we can live a normal life. It isn’t easy, mostly when, due to your own condition, you depend on someone else’s help. But we must do it.
-What has changed, after the documentary came out, in Verona?
A. – Verona was among the first Italian cities to adopt the PEBA, the Plan to Remove Architectonical Barriers. Sure, passing from intent to practice is slower than we’d like to, and the law vagueness doesn’t help: for instance, the paradox that, to equip your business with a removable platform, you must pay a tax to occupy a public area is, at least, a nonsense, isn’t it?
-How much do issues linked to accessibility weigh on the full (both social and work) inclusion of disabled people?
V. – After the middle school, even though I was keener on scientific subjects, I chose a technical school because it was the only accessible one. Over the years, things have improved: our community is more inclusive and there’s an increasing attention to spaces, to ensure they are accessible and comfortable. The biggest issue is, still, mostly cultural: we cannot accept, in 2017, that a disabled individual, a professional with an impressive resume, has a large amount of job interviews and is rejected just due to his disability! I fought so many battles to live a normal life, studying, getting graduated with top marks, collect working experience (for free), and then I’m rejected? No, I disagree! But we need institutions, associations establish a network and boost awareness, to create a really inclusive community.
Alessia and Valentina at “Vorrei ma non posso” launch event
Thanks a lot to these two wonderful women for having spotlighted again on a topic where we don’t do enough to translate intent into practice. Let’s hope to see soon the sequel of “Vorrei ma non posso”. Maybe, this time, the title could be: “I’d like… and I can!”
“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.
Some time ago, we already talked about the importance of sports for who lives with a disability, not just as a hobby, but also as a way to overthrowcultural barriers and facilitate the real and effective social inclusion. Also last year’s Rio Paralympic Games represented an important step towards that direction, demonstrating (if ever the need arose) that also who has a disability can be a champion in sports, under appropriate conditions. This principle is the basis of OSO – Ogni Sport Oltre (Every Sport Beyond), the project launched by Fondazione Vodafone Italia to promote and support projects and initiatives which, through sports, promote the inclusion of disabled people into the community.
As the official video of this initiative states more than once, the OSO code word is “Change your story. Disable your own limits”, since, as demonstrated by the stories of many celebrities (Bebe Vio, Alex Zanardi, and others) involved in this initiative, the difference is made also by our attitude, the way we look at our own disability and the decision “not to let it win” and find, however, a way to live our passions (not just those related to sports) with some “tweak”, but with the same intensity as the others.
What are you saying? It’s true and right, but passing from theory to practice is often difficult, if not impossible, firstly because it isn’t that easy finding info about what already exists, maybe just a few kilometres far from us? That’s the other reason why OSO website was built: there you’ll find not only the stories of those who “got it” or new projects to fund (also through crowdfunding), but also info and a map to search for the nearest sport structures.
So, no more excuses: are we ready to “disable our own limits”?
In these days, I watched the first two episodes “Speechless”, a TV series broadcasted a few months ago in the USA and now arrived in Italy (Fox broadcasts it on Sky platform every Friday evening). It’s a comedy, but with a particular not to undervalue: for the first time in this TV genre, the main character is a boy with disability (who, just like me, grew up in the ’80s-‘90s, will remember the precedent of “Life goes on”, the story of a family which included Corky, a boy with Down syndrome, but the genre was quite different). In this case, the main character is JJ DiMeo, a teenage boy suffering from a cerebral palsy, which forces him to use a wheelchair and prevents him from speaking (from here comes the comedy title) without the support of a device equipped with a keyboard and a laser pointer to pick numbers and letters and, this way, communicate with others.
There would be all the premises for a sad and tear-jerking story. But “Speechless” is quite the opposite: you often laugh, and even loudly. JJ’s “diversity” and his daily issues (the struggle of his scrappy mother, Maya, to ensure him the access to school from the main entrance and not using that reserved to garbage, in the first episode of the series, is unforgettable) aren’t hidden, nor underrated. But, first, from this series emerges the “normality” of JJ and his family. Yes, JJ is sick, has clear issues and, to do things that, for all of us, are granted, needs help from his family and his unlikely (but very funny) assistant- school janitor, Kenneth. But it doesn’t make him inferior to others, thanks to his caustic humour and bright mind.
But what I liked the most about “Speechless” is that, contrary to what they usually do on tv or in movies when talking about disability, here there’s no exaltation of the diverse “superiority”. Mind you: when he arrives in the new school, teachers and schoolmates try to welcome JJ in the spirit of the classic “politically correct”, dedicating to him a standing ovation without any reason (which leaves the boy quite perplexed, indeed). But, precisely, the reaction of JJ and his family (quaint characters, but who you easily grow fond of) floors everyone, letting them understand that, maybe, they’d better change their attitude.
The “Speechless” cast
Watching “Speechless, you almost end up not seeing JJ’s wheelchair and device, focusing on fulminating gags among the characters and, all in all, on the “normality” that emerges from it. Ultimately, as Kenneth immediately understands, JJ is a teenager like the others, in every way. His disability is just a condition like any other, not a mark.
Pay attention to this: most of the times, when media and politics talk about disability, the focus is, essentially, on two aspects, often counterpoised. On one hand, welfarism associated to pietism (“Poor guys, we must help them! “); on the other hand, what I call the “hero rhetoric”, which leads to describe and represent people with a disability as necessarily strong and brave, a “model” for everyone. There’s nothing wrong with it, let’s make it clear: after all, there are conditions which necessarily require assistance and, as regards the second point, it’s often true that, to face a disability and avoid staying stuck in a corner feeling sorry for yourself, you need to find inside you a lot of behavioural resources. We’ve often talked about “models”, such as the Paralympic athletes, as well.
But let’s try, just for once, to look at things from a different perspective. Except the cases when disability doesn’t allow the individual to look after himself and his primary needs, work, have a social life, why don’t we focus, rather than on welfarism, on creating conditions that promote the autonomy of disabled people? To say it borrowing an expression that’s very in vogue now, besides to “after us” (an indisputable topic, of course), why don’t we first think about “during them”, that is focusing disability policies (and the messages transmitted by mass media) on life, needs and licit expectations of people with disability? After all, that’s exactly the sense of the UN Convention on disabled people rights: focusing on people, rather than on their disability.Since, we’d better remember this, one of the biggest obstacles when dealing with disability is exactly the fact that there isn’t just one disability, but many disabilities and also people with similar disabilities can have very different needs.
Structures that assist non-autonomous or not self-sufficient people are welcome: it’s right they exist and they’re still not enough, above all if we think that the average age in Italy is increasing and we know well that, often, old age and disability are linked. But that’s not enough to say that “we’ve solved the disability issue”. Many of the more than 4 million of disabled people are individual who, based on their own conditions and age, are perfectly able to be autonomous, productive, active members of our community and not just “dead weights” or “issues” to solve somehow (maybe, hiding the in “dedicated” structures). Are we doing enough to answer the licit expectations of these people through effective policies aimed to inclusion (at school, at work, but also in the community tout court, as we never get bored to restate in this space), going beyond the mere welfarism? Sure, it’s important that there are invalidity allowances and similar stuff, but it’s even more important to enable who’d be able (despite his disability) to work, move, travel, removing architectural and cultural barriers.
That’s the only way, for us, to actually be and feel like people, rather than “poor sods” who someone from the top down gives charity to (not just in terms of money, assistance, but also of attention, time, love, friendship, affection, etc.). And it would also turn into an economical advantage for the entire community.
Some days ago, after the approval of the so-called “Milleproroghe” decree, a real frozen shower struck the hope of more than 70 thousand people with disability to see, finally, recognized (even though through the help of another law) a right that’s sanctioned, for everyone, by the 4th article of our Constitution: the right to work.
The Republic acknowledges the right for every citizen to work and promotes the conditions enabling this right. Every citizen must do, according to his possibilities and choice, a work or a job that contributes to the material or spiritual progress of the society
Should it be approved also by the Chamber of Deputies, the “Milleproroghe” decree would delay to January 1st 2018 the entering into force, for businesses with more than 15 employees, of the obligation to hire (whether they want or not to hire new employees) workers with disability, in order to avoid the fines established through the Jobs Act. Of course (and luckily!), the obligation to hire them in the percentage fixed for new hires would remain. But it’s clear that, a new delay of a stricter obligation would determine another obstacle to the real inclusion of disabled people in the world of work, with obvious effects on their acknowledgement as full members of the community.
There are businesses that, needing to hire new workers, aren’t influenced by their possible disability, but choose people according to their skills or background, taking advantage of them and enabling those people to fully contribute to the growth of the business itself. But these represent still rare, although very praiseworthy, exceptions, compared to many other businesses that, rather than hiring the (supposed) “dead loss” (the prejudice that the “protected categories” work less than others and are “always off work” is a die-hard), pay the fine or hire “protected categories” (no way: I really don’t like this expression…), even qualified, to make them work on low-level tasks or, as a matter of fact, impede their professional growth and career advancement.
In these years, I’ve often been contacted by businesses or staffing companies offering a work to me as a “protected category”, without taking into account my educational and professional background (that, luckily, includes qualifications and qualified experiences). When I ask whether they have read my resume or not, their reply is always the same: “Ehm… They look for a protected category… and you are!”. That sounds, more or less, like: “I’m offering you a job and you still complain?”. The sad side of the story is that this attitude is often common also among associations and institutions that should defend the right to work (and to equal opportunities in that field too) of people with disability: “They offered to you/ You’ve a job, what else do you want? You’d better look at who isn’t as lucky as you!”
Well, such an attitude cannot be removed only through laws, for sure. As Daniele Regolo, founder of Jobmetoo has pointed out, we need to work a lot on the disability culture, spreading everywhere the message that disability is just a condition and isn’t, itself, conflicting with the ability to work, even in responsibility positions (who says a disabled worker cannot move forward in his career?). But, waiting for positive outcomes from the work carried out also in this (enormous) field, laws must guarantee this right (not a “gracious permission”). But the “Milleproroghe” decree doesn’t go in this direction.
Since I’m keen on reading and Spain (particularly, Barcelona, with its magnetic fascination), could I have miss out the last novel of “The Cemetery of Forgotten Books” cycle by the great Carlos Ruiz Zafón? No, of course! So, let’s talk about “The Labyrinth of Spirits” … Are you ready?
Scarred by adversities of her own life, which forced her to come in close contact, since her earliest youth, with the darkest expressions of human soul (working at the controversial Leandro Montalvo’s disposal), Alicia is a “dark lady” ahead of her time, who faces the world wearing a mask made of indifference and invulnerability, convinced that she doesn’t deserve anyone’s love (because, after all, she is the first who isn’t able to love herself) and that, when meets people who she feels, in spite of herself, bonded with, the best thing she can do for them is getting away from them, to avoid exposing them to the depths she has, inevitably, learnt to live with. Despite it, Alicia is still a woman who doesn’t gives up feeling like that and being it to the fullest in front of others, when she always shows up wearing expensive and refined clothes and accessories, made up and well-groomed to the nines… and, obviously, equipped with a gun and with her own instinct, which never misses a shot and helps her to getting by even in the most complicated cases.
“The Labyrinth of Spirits” also tells (in an as much sensitive as realistic way) about Alicia’s fragility, even under a physical perspective, about the physical pain she lives with trying not to give up to the temptation to silence it stuffing herself with drugs. But that’s just a trait of her character, and not even the most important one, compared with her persistency, slyness, sensuality and attractiveness. It doesn’t often happen to hear talking about a disabled individual in these terms, does it?
An axiom is a “self-evident” principle which, therefore, doesn’t need to be demonstrated. This concept is recalled by the word “Axioma“, the title of the short film devoted to narrating disability and its practical and psychological effects on who lives this condition. The movie is produced by Village For All, which has been committed for years to ensure everyone the most suitable holiday, as its mission states.
In this case, the axiom is the story of the “Axioma” main character and of his life “before” and “after” the accident that deprived him from the ability to walk. The movie narrates his life, his feeling, first, a dead weight for his family and for the community, to the point that he decides to “imprison himself” before gradually getting to be aware that, despite the appearance, not everything was lost and he, just like any other individual, has the possibility to “reborn”.
“Axioma” starts from the assumption that disability doesn’t concern only a few “unlucky people”, but, somewhat, it touches anyone, contrary to what our culture usually tends to make us think. The movie doesn’t want to give a voice just to “disabled people in the strict sense”, that is who has a physical or psychical disability, but also to those who are outcast, victims of violence or bullying. The goal, as the commercial that launches the project claims, is to “break the prejudice barrier and enclose in a room without windows and doors the useless politically correct, to replace it with consistency between thinking and action”,aiming, on the contrary, to reach equality through love and friendship, in a journey that can be bearable for any individual.
But, you know, making a movie, promote and distribute it in cinemas (even though we’re talking about a short film), has a cost. For this reason, Village For All has launched a crowdfunding campaign, which will close at the beginning of March: to support the making of the short film, you can donate even one euro. But, obviously, donating more isn’t forbidden!
There are just a few days left ‘til the end of 2016 and preparations to celebrate 2017 are in full swing almost everywhere. As it always happens at the end of a year, everyone reviews the almost ended year and makes projects, resolutions and wishes for the upcoming one.
Let’s start with the analysis, obviously considering accessibility and disability culture in general. How was this 2016, under this perspective? A light and dark one, with some lights and still too many shadows. Among the first, for instance, the approval of the so-called “after us” law, even with all its limitations, the increased number (also in Italy) of accessible tourism initiatives and, on mass media, a higher level of attention to web accessibility, commercials, movies and TV series giving back a new perspective on disability, that pays a higher attention to individual dignity than to the disease itself, without forgetting the great success of the Rio Paralympic Games. And, last but not least, allow me a personal note: during this 2016, I, at last, launched this project that, even after just a few months, got me to know organizations, people and projects truly aiming to, if not revolutionize, at least improve disabled people’ lives.
But, as we said earlier, as we approach the end of the year, we cannot pretend not to see so many shadows clouding the sky over people with a disability: work, that, despite laws and incentives, is still a sensitive area; architectonical and cultural barriers that still condition too much the daily life of who deals with a disability, even under a relational perspective.
So, let’s open the “Resolutions and wishes for 2017” chapter: what do I wish, for the new year, for me and for everyone who lives with a motoric, sensory or intellectual disability? Here you have my very own “wishlist”:
More accessible cities and towns paying higher attention to everyone’s needs, not just during “special events”, and not just in Italy or abroad
More qualified job opportunities for disabled people, without bias about their ability, skills and productivity
A more inclusive community towards people with a disability, also under the sentimental and social perspective in general, since also we, disabled people, go out, have fun, fall in love (and not necessarily just “among us”)!
But, to make these wishes come true, acting individually isn’t enough: we’d all have to “act as a system”, work together to demand what we’re entitled to, without be happy with accepting to receive it “”by courtesy”. Since, for sure, it’s important to think about ways to help not self-sufficient disabled people who can’t rely on their family’ support, but it’s as much important to put on expedients and measures to improve autonomy and protect the individual dignity of whoever lives with a disability.
And what are your own wishes, for the new year? Would you like to share them in the comments?
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