“The elephant man”: disability in Victorian London

Let’s go on reviewing movies that talk about diversity and, particularly, disability, with a classic filmed in 1980 by one of my favourite directors ever: the magnificent “The elephant man” by David Lynch,  inspired to the true story of Joseph Merrick (renamed John), a men suffering from the very rare Proteus syndrome,  which had severely altered his face and body. In the movie as in his real life, Merrick is discovered by chance by a famous doctor during a show, where he was exposed as a freak, exploiting his “monstrosity” to enrich his cruel exploiter. The doctor takes the man with him and, gradually, helps him to include himself into the community, giving him back the human dignity that, ‘til that moment, had been neglected and allowing people discover, beyond the “monster”, a sensitive and cultured man.

"The Elephant Man"

Of course, his story rapidly spreads all over London, even lighting on to Queen Victoria’s ears. She, moved by the story, sets up a trust, to fund his medical cares. Is everything fine, then? Forget it! John’s jailor succeeds finding and kidnapping him, getting back to exploiting him in his freaks circus. But the other freaks help him escaping and getting back to London. Here we see the most moving scene in the whole movie:  at the railways station, Merrick, while running to escape from the vexations by a group of kids, accidentally hits a baby girl and, for that reason, risks to get lynched by the crowd. But the man, to stop them, screams out: “I’m not an elephant! I’m not an animal! I’m a human being!”. Finally safe, again with the doctor who had already helped him, Merrick lives another “moment of glory”, attending a performance during which he is honoured with an ovation. Got back to the hospital the man dies, at last in peace and with his heart heated by the awareness of having had, during his life, at least a friend: the doctor.

The elephant man” isn’t a mushy tale indulging with pietism. Quite the contrary! David Lynch, with his dry and essential style, lets us understand how, going beyond the appearance of physical traits, we can catch the real essence of people, including “monsters” like Merrick. Evil doesn’t lie in who is “different”, but in the community, that, not knowing how to include him, marginalizes him for fear.

World Disability Day 2016

On December 3rd, we’ll celebrate the World Disability Day 2016, established by the UN in 1992 to keep the  focus on the rights and requests by people with a disability, who, today, represent over one fifth of the world population. This year’ edition, by the way, coincides with the 10th anniversary of the UN Convention on the Rights of Persons with Disabilities, so it will be the chance to take stock of the situation: how has the disabled people condition changed, under a social, civil, educational, work, medical and political perspective?

World Disability Day 2016_poster

This World Disability Day will focus on reaching the “17 Goals for the Future We Want”, that follow the sustainable development goals, launched and promoted by the UN, considered from the perspective of people who live with a disability:

    1. Fighting against poverty
    2. Fighting against hunger
    3. Promoting health and wellness for everyone at every age
    4. Access to a quality education
    5. Gender equality through women and girl emancipation
    6. Clean water and availability of hygienical-sanitary services
    7. Renewable and accessible energy
    8. Promoting employment and an inclusive, sustained and sustainable economical growth for everyone
    9. Promoting innovation and infrastructures
    10. Reducing inequality inside and among countries
    11. Promoting sustainable cities and communities
    12. Responsible usage of resources
    13. Fighting climate change
    14. Sustainable usage of the sea
    15. Sustainable usage of the earth
    16. Promoting Peace and justice
    17. Companionship for sustainable development

World Disability Day 2016 - goals

Ambitious, but fundamental goals, for everyone and, particularly, for people who, due to diseases or age, live with any disability and still, too often, are, as a matter of fact, excluded from the community, even in countries that would, in theory, be more advanced under this perspective, victims of bias and multiple barriers.

For the World Disabled People Day, all over the world, including Italy, there will be many scheduled events, workshops, conferences, other initiatives to remind everyone that disability is an essential part of the world we live in and, therefore, who has it must be protected and “included”.

Advertising and diversity: is something changing?

We’ve stated many times, here, that media are essential in the process of removing cultural barriers and establishing a new disability culture. While fields such as cinema and fashion are taking important steps forward, approaching disability, and diversity as a whole, in a way that overturns many stereotypes from the past, advertising is still almost totally closed to people with a disability:  except for the Pubblicità Progresso campaigns and the well-known commercial with Checco Zalone, how many other examples of advertising with disabled people come up to your mind?


That’s true, there are campaigns aiming to eradicate stereotypes connected to the “ideal” beauty concept (an example for all: the Dove© campaign for Authentic Beauty ), but there’s still another step forward missing. Yet, at least 1/5 of the world population, today, has a disability: why keeping on excluding those people from advertising, which, logically, would be supposed to reflect all the sides of the world we live in?

But something seems to be changing. In the USA, for instance, there’s a lot of buzz (also thanks a massive usage of social media) around Changing the Face of Beauty, an association which aims to push brands to use in their adv campaigns also people with Down syndrome.

changing the face of beauty

Pictures taken from the Changing the Face of Beauty Facebook page

And what about Italy? As it often happens, unfortunately, it takes a while for our country to adopt Eatalysuch inputs. Yet, something is changing in our advertising as well. For instance, the picture issued on the Milanese edition of the national newspaper “la Repubblica” on November 1st, to advertise Eataly Smeraldo, the Milanese location of the well-known franchise of “made in Italy” restaurants and food and wine shops: for the first time, among the others, there’s also someone with Down syndrome, who precisely works there. Then, it isn’t a pietistic representation of disability, but an accurate portrayal of reality: the girl, as her other colleagues in the picture, is there as a professional, not to “show a disabled person” (and give themselves a good conscience, maybe arousing some buzz).

The real inclusion of everyone can be reached not just granting equal opportunities to access work, education, mobility, but also seeing on the mass media all the aspects of our community, including disabled people, in their daily normality, which, on closer view, isn’t that far from that of any other one.


“Intouchables”: when friendship overcomes barriers

Is a genuine friendship between a rich quadriplegic man and a penniless caregiver living a dissolute life possible?  The answer given by “Intouchables”, a French 2011 movie inspired to a true story, is a determined yes.

"Intouchables" - poster

The story remembers, in some aspects, “Me before you”, at least at the beginning. Even here, the two main characters couldn’t be more different, at least superficially: Philippe, a noble rich man who is quadriplegic due to an accident while he was paragliding, looks for a new caregiver and, by chance, instead of a good looking one with good references, at last, the “winner” is Driss, a Senegalese man who has just got out of jail and needs to find a job to access the welfare program for himself and his family. After an “adjustment” period, they become friends, thanks to the fact that, in Driss’ eyes, Philippe isn’t just a patient he has to take care of, but, above all, someone he can talk to, have fun doing crazy things together  (for instance, the ride on a custom-built car and the lie they tell the policemen who stop them), confront each other, talking about music, etc. Driss also succeeds convincing Philippe to open his heart to feelings again, spurring him to take care of his teenage daughter, but also to give himself a chance with Éléonore, the woman Philippe has been having an epistolary relationship with since a long time, without having the guts to meet her in person.

Intouchables” has far more than the old, well-worn tale about the relationship among disabled and “able-bodied” people. Philippe and Driss, ultimately, in people’s eyes, due to different reasons, are both “untouchable”, and maybe that’s an additional reason why they can easily get in tune with each other and, in the end, reciprocally changing their lives. In conclusion, in my opinion, it’s a movie that deserves all the (many!) awards it has won: it’s worth to watch it (again)!

“Dance me to my song”: a movie about disability, autonomy, feelings

"Dance me to my song"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.

Is the commercial with Checco Zalone truly “unfair”?

In these days, there’s a lot of buzz around the commercial with Checco Zalone for the fundraising to support the research about Spinal Muscular Atrophy (SMA), promoted by Famiglie SMA no-profit organization.

Contrary to what usually happens in this kind of initiatives, the commercial with Checco Zalone doesn’t use pietistic tones, but leverages something the Apulian comedian is famous for: his ability to be desecrating. In the commercial, Zalone complains about his neighbour’s excesses. What’s new? The neighbour he’s talking about is Mirko, a kid with SMA who’s just moved to the building, forcing Zalone to modify his own habits: he loses his parking spaces, gets late at work or misses his flight because, due to architectonical barriers, the kid’s father has to do thousands of manoeuvres to enable him getting from the car to home and vice versa, can’t sleep because Mirko plays ‘til late with videogames, etc.

Mirko, in the commercial, isn’t described as a “poor guy” to help for pity, but as an “obstacle”: Zalone decides to fund the research wishing that, this way, Mirko gets better and sets him free from the issues he causes.

Famiglie SMA - commercial with Checco Zalone

Does it mean that the commercial with Checco Zalone is “unfair”? In my opinion, it’s exactly the opposite. Because it’s exactly this way we’d have to look at disability: enough with a limited-time compassion (which, very often, doesn’t change anything), welcome “normality”!

We don’t have to support the scientific research due to “pity”, but to help people that, for the better or for the worse, are exactly like everyone else. Then, maybe, also to “selfishly” solve a problem. The same approach should be adopted when looking at architectonical and cultural barriers,  that daily limit the life of many people, both disabled and not: their removal wouldn’t have to be a “courtesy” towards to people or categories to feel sorry for, but the outcome of the awareness that, without them, the world we’re all living in would definitely be better. For everyone.

Rio 2016 Paralympic games: an analysis

Rio de Janeiro’s Paralympic Games, the 15th in the history of this event, have just ended and it’s time for an analysis.

Moved to Brazil with more than 100 athletes, the Italian team comes back home with very gratifying outcomes: 39 gained medals (10 gold medals, 14 silver medals and 15 bronze medals) that, for the first time in the last 20 years, allowed Italy to enter the final top 10.

An outstanding outcome, resulted from the commitment, the talent and the moxie of extraordinary athletes, who kept thousands of Italian people stuck in front of TV and computer screens, won over both by the sport achievements and the irresistible human touch of people such as Bebe Vio, Alex Zanardi, Federico Morlacchi, Martina Caironi, Alvise De Vidi, Assunta Legnante, etc. Many men and women, each one with his (or her) personal and sport story, who gained, day by day, an increasing space on traditional and new media, too.

The attention paid to the event by TV, newspapers and web is one of the most positive outcomes of this edition of Paralympic Games. RAI ensured an excellent coverage to the whole event, using both RAI2 and RaiSport (both channels are visible for free), plus its web streaming service, to give room not just to the achievements of Italian athletes, but also to the most important matches of sports where no Italian athlete was involved. “Gazzetta dello Sport”, the most important sport newspaper in Italy,  reserved an entire section of its very visited website to the Paralympic athletes’ achievements, exalting their outcomes, not only under a sport perspective.

But, besides the space reserved to Rio Paralympic Games, in my opinion, the most relevant aspect is the tone of voice used to narrate them: no lamenting tones, no obsessive focus on the athletes’ specific disabilities. Above all, the focus was on their sport achievements, giving prominence to their personality. I’ll never forget Bebe Vio screaming soon after having won, at her very first participation in Paralympic Games, the gold medal in foil: the (very justifiable) jubilation of a 19 years old girl who is aware of having achieved an important outcome. Nothing more, nothing less.

I wanna thank all the athletes for these days full of intense emotions, which I strongly hope will have positive effects on the daily life of all the disabled people, not just in Italy.

See you in Tokyo in 4 years: will Alex Zanardi be there as well? Maybe…

Interacting with disabled people: what’s the right way?

What’s the right way of interacting with disabled people? How to talk to them? The answer to these questions may seem obvious, but several (both personal and not) experiences make me remember that it isn’t that expected, after all…

I’m taking the cue from a scene I saw yesterday. Two adults, in the waiting room of a rehabilitation unit: an “able-bodied” woman and a man with a severe disability due to a stroke.  The “able-bodied” woman, mother of another patient, talks to the disabled man (who, in addition to using a wheelchair, is also aphasic, therefore can hardly articulate meaningful words, but is perfectly alert and aware of himself and others), using words and a tone of voice that would have been more suitable for a dialogue with a baby rather than an adult, as is the person in front of her, without forgetting to tenderly tickle his head, while they talk. As the man goes away, the woman starts talking endlessly to me (I was waiting to start my session as well): “How sweet is Charles (it’s a fancy name, of course!), isn’t he?”. I hold my tongue not to answer impolitely: after all, she is a kind woman, who has spoken in good faith. Before she’s able to keep on talking, my physiotherapist calls me, and I mentally thank him…


Would I have had enough time and the chance to leisurely answer, here is what I would have said. No, my kind lady, I don’t think that “Charles” is sweet. I don’t think he wants to appear like this, too, when he tries to chat with other people. He is an adult man who, after a perfectly normal life, by chance, ended up to fully depend on others, without being able to speak correctly to express his feeling and needs, if not at the cost of a huge effort (and a lot of discouragement, seeing the confused look of who isn’t used to deal with an aphasic individual). I don’t think that “Charles” (or any other disabled person, starting from myself) is “sweet” or must be necessarily called this way. Not because we’re ugly, dirty and evil (sometimes, we’re that way too, as everybody else, after all). Simply, because we aren’t puppies, nor cuddly toys, but people.

How many of you would talk to an “able-bodied” adult acquaintance as if he was a 2 years old baby, tickling his head and calling him “sweet” while talking about him with others? Nobody, I’d say. So, why would you feel to be entitled to do it with a disabled person? Why can’t you simply talk to her as she is, that is an adult in sound mind, even though she has movement (or other, based on her specific disability) issues?

interacting with disabled people

Even though you’ve your heart in the right place, you’d better remember that this way of interacting with disabled people is as wrong as discriminating and fooling them (even though, apparently, it does no harm, but the opposite!). It’s just like, somehow, refusing to recognize to those people the same dignity as others, simply due to a more or less temporary “diversity” condition.  Similarly, it terribly hurts hearing others saying (with a smile on their lips and sincere admiration): “Well done! Despite your disability, you’re very capable!”. What’s strange about that? Why do you always and forever need to emphasize that “despite”? Have you ever told someone who’s tall, short, fat, slim, dark or blond haired that, “despite that”, he is very capable?  What has somebody’s success (and failure) at school, work or in any other field to do with a physical trait of his?

Maybe a disabled person, during her life, had to show her personality more than others, to face daily challenges and reach her goals. But who says that, for that reason, she thinks to be (or wants to be seen as) “super” and not, simply, just like anyone else?

Then, here we are. If you ask me what is, in my opinion, the right way to interact with disabled people and, specifically, with me, my answer is: treat me like a person, the rest follows.

Rio 2016 Paralympic games: a new way to look at disability

After the suggestive opening ceremony which took place last night, today the challenges of the Rio de Janeiro’s Paralympic Games, the 15th in history, quicken. ‘Til September 18th, more than 4.300 athletes from 176 countries will test themselves in 23 disciplines. Italy presents itself with 101 athletes, among who stand out, just to mention some of them, Martina Caironi, Beatrice “Bebe” VioAlex Zanardi, Monica Contrafatto, Giusy Versace, Giulia Ghiretti.

The value of Paralympic Games goes well beyond sports, since, as the athletes themselves underlined, they represent an opportunity to spotlight on disability, contributing to establish that “disability culture” which still struggles to get fully understood and accepted.

Rio Paralympic Games 2016But Paralympic Games are also an opportunity to reflect on the way Paralympic athletes are presented and seen. Mostly starting from London 2012, it- luckily- seems that we’ve finally overcome the “pietistic” view that had been almost dominating for decades: Paralympic athletes aren’t “minor”, but respectable athletes who train, compete, break records, etc.

Nevertheless, in my opinion, there’s another risk, just around the corner: I call it the “supermen rhetoric”, which refers to, starting from its title, also the suggestive video created by the English Channel 4, that broadcasts Paralympic Games in the UK.

Is it right to look at Paralympic athletes as “supermen” (and “superwomen”) just because they compete facing, in addition to their competitors, also more or less severe physical or sensory disabilities? Is it of use to the disability culture cause (for all, not just for Paralympic athletes) look at the mas “superheroes” or inspiration or it risks, on the contrary, to create an additional barrier among us, disabled people, and the others, the “abled-bodied” people?

Tom, the mascot of Rio Paralympic Games 2016

Wouldn’t it be, maybe, more right (and useful) to describe their sport achievements, exalting them as they deserve, but avoiding to mention their supposed “superiority”? sure, it’s indubitably useful to who daily deals with any chronic disability to see other people sharing his own condition (or a more severe one) who, instead of feeling sorry for themselves, put themselves on the line, challenging their own limits. But isn’t challenging their own limits exactly the same thing as able-bodied athletes do? Why do we need to underline this just for Paralympic athletes?

I’ll never grow tired of repeating this: disabled people aren’t better nor worse than anyone else. Disabled people are, above all, people. And they’d be described as people.  Will it happen in Rio 2016, too?  We’ll wait and see and, of course, support our teams!


Talking about disability: words matter

Talking about disability can still be often difficult, today. When dealing with this topic, you face embarrassment, discomfort, as if, even just pronouncing “that” word you could bring bad luck upon yourself.

For centuries, people thought that disability (and diseases in general) were, somehow, linked to a “fault” by who was affected by it, a sort of stigma marking someone to keep away. This resulted in the almost total social exclusion of disabled people, hidden by their families (or thrown out of their own home), as if they were a “stain” to hide from the community.

Nowadays, luckily, this prejudice has been largely overcome, at least in the most culturally and economically advanced countries (it’s not by chance that these two things generally go together): there are laws ensuring equal dignity and rights in all the fields to disabled people, from work to personal and private life, there’s a growing awareness about accessibility and need to invest more resources on it for the benefit of the entire community.

Talking about disability

Nevertheless, there are still unfair, and often (even accidentally) offensive habits, when it comes to talk about disability or, even more, deal with someone affected by a disability, both motoric, sensory or psychic. Pity (not intended as the Virgilian pietas), discomfort, inappropriate question even from perfect strangers (“What do you exactly have?”, “Why do you walk this way?”, “Isn’t there anything you can do to…?”), tendency to look at disabled people as if they were children, even though they’re adult. But also, levity, habit to use terms associated to a condition of disability (e. g. “handicapped”, “spastic”, “mongoloid”, and so on) as insults, to deride someone else’s physical or cognitive traits, or to consider a motoric or sensory disabled person as she was necessarily “retarded” (here we have the insult again…) or, however, losing her marbles.

How can we overtake all of this and establish a correct vision, a real disability culture? Two answers come up to my mind for first: school and media.

diversityChildren have a natural inclination not to discriminating the “diverse” ones, unless an adult they trust teaches them to do it: we all have seen children different for culture, race, conditions playing together without any issue, because what they see in the other one is simply someone to play with, not a stranger, a different skin colour, a disability. It’s essential that school helps strengthening this natural inclination to include, promoting continuous exchanging, living together and sharing among able-bodied and disabled children.

mass mediaAlso mass  media can and must have an important role in establishing the disability culture, first of all using the right terms and manner when talking about disability: less “pain TV” and disabled people shown as they were caricatures or freaks, more disabled people in tv shows (even as presenters, in addition to being hosts or spectators, why not?), in movies, commercials, on glossy magazines’ covers and in TV series. Not necessarily as the “poor sods” or the “heroes”. Nor as the “good guys” by definition. We can’t take for granted that a disabled person is good, generous, helpful with everyone or, in one word, better than a non-disabled one. Disabled people, just like anyone else, can also be “asshole”, bad, vindictive, selfish and more.

Simply because the disabled people are (precisely) people, with qualities and lacks, as everyone else. People who live a particular condition, for sure. But people, not better or lesser beings.