martedì 21 settembre 2010

To Dave Hingsburger: From my blog to yours

I am a fraud! Well at least I feel like a fraud. Let me explain. I broke my leg almost one year ago; a very simple fall in the back yard that had me in the hospital for a week for an operation to put a pin in my tibia bone. A very simple run-of-the-mill operation that should have had me on my feet and running by now has instead turned out to be a long drawn out process. Without going into detail, I can walk carefully without crutches, and that is really the only way to move at home if I have to get things done, but … the pin is now sticking out of the tibia, so straightening, bending or rotating my leg at the knee is to be avoided and the orthopedic specialist has recommended using both crutches if I have to really walk anywhere.

And this is where I feel I have been unintentionally deceiving people. We were in Paris last weekend to celebrate a birthday and went to see the Louvre. We were prepared for a long wait to get in at the ‘Pyramid’ and having already spent an entire day ‘crutching it’ to see the sights the day before, I was not really fazed at the idea of a 20 minute wait leaning on my crutches. We had only been in line a few minutes when a museum staff member came over to tell us that we should be going straight to the head of the line where there is a special entrance for disabled people. Am I disabled if I have to use crutches? Don’t get me wrong, I really have no problem being labeled disabled (and indeed I have used the fact of my crutches and broken leg as a take off point for discussion about disability with the kids at my son’s school), but I had walked/hopped literally kilometers the day before and didn’t see why I needed any special accommodations to skip the line at the Louvre. Of course I thanked the man graciously anyway and we did go ahead; it didn’t seem right to make a big issue out of it.

Why should a person who has a temporary or even permanent disability but does not feel disabled, have to be considered disabled all the same? What about Aimee Mullins, actress, model and athlete who is a bilateral below the knee amputee. In an interview with CNN a few months ago she stated that people tell her all the time she doesn’t look disabled and she replies that she doesn’t feel disabled. I asked the kids in my son’s class (Zacky is 10 years old with Down syndrome and in Grade 5 in a regular elementary school in Northern Italy) whether Aimee Mullins is disabled. They were initially hesitant and looked hard at the full length color picture of her in an article in the Italian version of ‘Wired’. Now, these kids are no fools; they knew I was there to talk about disability and diversity in general but they just couldn’t figure out what could be ‘wrong’ with her. So I told them about her legs and the super technological prosthetics she uses and how she lives a full life pretty much without any physical limitations due to her difference. And then I asked them whether they thought she was disabled. While a number of them did say no, surprisingly, even after looking at a dictionary definition of the word ‘disabled’, there were two or three that very adamantly said they thought she was. I should make it clear here that the point of the whole discussion was to get the kids to go beyond visual judgments of people that have an obvious physical difference and make them realize the futility on a social level of trying to classify people as disabled and non-disabled.

One final anecdote. A few years ago, I heard an exchange between a woman that organizes events related to disability issues and a woman with Down syndrome who had not had the opportunities that the current generation of kids with DS has, and never learned to read and write and now has only fairly limited skills; a person that by some might be considered ‘low functioning’. The first woman mentioned to the woman with DS accompanied by her sister that perhaps they would be interested in attending a certain conference about disability that was to be held. I was within earshot and smiled with satisfaction when I heard the woman with DS mutter under her breath (and I translate): “I’m not exactly disabled, you know!” as if to say, what are you telling me for?! She doesn’t feel her limitations. She lives a happy life with her sister and is apparently content with her lot in life. She doesn’t consider herself disabled, so why should we?

giovedì 2 settembre 2010

Uno di quei momenti

Era decisamente uno di ‘quei momenti’. Zacky si è accostato con esitazione a suo papà che era crollato nella poltrona lottando per tenere aperti gli occhi dopo una lunga giornata di lavoro in giardino; cercava di rubare qualche momento alla fine della giornata per guardare il suo programma preferita su Sky prima di essere soprafatto dalla pesantezza del sonno. Zacky si è messo pian piano in braccio a suo papà e ha poggiato la testa sulla sua spalla piantando un bacio sulla sua guancia irsuta, per la barba un po’ lunga, accarezzando le sue palpebre con delicatezza per chiuderle. Ha sussurrato con dolcezza: “Ssssss… chiudi gli occhi, adesso dormi…” Difficile non soccombere a quella guancia morbida e la dolce carezza, offerte con tanta innocenza. Dopo un attimo, quando Zacky aveva accertato che suo papà stava effettivamente russando, è scivolato via dalle sue braccia afferrando il telecomando della televisione esclamando in modo trionfale: “preso!”

Sì, era davvero uno di quei momenti … uno dei momenti in cui ti colpisce nuovamente il pensiero che il figlio decenne con la sindrome di Down non sarà la persone facile da manovrare che avevi immaginato! Faresti meglio a stare attento – sarà una forza temibile!

One of those moments

It was definitely one of those moments. Zacky sidled up to his dad slumped in the armchair struggling to keep his eyes open after a long days’ work in the garden, trying to steal a few moments at the end of the day to watch his favorite program on Sky before the dead weight of tiredness overcame him. He slipped onto his dad’s lap and rested his head on his shoulder planting a soft kiss on his stubbly cheek, gently stroking his eyelids closed. He murmured softly: “Ssssh… chiudi gli occhi, adesso dormi …” (trans. “close your eyes, sleep now”) Hard not to succumb to that soft cheek and gentle caress proffered so innocently. After a moment, when Zacky had determined that his dad was indeed snoring softly, he slipped out of his dad’s arms gripping the remote control for the TV and exclaiming triumphantly: “preso!” (trans. “got it!”)

Yes, indeed, it was one of those moments … one of the moments when you are reminded that your 10 year old son with Down syndrome is not going to be the pushover you thought he was! You’d better look out -- he is a force to be reckoned with!