My sister and I

By Alessandro Gwis; published in "Getting older: preadolescents towards autonomy”, released by AIPD Onlus in collaboration with ‘Comune di Roma’

I think I may declare with absolute certitude and serenity that the most important interpersonal relationship of my life has been the one with my sister. Livia has been the person with whom I have shared everything, she was my playmate and my accomplice during my infanthood. Since I am younger than her I have never lived through the difficulty, or even the trauma of having to accept the particularities of her condition. Of course I knew that my sister was not at all like the other kids, but for me there was nothing to accept or not to accept. That was the context for which I came into this world, and I did not imagine another. Probably siblings older than their brother/sister with Down’s Syndrome (in my family there are none because Livia is the firstborn) have a completely different way of dealing with their brother or sister. On the contrary, I may add that when it was clear to me (almost immediately) that Livia was different from the others my natural reaction was not to expect from anybody else a so-called "normality". I grew up having a very natural relationship with the peculiarity of every single person I met. I realise that in an “adult” logic this might sound an artificial intellectualism, but in my childhood it was absolutely spontaneous, and has represented a bit the keystone of my growth.
On the other hand what I found painful and tiring is how to behave with the "clinical-social" definition of Livia’s condition. I knew what Down’s Syndrome was, but I think only at the age of 14-15 I succeeded in admitting to myself that my sister had Down’s Syndrome in the strict sense of the word (and thus in the “public”, extra-familiar acceptance). In other words I had problems with the image that others – and I mean ALL others, except my parents – had of my sister. At a certain time in my adolescence it became almost an ultimate test: a person became my friend or not according to how he/she behaved towards my sister or towards handicap in general. Obviously with time this turned out to be a fragility that I could do without, also because it involved a definitely counterproductive hyper-protectiveness towards Livia. Living with the sense of responsibility to protect someone inevitably makes you not respect the capacity of letting them manage by themselves. Slowly I succeeded in moderating this discomfort, even if I am still intolerant (maybe often needlessly) regarding an attitude that I consider superficial with regard to Down’s Syndrome, as for example talking about the matter with pity or, which is often more irritating, the attitude of the one who wants to convince you (or maybe himself?) that the person with Down’s Syndrome is like others in everything and for everything, almost trying to deny that this person anyhow lives a problematic life. Obviously, and maybe there is no need to add this, I can’t stand hearing and have never accepted the word "Mongoloid" (maybe I have pronounced it 3 or 4 times in my life), especially for the aggressive meaning accompanying it.
In short, I do not feel like weighing up the pros and cons of my experience as a brother of a person with Down’s Syndrome, i.e. to establish if this has involved me in more or less suffering or given me a major or minor interior enrichment (this is a question they have often asked me); in reality I am not even interested in establishing it, since this has been my experience and I have never had another one. Anyhow I would say that problems have been created more from the outside than from the inside of my family; I also have to admit that the general attitude towards handicap, although being far from satisfactory, has definitely improved compared to the period of my infanthood (20-25 years ago). In those days a person with Down’s Syndrome lived almost hidden away, it was something to be ashamed about much more than in the last few years.

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