”My name is Alessandro Manzella, a 34 year old man who is seriously disabled having had tracheostomy surgery. I’ve been paralysed and in bed for almost 23 years. For a few years even my blue eyes have turned off (I can no longer see) and my most faithful life companion is a respirator that keeps me company 24 hours out of 24.
I’m writing you this email so that you can participate in my crazy situation. I have been abandoned by everyone: by the institutions and by any organisation, of the town, of the State or of the Region with the job of preserving the wellbeing of the state of health of people with disabilities. There is no financial contribution paid to those who look after me with love, day by day, namely my parents.
My parents have both been through serious delicate operations: my dad has had tumours removed, my mum is cardiopathic and has had a heart operation. What do we have to do to get heard? How can we shout out our pain and our suffering?
How long do we have to wait before someone notices our situation?
All over the place there are journalists, politicians, newspaper editors and so on who are setting themselves up as champions of defenceless people. They make reference to the Constitution for the protection of the most vulnerable but then, who actually wants to do something, who really want to spend their time to make things better and more acceptable for the life that those of us with disabilities are obliged to live?
It would be great if Italians could get to know and participate in what happens every day in my bedroom from 7 o’clock in the morning until 7 o’clock the next day, and so on for days and weeks and years. In company with respirators, aspirators, sterilisers, oxygen machines and so on.
I’m writing this letter with the hope of uniting you to our chorus of voices with the aim of raising an appeal so that finally someone will help us.” Alessandro Manzella (manzella76@yahoo.it)

Interview with the Manzella Family

Anna: My name is Anna Manzella. I’m the mother of Alessandro Manzella. Alessandro is now 34 years old and when he was 12 years old he was struck down with a cancer called medulloblastoma affecting the cerebellum. The operation that he had at that time went really well, but after a few days, they discovered that while he was in the operating theatre he picked up a really rare infection, that is the germ called “Nocardia”.

Alone, every blessed day
Antonio: We start off every morning with washing, feet, legs, then the body and we have to do this every day.
Up until November last year, this was done by staff employed by the Local Authorities. One hour for two people because there’s the issue that one person on their own cannot move Alessandro, so two people are needed.
Anna: The gentlemen in white coats didn’t want to discuss this with other specialists who had already looked after people with this germ, because they had to dealt with it themselves and they handed Alessandro over to me like you see him.

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Rights and dignity denied
Alessandro: I am really angry because since November no one has come any more. Those who used to wash me haven’t come nor has there been a nurse. They are throwing mud on the Constitution. They are denying human rights.

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