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Dopo di Noi - When We Are Gone

Based on the latest ISTAT data (2014) the percentage of disabled people in Italy is around 5%. The amount of money spent on social healthcare is one of the lowest in all of the EU (5,8% compared with the 7,7% average in the EU zone). Often behind a disabled person there is a family that daily takes care of majority of the relative’s needs. The same family also lives in a complete uncertainty about the future of their beloved.
The parents of a disabled person live in the terrible situation of not knowing what will happen to their son or daughter, once they will no longer be able to take care of him or her, not only physically but affectionately.
Affection is a crucial aspect of life for all human beings, even more so for disabled people, who might experience difficulties in just interacting with other people.
What will happen to my child when I’ll be gone? This is the yet unanswered question of tens of thousands of disabled people’s families in Italy.

  

Maria's bedroom - Tonina is a woman in her 50s. At the age of three she was diagnosed with muscular dystrophy.

AntoninaAntonina

Tonina’s father died when she was just six months old. Since then her mother, Maria, has been taking care of her.

  

Tonina is a woman in her 50s. At the age of three she was diagnosed with muscular dystrophy.

  

Her daily life is mostly made possible by her elderly mother.
Even something seemingly easy, like going to the toilet, takes many minutes of preparation.

  

After lunch, Maria prepares the toothpaste already on the toothbrush for her daughter as she doesn’t manage to do it by herself.

  

Maria is very worried about her daughter’s future. “I’m worried ‘cause I don’t know who will take care of my daughter when I’ll be gone”

  

Before sleeping Maria massages Tonina's feet to help the blood circulation.

  

To get out of the bed, Tonina needs a tool called “giraffe” or “horse”, that literally lifts her up in the air.
All the operation is possible only with the help of her mother.

  

During the night Tonina calls her mother many times, as she needs to be helped in rolling from one side to the other. To make this operation easier, a sheet under her is pulled in one or the other direction of the bed.

  

Since few years Tonina has a boyfriend, who’s slowly learning to take care of her needs.

SeanSean

Sean is 19 years old and he’s autistic.

Autism is still a relatively unknown disorder, and the treatment for it remains, for the most part, experimental.

  

Even after divorcing, Nando and Grazia together continue to contribute very much to Sean’s quality of life.

Walks, trips, and activities keep Sean busy and help him to avoid isolation and solitude, things that make him feel worse and harder to control.

  

Sean doesn’t feel the need of going out or doing something other than being on his own.

As an autistic person he has many difficulties in dealing with feelings and emotions. For example, when he watches cartoons on the iPad, he often laughs out loud for no apparent reason, gesturing with his hands and head while imitating the noises of the cartoon.

  

Sean lives in Bergamo with his mother and sister during the week, where he attend the artistic school.

Walks, trips, and activities keep Sean busy and help him to avoid isolation and solitude, things that make him feel worse and harder to control.

  

Together with his father Nando, Sean attends karate lessons. This kind of sport activity is really helpful for controlling better his body and more is a way to socialize with other teenagers.

FlavioFlavio

Flavio lives with his mother, Vanna. His father died a few years ago. Together the two parents were able to take care of their “big boy”. Flavio is indeed almost two meters tall.

  

Since the loss of his father, there was a necessity to have someone help him in his everyday activities, going to bed, waking up, showering, going to toilet, so they hired a caregiver who’s there for Flavio day and night.

  

Flavio is a man in his 40s. His life was like anyone else’s, until the age of 27, when he was diagnosed with muscular dystrophy.

  

Only a small part of the expenses for Flavio’s healthcare are being paid by the State.

  

When the weather is nice, Flavio likes to spend some time in the open air in the garden. He requires a respirator that helps preserve the muscles in his lungs, severely affected by the disease.

  

Because of the early stage of the disease, Flavio still manages to drive his truck, specially modified for him. So almost every day he takes his elderly mother to the city center to run errands.

  

Vanna is worried about her son’s future: “I hope that someone will take care of him when I won’t be able to, if not in the way I do, at least in the way to give him a decent life”

  

Living in a familiar environment can be a big help for people with disabilities. Staying in contact with friends and loved ones is as important for the mind as the therapies are for the body.

FilippoFilippo

Filippo is a young man on his 30s. He’s affected by a rare disease called fragile x syndrome. Filippo is like a baby in an adult’s body.

  

Mariarosa and Mariano care for their son since his birth. Their respective families have left them practically alone to deal with their son’s disease. Mariarosa tells that, despite living next to relatives, none of them has ever offered to take care of Filippo. Not even for a few hours, to give the parents the freedom to have a night out as husband and wife.

  

A disable child needs many more attentions than a normal child and for a longer period. All this can affect the relationship between the two parents leaving no time for them as husband and wife.

  

Filippo spends many hours a day lost in his thoughts, doing things that keep him calm. One of these is to watch the washing machine spinning

  

Filippo spends many hours a day lost in his thoughts, doing things that keep him calm. One of this is to listen at the voicemail in a loop.

  

In the morning, Filippo and Mariano have breakfast together, before he gets ready to leave and spend some hours in a center, where he gets to perform some manual activities that keep him busy.

  

Filippo’s personal hygiene is something that his parents take care of regularly. Filippo showers daily with his dad, who also brushes his teeth and washes his hands.
In case of a dental problem, Filippo would have to undergo a complete anestesia, as he wouldn’t be able to stay still even for a few minutes.

  

Mariarosa often talks about the difficulties they had to face as a family. Mariano had to give up his career as a policeman, refusing to move far away from the family. Mariarosa has dedicated all her life to look after her son.
Their relationship has suffered a lot from Filippo’s condition, because he needs their full attention. The lack of State presence on the issue also prevents them from having any time to themselves.

“Filippo sleeps in bed with me since few years ago, otherwise he would be waking up every hour, so my husband sleeps on the couch” says Mariarosa.

  

Filippo spend few hours every day in a center where he can practice manual activities that keep him busy

  

Filippo doesn't feel any need of doing things during the day. The parents then try to involve him in their daily activities as no not let him sitting for hours on the couch.

  

Filippo doesn't feel any need of doing things during the day. The parents then try to involve him in their daily activities as no not let him sitting for hours on the couch.

  

“We must learn to be satisfied with our life, and hope that someone will take care of our son when we won’t be able to anymore” says Mariarosa. Families of disabled people are often left alone from relatives in caring about their child. “We had to fight against our family’s prejudices constantly. Our relatives were convinced that Filippo was a spoiled boy and not really ill.”

  

Filippo spends many hours a day lost in his thoughts, doing things that keep him calm.

  

Maria's bedroom.