- June 29, 2020

This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series

Names may have been changed to protect the individuals mentioned in the story.

The COVID-19 pandemic was first confirmed to have spread to Italy on 31 January 2020. On that same day, the Italian government suspended all flights to and from China and declared a state of emergency. In February, eleven municipalities in northern Italy were identified as the centres of the two main Italian clusters and placed under quarantine.

Luca: the story of a young man with cerebral palsy

This is the story of Luca, a young man in his early 20s living in Tuscany, where the first case of COVID-19 was detected in Florence, on 25 February.

Luca graduated with a bachelor’s degree in Communications and currently writes articles for a local newspaper. He has a physical disability as a result of a cerebral palsy and has high support needs. “Due to COVID-19, my personal assistant (PA) has not been able to come to my house and my parents have had to replace him”, he says. Luca hasn’t seen his PA for two months and is very excited to see him in a few days. Also, the physiotherapy center and thermal pools where Luca carries out his rehabilitation routine has been closed. “The pool for me is a necessity and also, I meet my friends and it’s my chance to socialize”, he says.

He also notes that his participation in cultural life and sport has vanished. “I miss watching my basketball matches and supporting the local team”, he says. Due to Luca’s disability, doctors have warned him that he must be careful about contracting COVID-19 as this can have serious health implications for him. “I have been scared of getting it and have to be very cautious. I even have to be careful of catching a simple cold”, he says. This has meant that his social interactions and physical contact is almost nonexistent. He admits that meeting few people and not being able to kiss or hug has really affected him. He also worries about his grandparents, who often act as caregivers.

Rosaria: the impact of quarantine on persons with disabilities

When lockdown was imposed in Italy, Rosaria lost the support of her domestic assistant and then her personal assistant, who could no longer visit her at home.

Rosaria has been living with aggressive Spinal Muscular Atrophy for 54 years, almost since her birth, and requires high support for all of her daily activities. She found herself at home with no assistance, alongside her sons, who were distance learning while schools were closed, and her husband, who was working from home.

She worried about the potential of the permanent loss of her longstanding personal assistant and the impact on her family: “In that case the only person I could count on have been my husband. Inside of the family a state of tension would arise and generate something unpleasant: those who live in a condition of disability like me can understand my words well.”

And she lived with the fear of falling sick – if it was Rosaria or her husband, she feared “the tragedy would be inevitable”.

Two months have passed and Rosaria feels lucky that the family are safe and all went well, although her fear of Covid19 remains.

Rosaria says the lockdown in Italy has forced everyone to make “radical changes” in all aspects of life – “limiting the freedom of movement and social relations of all people, with evident negative implications also on health”.

But, she says, these conditions affect even more deeply all people with disabilities: “Staying at home requires in such circumstances, to ensure the adequate, personalized, indispensable assistance; not only to guarantee survival, but also a dignified quality of life, beyond the purely ‘essential’ level.

“I believe that today the challenge for us, persons with disabilities, is to spread the message across the world that a person with disability needs personal assistance as all human beings need air to breathe, to live. So it should be noted that, without personal assistance, some persons with disabilities cannot even go to the Caritas soup kitchen. And even more serious than this, without personal assistance, a person with disabilities with high support requirements cannot lie down in the evening, not even on the ground, cannot get up in the morning, cannot satisfy their physiological needs, cannot drink a glass of water, cannot make their reasons heard.”

Rosaria, who is a member of Disabled People’s International Italia Onlus, the European Network of Independent Living Italia and FISH, the Italian Federation of Disabled People which is the countries umbrella organization of people with disabilities, has heard stories from across Italy where persons with disabilities have experienced “situations beneath the level of human dignity”:

  • A mother said that after the closure for the Covid-19 of the Disability Services Centers, she had to keep her 24-year-old autistic son sedated for several hours a day, to avoid that he hurt himself or the others. All this unfortunately caused him a rapid cognitive regression, canceling years of therapy.
  • Another report concerns a young disabled person from Turin, who lives alone. Because of Covid-19 he remained without any of his personal assistants, forced to the quarantine, and he spent a whole day and night, alone, sitting in a wheelchair at home, without even being able to drink or go to the bathroom. This was because he didn't know who to ask for help.
  • The one which particularly struck Rosaria concerned one of her friends. Catia was 50 years old and has had multiple sclerosis for several years. But in recent months her health worsened and she was frequently hospitalized. On April 19 she went to the hospital to clear an accumulation of mucus in the windpipe. Obviously they did not allow her to keep the caregiver alongside and Catia, always respectful of the rules, did not oppose. The following morning her brother went to the hospital to bring her clean pajamas. Catia was dead! Catia was neither in intensive care nor monitored by any equipment. Catia was alone, motionless, in her hospital room.

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