César Giménez went into hospital in 2003 with a headache which resulted in him leaving months later with severe brain damage.
The 46-year-old Latin, Greek and English teacher, now works as a campaigner and lives a full and active life in Malaga, Spain. He relies on the support of his parents as well as a personal assistant who comes every day.
But the Coronavirus outbreak is causing people like him to fear for their independence and dignity.
“If my personal assistant got sick, they, my parents, wouldn’t be able to put me in the shower or do things for me to be able to take care of my personal hygiene”, César Giménez told Euronews.
It’s also a very real fear for Alice Jorge, a disabled person living in Belgium who is currently supported by her sister when she is normally visited by one nurse and one personal assistant every day.
Alice found out one of her support nurses has contracted COVID-19 and says “she’s asking me to decide if she can come and take off this weight from the other colleagues and my sister. As I’m dependent on all that, it’s not an easy decision to take.”
Their fears are echoed by the European Network on Independent Living (ENIL) which works to promote access for disabled people to live in communities in Europe rather than in institutionalised homes.
Isolation and infection risk
”We know that in care centres, there is a high degree of isolation and also a higher risk of getting infected because people are close together” says Frank Sioen, ENIL’s Advocacy and Communications Officer.
The network is calling on European governments to be clearer on the support and advice for personal assistants and the disabled people they support.
Not all EU nations have designated these kinds of personal assistants as essential medical workers meaning many do not have access personal protective clothing and masks through healthcare systems, despite being in regular, physical contact with the people they are working with.
In the European Union, healthcare is dealt with by the national governments which means that each country has its own medical advice.
The European Commission told Euronews it’s committed to ensure that the rights of all, including Europeans with disabilities, are respected throughout this crisis.
EU Commissioner for Jobs and Social Rights, Nicolas Schmit says, “the European Social Fund and the Fund for European Aid to the Most Deprived should be put to full use by EU countries who can apply for money to support disabled people at this time.”
The Coronavirus outbreak has been especially difficult for people like 62 year old Herman Hillen who is living in a residential care home near Antwerp, Belgium.
He fell and broke his leg in Rio de Janeiro, Brazil and following complications with surgery there, was repatriated to Belgium. His disability meant he was put in a home.
Fourteen days in a room
One of the 14 residents where he lives contracted COVID-19 and Herman told us, “this feels very bad. It means 14 days in the room. It feels like everything is taken away from us. I’m feeling very depressed and I’m sure I’m not the only one.”
While care homes are necessary to support some disabled people in the current systems, organisations working with disabled people believe that lives are more fulfilled when out in the community and living independently.
But in the times of the crisis, ENIL also has worries about how healthcare systems will treat disabled people who contract COVID-19.
Frank Sioen asks, “will disabled people, by default, be seen as a group of people that does not have equal chance to survive and therefore have no access to emergency treatment?”
There have been widespread reports of doctors in Spain and Italy, where the healthcare systems have been overwhelmed, having to decide whether one patient or another should be given lifesaving ventilators.
How can this be resolved?
Social care experts like Dr Ossie Stuart in the UK believe there could be scope to develop what is happening in the healthcare systems around Europe, to redirect it towards community based home support and Personal Assistance both during and after the crisis.
He says, “We’re building a lot of capacity into the health system and social systems at the moment. I don’t think we should lose that. We need to think about how we can exploit that going forward to create a society which more people can participate in.”
For the moment however, people living with disabilities in Europe and around the world hope this crisis will be over as soon as possible and that their support networks will be in tact once it is.