To start, I am no longer a mother of a person with disabilities.
I am no longer a mother because, last year, I lost my disabled son in a tragic accident due to the recklessness of the authorities in securing alocation, advertised and strongly promoted as touristic place, where he was with other colleagues and educators from the day centre. An experience of community life that ended in tragedy due to the lack of attention by those who had to understand the risks and, with their powers, should have prevented and avoided what happened.
But that’s not what I want to write about. Rather my new situation allows me to pay more attention to the discussions and actions to combat the COVID-19 emergency. These actions are drastic and have, once again, highlighted the vulnerability of some citizens.
What citizens to protect? All citizens or just those who are visible and that the society deems as “worthy”?
I’m referring to the lack of protection of persons with disabilities. Yes, those persons who, if their representative Associations hadn’t acted, would still be waiting and begging for attention….
If there had not been strong advocacy from these representative organisations of persons with disabilities and their national networks (FISH and FAND) there would not have been any mention of persons with disabilities in the various decrees that the Government issued. I do not even mention the struggles that persons with disabilities faced to be heard.
What citizens to protect? All citizens or just those who are visible and that the society deems as “worthy”?
I’m talking about persons with disabilities. Yes, those persons who, if their families were not there, would have died of starvation, of lack of care, of lack of protection.
It’s rough, but it’s the truth.
First point: persons at the day care centers. Both persons spending time there and staff. No social distance, no individual protection because they are often not able to perform the measures indicated by the authorities.
It took two weeks for authorities to understand that the closure of the Day Care Centres was indispensable, two weeks that allowed who knows how many persons to become infected by COVID-19. However, closing the Day Centres led everyone to stay home without any support. No support was provided to persons with disabilities and/or their parents (usually the mother) who may be working, who may be elderly, who may be themselves sick.
Schools closed. Everyone at home, commendably. But if families are struggling to look after their children without disabilities, what to say of families with children with disabilities and in particular children with intellectual disabilities and/or with severe health conditions?
Tell me if you have been able to obtain alternative health services, social care services, education service. I would like to know where and how these alternative services exist and how many pupils and students with disabilities have been reached.
Second point: residential services for persons with disabilities. Places where persons with complex and complicated personal, family and social situations live. Places where you should experience a family environment. Places that should have environments that promote personal and collective growth, and autonomy.
The COVID-19 has wiped out everything and the necessary enforcement actions have overwhelmed these communities.
ANFFAS rightly issued a press release stating: “Residential centres are real time bombs ready to explode, it’s an explosive situation that nobody is trying to solve, leaving persons with disabilities, families and operators at the mercy of the ongoing health emergency”.
That’s unfortunately true. These services must be considered essential services, comparable to health facilities, and as such provided with adequate support and means of protection, material and personnel. The truth is that many of their inhabitants are unable to understand and adapt to anti-contagion regulations. Suddenly, activities based on interpersonal relationships are cancelled in exchange for “asocial” relationships and behaviour. Staff is exhausted and needs to transform anti-contamination measures into anti-contamination educational alternatives.
There is a lack of individual protection and the Health Authorities should allocate such protections since they know the type of service, the number of users and their characteristics, and the number of staff. In the absence of such protection, there is a risk of inhuman behaviour and open violation of human rights: sedation, containment in beds, limited, if not absent, treatment. If no intervention is taken, there will soon be an eruption of new infections and hospitalisations. Users, staff and their families.
Third point: persons with disabilities confined at home. Persons with disabilities in a situation of high dependence on life-saving devices, including the need for assistance and for technical assistance to keep the life-saving devices alive. Many of the care workers that support them have not shown up and those who remain are imprisoned with their patients. Do we know how many of these persons do not have family members who can replace their caregivers?
I read about an institution that has set up a community for minors whose parents are hospitalized for COVID. Thank goodness, these boys and girls need all the support and care they are entitled to. Do we know whether initiatives of this kind have been envisaged for persons with disabilities as well as for children whose parents have fallen ill and, even, for pets whose owners have fallen ill?
Fourth point: persons, young children and adults, with disabilities who are segregated at home so that this emergency can be solved. The next paragraphs will explain my provocative title.
In the newspapers it’s a race to explain, who, when and why can you leave your house. In summary: proven work needs, absolute urgency, health reasons, purchase of food, and taking dogs for a walk to carry out their physiological needs.
I understand that this situation is putting a strain on all the families. As a mother of four children I imagine, and I am close to all the parents and all those who help them in this emergency.
I imagine how hard and difficult it is to keep in the house a person with disabilities that do not allow them to understand the situation, that have relationship or behavioural problems, that have mental health issues aggravated by confinement.
For these persons, particularly in serious situations, confinement with the family leads to increased and unmanageable crises of behaviour, risking abuse and use of physical force and forced medication.
Not thinking and not foreseeing these needs means that persons with disabilities are invisible in the eyes of those who decide for our and their good.
If I put them on a leash and let them pass for my pet, can they leave the house?