DISABILITY IN THE TIME OF COVID

Elena Belloni

One fact is clear to all: this emergency situation has increased social isolation, especially for those who are disabled or have a disabled relative, and it has inevitably highlighted rifts and distances in our society. Some examples:

• People with Multiple Sclerosis have had to deal with problems not only in terms of rehabilitation, with 70% having to stop, but also in relation to treatments, psychological support and expenses.
  

• Blind people have also come up against major difficulties. For those who cannot see, not only is it complicated getting to the supermarket, but even online shopping is a problem at a time when everyone is availing of this kind of service. Using gloves is a real tactile barrier as they restrict sensitivity. 

• For deaf people, transparent facemasks, which have been much talked about, could actually be a solution to the communicative barrier of having one’s mouth covered. Plus, for many official television communications, both by the Italian Prime Minister as well as the Italian Civil Defence, real-time simultaneous translation into LIS (the Italian Sign Language) has been introduced, but not for all regional news bulletins.

• People on the autistic spectrum are those who need greater attention, especially with regard to possible home isolation or hospitalisation, which can have a negative impact on their health and behaviour. That is why the National Institute of Health has devoted a document to COVID19 and autism, containing some indications to be adopted in general and specific situations for proper support for people on the autistic spectrum.
  Fundamentally important is that the person with autism understands the situation: the ways in which the virus can spread and what measures to adopt to reduce personal and social risk of exposure. Concrete and clear terms to explain the situation are preferable to metaphors. 

Our daily routine during Covid19 has been completely turned upside down, but the need to stick to a routine is one of the specific vulnerability factors for people on the autistic spectrum. It is therefore important to try to maintain some of them. Resetting and reorganising the daily routine can be particularly helpful, as predictable and repeated rhythms can help recover some sense of security, equilibrium and greater feeling of control. People with autism need to get out, and by ‘out’ we do not mean for a walk: it is an action that is necessary for their health. In this regard, exceptions were made to the ban on leaving a 200 m radius of the home, in specific and documented cases, for minors with behavioural problems difficult to contain in the home.
Another dramatic consequence of this virus is the possible sudden disappearance, difficult to comprehend for those with autism, of support figures: teachers, volunteers, friends, therapists. For adolescents this time can be particularly difficult especially if they have problems with social relations due to their disability. School or extra scholastic activities are often the only chance they have to create social relations with their peers and having to avoid bodily contact can increase their distress where the need for contact and physical closeness can be greater. The absence of qualified personnel for the families means having to take back full responsibility for their disabled family members, sometimes having to also look after primary care without or with little presence of operators or home support. And in many cases reconciling smart working or work activities with the attention and care needs of a disabled child is a really mean feat. Many families today find themselves facing the fear of regressions or the loss of abilities gained through hard work and endeavour.
A person wearing a facemask can cause concern in the person with dementia to the point where they refuse the help of operators or family members who are wearing protection devices, for the simple fact that they are unrecognisable.  There is another category of people with disabilities which has perhaps suffered more serious discrimination than others. It is important to remember that sexism and disability-related discrimination are not exclusive, but together can produce a very serious multiple effect. Besides weaker rights, the isolation and confinement policy has led to an increase in domestic, sexual and gender violence levels with serious consequences for the disabled women who very often live the entire phenomenon in absolute silence. According to data provided by FISH - Federazione italiana superamento dell’handicap (Italian Federation for overcoming handicap) – in the pre-emergency period over 65% of women with disabilities suffered some form of violence and the figure increases in the case of multiple disabilities. The most common form of violence is psychological and in most cases the perpetrators are partners or family members. The most worrying data is that only 37% of those who declare they have suffered some form of violence react and only one third of these women are aware of the violence suffered. Inevitably, during lockdown, since it is impossible to leave the home, episodes of violence increased. But what support is there for people with disabilities and their families? Like the “Cura Italia” decree, the “Rilancio” decree envisages some measures to support families with some special attention paid to people with disabilities. These forms of support can be divided into two areas: flexibility for workers (additional employment leave - law 104/1992, other kinds of leave, smart working etc.) and financial support for families in difficulty (basic income for more, special introduction of emergency income, baby sitter vouchers, bonus for the self-employed, domestic workers and carers etc). Then there is a third area, not immediately effective, with an increase in certain funds for people and their families.

In conclusion: the gradual resumption of services and social, economic and production activities requires new organisational and relational models that consider accessible, sustainable spaces and times without discrimination. We have a golden opportunity to rethink and remodel lifestyles, work and services for a new departure that includes all. Let’s hope we have the courage to act so that this departure is synonymous with a new society that leaves no one behind. Now, more than ever, in the time of Covid.