Over a billion people, about 15% of the world's population, lives with some form of disability, a growing percentage also due to the aging of the population and the global increase in chronic diseases. Of these, at least one-fifth have to face very significant difficulties every day. Disability especially affects the most vulnerable: the countries most exposed are those with low incomes and the people most at risk are women, the elderly, children and adults in poverty.
Half of the world's disabled people cannot afford healthcare, and people with disabilities are twice as likely to find inadequate skills in healthcare providers. Also, the disabled are four times more at risk of being mistreated and almost three times more denied health care.
In many countries rehabilitation services are inadequate: in four Southern African countries only 26-55% of disabled received medical rehabilitation they needed and just 17-37% obtained the necessary health aids (wheelchairs, prostheses, hearing aids) (WHO and World Bank, 2011).
According to Istat, in Italy there are more than 3 million people with serious disabilities, and of these only 1 million and 100 thousand benefit from the carer's allowance. Over 200 adults still live in institutions and many others are segregated at home, together with their families, due to a lack of supports, supports and opportunities.
Considering Italian families, Istat data show that 11,4% have at least one non self-sufficient individual within them, with peaks of 15% in Puglia and Umbria. A particularly significant evolutionary trend of increase is recorded in the field of mental illness, for which Istat reports the worsening of the mental health index, especially among young people and foreigners.
In Europe and in Italy some important efforts have been made in the direction of improving the access of people with disabilities to health services, improving safety at work for reduce the risk of developing disabilities throughout their professional life and to improve the reintegration of disabled workers and the prevention of such risks, raise awareness of disabilities in medical faculties and professional training institutes in the health sector, improve access to adequate rehabilitation services.
But despite the high presence of disabled people, politics, and in particular welfare policies in Italy, are struggling to deal adequately with the problem. Public expenditure on disability is one of the lowest among the European advanced economies (per capita expenditure on disability, current euros at purchasing power parity). Public and private expenditure on disability benefits and paid sick leave, as a percentage of GDP, is particularly low compared to the European average.
Only 0,6% is spent on disability benefits, compared to 1,1% of the EU average. And to cite a concrete example near us, in Lazio with the estimated presence of 12.000 blind or severely visually impaired individuals, the regional institute for assistance to this category - among other things among the most protected -, the Centro S. Alessio is unable to assist even 1000 people a year.
The obvious consequence is that of a very heavy load which falls on the families of the disabled, both from a financial and social point of view, and both with respect to direct costs (expenses actually incurred), indirect costs (resources lost), and intangible costs (psychological, human and social).
Disability poses problems of acceptance and attitude, not only as regards policies, economic support, dedicated services, the adequacy of places to live, access to services. Disability poses problems above all from a social and psychological point of view in the sense that Kristova says, as it confronts us with issues that disturb our consciences, such as difference, suffering and death.
As Julia Kristova writes “Their gaze pierces our shadows”. And again: "The handicap confronts us with physical and mental death, with the mortality that operates within each of us". And again: “It is an epochal change what is required of us, because it concerns the very idea of humanity”.
For many people, relating to a severely disabled person means feeling vacillating in the depths of one's identity and recognizing, mirroring oneself in the other, one's own weakness, the fact of being mortal and the risk that we continually run of being sucked into suffering ourselves. Hence the long history of removals of the reality of disability, from the Rupe Tarpea of the Roman era to the segregation of our days in separate structures or in differential school classes.
Very little effort has been made especially with respect to the prejudices that still exist towards disabled people. In modernity the question has reached a further critical point following the development of widespread well-being and the growth of social inequalities, which has caused what can be defined as the drama of material and immaterial waste that modern society causes, the problem of plastic and that of clean water, but also the problem of "waste lives" of marginalized groups in cities and territories. Disability is often part of these bands of marginalisation.
The growing diffusion of neurodegenerative diseases, such as dementia and Alzheimer's, together with the survival and longevity that now characterizes many disabilities for which in the past people died early, have accentuated the contradiction between the quantitative dimension and the human depth of the presence of disabled people in our families, on the one hand, and the difficulty of relating positively to the disabled, accepting their limits and finding the right language and feasible compatibilities with respect to the life of the members "healthy", on the other.
The example of work carried out by associations like Alzheimer United with the Alzheimer Cafés is emblematic from this point of view.
The diffusion, also growing, of psychic discomfort in the form of neuroses, depression or juvenile maladjustment, finds families unprepared and society not equipped to welcome, to help and to integrate. The work carried out by the Di Liegro Foundation in Rome, with music therapy, art therapy and family counseling, is a positive example of how we should deal with these forms of discomfort.
°°°°°The author is President of the CPS Istituto Regionale S.Alessio in Rome
