The Conference was a tremendous success. For the first time in Italy, the problem of handicap appeared in all its stark, comprehensive reality.
Until then, government and institutions had been far from understanding—and therefore far from responding to—the genuine, vastly diverse needs of disabled citizens.
Edoardo Cernuschi, president of the LEDHA - League for the Rights of the Handicapped, puts it well: "When we say handicap, we always think of physical handicap—the spastic person, the paralytic in a wheelchair. But there are many kinds of handicap beyond the physical, and many different degrees of severity: mental handicap, sensory handicap, mild developmental delay. And each type of disability presents different problems to solve."
For three decades, my small, scrappy organization—the Union of Families with Handicapped Members—has insisted on a truth: the real burden of handicap in Italy falls entirely on families, a situation unique in Europe. Those families go unheard and unheeded for reasons no one can quite explain. Italian families, from north to south, are the true experts on the varieties of handicap. They must organize and make their voices heard, or the reality of the country will never surface. We believed that all hundred thousand associations represented only scattered fragments of a larger whole that was escaping the legislator's grasp.
When we say handicap, we always think of physical handicap. But there are many kinds of handicap, and each type of disability presents different problems to solve.
This was the unexpected "miracle" of the First National Conference on Disability Policy.
For the first time, before an enormous and attentive audience, ISTAT (Italy's National Institute of Statistics) released staggering figures: 2.65 million Italians are disabled. Except for roughly 300,000—nearly all elderly, confined to protected residential facilities (institutions, group homes, large and small communities)—the remaining 2.35 million, young and old, physically disabled and mentally disabled, with varying degrees of severity, rich and poor, all live at home, with families. Mothers, wives, sisters, daughters, and granddaughters devote their lives and resources to their existence.
The conference also noted that Italian families receive less social protection than any in Europe. State spending on families ranks among Europe's lowest, and in recent years it has declined further. (See the Sixth Report on the Family from the CIS, International Center for Family Studies, presented November 5, 1999 to the President of the Senate, Nicola Mancino.)
During the National Conference, elderly parents arrived in vast numbers from across Italy. Their long-unheard "cry of despair" finally broke through: the agony of the present—loneliness, lack of help, lack of services, lack of money, absurd and unbearable bureaucracy—and above all, the terror of "After Me" (What will happen to my child when I die?). The state has made no provision: no services, no assistance. It cuts survivor pensions while uttering hollow talk of "possibilities" and "rights." Words, words, words.
"We families, too, want to be free to live like everyone else, alongside our disabled children—free from daily anguish and exhaustion, free from fear of what comes next, free from economic desperation."
If the title of those three days—"Free to Live Like Everyone Else"—is to mean anything, the current government and all future governments have no more excuses. The policies Italy needs on disability have emerged with shattering clarity: support disabled people and the families caring for them at home, in their own communities, with services, assistance, and money. And above all, take responsibility for the severely disabled adults—those with mental disabilities, those with cerebral palsy and profound physical and cognitive impairments, unable to work, needing round-the-clock care—shamefully abandoned at the bottom of all national assistance programs precisely because they are "too burdensome and too expensive."
The phrase "Free to Live Like Everyone Else" had irritated us at the start of the conference. By the end, it sounded different: "We families, too, want to be free to live like everyone else, alongside our disabled children—free from daily anguish and exhaustion, free from fear of what comes next, free from economic desperation."
That phrase became the true synthesis of the conference: a warning to the institutions, the political direction demanded for the future, a meaningful and sensible hope for all of us as we enter the year 2000.
- Cecilia Cattaneo Barbieri, President of the U.F.Ha - Union of Families with Handicapped Members, 2000
The Conference
"Free to Live Like Everyone Else"—First National Conference on Disability Policy, organized by the Ministry of Social Affairs on December 16, 17, and 18, 1999, at the Rome Fair, via dei Georgofili, 7.
Participants included: Guido Bolaffi (OFFICIAL), Mirella Boncompagni (OFFICIAL), Walter Tocci (COUNCILMAN), Silvano Moffa (AN), Piero Badaloni (WITH BADALONI), Livia Turco (DS), Luca Pancalli (UIL), Rosa Iervolino Russo (PPI), Gianni Secceri (ANIEP), Giampiero Gamaleri (RAI), Russo, Fiorenza Scotti, Giovanni Cipri, Valentina Paoli, Sanzio Antononi, Angela Pimpinella, Mirella Boncompagni, Alberto Zuliani (ISTAT), Enzo Bianco (THE DEMOCRATS), Alvido Lambrilli (ANMIC), Pietro Barbieri (FAIP), Matteo Amati (COUNCILMAN), Manganaro (PROFESSOR), Luigi Vecchi (PROFESSOR), Gianni Billie (INAIL), Tommaso Daniele (UIC), Nina Daita (CGIL), Pietro Mercatelli, Flavio Coganart (CISL), Loredana Ligabue (ENEA), Gianni Bellis, Ida Collu (AIS), Nunzia Coppedè (FISH), Antonio Guidi (FI), Valentina Valenti, Alfonso D'amato (AIAS).
Topics discussed included: Assistance, Associations, Municipalities, Culture, Civil Rights, Social Rights, Disabled Persons, Economics, Family, Work, Southern Italy, Employment, Politics, Quality of Life, Health, Education, Social Services, Safety, Social Solidarity, Sports, the South, Transportation, University, Volunteering.
The conference proceedings can be consulted at the Library of the National Institute of Statistics (ISTAT). Here is the bibliographic record of the document.
For those interested, at this address on Radio Radicale, you can listen to the complete recording of the conference.
