Disability, however profound a wound, cannot and must not become an excuse for complaint, sentimentality, passivity, or a reason to settle for prefabricated support services that are often incomplete and inadequate to real need. We believe instead that constructive initiatives—original where possible, and always grounded in honest analysis of existing resources and constraints, especially economic and cultural ones—allow the agencies that work with these families, in partnership with families themselves and in networks with each other, to grow in dignity, negotiating power, and authority. This in turn sets in motion a virtuous cycle toward greater personal and collective wellbeing.
When twelve of us founded Vedere Oltre in September 2013, we had many projects in mind and several possible ways to realize them. But we had no practical experience of what it meant to give life to an association devoted to protecting the interests of our daughter Marta and other people with disabilities and their families.
While we were searching for an organizational solution—and not just a residential one—for what comes after us (or better, as our most recent workshop puts it, for a future "without you"), for Marta and some of her friends, we felt the need to make ourselves known. We wanted visibility and, why not, financial support through donations. But we also wanted to propose good practices developed by practitioners across the different major domains that make up family life when disability is present—the same domains, really, that shape every family's life.
So we began producing events: at first mostly musical in nature, then, tentatively, some we might call "technical" events on disability, featuring experts and people who had pioneered good practices. We went looking for these practitioners, and not one ever turned us down. Almost always they came back with fresh ideas that expanded and deepened what we had originally envisioned.
We discovered, gradually, that organizing events around good practices forced us to think more carefully about the issues we wanted to explore. But it also brought us into contact with skilled, motivated people who, as they shared their own experiences with each other, generated a synergy that produced new initiatives—significant ones we could never have imagined on our own.
Within a few months, the satisfaction this brought us led us to favor these events over the artistic ones. As the concerts grew fewer, we had space for the workshops. Besides, our early attempts showed us that organizing "technical" events was far simpler and less costly than mounting theatrical performances.
My wife Lucina suggested we frame the workshops as a single series—unified by purpose, diverse in subject—with a title that reflected our ultimate aim: to affirm the dignity and autonomy of people with disabilities, especially adults, and to assert their right to be recognized as "persons" in the full sense—bearers of the same human needs as anyone else. Physical and material wellbeing. Personal growth. Self-determination. Social inclusion. Meaningful relationships. A title, then, that would move us beyond charity and help the "person" emerge from the social constraints of disability. Hence: "From Care to Personhood."
The six workshop titles are:
- Disability and Secondary Education
- Disability and Health
- Disability and Faith Formation
- Disability and Citizenship
- Disability and Autonomy
- Disability and "Without You"—Beyond Group Homes
Why call them workshops—laboratories? Because bringing together practitioners of good practices across different life domains, and putting them in dialogue with the public, we hoped to spark agreements, synergies, and proposals for new initiatives. As happens in real laboratories, where the drive to improve is the first tool of work—a drive that refuses to accept the status quo, which is so often grossly inadequate to the expressed and unspoken needs of people and families living with disability. No sentimentality. No complaints. No curses. But sleeves rolled up, despite the deep wound that disability inflicts.
Mariano S. Pergola
Vedere Oltre - Associazione Onlus