It is difficult to deny, even in the year 2006, that citizens of a materialistic, economically based society such as ours are judged by their wealth, their attractiveness to others, or their worth to society; that is, their usefulness to their community of fellow citizens.
This base judgement has persisted in my view for a number of socio-economic factors, much as one may trace the rise of liberalism and the subsequent cfifty years. Whatever strides have been made in public awareness and acceptance and the culminating advances in policy to reflect that acceptance, in times particularly of economic hardship (which must always come in a materials based society), the prevailing judgements based on old precedents returns.
Individuals with disabilities, particularly the mentally impaired, are proportionately dependent upon government welfare and medical programs and services. As a group, their unemployment rate is triple that of other citizens; but for at least a third of these currently dependent citizens, this is not a life they have made by choice. In a ground-breaking and revealing study commissioned by Special Olympics in 2002, worldwide attitudes toward citizens with disabilities was examined, as reflected by those facets enabling us all to fully develop as human beings ie: health care, education, employment, family and aging concerns were determined in a revealing light.
Since our writing concerns our own societal mores, we will use only the data that applies to the United States, comparing it to the worldwide view when applicable to one or another question. As to the public's belief in the capabilities of individuals with disabilities, less than a third of those questioned in the study believed that an individual could handle themselves competently in an emergency situation, and less than half interviewed believed that these individuals understood world and news events which would impair, it is assumed, their ability to make a conscientous choice in an election even while public policy extends the right to vote to all citizens, even those with cognitive disabilities. And while most Americans believe that individuals with disabilities can and should live independently with support services, nearly a third believe that these same individuals should only work in a "special" workshop and should attend "special schools" rather than be integrated as public policy dictates, into the public school setting.
╩ While some of us believe that health care provided to individuals with disabilities is the same quality of care given to others, an overwhelming majority worldwide cited the lack of community services, job training, school resources, student and employee as well as "neighborhood" attitudes as significant obstacles to the overall inclusion of individuals with disabilities into society.2 The study concluded that
"Overall, it is apparent that the general public of these countries lacks an appreciation of the range of capabilities of individuals with intellectual disabilities and therefore has low expectations of what they can do. The world still believes that individuals with intellectual disabilities should work and learn in separate settings, apart from people without disabilities."3
To be fair and reasonable in this assessment however, we must acknowledge the cultural and socio-economic differences that have existed in these countries during the same period.
Some years ago I had the opportunity to have an extended stay in Italy, a country whose struggling economy has rendered it incapable of making the same financial commitment to human services as other nations. Much of the charitable services in Italy are governed by the church, and they maintain a universally acceptable service for the developmentally disabled in their care.The government's role is to encourage and promote a kind of trickle down charity, supporting the printing of phamplets and leaflets which are passed out in the cars of trains and on buses by the disabled themselves to supplement their╩small stipend. But tradition also plays a role in the community, even while the government fails in their support.
During a few days in Milan, my daughter and I were strolling through one of the neighborhoods off the Piazza de Marco when we noticed a young man skateboarding on the sidewalk and the steps of a rather grandiose entry way to a massive apartment building. He greeted us as we approached and we stopped and talked with him for a few minutes. By his mannerisms and his speech I recognized that he was developmentally disabled. I╩asked him about what he did each day, expecting that he might be in some program or out here perhaps, skateboarding most of the day. He reminded us that it was Sunday afternoon. During the week he had a lot of responsibilities. Monday through Saturday, he would go out each morning after breakfast and make the rounds along the businesses of the busier roads in his neighboring community, just west of the University de Milano. The owners of the shops and markets would give him a job to do for a few lire and he would earn enough each week he told us, to buy a video game or something for his family. He lived with them in the massive temento that loomed above us. He sometimes did chores for some of the residents there for money as well.
I was impressed at once with the young man, and also at the natural supports, as we call them in the States, that had developed in his community for him. This had its roots in tradition I knew, and I was enthused that it should still exist in what many would say is the most westernized city in the country. It also illustrated a fundamental example of the conditions we must consider. While the part of S.O.'s survey conducted in the United States showed that our communities support independent living in supervised apartments or group homes, we don't support individuals with intellectual disabilities with employment in the community very well, even with "under the table" ╩employment. Almost two thirds of people in the US feel that employment for the disabled should still be in supervised "workshops" rather than in the community markets and malls where they shop each day.4
Italians would be insulted by what they would perceive as a culture of pushing away the disabled from the family unit, turning a family member over to the state welfare for the rest of their lives. But the numbers in the graph don't explain that many foresighted employers do hire the disabled in the United States, even as that "community support"╩as they know it, does not exist. The difference is that the larger retail and grocery stores in the country have lead the way in employment,followed by the popular fast food chains, even though the numbers are small and it remains a marginal number of the employable disabled. In the community however, the "Mom and Pop" small businesses that support our young man in Italy, would not support someone in the United States. The majority of small business owners in the United states feel that hiring someone with a disability would create too much of a distraction on the job, that it would cost the business too much time and resources. The behavior of an individual might be inappropriate, they might cause an accident on the job; a host of reasons to keep those supervised workshops in existence.
The study also revealed startling similarities in countries attitudes and some that were shared and otherwise polar opposites in belief. While Japanese society still favors institutionalization of the disabled, the United States and Japan are even on where those disabled who can work should work, and where they should go to school.
Where to turn the tide in our own country concerning public attitudes and beliefs.
Part of the response must lie in education. In evaluating the study, it is clear that Public Policy, as right as it might be, is not enough to erase long standing misconceptions about the capabilities of our disabled citizens. As Nussbaum writes: Children and adults with mental impairments are citizens. Any decent society must address their needs for care, education, self respect, activity, and friendship.. . . The failure to deal adequately with the needs of citizens with impairments and disabilities is a serious flaw in modern theories that conceive of basic political principles as a result of the contract for mutual advantage. This flaw goes deep, affecting their adequacy of accounts of human justice more generally.
A satisfactory account of human justice requires recognizing the equal citizenship of people with impairments, including mental impairments, and appropriately supporting the labor of caring for and educating them, in such a way to address the associated disabilities. It also requires recognizing the many varieties of impairment, disability, need, and dependency that "normal" human beings experience, and thus the very great continuity between "normal" lives and those of people with lifelong impairments. "5
The reaction to the failure of the named "contract for mutual advantage" has been, as might be imagined, wide spread and reactionary. Human rights groups and advocates have signed on to noninclusional ideas as a better solution than a failed inclusion. Statements from Disability Conferences in Germany and Sweden proclaim the rights of the disabled to forgoe any medical treatment that might improve their condition, if they so desire. It might sound as though the liberty might be self evident, but individuals on government benefits have had to fight for their right to refuse medication and treatment. Such extremes might disturb us, and even more that it comes from the disabled themselves. What will happen to the contract for mutual advantage ? ╩Did Rawls ever consider that even if his dreamed of society ever reached near perfection, that the care might be refused one day ? That the afflicted would declare themselves: let us be as we are.
For most of us who work with people affected by disabilities, the philisophical discussion does not affect the day to day existence of the disabled. As important as it is, the role it plays in our lives now are as the seed of a tree that has been planted. How well that tree is nourished will depend upon many factors. What we must concern ourselves with today is how to change attitudes in the present to open opportunities for individuals with disabilities. Of the movements that grew in reaction to the failed inclusion programs of governments worldwide, was the self-advocacy movement, wherin organised groups of individuals would advocate for themselves against government cuts and violations of disability rights. The movement grew throughout Europe and then to the United States, where self advocacy groups became focused on more local issues and education.
Today, self advocacy groups throughout the United States have strengthened disability rights by educating their local disabled community on voting and civil rights, and local issues that demand inclusion. They educate also, the young, by visiting elementary schools and furthering the cause of integration. Working along with these groups are countless teachers and advocates and caregivers striving toward the same goal.
Despite the slow progress in winning individual rights and the ongoing challenges these will doubtless ╩face as social programs are trimmed and then expanded again; the future is hopeful. As Nussbaum writes:
"I would argue, indeed, that the changes we have seen in recent years toward the greater inclusion of people with impairments give us strong that the decency of human beings does aim at justice for its own sake, frequently enough to make a large political difference. If this is so even in Western societies, dominated as they typically are by economic motives and considerations of efficency, how much more might we expect of human beings in a society that truly supported the human capabilities of all citizens, and devised a system of education to reproduce these values over time.
More individuals with disabilities are joining in providing that education each day, in their workplace where they will often do more than is expected, to the classrooms where they work harder than any other student to earn their degree; and to public life where they will join other leaders of the community. It is an ensured inclusion I think, for though justice has been a long time coming, we have made great strides as Nussbaum notes above. But we must also be wary of the ebb and flow of government spending that support so many services vital to this population among ours. We must support their fight and them as fellow citizens.
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