Abstract
This article frames the past and future role of the parents of children with disabilities within the context of special education. We highlight their past aspirations: to organize nationally to assert that their children could learn, to codify into law their children’s right to an education, and to foster trust-based parent–professional partnerships. Using the past as a prelude to the future, we then identify two aspirations for the future: to foster empathy, compassion, and dignity; and to “get a life” rather than just “get an education.” The theme of future aspirations is to develop schools and communities where empathy, compassion, and dignity abound and where, as a consequence, children and adults with disabilities can experience across the full lifespan the Individuals with Disabilities Education Act’s outcomes of equal opportunity, independent living, full participation, and economic self-sufficiency.
We write from two perspectives: first, as parents of a man who was in the first cohort of the disability rights movement, and, second, as researchers concerned with the effect of policy and practice on parents with children with disabilities, during their school years and beyond.
The relevant history of the 20th and 21st centuries warrants a brief review of three significant roles parents have played in securing and advancing their children’s education. We interpret those roles from parents’ perspectives in terms of their aspirations—their visions for what they wanted to achieve for their children and themselves:
Organizing nationally to assert that their children could learn
Codifying their children’s right to an education
Fostering trust-based parent–professional partnerships
Similarly, we frame two future issues on the basis of parents’ aspirations, not just for their children of school age and older, but for themselves, their schools, and communities:
Fostering empathy, compassion, and dignity
“Getting a life” in addition to “getting an education”
Three Aspirations of the Past
Organizing Nationally to Assert That Their Children Could Learn
The preludes to today began when families organized schools for their children (Boggs, 1978). In organizing those schools, parents hoped to demonstrate that their children could indeed learn and thus not be subject to exclusion from school, institutionalization, and other devaluation. Having established these schools locally, parents soon learned that other parents in other communities had done likewise. That knowledge prompted parents throughout the country to organize at the state and national levels to advocate for their children and themselves.
The earliest of those organizations was The Arc of today, founded in 1950 as the National Association for Retarded Children (NARC). Various state and local associations, founded to support families affected by intellectual disability, were on the upswing. In 1950, at the annual meeting of the American Association on Mental Deficiency, a small group of parents met and gave birth to the first parent organization (NARC, 1954).
To help each other—that was the common mission; and to do so by organizing and demonstrating just what their children could do—that was the evidence that families used when they sought to prove their children were capable of learning and then sought to be heard and heeded about rights to education (Turnbull, Shogren, & Turnbull, 2011).
Codifying Their Children’s Right to an Education
Not unexpectedly, as families had to rely on themselves so much, it was a family member, John F. Kennedy, the brother of a woman with intellectual disability, who heard and heeded families. He did so in 1962 by creating the President’s Panel on Mental Retardation, appointing his sister Eunice Shriver to it, and, at her urging, impaneling another family member, Elizabeth Boggs, one of The Arc’s charter parent founders.
The Panel’s report (President’s Panel on Mental Retardation, 1963) consisted of recommendations for research, practice, and policy. With respect to law and policy, Boggs and Judge David L. Bazelon coauthored recommendations that, among other things, called upon Congress to enact a statute authorizing federal assistance to states, so that they may educate children with disabilities.
That recommendation languished until families, frustrated in their attempts to secure state and national special education laws, changed their forums of advocacy to the federal courts. There, they asserted that just as racial minorities may not be discriminated against in education because of their immutable trait of race, so, too, children with disabilities have rights against discrimination in education. Responding to two federal court decisions commanding a state (Pennsylvania Association for Retarded Children v. Commonwealth, 1971, 1972) and the District of Columbia (Mills v. District of Columbia Bd. of Ed., 1972) to educate all children with disabilities, Congress amended the Elementary and Secondary Education Act in 1973 and, then, in 1975, enacted a free-standing special education law (P.L. 94-142) that is now the Individuals with Disabilities Education Act (IDEA). Sam Kirk (1984), a pioneer researcher of special education, summarized the impact of parental advocacy as follows:
If I were to give credit to one group in the country for the advancements that have been made in the education of exceptional children, I would place the parent organizations and parent movement in the forefront as the leading force. (p. 41)
What did IDEA express when interpreted in the light of families’ aspirations? It expressed children’s rights to equal protection and due process under the 5th and 14th amendments of the constitution and a new and robust principle of parent participation (Turnbull, Stowe, & Huerta, 2007). It also, and more fundamentally, expressed families’ hope to have an authentic role in their children’s education, as partners with educators.
Fostering Trusting Parent–Professional Partnerships
Soon, however, research about parent roles in Individualized Education Program (IEP) conferences revealed that decision-making in IEP conferences was dominated by professionals (Goldstein, Strickland, Turnbull, & Curry, 1980; Harry, Allen, & McLaughlin, 1995). The antidote to that disappointing conclusion originated from another parent, Madeleine Will, who, as Assistant Secretary of Education, persuaded Congress to authorize and then fund Parent Training and Information Centers (PTIs; P.L. 98-199). Collectively, the PTIs provide information to families, develop their capacities to be partners with educators, create opportunities for partnerships, and thereby make it possible for schools to be more effective in educating children. Congress charged the PTIs, along with the thereafter authorized Community Parent Resource Centers, for supporting parents in traditionally underserved communities to establish trusting partnerships with educators. A qualitative research team at the Beach Center on Disability, led by two parents of young adults with disabilities, identified and operationalized seven key principles of hoped-for-partnership from families’ perspectives—communication, competence, commitment, advocacy, respect, equality, and trust (Blue-Banning, Summers, Frankland, Nelson, & Beegle, 2004). Table 1 briefly defines and highlights two key indicators for each of these seven principles. The effective implementation of these principles and indicators is our transition point between the past and present/future.
Partnership Principles and Key Indicators.
History and Aspirations
How, then, might one sum up the past? One way is to assert that parents have been catalysts. They entered the policy arena first as educators who proved their children can learn, and then as members of a presidential panel. They soon became successful advocates for new policy and system capacity development and then they became trainers and researchers focusing on trust-based partnerships with professionals.
Those are facts. Facts are one part of history; they reveal what happened, not why. Another way to sum up the past is to derive from the facts the parents’ aspirations. Their aspirations were that their catalytic action in demonstrating that their children could learn, and thereby organizing to be effective advocates, being successful in courts, and securing partnerships through federal laws would result in a different kind of education for their children, a different relationship with educators and even more—indeed, a different life over the full lifespan for their children. The difference would reflect not just rights and partnership practices leading to a free appropriate education in the least restrictive environment. It would also constitute families and educators, in trust-based partnerships, as change agents in schools and, by extension, in communities where children live as adults. Assuming the accuracy of that interpretation, it is appropriate to carry that interpretation into the present and then extend it boldly into the future.
Two Aspirations for the Future
Fostering Empathy, Compassion, and Dignity
The law is a limited source of change. Granted, IDEA commands procedures for family–professional partnerships. By commanding procedures, IDEA creates opportunities, but it cannot command the affect that families and professionals bring to each other. Likewise, research can identify partnership principles and indicators (see Table 1) with a focus on what educators can do in interacting with families; however, research cannot dictate affect in terms of how to implement the principles.
To continue to reform schools and communities through partnerships requires attention to affect, to the emotional elements and the tone of how families and professionals interact. The mechanics of partnerships are necessary but are not sufficient; alternatively, what is needed is the development of an ethical community characterized by empathy, compassion, and dignity. The ethics, not merely the mechanics, of partnerships can create communities in which students, families, and professionals alike can flourish richly and satisfyingly—communities and a culture that IDEA itself intended, and still intends, to occur (National Council on Disability, 1995).
Empathy involves deep understanding of another’s feelings, thoughts, and actions (Ciaramicoli & Ketcham, 2000; Mish, 1996). It requires one person to stand in another’s shoes. Empathy is a form of identification. It is, however, an inert status: One can stand in another’s shoes and still do nothing. But at least identification is a start. Educators, policy leaders, and researchers have to be able to see themselves as “the other” and then imagine what they, as the other, would want for themselves and their children with disabilities to meet families’ aspirations.
To create communities and a culture requires action. Action converts empathy into compassion. Compassion refers to a consciousness of others’ distress along with a desire to alleviate it (Lampert, 2005; Mish, 1996). The root of the word is com—meaning with—and pati, meaning to bear or suffer. Note the two elements of the definition: consciousness (empathy) and desire to alleviate (action). When empathy and compassion are combined, families feel heard, respected, and supported in the sense of having a reliable ally who “gets it” and who will be a trusted partner in finding solutions that make a difference.
Partnership principles implemented with empathy and compassion create the context for an ethical community. An ethical community is one in which educators and families act reciprocally in affirming each other’s strengths and in treating each other with respect, worthiness, and a sense of equality. More than that, the ethical community is one where dignity flourishes. Dignity is the quality or state of being worthy, honored, or esteemed (Mish, 1996). It proclaims that less able does not mean less worthy (Turnbull & Turnbull, 1978). As an ethical principle, dignity honors the inherent worth of every student, including students with the most intensive support needs and the dignity of every parent, including those who do not respond in the way that educators would prefer. When dignity is manifested by the actions of a group of people (such as those in a school), it creates an ethical community, a collective that can be the foundation for a larger community in which a person with a disability can truly experience full citizenship (Turnbull & Turnbull, 2011; Turnbull, 2014).
“Getting a Life” in Addition to “Getting an Education”
In an ethical community, the nation’s disability policy will germinate, become durable, and generalize. That policy consists of four intended outcomes of IDEA: equal opportunity, independent living, full participation, and economic self-sufficiency (IDEA, 20 U.S.C. Sec. 1400(c)(1)), as defined in Table 2. These four IDEA outcomes are consistent with those of the Americans With Disabilities Act (1990) and can be regarded as promises that government (federal, state, and local) makes to individuals with disabilities and their families in terms of “getting a life”—the quality of life that the person and family aspire to have.
IDEA’s Four Outcomes: Promises to Individuals With Disabilities and Their Families.
Note. IDEA = Individuals with Disabilities Education Act.
Problematically, despite the fact that IDEA has been a national policy for over 3½ decades, these IDEA outcomes are far removed from the reality of most individuals with disabilities and their families. Only approximately one third of adults with disabilities are employed as contrasted to three fourths of individuals without disabilities (Houtenville et al., 2013). Furthermore, only approximately one third of adults with disabilities report that they are very satisfied with life as contrasted to two thirds of adults without disabilities (National Organization on Disability, 2010).
Indeed, if we regard these four outcomes/promises of national policy as instruments of the ethical communities we create, then a task for educators and parents, in partnership with each other, is not solely to attend the mechanics of teaching and learning and the principles of a trusting partnership but also to deliberate, together, about how a particular student is dignified in general and special education. Attention to who values, honors, and esteems the student (or does not), and how and why, become as important in designing an IEP and implementing it, in inclusive environments, as the IEP-specified elements of general and special education, related services, and supplementary aids and services.
Furthermore, attention to valuation, honoring, and esteeming become concerns as educators, parents, and students themselves plan how to ensure, in school and thereafter, equal opportunity, independent living, full participation, and economic self-sufficiency. More than this, professionals who serve the student during the student’s adult years, together with the student or surrogates for the student, should concern themselves with dignity, not merely with issues about eligibility for services and supports and the nature and amount of them; thus, as supports and services are designed, it is as important to consider the matter of dignity—how to value, honor, and esteem a person—as it is to plan and then act to provide supports and services, for dignity enhances quality of life (Turnbull, 2011).
If, as was the case, the two of us, with our six college degrees between us and years of special education experience, were daunted by the absence of an adult service system, how will families fare who do not have comparable education and experience? How might they, like us, create a life of dignity for their children? How will they be buoyed in their advocacy—a nearly unrelenting obligation—for quality of life for themselves and their members with disabilities? How will they be able to not only aspire to what the “founding parents” wanted when the parent movement began so long ago but also to experience it, especially given that the years from birth to 21 (the school years) are approximately only one fourth of the typical lifespan for individuals with disabilities?
Conclusion
Asked by this journal’s editors to look backward to frame the future, we have expressed a sense of what families aspired to have and still want—the means for creating schools and communities, and a culture grounded on an ethic of dignity for those affected by disability (Parmenter, 2014; Turnbull, 2014). From families’ perspectives, the hopes of the past were, in part, that their children would receive their constitutional right to a free appropriate public education. Those hopes, howsoever powerfully they undergirded families’ behavior in organizing nationally to assert that their children could learn, codifying their children’s right to an education, and fostering trust-based parent–professional partnerships, inadequately express what families really wanted. True, they wanted education for their children. But they wanted more. They wanted educators to recognize that they are the foundations for their children; to regard them with empathy; and to convert empathy into compassion that, in turn, creates ethical communities, places where they and their children are treated with dignity, places where their children “get a life”—a life not just during their elementary and secondary years but, indeed, across their entire lifespan—characterized by equality of opportunity, independent living, full participation, and economic self-sufficiency.
As a starter and not altogether factiously, we suggest that Congress might well draw the nation’s attention to parents’ aspirations by renaming IDEA to be the Individualized Dignifying Education Act, thereby recognizing the inseparability of civil rights and ethical communities, thereby also fulfilling the implicit promises of disability policy. Absent the renaming, we suggest that standards for evaluating schools and educators should attend to the matter of dignity, for that is not just an aspiration of parents, but it is also a component of the Council for Exceptional Children professional ethics (Council for Exceptional Children, 2009) and an overarching principle of our nation’s disability core concepts that provide the formulation of disability policy across the lifespan (Turnbull, Beegle, & Stowe, 2001; Turnbull & Stowe, 2001).
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.