Taking Intellectual Disability Seriously Shows Us that Education Is a Human Right

Vol. 42 No. 4

By

Sue Swenson was deputy assistant secretary for special education and rehabilitative services in the Obama administration as well as the former commissioner for developmental disabilities in the Clinton administration. She currently serves as president-elect of Inclusion International.


Child with Down syndrome drawing in a costumeIt is common for Americans to believe that our own human rights record is beyond reproach. Indeed, many Americans probably only think about the issue of human rights when it involves our interactions with other nations. We recite the Pledge of Allegiance, originally a marketing jingle, as if it were a sacred text. Most citizens recognize “We hold these truths to be self-evident, that all [people] are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” Yet few understand the relationship between our original documents and international human rights agreements, and the meaning that these principles have for our own nation. Few Americans are aware of the language in the Universal Declaration of Human Rights: “Recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world.” Quite simply, we don’t know or understand our human rights. The result of this ignorance is a failure that has far-reaching effects across our nation and in our domestic policy. Mary A. Glyndon, “Knowing the Universal Declaration of Human Rights,” 73 Notre Dame L. Rev. 1153 (1998). https://dash.harvard.edu/handle/1/12991698.

Nowhere is this more evident than in the realm of public education of children with intellectual disabilities. Our laws, and their interpretations in the courts, often fail to take our obligation to educate all children seriously, perhaps because we fail to see that human rights are more than civil rights. We would do better to expand our view and take our mission to educate all children—in the parlance of our times—both literally and seriously as a human right. When we see education properly as a human rights issue, I believe we will move beyond tinkering with case-by-case triage when one-size-fits-all education plans fail and instead focus on creating a system that is designed to adapt and thrive when all students are treated with dignity and all students’ needs are met.

We have been committed to human rights in our recent past. After WWII, we were both frightened and repulsed by the atrocities of the war. We committed to human rights as a bulwark against industrial-scale war and destruction. A few years later, when our worst fear was fallout from nuclear war, President Kennedy said the torch had been passed to a new generation of Americans who would be “unwilling to witness or permit the slow undoing of those human rights to which this nation has always been committed.” Most of us remember the passing of the torch but not the commitment to human rights. We have permitted their slow undoing. Our government leaders no longer remind us. Our schools no longer teach us. But today, more than ever, we need a common understanding of human rights, not only for the purpose of improving the lives of those human beings who have disabilities, but for all of us, and to promote peace in the face of global climate change and its potentially catastrophic social results. Perhaps we can make headway through inclusion of children with disabilities in our educational designs. 

The History: A Right to Education for All Children

Many Americans know that our children have a right to education, but they probably do not think of this as a human right. It is. Taking this a step further, few understand that the disabled child’s equal right to education is guaranteed by the 14th Amendment, where our Constitution comes closest to a declaration of equal rights. Shockingly, perhaps, the equal right to education for a child with a disability is still a topic of debate among families and schools, not to mention politicians, administration officials, and the courts. Members of the disability community, including parents, are aware of what it means to fight for human rights in all their forms, even if we don’t call it that. We are forced to justify—even today in the twenty-first century—that our children are fully human and that people with intellectual and developmental disabilities have a right to be educated, and to do so in an inclusive environment. The right to inclusive education is not treated as an inalienable human right. 

My experience as the mother of a son with a profound disability and a federal education official showed me that these struggles are found everywhere in ordinary American families and communities. And it raises several questions. If the topic of human rights is now “underground” in America, can it be made visible again through a commitment to the human rights of children with disabilities in American schools? Is it possible that, like curb cuts, a focus on human rights in schools could generalize from people with disabilities to be beneficial to society in general? Angela Glover Blackwell, “The Curb-Cut Effect,” Stanford Social Innovation Review, Winter 2017 https://ssir.org/articles/entry/the_curb_cut_effect.

When it passed the landmark Education of All Handicapped Children Act in 1975 (now the Individuals with Disabilities Education Act, or IDEA) Congress had two goals: to provide a “free appropriate public education” (FAPE) to all disabled children, and to ensure that all children would learn that disability is a natural part of the human experience. While schools were at the center of this approach, of course, the law also made clear that parents were to be full members of the inclusion effort because they would be best able to judge what is appropriate for their child. To help achieve this end, the law created and made parents part of an Individualized Education Program (IEP) planning team. Of the law’s two goals, the first may perhaps be achieved in a neoliberal market-based scheme by giving parents a “choice” that includes segregated or specialized programs. The latter goal may only be achieved in an inclusive environment. IEP teams are not empowered to focus on the second goal. 

Indeed, courts ought to focus on it more, as well. The recent unanimous Supreme Court decision in Endrew, overturning the decision reached by President Trump’s Supreme Court nominee Judge Neil Gorsuch, clarifies that the first goal must be taken seriously, but may also ignore the second too much. It is reassuring that the Court agreed that children have a right to programs intended to help them make more than de minimis progress. Advocates should welcome that decision and work to ensure that Endrew is implemented across the country, which could bring as much change to special education as the Olmstead decision brought to Medicaid-funded home and community- based services and supports. However, advocates should work to defend against the possibility that the justices’ decision might be interpreted as a justification for separating more students into specialized and segregated programs or entirely separate schools. The chief justice wrote that for a child for whom a regular classroom is not a “reasonable prospect,” the educational program must be “appropriately ambitious in light of his circumstances.” I do not like to see segregated placement enshrined this way. It seems that the Court does not understand the goals and capabilities of modern educational approaches. Too many IEP teams will get hung up on what is a “reasonable prospect.” Seeing education as a human right demands that we take seriously and literally our duty to create and protect a community of education where students with all types of abilities and disabilities are meaningful participants as well as beneficiaries. Initial signs indicate that the current administration is unlikely to be an ally in these efforts. Advocates should prepare to fight for a free appropriate education, but the Supreme Court seems to have just given us crucial new tools to use at the state, local, and personal levels.

The Meaning: The IDEA, Civil Rights, and Human Rights

It should be clear, particularly to any federal appointee involved with education policy, that IDEA is a civil rights statute. This is important because in the United States the civil rights of all citizens must be the same no matter in which state they reside. Though our Constitution is famously neither wholly federal nor wholly national, it is a misunderstanding of the republic to treat it as a confederacy. Unfortunately, over time, many who have opposed federal involvement in education, including some in the current Congress and administration, have sought to avoid these legal mandates through various means, including, for instance, block granting of federal education funds to the states. To do so with IDEA, and to turn over to the states the legal responsibilities described in that law, is improper, illegal, and immoral. That’s because the program is not a direct service program for children, but a series of agreements expressed as guidance and regulations designed to create national standards of compliance and help states guide more than 18,000 local education agencies and 98,000 schools to avoid litigation. Block grant proposals have not considered the burden states would be under to re-regulate 14th amendment educational rights in the absence of federal guidelines. They have not considered the effect of an explosion of litigation that the framers of the IDEA sought to avoid. 

While at the Department of Education, I found that states and local leaders were consistently appreciative of clear and balanced regulations and guidance, including clear accountability standards, and results reporting frameworks. These leaders often requested guidance, and expressed thanks when they got it. State leaders also often expressed gratitude for national standards that protected the civil rights of children and could not be strong-armed by governors or defunded by legislatures. They understood what is required in the fight for the civil rights of disabled children. I do not believe there is anyone eagerly awaiting a special education block grant. 

The Challenge: Building and Supporting Inclusive Schools

In this country, even the design of schools reiterates a message to children with disabilities that they don’t belong. Special classrooms, special wings, special programs, and even special schools are still abundant. Under IDEA, the courts have consistently supported the civil rights of Americans with disabilities, and the federal role has been strong in ensuring a free appropriate public education for all American children. The rub comes when parents are encouraged to think of their due process rights as a kind of customer relationship. Schools cannot become inclusive if parents continue to sign IEPs agreeing to separate and unequal placement for their children. Furthermore, some politicians place great weight on that “market-based” relationship. They neither know nor care that vouchers and private for-profit charter schools directly threaten FAPE. Vouchers do not carry the right to free appropriate public education, a fact that is often not made clear to a parent until it is too late. www.ed.gov/policy/speced/guid/idea/letters/2001-1/bowen3302001fape.doc.

Separate placements and private placements may promise parents that their children will be given “appropriate” education, but such placements also demonstrate every day to the disabled child and to all other children that they do not belong. Many of these young people spend years trying to recover from the rejection. 

But what do we actually mean when we say “a child with a disability?” Do we have the same expectation of benefit for all children who have any disability? When advocates push for effective education for all children with disabilities using college and career-ready standards in the general education curriculum and environment, who will stand up for the right of the profoundly disabled child to participate in the face of prejudicial assumptions that “surely you can’t mean that child.” As we learn more about intellectual disability and even profound intellectual disability, we discover that what we assumed to be a problem of cognition is often a problem of communication, and communication technologies are expanding rapidly. 

It is more difficult than ever to say that any given child has no prospect of learning. High standards are great, but only if the culture of our schools can keep up with the understanding that all means all and can deliver first-rate learning accommodations even to children they would previously have treated as custodial cases. At some point, the dignity and prospects of the child must gain the upper hand over the customer satisfaction of the parents. These are difficult issues.

The Next Step: Making the Law Work in the Real World

When the concept of special education was first developed, it was not applied to children with disabilities but rather to anyone who took specialized vocational training, including those who went to professional school. General education was education that allowed a person to develop her full personality—not just her skills. The Education of All Handicapped Children Act (PL 94-142) resulted from the discovery that 1 million children, mostly with intellectual disabilities and severe physical disabilities, were not going to school. PL 94-142 gave states the tools they needed to meet their civil rights obligations to these children and to give them access to “special” education, perhaps commonly understood in the language of the times to be skills training only, not the general education other children had a right to receive. So, an assignment to special education could be seen as a taking and probably justified the focus on due process. 

Over decades, our school systems have added more and more children to the category of special education. At the same time, our understanding of special education has shifted so that it is no longer limited to skills training. Now, more than 6 million children have an IEP. It is doubtful that these programs are takings in the classic sense, as they would have been early on, but nevertheless they are all covered by due process regulations. On the other hand, every one of these programs comes with a risk of placement in a segregated setting for all or part of a child’s day. In a framework of dignity and cultural rights, segregation is indeed a taking. Because children with disabilities and IEPs are the only children who require a contract in order to attend their neighborhood school, I am not sure this qualifies as equal protection. 

It is important to note that more children with disabilities every year (now about 1 million) attend school using Section 504 of the Rehabilitation Act to describe their accommodation needs. Section 504 carries neither the risk of placement nor procedural safeguards. https://www2.ed.gov/about/offices/list/ocr/docs/504-resource-guide-201612.pdf. The Americans with Disabilities Act (ADA) is also being brought to bear more directly on schools, and schools may yet need to create Olmstead plans to comply with the ADA. Currently, under IDEA, placement remains a serious risk. Categories still drive much of the thinking of IEP teams. Sometimes, the drive to categorize comes from families that believe that their child’s disability could be treated or ameliorated if only the schools would pay for a targeted program. Often, the drive to categorize comes from schools and teachers, both overburdened and not, who believe that they don’t have the proper credentials, or that their ability to educate all children will be reduced if they spend any time educating a disabled child. 

Educators keep drawing our attention to the social well-being of the child and his family. Do they have housing? Do they have enough food? Do the children have adult supervision? Do they have access to books or learning tools such as the Internet? These are also questions of human rights, if we have the capacity to frame them as such. It will perhaps be useful to expand this model in the future to more directly address the prior needs of children. It may be necessary for modern American neoliberals to admit that the effects of income inequality have human rights implications. 

When someone asks whether we can prove that a person has an obligation to recognize or support the human rights of others, a better question is to ask whether they have the freedom to do so. Liberty cannot be defined only as freedom from external control, but must also include freedom from greed and avarice, the freedom to understand and to do what is right, and the freedom to be fully human. Inclusive school design supports an understanding of human rights and education about human rights supports inclusive education. Inclusive education has tangible benefits for children with disabilities, helping to allow the full development of their personality and talents. Inclusive education also has benefits for children without disabilities, allowing them to develop their full humanity and to avoid being stunted by moral incapacities. Human rights are not rights we grant to others because we deem them to be human. Human rights are rights we recognize in others because we are human.

Human Rights Magazine


Each of our Section members receives a subscription to Human Rights, our award-winning quarterly magazine. For decades, it has been a trusted source of expert ideas, opinions, and discourse on a diverse array of topics in the human and civil rights arena.

About the Magazine

Published quarterly, Human Rights covers a wide range of topics in the human and civil rights arena. While the subscription is free of charge for Section members, individual subscriptions may be purchased for $18 by calling the American Bar Association Service Center at 1-800-285-2221. Additional annual subscriptions for Section members are $3 each.

If you are a member of the ABA but not the Section of Individual Rights and Responsibilities then we encourage you to join today. If you are not a member of the ABA then we encourage you to visit the ABA membership page. You can also resolve membership issues by calling 1-800-285-2221.

Please note that all information appears as it did when originally published. Therefore, some biographical information about the authors may no longer be accurate.

Editorial Board

Chair Wilson Adam Schooley

Members
Kristen Galles
Jason Miller
Serena Nowell
Claire Parins
Aram A. Schvey
Jason Sengheiser
Juan Thomas
Penny Wakefield
Stephen J. Wermiel
Alex Wohl

Issue Editors
Wilson Adam Schooley
Misty Thomas
Seth Miller

Section of Civil Rights and Social Justice

Chair Kirke Kickingbird
Chair-elect Robert N. Weiner
Vice-Chair Wilson Adam Schooley
Secretary Sheila Y. Thomas
Finance Officer Toby Graff
Section Delegate Estelle H. Rogers
Section Delegate Walter H. White, Jr.
Immediate Past Chair Lauren Stiller Rikleen
Section Director Tanya N. Terrell
Associate Director Paula Shapiro
Project Director (AIDS) and Director of the ABA Center for Human Rights Michael L. Pates
Project Director (Death Penalty Due Process Review) Misty Thomas
Section Administrator Jaime T. Campbell
Program Assistant Alli Kielsgard

Copyright Information

All articles and information on this page are copyright 2017 by the American Bar Association. All rights reserved. This information or any portion thereof may not be copied or disseminated in any form or by any means or stored in an electronic database or retrieval system without the express written consent of the American Bar Association.

Request Reprint Permission