Reflections on the Americans with Disabilities Act 25 Years Later

July 26 marks a momentous anniversary for persons with disabilities living in the United States. On that day in 1990, President George H. W. Bush signed into law the Americans with Disabilities Act (ADA), the first legislation of its kind focused solely on prohibiting discrimination against persons with disabilities and mandating that all Americans be accorded equality in pursuing jobs, goods, services and other opportunities.

The ADA has radically improved the lives of those living with disabilities over the last 25 years, especially in the areas of accessibility, education, and employment. However, laws can only protect individuals from institutionalized discrimination. Twenty-five years later, forms of discrimination can still be seen to a greater or lesser extent in American societal attitudes – perhaps even more so in attitudes toward and fears about those with mental illness and intellectual disabilities.

Background of the ADA

The ADA can trace its origin to the civil rights legislation that began in the 1950s, and eventually resulted in the Civil Rights Acts of 1964 and 1968as wells as the Voting Rights Act of 1965.  This was a turbulent time in the United States, but the result was the initiation of a period of ongoing advancement for certain Americans through laws that prohibited discrimination based upon race, religion, national origin and sex. Missing from that list of Americans, however, were those with disabilities. It would be a few years later, in 1973, that Americans with disabilities were first awarded federal protection against discrimination. Section 504 of the Rehabilitation Act was the first legislation to offer federal protection to persons with disabilities. It prohibited discrimination on the basis of disability in federal programs and by recipients of federal financial assistance, but it stopped short of protecting people with disabilities from discrimination in employment, or public accommodations in the private sector.

The Americans with Disabilities Act’s protections largely paralleled those established in the previous decade for women, and for racial and ethnic minorities, but the law made clear that equal treatment did not mean identical treatment. The ADA required that reasonable accommodation be provided in employment and in public spaces for those with disabilities, and that any practice that made people with disabilities feel unnecessarily different be eliminated. The law acknowledged that “individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies,” etc. [1] and that “people with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally.”[2]

In short, the ADA, like the civil rights legislation that preceded it, affirmed the humanity of individuals with disabilities in law, and therefore affirmed the law’s obligation to ensure that their full inclusion in society was not impeded by the injustice of discrimination. The 14th Amendment was cited as the law’s authority to afford those with disabilities the same rights as all other citizens, that is, the right to life, liberty, property, and equal protection under the law.[3]

For the estimated one in five Americans who lives with a physical or mental disability, the benefit of the ADA has been tremendous. It reinforced the requirement of the Individuals with Disabilities Education Act (1975) that required children with disabilities to have the opportunity to receive a “free, appropriate, public education” just like other children. It has ensured that public buildings provide access for those with physical disabilities, has provided for adaptive devices for people who are visually or hearing impaired, protected people with disabilities in employment, required that accommodation be made in public transportation, etc. The law is certainly not flawless, but it provides a legal framework wherein individuals, or their families, can have recourse to remedy if they show they have been victims of discrimination.

Intellectual Disabilities

With its many successes, application of the law has been unclear with regard to those with mental illness and intellectual disabilities. For example, disparities remain in the way health insurance plans provide for the care of those with mental illness, and until only recently those with a qualified disability under the federal Supplemental Security Income (SSI) program who were capable of some level of employment were discouraged from working because their employment could result in the loss of essential public benefits needed to support the additional cost of living with a disability.

The ABLE Act (Achieving a Better Life Experience Act of 2014) is the latest success in addressing this critical issue. It has provided a way for those with disabilities who are capable of some level of employment to accumulate more than $2,000 in assets in a special account and still remain eligible for essential public benefits such as SSI and Medicaid. Up to $14,000 per year may be deposited into an ABLE account to cover certain qualified expenses such as education, housing, transportation, employment training and support, assistive technology, personal support services, and health care expenses.

Prenatal Testing for Down Syndrome

Another area where those with intellectual disabilities remain victims of discriminatory attitudes in in the area of prenatal testing targeted toward the prenatal identification of fetuses with chromosomal abnormalities like Down syndrome, Trisomy 18 or 13, etc. This may be the only area of medical diagnostic testing being aggressively developed and offered to women that cannot also offer or recommend a course of therapy to benefit the patient. The anticipated growth of the noninvasive prenatal testing market is expected to increase from a current value of less than $1 billion to $3.62 billion by 2019.[4]  As the now deceased disability rights activist Adrienne Asch stated, prenatal diagnosis “is not a medical procedure to promote the health of the fetus. It is a procedure to give prospective parents information to decide whether or not to eliminate a possible future life.”[5] The decision to “eliminate” a pregnancy is made by about 67% of Americans who receive a prenatal diagnosis for Down syndrome, and it is clear evidence that prejudicial attitudes remain around the topic of intellectual disability.

To reinforce the claim that social attitudes toward disability did not change with the law, researchers have shown that in the immediate years following the passage of the ADA, the termination rate after a prenatal diagnosis of Down syndrome actually increased. The authors of the study claim that the ADA may have “promoted disability-selective abortion if social interactions reinforced negative attitudes toward people with disabilities, or if the media portrayed people with disabilities as incurring undesirable costs for society.”[6] Statistics published recently in the American Journal of Medical Genetics further support this claim. De Graaf, Buckley, and Skotko’s research shows that abortion after prenatal diagnosis has reduced the population of individuals living with Down syndrome in the U.S. by approximately 30%. [7]

In the mind of those living with disabilities and their families, it is impossible to separate a mentality that endorses prenatal diagnosis and abortion from attitudes and acts of discrimination against those living with disabilities. Many parents who have children with Down syndrome, for example, report that they are frequently asked by people who are practically strangers if they “didn’t have the test,” implying that if they had done so they would not have a child with Down syndrome.

Evaluating the Success of the ADA with Cultural Attitudes

So, how do we evaluate the success of the ADA in helping cultural attitudes toward disability evolve to one of acceptance? The findings of Congress listed at the beginning of the ADA state that:

• Physical and mental disabilities in no way diminish a person’s right to fully participate in all aspects of society; and that
• Discrimination against individuals with disabilities continue(s) to be a serious and pervasive social problem; and that
• People with disabilities occupy an inferior status in our society, and are severely disadvantaged socially; and that
• The Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, (and) full participation; and that
• The continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous.

These findings, and the regulations that were put in place by the ADA, can certainly claim success in the expansion of public and private accommodations for those with disabilities, and in offering legal recourse to individuals if they believe they have been victims of discrimination in employment, housing, education, etc.; however, have they had a sufficient impact in shaping social attitudes toward acceptance of intellectual disability?

The growth projections for the prenatal testing market, and the statistics regarding decisions people make following those tests give a grim outlook that the fear and stigma associated with disability are not going away. In fact, perhaps it is being fueled by the industry itself. With so much profit incentive, some have questioned if healthcare providers are guiding the practice of prenatal testing, or if it is the industry that is poised to reap substantial profit from the news they are able to deliver with ever increasing accuracy and ease.

The decision some make following prenatal diagnosis of an intellectual disability may be largely related to the social stigma attached to the disability and seen regularly in popular culture. The “Spread the Word to End the Word” campaign – a campaign to end the use of the word “retarded” – was initiated to bring awareness of the harm language can cause in shaping attitudes toward the intellectually disabled. The forced apologies (or refusals of apology) for the use of the word by celebrities like Lebron James and Ann Coulter are evidence of continuing insensitivity.[8]

These insensitive attitudes of discrimination and prejudice cast a dark shadow over progress toward acceptance and inclusion. It is a shadow of ignorance that obscures knowledge of the joy that families experience when they say yes to a child with a disability, and the unique attributes those with intellectual disabilities bring to human culture. These attitudes remain to this day a “serious and pervasive social problem.”

Legal Perspectives on Disability-Selective Abortion

The 14th Amendment, the same amendment used by the ADA to actuate rights to life, liberty, property, and equal protection of those with disabilities, was used in 1973 by the Supreme Court to justify a woman’s “right to privacy” with regard to her decision to have an abortion. There are, however, legal scholars who question the application of the Supreme Court’s jurisprudence in Roe v. Wade and Planned Parenthood v. Casey rulings to the decision  to terminate a specific child with respect to disability or sex. In justifying abortion under a right to privacy in Roe v. Wade, the Court did not presume to claim that right as absolute. The decision states that States “may properly assert important interests in safeguarding health, in maintaining medical standards, and in protecting potential life,” and that in some cases the interest may become “sufficiently compelling to sustain regulation of the factors that govern the abortion decision.”

In a friend of the court brief presented on behalf of the Jerome Lejeune Foundation and two other Down syndrome advocacy organizations to the Supreme Court on October 30, 2013, the Bioethics Defense Fund attorneys argue that the Court “has never endorsed a right to abort children only because they have been detected to have a disability.”[9] Further, they state that the Court has “repeatedly premised its reaffirmation of abortion rights in terms of the right to terminate an unintended pregnancy,” and that they have “never framed the protected abortion decision as whether to bear or abort a particular child based on identified traits of genetic variation, disability, or other health conditions.” They state that the Court’s decision in Casey “formulated the abortion decision as one confronting a woman ‘when the woman confronts the reality that, despite her attempts to avoid it, she has become pregnant’; – not when she accepts a pregnancy at first, but then comes to perceive the child she is carrying as defective.”

The selective termination of a child because they have a disability is a different decision than the decision to abort when contraception fails. It is an act of discrimination because it is a targeted decision made against an individual that is usually based upon ill-informed assumptions. A prenatal test cannot possibly provide knowledge of who a particular child will be, the extent of their disability, or how his or her life will impact the life of the family. The decision to terminate in this case qualifies as a form of discrimination that is clearly in conflict with the findings and philosophical underpinnings of the ADA and other legal protections that have been put into place in the U.S. to shield those with disabilities from discrimination.

This most deadly form of discrimination in the U.S. is rarely acknowledged as discrimination at all outside of disability rights conversations. It results in approximately 3,100 abortions of babies each year in the U.S. alone.[10] Some states have passed or attempted to pass laws restricting disability and sex-selective abortion. As those laws are challenged, legislators and the courts need to carefully consider the intent of the abortion-related court decisions of the past and their applicability to these procedures when they are used to target specific persons or a class of persons based upon qualities their parents decide are undesirable.

If we consider international opinion, disability-selective abortion violates Article 10 of the U.N. Convention on the Rights of Persons with Disabilities that requires that “States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”[11]

Disability selective abortion is similar in kind to sex-selective abortion that has been condemned by the European Parliament as “ruthless” and as “gendercide” in that it is a form of “sexual discrimination, often extended to include unborn, predetermined baby girl foetuses, which are aborted, abandoned or killed, for no other reason than the fact that they are female.”[12]

For a society that values diversity, disability-selective abortion causes a devastating loss. And again, it reflects negatively on those living with disabilities as somehow being less than they should be. Remember the commonly heard question: “Didn’t you have the test?”

Conclusion

The stated purpose of the ADA is a noble one. The law desires:

1. to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities;
2. to provide clear, strong, consistent, enforceable standards addressing discrimination against individuals with disabilities;
3. to ensure that the Federal Government plays a central role in enforcing the standards established in this chapter on behalf of individuals with disabilities; and
4. to invoke the sweep of congressional authority, including the power to enforce the fourteenth amendment and to regulate commerce, in order to address the major areas of discrimination faced day-to-day by people with disabilities.

The ADA has largely realized these goals and brought vast improvements to the quality of life for persons with disabilities over the last 25 years, but we cannot consider the task complete. Horrific stories of racial prejudice, violence and abuse are still all too common in the news and can cause us to wonder how far we have come since the 1960s. The statistics that reveal the decisions made after an unexpected prenatal diagnosis – and the fact that we still have to campaign to end the “R word” – indicate that personal attitudes toward intellectual disability also suffer from deeply ingrained prejudices that the ADA has not managed to change.

The ability to easily and successfully screen prenatally for Down syndrome and a small number of other disabilities is only the leading edge of where prenatal technologies will be in a short while. Soon hundreds of genetic variations may be identifiable through a simple maternal blood test, placing families in the uncomfortable position of making a decision over the life or death of their child.

The ADA called for the federal government to play a central role in enforcing the standards it established on behalf of individuals with disabilities. Unfortunately, this area of disability rights interfaces with a topic that is perhaps the most contentious one in public discourse in the U.S. – abortion rights. The current government has also never been more divided along partisan and ideological lines. When politics and ideology impede social progress, the ones who usually suffer most are those who cannot speak for themselves. Because of this, disability-selective abortion is fundamentally an issue of social justice – not just a religious or “pro-life/pro-choice” issue – that directly impacts a community of persons our law is mandated to protect.

On this 25^th anniversary of the Americans with Disabilities Act, we need to recommit ourselves to consistency with regard to the law and the rights of persons with disabilities. It is past time for a serious evaluation of how our acceptance of prenatal diagnosis resulting in abortion damages the disability community by reinforcing attitudes that focus on the disability before the person. As Adrienne Asch said, the only thing a prenatal diagnosis can provide is a “first impression” of who a child will become. Making radical and exclusionary decisions against a person based upon a first impression is to make a decision that is based upon a preconceived opinion and not one based on reason or actual experience. That is one of the definitions of prejudice. We have laws for that.

Mark Bradford is president of the Jérôme Lejeune Foundation USA.

[1] 42 U.S. Code Chap 126 § 12101 (a)(5)

[2] Ibid., (a)(6)

[3] Ibid., (b)(4)

[4] See “Non-Invasive Prenatal Testing (NIPT) Market Expected to Reach USD 3.62 Billion Globally in 2019: Transparency Market Research.” Accessed on July 23, 2015 at http://www.prnewswire.com/news-releases/non-invasive-prenatal-testing-nipt-market-expected-to-reach-usd-362-billion-globally-in-2019-transparency-market-research-238824411.html.

[5] Quoted in Elizabeth Weil, “A Wrongful Birth?” New York Times Magazine, March 12, 2006 accessed on July 22, 2015 at http://www.nytimes.com/2006/03/12/magazine/312wrongful.1.html?pagewanted=all&_r=0.

[6] Dov Fox and Christopher L. Griffin, Jr.  “Disability-Selective Abortion and the Americans with Disabilities Act.” Utah Law Review 3 (2009) 823-826).

[7] Gert de Graaf, Frank F. Buckley, Brian G. Skotko. (2015) Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States. Am J Med Genet Part A 167A:756–767.

[8] See http://www.r-word.org/r-word-jeers.aspx (accessed July 22, 2015).

[9] Accessible online at http://bdfund.org/wordpress/wp-content/uploads/2013/10/FILED-AmicusLeJeuneSDiDSC-BDF.pdf.

[10] De Graaf et al.

[11] See http://www.un.org/disabilities/convention/conventionfull.shtml.

[12] See European Parliament Resolution of Oct 8, 2013 http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//TEXT+TA+P7-TA-2013-0400+0+DOC+XML+V0//EN.