I recently came across a report from the National Council on Disability, which is a U.S. government agency that evaluates and advocates for enhancement of the lives of persons with disabilities.
The report outlines the various difficulties that people with disabilities wrestle with in giving birth to and retaining custody of children.
The report brings up some contested ethical issues, such as the rights of disabled persons to conceive children and their rights to parent those children. The topic raises the question of whether persons who have less capabilities than the average person are still human beings with dignity and “human rights” that are otherwise granted to all other persons.
Is there a universal human right to conceive children? Is there a universal human right to be a parent to one’s children? Do these human rights derive from a respect for given human nature or merely from the self-interests of parents?
In relation to the developing ability of genetic scientists to manipulate unborn humans’ DNA and the subsequent characteristics of those persons, all of the above questions become doubly important.
Here are some passages from the report:
“The first half of the 20th century was plagued by the eugenics movement, which resulted in more than 30 states passing legislation permitting involuntary sterilization. This legislative trend was premised on the belief that people with disabilities and other “socially inadequate” populations would produce offspring who would be burdensome to society. The Supreme Court endorsed the legislative trend toward forced sterilization; as a result of these state statutes, by 1970 more than 65,000 Americans had been involuntarily sterilized. Even today, 22 years after the passage of the Americans with Disabilities Act, several states still have some form of involuntary sterilization law on their books.”
“The power of the eugenics ideology persists. Women with disabilities still contend with coercive tactics designed to encourage sterilization or abortion because they are not deemed fit for motherhood. Equally alarming, a growing trend is emerging toward sterilizing people with intellectual or psychiatric disabilities.”
“… These parents are the only distinct community of Americans who must struggle to retain custody of their children. Removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent to 80 percent. In families where the parental disability is physical, 13 percent have reported discriminatory treatment in custody cases. Parents who are deaf or blind report extremely high rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty in accessing reproductive health care, and face significant barriers to adopting children.”
I agree with the authors that this is a tragedy and a resurgence of the ideology of eugenics that produced many evils in American society in the 1930s and contributed heavily to the Nazi Holocaust and mass sterilization of people with disabilities in the 1930s and 1940s.
We also need to remember that disputes about “rights” are contests of power and legitimacy. To assert human nature, on the other hand, is not a grab for or expression of power, but an unfolding – a “becoming” – of the naturally aspirational (goal-oriented) characteristics of every human being. We live in a world limited and propelled by power, and this reality can greatly affect our ability to assert our human nature.
With the concept of “human rights”, we come closest to an aspiration of putting our power squarely behind the preservation and celebration of human nature. The power of human rights is opposed to governments, violent and repressive groups, and special interests who limit our expression of human nature in our life activities.
In regard to disabled persons, however, we can see immediately that the power struggles surrounding the application of “human rights” end up distorting any reliable definition of human nature.
Although every individual human being is unique and unrepeatable, and although we vary in millions of ways concerning our personalities, capabilities, rationality, emotional states, and psychology, a certain group of human beings are labeled “disabled” and thereby excluded from the supposed “human rights” granted to everyone else.
One problem here is that, especially due to the extreme pride in human reason and science since the Enlightenment began in the 16th century, most people in America and Europe have come to equate human nature with rationality or, more broadly, capability. Our self-confidence has come to depend on the ability of humanity to understand and create things, so we lose respect for individuals (such as the “disabled”) who appear to lack the ability to contribute productively to our understanding and creating.
Another problem is that developments since the 20th century – theories of evolution, environmentalism, extreme faith in science such as the ideology of transhumanism, communication technologies that undermine true relationships with others, and a mass, globalized society that only responds to the voices of mass movements – cause us to think less about human nature and to over-emphasize the racial or species-oriented interests of collective humanity.
Human nature is shared, but it is expressed in each individual. Collective humanity, progress, and focus on the sole welfare of humanity as a race or species tend to stifle opportunities for the expression of human nature in unique individuals.
Persons with disabilities are victims of a collective vision of humanity. Since the 1930s, there has been some sense in the U.S. that the evolution and welfare of humanity demands the elimination of types of persons who are not as capable physically or intellectually as the average human being. Disabled persons are therefore prevented or dissuaded from having children because they will supposedly pass their unwanted genetic material on to children and future generations.
Much of the emphasis for new genetic enhancement technologies is on testing, identifying, and destroying human gametes or embryos or aborting early-stage human beings that appear to have the genetic predisposition for a “disability”.
The collective vision of humanity also harms persons with disabilities by undermining the value we place on any human being that does not appear to be “normal”. Even though human individuals carry thousands of types of mental, psychological, and physical afflictions, some of them expressed or dormant in their genes, the powerful people in our society use more visible characteristics to select certain types of people and label them as “disabled”. We have this persistent, false myth that there are “normal” and “abnormal” individuals. It is the “abnormal”, “disabled” people who are deemed unworthy of procreating and parenting.
Around 90 percent of pre-born human beings identified as probably having Down syndrome are aborted in the United States. In some European countries and Iran, the governments proudly claim to have eliminated any such persons.
But here’s a contradiction: The United States has some fairly aggressive laws that protect the interests and welfare of persons with disabilities. It seems that the public holds significant compassion for disabled people and mostly wants to find ways to integrate such people into the thriving human community.
So why the confusion between respecting and discriminating against people with disabilities?
I argue that it comes down to a fundamental confusion about human nature. Our society needs to recognize that human nature is a collection of precious characteristics that are inherent in each human being. Each individual human being is unique and unrepeatable, and they act out their human nature, and relate to others, in amazingly creative ways.
The demands for genetic enhancement of human beings, including alteration or elimination of disabilities, are far removed from celebration and joy in given human nature.
Experimentation with germline engineering, which will be carried through generations, will cause the errors of genetic enhancement to be permanent and potentially universal.
Personally, my interactions with persons with Down Syndrome have been some of the most loving and fulfilling experiences I have had with other human beings. Human nature shines from their eyes in a way that we should all treasure.
Human nature is beautiful, fulfilling, sacred, and worth preserving.
One must love humanity in order to reach out into the unique essence of each individual: no one can be too low or too ugly.
~ Georg Buchner