Public Toxins and the IDEA: In Quest of an Accountable Economy and a Fully-funded IDEA
By Robert K. Crabtree, Esq
Mr. Crabtree was a founding partner of Kotin, Crabtree & Strong, LLP, a general practice firm in Boston with a major concentration in special education and disability law. He now serves the firm as “of counsel”.
People often ask what major changes I have witnessed across the decades of my work advocating for those with intellectual, behavioral, emotional and/or physical disabilities. My answer always includes the large increases we have seen in the numbers of children identified as having autism spectrum disorders, learning disabilities, intellectual disabilities, attentional issues and behavioral and mental health disorders.
Why the increases? Much of the answer lies, I think, in the choices that we make as a people – political, economic and cultural choices that permit materials to be introduced into our environment that have not been rigorously tested for their effects on the neurological development (including learning, emotional and social navigation skills) of our children. These are choices that, whatever their positive societal benefits may be, too often impose a terrible price on children and their families. When a substance is toxic, manufacturers too often refuse to acknowledge the problem, and regulatory agencies, often vastly underfunded, too often fail to identify the problem or to require the manufacturers to cease using the toxic substance or to assume the cost of the harm the substance causes.
To illustrate the issue, imagine a corporation that wishes to reduce the cost of manufacturing a certain product by injecting ingredient X. Let’s say that Ingredient X, which can be made by combining several chemicals in the corporation’s laboratories, is much less expensive than another substance that serves the same function and has been known and used for generations as safe and reliable. However, Ingredient X can only be made with a substance that has been shown to have carcinogenic effects in the neurodevelopment of laboratory animals, though its effects on humans have not – and cannot – be effectively tested without long-term, large-sample experiments. Should the corporation be allowed to introduce its product containing Ingredient X before the product’s potential cost in harm to humans – and especially young children – is clearly understood, and strategies developed to minimize or eliminate that harm if it is to be used at all? Suppose the corporation’s ability to stay in business depends on whether it can use the ingredient and suppose that its going out of business would mean a loss of thousands of jobs in an economically struggling area? Suppose the product in question is a medical device or medicine on which thousands of critically ill patients depend for their lives? These are the sorts of questions that ought to be openly addressed and resolved in a system where all values – including the undeniably precious value of having children protected against exposure to carcinogens – are weighed and where the costs of business are allocated honestly to industry and the government rather than silently to children and families.
In “Mind Games,” an eloquent article published in Orion Magazine in 2011 (https://orionmagazine.org/article/mind-games/), biologist Sandra Steingraber, Ph.D., reflected on the search she had made some years previously for a nursery school for her child. She grappled with the question why the outdoor play structures at a school close to her home had been built with pressure-treated lumber – a material that contained arsenic at the time – even though arsenic had long been identified as a likely carcinogen when the play structures were built. She noted that it took seven years after she spotted that problem in the local playground before the EPA released a risk assessment finding that children who played frequently on structures using such arsenic-impregnated materials were at significant risk, over their lifetimes, of contracting cancer. Arsenic, by the time Ms. Steingraber wrote, had also been found to be a developmental neurotoxin that impairs the growth of the brain and undermines learning.
As she researched several more chemicals and materials that could affect learning and other brain functions, Dr. Steingraber happened across a 1936 medical volume in a used bookstore called Holt’s Diseases of Infancy and Childhood. In an entry called “Miscellaneous Diseases, Lead Poisoning” she read that exposure to lead was clearly a cause of irreversible damage to the brain, causing cognitive and behavioral impairments. The entry lamented the lack of any laws in the country to prevent the use of lead in toys or furniture and the lack in all but three states of any requirement to label paint so that a buyer could see that lead was an ingredient.
Some thirty-five years elapsed after the entry in that medical volume (and it must be assumed that the medical world was well aware of the effects of lead poisoning on childhood development well before that entry was written) before Massachusetts enacted one of the nation’s first state lead poisoning prevention laws, and it was not until forty years after that 1936 comment that lead was removed from the manufacture of paint.
Dr. Steingraber’s article discusses several more examples of unseen agents that are regularly introduced into our environment without sufficient screening for the possibility of harm to children’s cognitive, social and emotional growth. The consequence of this practice is that children and their parents are “left to serve, as best they could … as their own poison-control centers.” And their ability to act effectively is typically hindered by a lack of information and by defensive misinformation issued by manufacturers, an approach of the kind we witnessed for many decades while manufacturers of cigarettes denied and obfuscated the harm that tobacco causes both to smokers and to passive breathers of smoke.
For our community of stakeholders in the world of disability advocacy I suggest that there are at least three major implications of the challenges we have described:
First, advocates should support a robust, well-funded and independent regulatory system – state and/or federal – that emphasizes the use of reliable scientific methodology to determine, to the extent possible, the potential effects of any material that may cause neurodevelopmental injury to children before that material is allowed into the marketplace. That system should be insulated against the predations of corporate interests who, when the stakes are high, will sometimes aggressively attack the scientists who produce information that threatens their use of products; the history of treatment given to those who reported studies showing the devastating toxicity of lead in children amply demonstrates this point. See “Standing Up to the Lead Industry: An Interview with Herbert Needleman,” Rosner and Markowitz, Public Health Reports, May-June 2005, Volume 120, pp. 330-337 (at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1497712/).
If it is decided that, despite the likelihood of harm to a predictable population of children, a product’s potential benefit to the public outweighs that risk – in jobs, in convenience or whatever that benefit may be said to be – then at least there will be a record of the likely cost to children and their families and a decision can follow regarding how and by whom that cost shall be borne. A truly humanitarian regulatory system, I would argue, should lock out a dangerous product when the presumed “benefit” for consumers of that product is not essential for the public’s well-being but is only likely, say, to make the product a bit more “convenient,” “entertaining,” or aesthetically pleasing.
Second, while we wait for Congress and our state legislatures to strengthen our regulatory systems to protect our children, parents will continue to need to pay as close attention as they can to the best available information about substances that may cause harm. While the task may be impossible to fulfill to perfection, adults should at least strive to learn of any scientifically supported findings relevant to children’s health and, to the extent possible, shape their choices to minimize risks of exposure. (One source of information, among many, is the World Health Organization’s Atlas on Children’s Health and the Environment, WHO 2017, downloadable at: https://www.who.int/ceh/publications/inheriting-a-sustainable-world/en/ ).
Following the science, for the layperson, is complex, to say the least. Scientific methodology rarely leads to definitive conclusions: it is in the very nature of science to be tentative – to set out probabilities instead of certainties, subject to the next peer-reviewed research report. For many, the built-in ambiguity of science is intolerable as they desperately seek certainty where the safety of their children is at stake, and they may be tempted to hold tightly to an answer that seems definitive, but that is not truly an answer. For all parents, including those who are especially prone to latch on to what seem to be black-and-white conclusions even against growing evidence to the contrary, it is important to cultivate an intelligent skepticism as findings are reported, and to make decisions cautiously and tentatively, based on findings that gather increasing scientific support as new research is conducted over time.
One dramatic illustration of this point in our times is the growing evidence that vaccines given to children to prevent measles, mumps and rubella (MMR) do not cause autism. See “Safety of Vaccines Used for Routine Immunization of US Children: A Systematic Review,” Maglione, et al., PEDIATRICS Volume 134, Number 2, August 2014 (https://pediatrics.aappublications.org/content/pediatrics/early/2014/06/26/peds.2014-1079.full.pdf). There was a surge of alarm about vaccines in 1998 when a British doctor claimed to have established a causative connection between MMR vaccines and autism. Those data were later found to have been fraudulently skewed and of no validity, and the paper reporting that false conclusion was removed from the magazine, Lancet, that had originally published it. Unfortunately, however, despite unequivocal scientific dismissal of the fraudulent findings, suspicion of vaccines has persisted in some quarters and reluctance to have children vaccinated has led the World Health Organization to list vaccination hesitancy as one of the ten most robust threats to global health in 2019.
Third, as I noted in an earlier essay (see “Five Issues that Candidates Should Address,” Fall 2019 Newsline), Congress has never fully funded IDEA to the extent – 40% – promised in the original enactment of the law; I urged in that light that political candidates stand for full funding. In light of what we have discussed here, I submit that there is no valid reason to deny that promised level of funding, and more. Though the findings vary from substance to substance, it is certain that a significant portion of the disabilities that undermine children’s learning and developmental growth and that make a child eligible for special education are caused by, or amplified by, harmful products that are in the marketplace because of inadequate screening, both by the makers of the products and by weak regulatory systems. Part of the societal price of that systemic failure is the extra cost involved in providing specialized instruction and related services to the affected children. The costs of harmful products are thus borne by the victimized children twice over: first in the injury they suffered in exposure to the product, and then in the burden they bear when they are not provided with adequate educational and supportive services to help them achieve their full potential. And to those costs must be added the dollars spent by families providing, to the extent they can, private services to supplement what their schools do not or cannot provide, as well as the deep and chronic intangible costs to those families in time and emotional stress as they attempt to support their injured children
Any choice to foster business growth in our economy without protections that are sufficient to prevent and minimize children’s exposure to harmful substances is indefensible. The harm that a poisonous product will cause is a cost of production, whether or not it is acknowledged openly. In the face of that harm, a humane and child-centered culture should ensure that the cost of the harm is not paid by children and their families, but “internalized” by the maker of the product or sufficiently minimized by law and regulatory action. To the extent that children still suffer harm caused by the product – and no system can perfectly prevent all harm – the educational and supportive services that can help the child maximize his or her potential and enjoy a full and productive life despite the injury should be fully and gladly provided without argument.
This war-horse will return with further reflections on environmental issues and the world of disability advocacy, but for now, I will close by urging readers to track down the Steingraber article (https://orionmagazine.org/article/mind-games/) that I have alluded to in this piece. There is much more in her discussion than I have described, and it is all worthwhile reading for those who need to navigate the shoals of advocacy with good information and an intelligent framework for thinking through their positions and their actions. So too, I highly recommend the book, Children and Environmental Toxins, Philip Landrigan and Mary Landrigan, Oxford U. Press, 2018, as an exceptionally readable and enlightening overview of the chemical industry, the range of consequences its products have brought into our lives, and the systems of protection (as yet far from adequate) to prevent children’s exposure to toxic materials.