Intellectually Impaired People: The Ongoing Battle

By Klaus Rose

Intellectually Impaired People: The Ongoing Battle addresses challenges against the background of history, changing societal environments, and current intellectual approaches and attitudes toward persons with disabilities. The book discusses national and international conventions, societal attitudes, sheltered workshops, the right of intellectually impaired persons for self-responsibility and its limitations, and the place of mentally impaired persons in the public image. Additionally, the book attempts to capture the forces that drive the changes of our conceptual frameworks.

The US Tuskegee study which withheld antibiotics from black men with syphilis was not ended by scientific criticism but by a courageous man, press reports, and a changed social perception. The non-hiding of handicapped children is not the result of government orders, there are many non-resolvable dilemmas and tension between supporting, understanding, and patronizing a complex situation with many potential future avenues.

• Recognizes how contradictory feelings and attitudes toward impaired persons have a complex historical background
• Sheds light on society and our institutions that deal with disabled people and the limitations of an isolated medical approach
• Covers national and international conventions of mentally impaired persons

• Language: English
• Publisher: Academic Press
• Release date: Mar 9, 2023
• ISBN: 9780443188121

Klaus Rose

Dr. Klaus Rose is a medical doctor by training and profession. In the 1990s, after clinical training, he joined the pharmaceutical industry. In 1999 at Novartis in Switzerland, he came across clinical studies in children and was intrigued. His eldest daughter suffered from Sturge–Weber syndrome, which is serious and very rare. Dr. Rose became passionate about “pediatric drug development” and what the European Medicines Agency (EMA) called “Better Medicines for Children.” He became global head pediatrics at Novartis from 2001–2005 and moved to the same position 2005–2009 at Genentech/Roche. After one more year at a regulatory company, he became an independent consultant in 2011. He advises companies on EMA “pediatric investigation plans” (PIPs), and Food and Drug Administration (FDA) pediatric requests or demands. He detected fundamental flaws in “Pediatric Drug Development“ and publishes about this (and more) in peer-reviewed journals and medical textbooks.

Book preview

Chapter 1: Introduction

Abstract

Mankind was always aware that some are less gifted. But only the last few centuries and decades have seen an intellectual processing how to describe and assess intellectually impaired people. This process evolved on the background of mankind’s zigzag movements that included wars, world wars, mass murder, concentration camps, successful parents’ protest against respected specialists, and rebellions of those affected by various handicaps. A high level overview over the emergence of modern medicine, basic thoughts about the inner structure of modern society, and further key elements are outlined. This book does not intend to give concrete hands-on guidance how to raise special children. Instead, it attempts to explain the place of physically and intellectually impaired people in the history of mankind. Hopefully, it will help those with a special interest. It could not have been written without our moderately intellectually impaired daughter Rebecca who passed away in 2021.

Keywords

Parent advocacy groups; Retarded children; Idiots; Hunters and gatherers; Modern civilization; Industrialization; Adam Smith; Karl Marx; Charles Darwin; United Nations

This book would not have been written without our older daughter Rebecca, who was moderately intellectually and physically impaired. You can prepare the birth of a child, but you do not plan the birth of a handicapped child. There are thousands of different reasons for impairments. Some are congenital, others are caused by diseases, by vaccination (very rarely), by accidents (the most frequent cause of death of young humans in modern society), by violence, by acts of God, and more. For some, we have a clear diagnosis from birth on; for some, a diagnosis comes later; for some, never. We take clear diagnoses for granted today. They help with immediate steps in medical treatment and later to find out what to expect. Special children and their parents do not enter the world that the parents expected before the birth. Some aspects of this new world are fundamentally different from the expectations, others comparable. Comparable is that 1 min there are just two (or more, if there are already siblings); the next minute there is one more (or two more in the case of twins). Every child is cute at birth, and you close it in your heart. You do not care for future trouble. You just accept future challenges. Many things remain the same, such as job(s), house, friends, family, neighbors. In all these regards, it is very simple: you and your new child are now part of this world, with new responsibilities, and with a new joy in life that childless couples are longing for and missing. Different is that out of the blue you must make decisions in areas that are new to you. You noticed something unusual in your child. Will you trust the nurses that tell you that they see nothing or that they think it is not relevant? Do you escalate your observation until you find somebody who is competent? Do you accept his assessment, or do you escalate further? Do you opt for an operation, for conservative treatment, for waiting? Today you have the internet where you can look for a tentative orientation and first answers, which may help, or may further confuse you. These challenges never end. Later it is the question which kindergarten will be suitable; which school will be suitable; where can your child live; and so forth.

One technical explanation at the very beginning. Many words are used in this and the following chapters that are hurtful, degrading and insulting for today’s taste toward handicapped people. I use these terms nevertheless. How else should I describe people who are labeled as idiots in older sources and accounts? I could have filled half the book with words in quotes, always saying idiots instead of idiots. Instead, I use the terms used consistently in the literature as far as they are used in the respective historical framework. I hope that the explanation and apology made here is sufficient to assert convincingly that the use of these words is not intended to belittle the people described.

Many books offer guidance for parents with special children. Some are good. Others guide or instruct professionals of various medical, paramedical, educational and other professionals who are training for later jobs on a hands-on level. This book attempts, so to speak, the opposite: to introduce and give an overview over the situation and challenges of handicapped children and adults, with a special focus on intellectually impaired people in human history, on the background of our rapidly evolving modern society and modern science. Today, we regard every person as a human being that deserves respect and dignity. Do not take that for granted, and do not be surprised when you meet people who think the opposite, openly or half-hidden. And people who behave accordingly. People often say one thing, mean something completely different, and do things that you would never have expected. You have to learn to deal with that. Many of those things that you personally might regard as obsolete are still around in the cloud of social interaction. You have to deal with them, too. It is easier if you are prepared.

In the not too recent past, children that did not correspond to the official and semiofficial norms were put away into an institution where they would allegedly be treated and cared for lovingly by well-trained specialists. You believed that if you blindly trusted institutions’ and specialists’ official self-portrayals. In reality these institutions were harsh, joyless environments, with punitive disciplinary regimes, no concession to individuality and rapidly spreading contagious disease in the closely packed wards, as oral histories looking back reveal.¹ These institutions did not change their characteristics because of progress in science, but under the pressure of pioneering parent groups, followed by public outrage of reports in the media.¹–³ How did these parent groups describe their children and call themselves? In the United Kingdom, the most important such group called itself originally National Association of Parents of Backward Children (NAPBC). It changed its name to The National Society for Intellectually Handicapped Children (NSMHC) in 1955, then to the Royal Society for Intellectually Handicapped Children and Adults in 1981.³ Today, it uses the abbreviated title Mencap.⁴ The Arc of the United States was founded in the 1950s by parents of children with developmental disabilities. It called itself the National Association for Retarded Children (NARC) from 1953 to 1973, then National Association for Retarded Citizens (NARC) from 1973 to 1981, Association for Retarded Citizens of the United States (NARC) from 1981 to 1992, then Association for Retarded Citizens of the United States (ARC) and assumed its present name of The Arc of the United States (The Arc) in 1992.⁵,⁶ When the Arc was established, little was known about intellectual disability or mental impairment, then called mental retardation. And very little was known about its causes. That the Down syndrome is caused by one human chromosome too much (#21) was finally detected in 1959. From today’s perspective, previous attempts to explain why children had Down syndrome were absurd and adventurous. The name Mongoloids was given to people with Down syndrome by John Langdon Down in 1866 when he described systematically such individuals for a first time. The term Mongoloids had the racist undertone that people of Mongolian background were worth less than others. This is why the obsolete term of Mongoloids is banned from our vocabulary today.⁷ We will discuss the Down syndrome in depth later in this book.

We see from the names parent groups gave themselves the struggle to intellectually process that there were children with obviously less intellectual capacities than the average. But they were nonetheless loved by their parents, regarded by them as full members of the human community, deserving full medical care and support in their development. The Arc of the US partners with the organizations AAIDD,⁸ ANCOR,⁹ ASA,¹⁰ ASAN,¹¹ TASH,¹²,¹³ NACDD,¹⁴ UCP,¹⁵ and Easterseals.¹⁶,¹⁷ Each of these acronyms and their full names has an intriguing history, including how their self-chosen names changed over time. We discuss these in more detail in later chapters. The terms retardation and retarded became pejorative, derogatory, and demeaning in the emerging and evolving framework in which society saw special people, parents’ organizations and other advocacy groups. These organizations and advocacy groups changed their names to reflect the desires of people with disabilities and to adapt to changed mainstream thinking. For example, the Arc of the United States is today just The Arc.⁵,⁶

The younger children are, the more vulnerable they are and the more they need protection. But they also attract people and institutions that prey on them for various reasons that we perceive as abusive, disgusting, criminal and murderous today. It is most disgusting today for us to see such behavior in those from whom we expect protection, not the contrary. The more the power of the modern state expanded, the more also children fell into its clutches. Not only disabled children, but children from all parts of society who were too weak to protect themselves against abuse. Children of indigenous peoples were taken away to be educated in the language and in the culture of the majority in Canada, the United States, Sweden, Finland, and Australia. Comparable atrocities were committed toward minorities and toward individuals that lacked societal protection in Switzerland, Ireland, and many more countries. These abuses stopped only when the general attitude toward different cultures had so far changed that such an approach started first to be seen as unacceptable and eventually was classified as abuse and worse. To a significant extent, the abuses that accompanied the formation of modern societies are getting only now gradually revealed. Many of the responsible institutions are still powerful and influential today, such as various churches and charity organizations. Such institutions tend to admit just as much as has been unearthed and revealed anyway.¹⁸–²⁹

In the recent past, mankind has entered two new stage in its evolution. One is that we lost the illusion of a future without wars. Russia’s attack on Ukraine has shattered that illusion for centuries to come. The other stage in evolution is that life was materially harsh in almost our entire history. Whatever possessions people had was hand-made, either rather precious and taken care of carefully, or thrown away after having been used. Hunters and gatherers cannot carry around many possessions. Science, industrialization and modern agricultural production have changed that. In the past, rich people were fat, proud of it, and well dressed. Poor people were skinny, and their clothing showed their poverty. Today, well-off people work out and remain slim, while many less well-of people enjoy too much bad food, become overweight, and get additional health problems as a result. Young people walk around in denims with holes that in the past would have been perceived as a sign of poverty. But these denims are bought in boutiques and cost more than intact ones. Women can today remain attractive and sexy well into their 60s. Others lose their attractiveness much earlier, get fat and used up, and look like grandmothers already by 40 (seen with male predatory eyes). It is inversely similar in males viewed through the female eye. And in women looked at with female eyes to judge the attractiveness of the competition. Or predatory female eyes of women who like women better. And vice versa again. But let us stay on topic: our living conditions, values, challenges, and taboos have changed. One such change is that we value every human life.

Life is definitely not less harsh today. But the characteristics of challenges have fundamentally changed. We need less of our income to feed ourselves and our children, and more to dress elegantly, buy a house, a car, a TV, a motorcycle, an I-phone, a laptop, an expensive bike, a plane, a yacht, go the gym, go out, pay insurances, pay the education of our children, enjoy holidays or whatever else to feel good. Jobs have become intellectually more demanding, and the times when you could support a family without much education are largely over. Increasingly, good jobs require sound training, unless you become a pop star or an influencer on the internet because you got the right nose at a young age. There were always a few who went against the mainstream and then made it rich. But most of these are bad role models. And that is again another story. And whether what you learn during long training makes a lot of sense is another discussion, but not in this book Image 1 .

Although the times of material harshness are bygone for many, they remain in our collective memory and in our instincts. That has its advantages, too. There has always been the tension between individuals and the community. The more complex society is becoming, the higher the number of levels between general society and the individual.

A few thousand years ago, when a child was born with an obvious abnormality, it was often abandoned or killed. This is documented for societies in antiquity, and is still the case for various reasons in remaining indigenous communities that still live as hunters and gatherers, such as in the jungle in Brazil.³⁰ Two hundred years ago, a child that was born with an obvious abnormality was put into a so-called asylum. Eighty years ago, bodily and/or intellectually impaired children were discretely murdered in Germany as part of the killing program T-4 (T for Tiergartenstrasse in Berlin), by injection of poison or by slow starvation, without hesitation by medical doctors, nurses, and other involved healthcare professionals. The official death certificates documented false, fictitious causes of death.¹ See also Chapter 8. Today we shudder at these notions. Raising a handicapped child today we encounter very diverse feedbacks from other people and institutions, ranging from friendly to hypocritical to openly hostile. We need to be aware what happened in the past, and what people with a friendly face are able to do if we trust them blindly.

To find your way in today’s social jungle, you need common sense; a reliable partner; support from your family; and a good job that provides a solid income. Apart from all that, you need two further capabilities: hands-on ability to take care of your special child; and a compass that helps you to orient yourself in the often contradictory and confusing signals and rules that you encounter in everyday social interactions, and that reflect elements of society that you might not have expected. As society with its structure, rules, technologies and challenges is changing so fast, such a compass might require an update in each new generation or even earlier. Parents live always in the here and now. But over time, parents will be better prepared.

The formerly used term retarded children reflected compulsory general school education, introduced in the 19th century. Before that, relatively few people learnt to read and write. Children that had problems to follow education were classified as uneducable.³¹ The term retarded chosen by parents themselves documents the zigzag way of humanity in conceptualizing the existence of special members. These parents fought for their children despite the generally negative social atmosphere. Of course, that they put up a fight at all also had other, more profound underlying causes and reflected the current framework. There were now the technical means of communication. Several parent organizations were triggered by an initial notice in a newspaper, followed by hundreds of responding letters from other affected parents. Newspapers themselves were historically relatively new, just like the internet is today. The choice of name by these parents shows how they used what sounded best out of those spiritual instruments that existed. That the chosen names were often a few years later perceived as having meanwhile a negative connotation shows the dynamics of the process they had initiated.

The dimensions we encounter in this challenge are multiple. Five hundred years ago it was not medical doctors who would assess intellectual capacities. In the beginning national state of England, it was the lawyers. The intellectual assessment consisted of simple, reasonable questions: what is your name? What day do we have today? What is the name of your parents? How many cents is a euro or a dollar? (They had other currency in these days, but the questions were comparable).¹ In these days, medical doctors had little that could have helped. To the contrary. Based on classical Greek theories and specifically on flawed assumptions about human anatomy, medical doctors in Europe learned in university for well over a thousand years that all health challenges are based on too much blood. The resulting universal therapy was bleeding. If this did not help with a single treatment, it was repeated until the patient and his family refused further treatment or the patient died. Then the respective doctor explained that the patient had just been too ill. Probably the most important exception in early history was military surgery. After a battle, there were hundreds of wounded young men that otherwise had been healthy until their battlefield injury. Once a wound was inflamed, there was the danger of gangrene, sepsis, and a slow, painful death. The only remedy that offered a chance of survival was suturing up the wound in the hope it would not become infected, or amputation, which the surgeons of the time carried out very fast. The slower and more carefully they operated, the higher the risk of inflammation and gangrene. At that time there were no antibiotics, no wound disinfection and no sterile bandages. That today’s medicine can help in many diseases that can result in physical and mental disabilities is historically new.

Industrialization and modernization started in Europe a few hundred years ago, where modern constructs of thought emerged in pamphlets, books, correspondence and exchange between people from all over Europe (and later on also overseas). All of these writings became widespread now that the printing press was well established and enough people could either read them themselves or had ample opportunity to have them read to them. The reception of these writings, their use, and their further development have massively influenced the development of the world as we see it today. The respective individuals in this process were important, but if their thoughts would not have been widely disseminated, they would not have had any influence. Reference works and encyclopedias can always be consulted for details, but it is crucial to put the key works in their historical and social context. I just try to offer a compass that facilitates navigation in this sea of