Table of Contents
- What Causes Down Syndrome?
- Understanding Down Syndrome: The Medical Model
- Understanding Down Syndrome: The Social Model
- How the Medical and Social Models Intersect in the Case of People with Down Syndrome
- Characteristics of People with Down Syndrome
- Myths and Half-Truths Associated with Down Syndrome
What Causes Down Syndrome?
Just as some people have blue eyes and others have poor night vision, Down syndrome is one aspect of human diversity. There is no way of knowing why people have many of the variations they have, and Down syndrome is just another human variation.
Some people wrongly believe that Down syndrome is associated with punishment from God, or that a child is born with Down syndrome because of a curse or other unfortunate family legacy. These ideas are difficult to shift, and they cause unwarranted shame and sorrow. Down syndrome is nothing for a person or a family to be ashamed of, and people with Down syndrome can have wonderful lives and contribute significantly to their communities.
In fact, Down syndrome is a chromosomal disorder. Most people with Down syndrome have extra genetic material on their 21st chromosome. While Down syndrome is sometimes associated with advanced maternal age, many healthy young mothers have children with Down syndrome too. At present, although Down syndrome is the most common chromosomal variation (approximately 1 in every 770 births is a baby with Down syndrome [1] ), scientists have no satisfactory answer to the question: “What causes a child to be born with Down syndrome?” In the absence of science, people may provide other explanations: “Maybe the mom wasn’t careful during the pregnancy”, or “It’s probably because the dad had so many X-rays when he was younger”.
But the reason why some people are born with a triplet strand on their 21st chromosome, rather than a pair, cannot at present be scientifically explained. Perhaps the key is to accept that human variation is part of life, and it brings us a richness and breadth of experience that we all benefit from. Down syndrome is part of the full span of human possibility, and people who have it should be embraced and valued.
Some people wrongly believe that Down syndrome is associated with punishment from God, or that a child is born with Down syndrome because of a curse or other unfortunate family legacy. These ideas are difficult to shift, and they cause unwarranted shame and sorrow. Down syndrome is nothing for a person or a family to be ashamed of, and people with Down syndrome can have wonderful lives and contribute significantly to their communities.
In fact, Down syndrome is a chromosomal disorder. Most people with Down syndrome have extra genetic material on their 21st chromosome. While Down syndrome is sometimes associated with advanced maternal age, many healthy young mothers have children with Down syndrome too. At present, although Down syndrome is the most common chromosomal variation (approximately 1 in every 770 births is a baby with Down syndrome [1] ), scientists have no satisfactory answer to the question: “What causes a child to be born with Down syndrome?” In the absence of science, people may provide other explanations: “Maybe the mom wasn’t careful during the pregnancy”, or “It’s probably because the dad had so many X-rays when he was younger”.
But the reason why some people are born with a triplet strand on their 21st chromosome, rather than a pair, cannot at present be scientifically explained. Perhaps the key is to accept that human variation is part of life, and it brings us a richness and breadth of experience that we all benefit from. Down syndrome is part of the full span of human possibility, and people who have it should be embraced and valued.
Understanding Down Syndrome: The Medical Model
In 1866, British physician Dr. John Langdon Down was the first person to describe the characteristics of the syndrome which would eventually be named after him, and to advocate for the education and positive treatment of people with the condition. Despite his humanizing efforts, many years went by when Down syndrome was viewed as a medical and familial misfortune. During this period, doctors were thought to be the best people to advise parents about their children’s future. The pessimism of many doctors has been well-documented, and the decision of many families to send their children off to institutions, or to expect little for their lives, were often prompted by their conversations with trusted doctors.
In the past, hurtful and difficult things have been said to new or prospective parents of people with Down syndrome: “Your child will never …”, and “Most children with this condition function at the level of ...”. In the current era, doctors have developed sophisticated tests which can indicate the probability that a fetus will have Down syndrome, and doctors and geneticists confer with parents about what to do with the pregnancy. This type of response arises from a view that the medical facts of a condition are of utmost importance, the person with the condition is tied to a particular fate, and medical interventions to end a Down syndrome pregnancy are an appropriate option.
When a medical model of disability is employed, the condition is understood and discussed as a collection of deficits that will make a person’s life difficult. The person with the condition is described in terms of their limitations, flaws, and negative prospects. The medical model of disability characterizes the person who has a disability as having an assortment of “problems” and normalizes the impulse to question whether their life would be worth living.
In the past, hurtful and difficult things have been said to new or prospective parents of people with Down syndrome: “Your child will never …”, and “Most children with this condition function at the level of ...”. In the current era, doctors have developed sophisticated tests which can indicate the probability that a fetus will have Down syndrome, and doctors and geneticists confer with parents about what to do with the pregnancy. This type of response arises from a view that the medical facts of a condition are of utmost importance, the person with the condition is tied to a particular fate, and medical interventions to end a Down syndrome pregnancy are an appropriate option.
When a medical model of disability is employed, the condition is understood and discussed as a collection of deficits that will make a person’s life difficult. The person with the condition is described in terms of their limitations, flaws, and negative prospects. The medical model of disability characterizes the person who has a disability as having an assortment of “problems” and normalizes the impulse to question whether their life would be worth living.
Understanding Down Syndrome: The Social Model
When a social model of disability is used, greater emphasis is placed on the way the lives of people with disabilities are enhanced or hindered by the response of the larger society. If the society is encouraging and open to supporting people with a disability, the life prospects of people with disabilities can grow and broaden. If the society works to accommodate the people with disabilities and eliminate negative or patronizing attitudes, policies and practices, then the facts of the medical conditions associated with disability are less oppressive.
The social model of disability places the onus on the larger society, individual institutions and the public to establish the conditions for people with disabilities to have good lives, regardless of their conditions. It argues that people with Down syndrome require equal access to educational, health and employment supports that will allow them to have a great quality of life. The reduction of barriers to participation in life-affirming activities and relationships is the main goal of people who employ a social model of disability.
In addition, people with a social model view of disability maintain that it is pessimistic and stereotypical when too much attention is paid to the medical facts of a disability. In the case of people with Down syndrome, they would argue, constant attention to topics like the intellectual capacity and “mental age” of people with Down syndrome takes attention away from what they see as the larger truth: regardless of their IQ, people with Down syndrome are more limited by the conditions in society than by any of their individual characteristics, and they could accomplish more if the barriers to their participation and self-expression were removed.
The social model of disability places the onus on the larger society, individual institutions and the public to establish the conditions for people with disabilities to have good lives, regardless of their conditions. It argues that people with Down syndrome require equal access to educational, health and employment supports that will allow them to have a great quality of life. The reduction of barriers to participation in life-affirming activities and relationships is the main goal of people who employ a social model of disability.
In addition, people with a social model view of disability maintain that it is pessimistic and stereotypical when too much attention is paid to the medical facts of a disability. In the case of people with Down syndrome, they would argue, constant attention to topics like the intellectual capacity and “mental age” of people with Down syndrome takes attention away from what they see as the larger truth: regardless of their IQ, people with Down syndrome are more limited by the conditions in society than by any of their individual characteristics, and they could accomplish more if the barriers to their participation and self-expression were removed.
How the Medical and Social Models Intersect in the Case of People with Down Syndrome
People with Down syndrome have well-documented intellectual limitations and many of them also display physical and emotional susceptibilities. As the years go on, however, more and more people with Down syndrome are exceeding the low expectations associated with their disability and achieving feats that were once considered impossible.With increasing frequency, they are marrying, holding satisfying jobs, recording astonishing athletic successes, volunteering in their local and faith communities, demonstrating impressive artistic talents and living independently.
And the people with Down syndrome who aren’t earning awards or publicity are quietly succeeding in multiple other ways: the overwhelming majority report that they lead very happy lives. What does this tell us, then? Which model, medical or social, is best for understanding how best to think about and support people with Down syndrome?
It may be that we need both perspectives. The medical model highlights the importance of expanding and guaranteeing the rights of people with Down syndrome to the particular educational opportunities, medical care, housing support and job training that contribute to a successful and healthy life. The social model reminds us that the removal of the attitudinal, practical and legal barriers that hold people with Down syndrome back is an essential and worthy cause: when constraints are taken off people with disabilities, they can exceed their own and others’ expectations.
Our efforts, then, as people who know and love people with Down syndrome, can be directed in two directions: acknowledging the legitimate challenges that accompany Down syndrome and making sure that individuals with this disability are appropriately supported, but also campaigning across the larger society for the opening of opportunities for people with Down syndrome and other disabilities.
And the people with Down syndrome who aren’t earning awards or publicity are quietly succeeding in multiple other ways: the overwhelming majority report that they lead very happy lives. What does this tell us, then? Which model, medical or social, is best for understanding how best to think about and support people with Down syndrome?
It may be that we need both perspectives. The medical model highlights the importance of expanding and guaranteeing the rights of people with Down syndrome to the particular educational opportunities, medical care, housing support and job training that contribute to a successful and healthy life. The social model reminds us that the removal of the attitudinal, practical and legal barriers that hold people with Down syndrome back is an essential and worthy cause: when constraints are taken off people with disabilities, they can exceed their own and others’ expectations.
Our efforts, then, as people who know and love people with Down syndrome, can be directed in two directions: acknowledging the legitimate challenges that accompany Down syndrome and making sure that individuals with this disability are appropriately supported, but also campaigning across the larger society for the opening of opportunities for people with Down syndrome and other disabilities.
Characteristics of People with Down Syndrome
Anyone who knows a person with Down syndrome well has probably developed a sixth sense for noticing other people with Down syndrome on the street, in a store, or at a concert. There are three groups of characteristics shared by people with Down syndrome.
1) Distinctive physical features
Because of their unique chromosomal inheritance, people with Down syndrome are recognizable, worldwide. They usually have:
- Slightly smaller heads than average
- Characteristic facial features such as a smaller mouth which, when they are children, may have difficulty accommodating the tongue, a flat nasal bridge, slightly slanted eyes, and smaller, flatter ears
- Thick neck
- Short stature and a susceptibility to being overweight
- A broader gap between the thumb and fingers, and between the big toe and the other toes
2) Associated medical conditions
These invisible conditions affect the lives of many people with Down syndrome:
- Heart conditions – the commonest heart defects are often treated in the child’s first year of life
- Gastrointestinal conditions – some of these conditions require surgery, while others can be managed through diet
- Hearing and vision issues – many people with Down syndrome wear corrective lenses and may require support for their hearing as well
- Susceptibility to bronchial and respiratory conditions – lungs can be compromised and asthma is not uncommon
- Loose joints and hypotonia (low muscle tone)
- Sleep irregularities – many people with Down syndrome have interrupted sleep when they are young, and a form of sleep apnea as they get older
3) Intellectual disability and other tendencies
- To varying degrees, people with Down syndrome have intellectual disabilities (they are very capable of learning, but at a slower rate than typically developing peers)
- Difficulties with adaptive behaviour, which is the ability to manage through the vagaries of daily life
- Communication issues – people with Down syndrome understand less of what is said to them and speak less accurately than their typically-developing peers
- Memory challenges – people with Down syndrome usually have trouble with short-term memory and working memory
- People with Down syndrome can experience depression and other mental health challenges
- Most people with Down syndrome will get Alzheimer’s disease
Myths and Half-Truths Associated with Down Syndrome
It may be because of the difficulty of getting accurate information, or perhaps people prefer to maintain folk beliefs. Whatever the reason, there are many myths and half-truths about people with Down syndrome, and it is worth exploring the possible origins of a few of the most persistent fallacies:
Myth #1 – People with Down syndrome are always happy.
What is the truth?
People with Down syndrome have happy times, but they also experience not-so-happy periods. In fact, they experience the same range of emotions as everyone else. They can feel grateful, disappointed, jealous, nervous and excited in the same circumstances, and at the same levels, as their family members and friends. And they can also experience the same difficulties as other children in their age range: fear on the first day of school, sadness when they are not included in social situations, joy when they master valued skills, angst as teenagers, and grief at the loss of beloved family members.
How might the idea have arisen, that people with Down syndrome are always happy?
When people have an intellectual disability, many people imagine that
People with Down syndrome have happy times, but they also experience not-so-happy periods. In fact, they experience the same range of emotions as everyone else. They can feel grateful, disappointed, jealous, nervous and excited in the same circumstances, and at the same levels, as their family members and friends. And they can also experience the same difficulties as other children in their age range: fear on the first day of school, sadness when they are not included in social situations, joy when they master valued skills, angst as teenagers, and grief at the loss of beloved family members.
How might the idea have arisen, that people with Down syndrome are always happy?
When people have an intellectual disability, many people imagine that
- they have fewer cares than others, and
- they have a reduced range of emotions.
When one spends time with a person with Down syndrome, however, it becomes clear that they have many cares and concerns: will they be asked to do something they don’t enjoy? Will they be invited to a friend’s party? Will they do well in their ski race? Will the dental procedure be painful? Will they get off at the right bus stop?
The emotions of a person with Down syndrome are often close to the surface: a baby may delight in a familiar book, a toddler may drop to the ground and refuse to walk, a preschooler may inexplicably bop another child on the head with a toy at play group, a young child may tightly hug a grandparent, and a teenager may not leave their room for long stretches of time. Even an older person with Down syndrome may be frustrated at not scoring in a floor hockey game or develop a crush on a person they work with.
The myth of eternal sunshine, then, clearly misrepresents the actual situation: if one pays attention to the emotional lives of people with Down syndrome, it is clear that they express positive emotions only some of the time. People with Down syndrome may not have the language to recognize or express their emotions, or they may not be invited to do so. When emotional expression is not expected or facilitated, people with Down syndrome may resort to expressing themselves through their behaviour, and they may bury and suppress some of their legitimate feelings.
Also, people with Down syndrome know that their feelings may not be accepted at all times. If they say, for example, that they are fearful of something, they may hear: “No you’re not – it will all be fine!” When their feelings are considered unacceptable or wrong, people with Down syndrome may come to understand that they should only express certain “approved” emotions.
The emotions of a person with Down syndrome are often close to the surface: a baby may delight in a familiar book, a toddler may drop to the ground and refuse to walk, a preschooler may inexplicably bop another child on the head with a toy at play group, a young child may tightly hug a grandparent, and a teenager may not leave their room for long stretches of time. Even an older person with Down syndrome may be frustrated at not scoring in a floor hockey game or develop a crush on a person they work with.
The myth of eternal sunshine, then, clearly misrepresents the actual situation: if one pays attention to the emotional lives of people with Down syndrome, it is clear that they express positive emotions only some of the time. People with Down syndrome may not have the language to recognize or express their emotions, or they may not be invited to do so. When emotional expression is not expected or facilitated, people with Down syndrome may resort to expressing themselves through their behaviour, and they may bury and suppress some of their legitimate feelings.
Also, people with Down syndrome know that their feelings may not be accepted at all times. If they say, for example, that they are fearful of something, they may hear: “No you’re not – it will all be fine!” When their feelings are considered unacceptable or wrong, people with Down syndrome may come to understand that they should only express certain “approved” emotions.
Myth #2: People with Down syndrome are stubborn.
What is the truth?
People with Down syndrome sometimes need to be adamant in communicating their wishes and preferences. They also have more time available to them than people who are on regular schedules, so refusing to yield is a productive strategy.
How might the idea have arisen, that people with Down syndrome are stubborn?
Three factors seem to have contributed to this belief:
1) the long-standing arbitrary treatment of people with Down syndrome
Through the ages, people with Down syndrome have often found themselves at the mercy of the people around them. They are routinely ordered to do things, offered few choices, arbitrarily assigned to tasks and roles, and denied autonomy in decisions that affect them.
2) the inbuilt hesitation of people with Down syndrome to change activities
People with Down Syndrome also have a well-documented hesitation to leave known situations for situations that are new and potentially less enjoyable.
3) the difficulty inherent in expressing their emotions and preferences
It can be difficult to name and express complicated emotions and loved ones and others may have difficulty imagining that the person with Down syndrome would want anything but what the parent or other responsible person has decided they would want. In these circumstances, people with Down syndrome have learned to resist.
Given this cluster of factors, it is probably to be expected that people with Down syndrome sometimes refuse to cooperate with plans and are adamant about not wanting to budge from an idea they prefer, for an activity they like less. People with Down syndrome, therefore, do exhibit stubborn behaviour, but it is often their only option in the face of the pressure they experience and the difficulty inherent in expressing their opinions and preferences.
People with Down syndrome sometimes need to be adamant in communicating their wishes and preferences. They also have more time available to them than people who are on regular schedules, so refusing to yield is a productive strategy.
How might the idea have arisen, that people with Down syndrome are stubborn?
Three factors seem to have contributed to this belief:
1) the long-standing arbitrary treatment of people with Down syndrome
Through the ages, people with Down syndrome have often found themselves at the mercy of the people around them. They are routinely ordered to do things, offered few choices, arbitrarily assigned to tasks and roles, and denied autonomy in decisions that affect them.
2) the inbuilt hesitation of people with Down syndrome to change activities
People with Down Syndrome also have a well-documented hesitation to leave known situations for situations that are new and potentially less enjoyable.
3) the difficulty inherent in expressing their emotions and preferences
It can be difficult to name and express complicated emotions and loved ones and others may have difficulty imagining that the person with Down syndrome would want anything but what the parent or other responsible person has decided they would want. In these circumstances, people with Down syndrome have learned to resist.
Given this cluster of factors, it is probably to be expected that people with Down syndrome sometimes refuse to cooperate with plans and are adamant about not wanting to budge from an idea they prefer, for an activity they like less. People with Down syndrome, therefore, do exhibit stubborn behaviour, but it is often their only option in the face of the pressure they experience and the difficulty inherent in expressing their opinions and preferences.
Myth #3: People with Down syndrome have short lifespans.
What is the truth?
In the past, people with Down syndrome were not expected to live past their 30s or early 40s. The statistics on people with Down syndrome are improving rapidly, and now it is common to see them living into their 60s.
How might this situation have arisen?
It has taken a lot of effort to secure the right to health care and medical attention that people with Down syndrome are entitled to. There have been several formidable barriers to equality in health care:
In the past, people with Down syndrome were not expected to live past their 30s or early 40s. The statistics on people with Down syndrome are improving rapidly, and now it is common to see them living into their 60s.
How might this situation have arisen?
It has taken a lot of effort to secure the right to health care and medical attention that people with Down syndrome are entitled to. There have been several formidable barriers to equality in health care:
- Attitudinal – Doctors and members of the public mistakenly believed that people with Down syndrome did not warrant access to routine or exceptional health care. There are many historical cases of people with Down syndrome being denied surgeries, chemotherapy and other interventions that would have extended their lives.
- Professional – In the past, doctors did not educate themselves on the intricacies of Down syndrome, and consequently, they did not know enough about the syndrome to properly care for individuals who had it. Also, there was little medical research about the health circumstances and needs of people with Down syndrome, which contributed to the lack of appropriate information.
- Access – When people with Down syndrome were abandoned to institutions or unsupported in the larger community, they often did not receive timely or appropriate access to health care, in part because no one was fighting for them.
Now, with advances in the rights of patients with Down syndrome and increased understanding of their unique health needs, lifespans are lengthening. It turns out that shorter lifespans may have been less a function of the syndrome, and more related to neglect and a lack of knowledge.
Some people with Down syndrome continue to live in poverty and relative social isolation, supported only by government disability payments. For some of these people, the health gulf is still a reality, and they continue to receive substandard care and attention from doctors in a system that is unaware of their needs.
Some people with Down syndrome continue to live in poverty and relative social isolation, supported only by government disability payments. For some of these people, the health gulf is still a reality, and they continue to receive substandard care and attention from doctors in a system that is unaware of their needs.
Myth #4 – People with Down syndrome have uncanny special abilities to identify how people are feeling and support them.
What is the truth?
People with Down syndrome actually have considerable difficulty tuning in to the emotions of other people. In the scientific literature, the consensus is that people with Down syndrome “present problems in social functioning, showing little accommodation to social partners” [2], which is a repudiation of the commonly expressed belief. There have also been numerous research studies on the topic of facial emotional recognition, which have focussed on whether young people with Down Syndrome are competent at identifying happiness, fear, disgust, sadness and anger in other people. Though the study designs and the results are mixed, there appears to be agreement around the finding that people with Down syndrome have atypical patterns of deciphering emotions, and in fact, “constraints linked to their cognitive systems prevent them from improving along with age on facial emotion recognition”.[3]
How might this idea have arisen?
Claims such as the following are not uncommon: “My cousin has Down syndrome. It’s amazing, though: I don’t know how she does it, but somehow she just knows who needs cheering up. She always gravitates to the person in the room who is sad and she hugs them or sits with them and they feel better!” Anecdotal reports would indicate that there is a widespread belief that people with Down syndrome are unusually emotionally gifted and can sense and attend to the needs of others.
It is common for popular beliefs and scientific evidence to diverge, and this seems to be another example. The people who describe the intuitive emotional strengths of people with Down syndrome may be describing fortuitous coincidences, or they may be using complimentary language to narrate what were, in truth, chance encounters. It may also be an indication of the generosity of the narrators, that their interpretation of a situation ends with them ascribing unusual talents to people with Down syndrome. One of the important messages, though, is that people with Down syndrome would benefit from more education on discerning the emotions of other people, as a way of improving their skills for social functioning.
People with Down syndrome actually have considerable difficulty tuning in to the emotions of other people. In the scientific literature, the consensus is that people with Down syndrome “present problems in social functioning, showing little accommodation to social partners” [2], which is a repudiation of the commonly expressed belief. There have also been numerous research studies on the topic of facial emotional recognition, which have focussed on whether young people with Down Syndrome are competent at identifying happiness, fear, disgust, sadness and anger in other people. Though the study designs and the results are mixed, there appears to be agreement around the finding that people with Down syndrome have atypical patterns of deciphering emotions, and in fact, “constraints linked to their cognitive systems prevent them from improving along with age on facial emotion recognition”.[3]
How might this idea have arisen?
Claims such as the following are not uncommon: “My cousin has Down syndrome. It’s amazing, though: I don’t know how she does it, but somehow she just knows who needs cheering up. She always gravitates to the person in the room who is sad and she hugs them or sits with them and they feel better!” Anecdotal reports would indicate that there is a widespread belief that people with Down syndrome are unusually emotionally gifted and can sense and attend to the needs of others.
It is common for popular beliefs and scientific evidence to diverge, and this seems to be another example. The people who describe the intuitive emotional strengths of people with Down syndrome may be describing fortuitous coincidences, or they may be using complimentary language to narrate what were, in truth, chance encounters. It may also be an indication of the generosity of the narrators, that their interpretation of a situation ends with them ascribing unusual talents to people with Down syndrome. One of the important messages, though, is that people with Down syndrome would benefit from more education on discerning the emotions of other people, as a way of improving their skills for social functioning.
[1] https://www-sciencedirect-com.proxy1.lib.uwo.ca/topics/medicine-and-dentistry/chromosome-disorder
[2] Martínez-Castilla, P., Burt, M., Borgatti, R., & Gagliardi, C. (2015). Facial emotion recognition in Williams syndrome and Down syndrome: A matching and developmental study. Child Neuropsychology, 21(5), 668–692.
[3] Martínez-Castilla, P., Burt, M., Borgatti, R., & Gagliardi, C. (2015). Facial emotion recognition in Williams syndrome and Down syndrome: A matching and developmental study. Child Neuropsychology, 21(5), 668–692.
[2] Martínez-Castilla, P., Burt, M., Borgatti, R., & Gagliardi, C. (2015). Facial emotion recognition in Williams syndrome and Down syndrome: A matching and developmental study. Child Neuropsychology, 21(5), 668–692.
[3] Martínez-Castilla, P., Burt, M., Borgatti, R., & Gagliardi, C. (2015). Facial emotion recognition in Williams syndrome and Down syndrome: A matching and developmental study. Child Neuropsychology, 21(5), 668–692.
