Down Syndrome Myths Debunked

by Heather Carley

Eight years ago I didn’t know much about Down syndrome or what it really means to love and respect someone who has a developmental disability. My life didn’t include people with these kinds of diversity; I knew them only as potential recipients of charitable donations. I felt sorry for people with developmental disabilities. I was sad that they would never have a quality life—and would never even know what they were missing. I believed that parents, teachers, and care providers of these people were “special,” assuming it must take a special kind of person to raise, love and work with “those kinds of people.” I heard that people who have Down syndrome were often especially loving and that adults with developmental disabilities are just big children trapped in adult bodies. Back then I didn’t even know the phrase “developmental disability.” I would have described them as “mentally retarded” and dismissed them as defective and inferior—and definitely not my peers. I was scared of the differences that I could see but not understand. I often used the phrase “that’s so retarded” without any concept of the long, horrifying history of oppression, violence, and incarceration that continues in Canada and throughout the world for people who are defined by this label. I thought I knew a few things. I had an image in my mind, charitable feelings, and certainly an array of stereotypes, but I didn’t know.

Now I do.

Eight years ago, I gave birth to a daughter who has Down syndrome. What I now know to be real and true is that disability is natural.

Down syndrome is normal. People who have Down syndrome are normal. There is just as much diversity in ability, disability, and personality in the Down syndrome population as in the non-Down syndrome population.

Down syndrome is one of the most commonly occurring chromosomal patterns, appearing in approximately 1 in 800 births in Canada. Of the approximately 33.8 million people in our country, about 42,250 have Down syndrome. People who have Down syndrome have one extra 21st chromosome—a total of 47. Most people have 46 chromosomes, 23 coming from the mother and 23 from the father. The addition of this extra chromosome occurs during the first moments of conception or cell division. Nothing the parents do, or don’t do, will affect the likelihood of conceiving a child who has Down syndrome. Although the chance of conceiving a child with Down syndrome does increase with advanced maternal age, most of these children are conceived by mothers under age 35. This is simply because there are more women under 35 having babies. Prenatal testing is available which can identify Down syndrome and other chromosomal patterns early in pregnancy. Along with such testing comes the need and responsibility to provide parents with unbiased and accurate information about testing, diagnoses, prognoses, options, and available supports.

Standard medical descriptions found in most pregnancy, childbirth, parenting, and medical literature reiterate outdated understandings of Down syndrome. So much more has become known and understood, even in the past 10 years. Most of these outdated sources falsely present the “fact” that people with Down syndrome can’t learn or develop into mature adults, that they can’t lead long healthful lives, and that they can never become contributing citizens in our communities. These ideas no longer hold true. People with Down syndrome are growing up knowing that they have the right to envision a future that includes contributing in real and valued ways: as a peer and classmate in inclusive education all the way through post-secondary studies, as a co-worker and employee in paid careers; as a spouse or loving partner, as a parent, as a friend or family member, as a volunteer or as a teammate in recreational activities.

Another misconception about people with Down syndrome is that they are exceptionally loving, angelic, or uninhibited. People who have Down syndrome experience a deep and complete array of emotions which include anger, embarrassment, grief, joy, hope and love. Communication of these emotions is often complicated by auditory processing or speech and language disabilities. It is important to realize that how well any individual can speak is not an accurate way to gauge intellectual or emotional capacities.

I have also come to realize that it doesn’t take a special kind of person to love, befriend, or support people who have Down syndrome. As I see it, disabilities or abilities are not what need to be overcome. The greatest challenges and frustrations we face are outdated thinking and social constructs that limit access to true citizenship.

I now understand that I am just as likely to have things in common with any adult, regardless of disability. Many of the individuals with developmental disabilities whom I have come to know have proven to be very supportive friends. These friendships, like all others, may require supports or effort to stay healthy, reciprocal, and long lasting. And as a result of community inclusion, we are able to find many things in common such as shared experiences, shared beliefs, or shared interests in popular culture: TV, movies, music, art, books, and sports.

While many gains have been made in recent years, there is still so much to be hopeful for. Every day, in many corners of our community, I am inspired by people who are fearlessly willing to think creatively and to take chances on new ideas. These people are having a tremendous impact toward social justice. These changes are making it possible for people who have Down syndrome and other developmental disabilities to take their rightful places within a widening stream of diversity. One thing that you can do to be part of this change is to reach out in friendship to someone who has a disability; model this for your children and let them model it for you.

For more information about Down syndrome or to get involved in social change, please contact the Greater Victoria Down Syndrome Society (www.gvdss.ca) or the Canadian Down Syndrome Society (www.cdss.ca)

Heather Carley is a wife, mother, sister, daughter, and friend. She is a learner and advocate with a passion for issues facing people with developmental disabilities.