Disability 101 Part 1: Down Syndrome

Good morning readers, and welcome to “class.” This is Disability 101. In the tradition of my old college professors, here’s a rundown of the “syllabus”:

In this course you will learn:

-Basic facts regarding both well-known and lesser-known disabilities

-Some myths and truths related to each

-How inclusion, independence, and interdependence is being made possible for affected individuals, and/or how it can be made more possible.

Disabilities covered will include, in no particular order:

-Down Syndrome

-Cerebral palsy

-Autism/Asperger’s Syndrome (may be two separate discussions)

-Fetal Alcohol Syndrome Disorder (FASD)

-Muscular dystrophy

-Fragile X syndrome

Any others that present themselves, such as unclassified intellectual disability, traumatic brain injury, blindness, deafness, and so on. You will notice there are more topics listed than there are weeks in August, so be prepared to see more posts than usual. These posts will not be considered “bonus rounds.”

Without further ado, please open your laptops or notebooks and we’ll begin with Down Syndrome.

 

I chose to start with Down Syndrome largely because it is an intellectual disability. In my experience, intellectual disability (hereafter known as ID) is one of the least understood and most maligned disability types in existence. People assume that those with ID cannot and will not have good quality of life and are perpetual children, when neither supposition is true. Let’s examine instead what the truth is.

 

What is Down Syndrome?

Down Syndrome, also called trisomy 21, is a chromosomal disorder that occurs when an individual has an extra set, or copy, of chromosome 21. The extra copy can be full or partial, which may affect the way DS presents itself. According to the National Down Syndrome Society, DS is the most common genetic condition in the United States. It occurs in one of every 691 births; about 6000 babies are born with DS each year. Currently, approximately 400,000 Americans live with Down Syndrome.

Are there classical features?

Yes. Down Syndrome is one disability that is highly visible. Individuals with it have upward-slanted, almond-shaped eyes. They usually have low muscle tone or hypotonia, as well as deep creases across their palms’ centers. Persons with DS also have facial creases or extra skin folds, such as around the eyes. Persons with DS are usually small in stature and may have unusually small features such as ears. However, just because you can easily identify individuals with DS does not make all individuals the same.

Are there other medical issues?

Yes. According to WebMD, about 50% of children born with DS also have heart defects, which can vary in severity. People with Down Syndrome may also have different visual issues such as nearsightedness, farsightedness, or crossed eyes, which can be corrected with glasses, surgeries, and other treatments. People with Down Syndrome often have hormonal imbalances and issues such as hypothyroidism, which can be treated with medication.

Certain people with Down Syndrome may have a shorter life expectancy than is typical. However, again, each person is different. If you have a loved one with DS, don’t assume his or her life is automatically shortened. Instead, work with your doctor (s) to give him or her as much medical support as needed.

The Intellectual Side of Down Syndrome

Ah, now we’re getting into the nitty-gritty. When most people think of DS, intellectual disability is the first thing they think of. They might say things like, “You mean my child is going to be retarded.” Well, first of all, that descriptor is archaic; thankfully, more doctors are shying away from using it. Also, it is vital to note that ID does not equal inability to learn, enjoy academics, or thrive in the world. In fact, many people whose children or loved ones have DS will be the first to tell you their loved ones are smart; they are just smart in different ways than most of us think of it.

According to henryspink.org, most people with DS have an IQ of between 50 and 60, which falls under mild to moderate intellectual disability. However, this number can fluctuate; some individuals have been found to have scores as high as 120. About 1% of individuals with DS have an IQ of 70-80, which is classified as borderline average.

It would be nearly impossible for me to describe what an average education would look like for a child with Down Syndrome. That depends not only on the IQ itself, but how much support and how many opportunities there are for that person. By law, public schools must educate children and teens with DS; whether they do so inclusively and fairly is a toss-up, although positive strides are continually made. To varying degrees, people with DS can read, do math, participate in science and social studies, and do other academic tasks. Many loved ones of people with DS do not classify it as “mild” or “severe,” because they feel–rightly so–that ability is dependent on the person, not Down Syndrome itself. As other disability advocates have said, you are what you learn. If you are taught you are smart, capable, and able to meet others’ needs, that’s what you will become.

Myths and Facts:

Myth: If you are a mother over 35, your child will most likely have DS.

Truth: Although the risk of having a child with DS does increase after this age, children with Down Syndrome can be born to mothers of any age, and they are. Remember too, that statistics are not the be all end all. And, a positive result on a prenatal DS screening does *not* indicate a bleak future for your child.

Myth: People with DS don’t know right from wrong.

Truth: Although some people persist in believing that those with ID have no morals, this is not true. People with Down Syndrome, like everybody else, must be taught right from wrong. They may need help understanding certain intricacies, but they are not prone to criminal behavior, nor are they inherently disrespectful, selfish, or any other negative label you might choose to use.

Myth: People with DS are unemployable.

Truth: People with DS can and do hold jobs and make their own money–if they are given the chance to do so. Fortunately, there has been a movement away from sheltered workshops and segregated employment in recent years. Although people with DS are stereotyped as working primarily in menial jobs, they can do other things. The news is full of stories of people with Down Syndrome who have owned their own businesses, such as a young man named Tim who ran his own restaurant until recently revamping the business to get married. Which brings me to:

Myth: People with DS cannot and should not marry or have children.

Truth: Yes, they can. People with Down Syndrome are attractive (just look at Madeline Stuart, an 18-year-old girl with DS who is also a model). They have sensual and sexual desires just like the rest of us, and they can have successful relationships. Although persons with Down Syndrome and other forms of ID have been forcibly sterilized in the past, it is my hope that we will continue to see that less and less as time progresses. Side note: I disagree heartily with forced sterilizations.

Myth: People with Down Syndrome are always happy.

Truth: No; people with DS experience the same range of emotions everyone does. A lack of happiness or cooperativeness should be seen as natural instead of a sign of “noncompliance” or “behavior problems.”

What a Person with Down Syndrome Needs/What the Future Holds

As with most disabilities, the future of a person with Down Syndrome is up to those who love and support him or her, and are willing to let the individual speak for him or herself as much as possible. If the TAB population relies on worst-case scenarios to give them a picture of DS, we will not progress in our understanding of it.

Students with Down Syndrome are included in the educational system, although the levels of inclusion vary. Let me reiterate: letting a person with DS “visit” or sit in on a class is not inclusion. He or she should be given ways to participate and interact with peers. In other words, yeah, maybe your student with Down Syndrome can’t read and analyze Hamlet, but that is no reason to plunk them in a corner with an alphabet worksheet. Alternatives such as books on tape, condensed Shakespeare, and related activities may be useful.

Be careful when helping adults with DS “transition” from high school into college and beyond. People with DS are not perpetual children; they can and do understand adult concepts if given the time, patience, and specific explanations it may take to communicate them. Although they may have a childlike “cognitive age” or interests you consider childlike, remember that chronological age comes first. If the person with DS in your life is 40, then for goodness sakes, treat them as such. Don’t assume things like, “He frightens easily” or, “She needs help in the bathroom.” It’s demeaning.

Bottom line? Persons with Down Syndrome may need more support than people without it, in terms of living independently, holding jobs, etc. But they *can* do it. More and more people are proving that. We just need to relate to people with DS on their terms. Yes, simplify explanations if you have to. Yes, give them extra time to do things. Yes, work with medical teams to keep them healthy. While doing that though, always remember you are dealing with a whole person, not just an intellectual/physical diagnosis. For as long as they are here, whatever they can do, let’s give people with Down Syndrome the chance to be the best people they can be.

 

 

Advertisements

7 thoughts on “Disability 101 Part 1: Down Syndrome

  1. Eliza Schaaf went to the Shakespeare festival quite a lot when she was in Ashland and she acted in various Shakespearean plays – including Hamlet.

    And Mathalia from Mathalia’s Potholders was also quite a Shakespeare fan.

    Recently I have been reading this Scientologist blog called CONQUERING DOWN SYNDROME. [Team Jacinta].

    And don’t they mean “startles easily”?

    Why did you say “others’ needs” in that sentence:

    “As other disability advocates have said, you are what you learn. If you are taught you are smart, capable, and able to meet others’ needs, that’s what you will become.”

    1. Hi Adelaide,

      Thank you for bringing this to my attention. I was trying to think of something everybody thinks persons with DS could never do, but–you would think I’d know by now not to frame it like that. Again, thank you.

      As for “meet others’ needs”–I probably should have clarified that a lot of PWDs are taught they are needy/in need of help, but unable to help others. They need to hear the opposite. As someone once said, “If you can do one thing well, you are needed by someone”–and I don’t know anybody who cannot do at least one thing well.

      1. Keep learning Independence Chick!

        You’ve said that on other blogs before. It’s a good one for the new readers or those who don’t know your philosophy and practice.

        And I love that Martina N quote.

        It makes you think who they are needed by.

        Fortunately the one thing we know that people with Trisomy 21 can do and is valued in the world – everybody needs it. That thing is love.

        [And, yes, there are lots of prejudices and stereotypes about that].

        ***

        Shakespeare is an accessible playwright and poet.

        When you go to that “everybody thinks” …

        that ability to relate to someone on their terms is an ability that everybody needs and desires.

        About treating people on their chronological/behavioural age: this is a really tough one on reactive attachment disorder. The “youngest” you can have it is 9 months old. A lot of the advice is treating on behavioural age – and realising this is a person. A 3-year-old in an abusive family is not a 3-year-old in a nice family…

        [and that is where the moral thing might come in … does the “right and wrong” assumption play out in different disabilities/impairments? Again until recent incidents with the police the immoral/disrespectful/selfish never came out. It was an outcome of normal people being disappointed in their expectations or lack of three dimensional views].

        And I noticed Madeline Stuart was a good sportswoman, especially in swimming and riding, before she was beautiful. [Sort of the benefits of knowing someone “before they were famous” as it were]. And Robert [her boyfriend] knows she’s beautiful in a way the rest of us don’t.

  2. Thanks for the info and encouragement. 🙂 I also like what you said about “a three-year-old in an abusive family is not the same as a child the same age in a nice family.” There are so many more factors influencing chronological and behavioral age than I, or I’d venture to say most of us, usually think about.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s