First, a short test. Your friend is hosting a birthday dinner and has seated you next to her cousin, who has Down syndrome. You don’t know what kind of a conversation you can have. Do you:
a) smile politely and spend the rest of the evening speaking to the person on your other side b) spend the evening playing Candy Crush in the WC c) limit conversation to simple phrases such as “This fish is tasty, isn’t it?” and “The fruit is yummy, isn’t it?”
If the situation described above sounds familiar to you, please read on! There is no reason to feel awkward or uncomfortable when first meeting someone who seems “different”, and besides, you wouldn’t want to miss an opportunity to connect with an interesting and valuable person who, by the way, has Down syndrome.
Wait: What is Down syndrome?
Down syndrome is one of the most common causes of genetic intellectual disability in the world. Typically, each one of our body cells, other than sperm or egg cells, contains 46 chromosomes. In the most common form of Down syndrome, known as Trisomy 21, a person is born with one complete extra copy of chromosome #21 in each cell. The result of this extra chromosomal material is a mild to severe intellectual disability and possibly some medical conditions.
Conditions frequently seen in people with Down syndrome include low muscle tone, cardiac abnormalities, hearing loss, sleep apnea, and/or hypothyroidism, among others.
Every person born with Down syndrome is different and has a different mix and severity of the conditions typically associated with the syndrome. Appearance-wise, the nasal bridge might be flat, the ears might be set lower down on the head, the eyes might have an upward and outward slant, and the mouth might be small, possibly with a protruding tongue. People with Down syndrome are often shorter than other adults, and are sometimes heavier. It is not possible to tell from physical appearance just how mild or severe someone’s intellectual abilities are, and although it is unusual, some people with Down syndrome have average intelligence.
Will taking pre-natal vitamins prevent Down syndrome? What about alcohol consumption or exercising?
Down syndrome equally affects people of all races, countries, and educational and economic backgrounds. Unlike some other conditions that babies are born with, Down syndrome can’t ordinarily be prevented no matter how diligent the parents are; and it is impossible for most couples to know prior to conception if their child will have Down syndrome. During pregnancy, medical tests with varying degrees of risk to the fetus are available to determine if the fetus has Down syndrome. It is up to the parents to choose whether to be tested.
The main risk factor for conceiving a child with Down syndrome is advanced maternal age. However, while the risk is higher for older mothers, many babies with Down syndrome are also born to younger mothers.
That was interesting information, but it will not help me to converse with a person with Down syndrome?
Agreed. The single most important thing to remember when speaking with someone with Down syndrome is that fundamentally we are all much more similar than we are different.
How are we similar?
People with Down syndrome are, first and foremost, people. Just like all people, people with Down syndrome experience a complete range of emotions – happiness, sadness, pride, fear, excitement, boredom, anger… People with Down syndrome need to feel valued, they enjoy being included, they know when they are being left out or ignored, and they want to have dignity and be treated with respect.
People with Down syndrome have friends and a family. Since Down syndrome is only rarely passed down through parental lineage, they are usually the only affected person in their family. Many of their friends do not have Down syndrome or any other significant conditions.
People with Down syndrome lead busy, fulfilling lives. During their growing years they attend school and in some cases, university. Some are in mainstream classes with or without extra help, and some are in specialized classes. After finishing their schooling, many people with Down syndrome have full or part-time jobs or do volunteer work. Many date and form romantic relationships, and some get married.
People with Down Syndrome have hobbies and interests. Some enjoy art, nature, pets, or music, to name just a few; and most enjoy movies, theater, and TV. They might enjoy sports, but as with many people, cardiac or orthopedic conditions can prevent them from actively participating. However, they often follow sports and can attend a sports event with you and cheer on the team.
People with Down Syndrome can follow fashion and many like to be well-dressed. It can sometimes be challenging to find well-fitting, stylish clothes because of a non-standard body size or a limited budget, but that doesn’t mean that they don’t put thought into their own outfits or notice what other people are wearing.
People with Down syndrome enjoy sharing their interests or the details of their day with other people. Having Down syndrome does not define who people are – it is one part of a much bigger picture. With guidance early on from their family, and support from teachers, therapists, community organizations, and of course friends, many people with Down syndrome learn to live independently. They can set an alarm and wake up on time, choose an outfit and get dressed, prepare breakfast, and take public transportation to a job or volunteer work, all on their own.
Of course, there are some differences. Most people with Down syndrome have a support system to help them navigate some of life’s challenges, such as managing their finances. They might also appreciate help with planning transportation and meals, shopping for groceries, and performing some other activities of daily life that many of us do without a second thought.
How can I be supportive of a person with Down syndrome?
Keeping in mind that each person is unique, here are some suggestions:
During a conversation:
You might have to pay closer attenion to understand the speech of a person with Down syndrome. This is because the muscles that are used for speaking may be weaker or less fully coordinated in a person with Down syndrome. It is important to remember that the difficulty the person has in forming words does not make what they have to say any less interesting or less important. And many have an excellent sense of humor!
In addition, people with Down syndrome sometimes have difficulty finding the words to say what is on their mind. That doesn’t mean that they don’t understand the conversation or have interesting thoughts; it only means that they have trouble expressing what they are thinking. Many of us are all too familiar with that problem!
Conversing with someone with Down syndrome may feel awkward at first. It is well worth it to be patient, and to show that you are comfortable with silent pauses. They might need extra time to gather their thoughts, or to form words. Nonetheless, allow them to speak for themselves, rather than finishing the sentence for them.
In the workplace or as part of a goal-oriented activity, it is fine to ask someone what tasks they enjoy and feel comfortable doing. While it might feel to you that you are pointing out that they have a disability, they are already aware of that fact, and no one wants the disability to become the “elephant in the room”. Like most people, people with Down syndrome want to succeed at their work. So long as assistance is offered and given respectfully, they are likely to be appreciative of your efforts.
If you do offer to help, be specific. “Do you need help?” is too generic – Asking “would you like me to show you how to get to the supply closet?” is a more targeted, more helpful question.
Be specific and clear when making a request. For example, instead of saying “please sort out these papers”, you might say “please put all of the pink tickets into this red box.” Similarly, divide tasks into small parts and assign one or two parts at a time.
Many people with Down syndrome work best with structure and routine. Assignments that change from day to day, or week to week may be less comfortable. If possible, give notice in advance if a usual process will be changed.
During group activities:
Include people with Down syndrome in invitations to social events, such as the office holiday party. Encourage them to attend, and make sure they know what the expected attire is. Confirm that they have a way to get to the event and back home.
When making introductions please do not introduce anyone as your co-worker or friend who “has Down syndrome”.
Out and about:
If a person with an intellectual disability asks you for directions, be patient, clear and specific. Provide visual cues, and ask them to repeat the directions back to you or offer to write them down.
If you are in a check-out line behind a person with an intellectual disability who is slowly counting out his payment, refrain from looking at your watch, sighing, or tapping your fingers on the counter. We sometimes inadvertently pressure people when they are concentrating or stressed, but that will not produce the desired result for anyone.
Always say a polite hello in an elevator or waiting room, or in any other situation in which you would ordinarily briefly acknowledge someone’s presence.
Ready to test your knowledge?
Jill Sabin Garner received her Bachelor of Science in Nursing (summa cum laude) from New York University. A Registered Nurse and Certified Diabetes Educator, she serves on the boards of both the New York State Coordinating Body and the Metropolitan New York Group of the American Association of Diabetes Educators.