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EDUCATING OTHERS

As ambassadors for the Down syndrome community, one of our most important responsibilities is to educate others.  The more we encourage others to understand the nuances associated with Down syndrome, the closer we move to a world of acceptance, inclusion, and harmony.  The more advocates we have, the more the support, services, and resources are available to the Down syndrome community that we serve.  

Proper Use in Text

  • The correct spelling is Down syndrome.  Down is capitalized in reference to John Langdon Down who characterized the condition.  The word syndrome should be in lower case letters unless used within a title.
  • Down vs. Down’s – While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession.  Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.

People First Language is Important

  • Put people first, not their disability
    • A “person with a disability”, not a “disabled person”
    • A “child with Down syndrome”, not a “Down’s child”
  • Use emotionally neutral expressions
    • A person “with” cerebral palsy, not “afflicted with” cerebral palsy
    • An individual who had a stroke, not a stroke victim
    • A person “has” Down syndrome, not “suffers from” Down syndrome
  • Emphasize abilities, not limitations
    • A person “uses a wheelchair”, not “wheelchair-bound”
    • A child “receives special education services”, not “is in special ed”
  • Adopt preferred language
    • A “cognitive delay” or “intellectual disability” is much preferred over “mentally challenged”
    • “Typically developing” or “typically abled” is preferred over “normal”
    • “Accessible” parking space or hotel room is preferred over “handicapped”
  • Refrain from the “R-Word”
    • Use of the word “retarded” in any derogatory context is hurtful to many and suggests that people with disabilities are not competent.

The Condition Doesn’t Define the Person

While individuals with Down syndrome do possess some atypical features and characteristics from birth, they’re all uniquely talented and capable. 

Although they will experience learning and developmental delays and are at risk of certain health problems, most children born with Down syndrome will live a normal, meaningful life and can grow up to be independent adults.  

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People With Down syndrome Are Fulfilled

In 2011, Brian Skotko, a Harvard-trained physician and researcher, published a groundbreaking survey, “Self-Perceptions from People With Down Syndrome.” His work revealed that people with Down syndrome have a very high level of satisfaction in their lives and are generally very happy people. Similarly, family members of people with Down syndrome also rank high in levels of personal fulfillment.

So not only are people with Down syndrome happy, but they also bring a great deal of happiness to their friends and family members. The survey found that 88 percent of siblings of children with Down syndrome feel that they are better people for having had their brothers and sisters; and other studies have found that children with Down syndrome have strong adaptive skills and that their parents tend to divorce less than the parents of children without Down syndrome.

Celebrate Individuality

No one is created equal, and thus each person with Down syndrome is uniquely made and uniquely gifted.  Just like anyone, people with Down syndrome will have different likes and dislikes, and possess different strengths and weaknesses.  They’ll gravitate toward (and often excel in) subjects, activities, hobbies and tasks that are of particular interest to them.  Just like you, people with Down syndrome are not always happy, and will convey various emotions and can feel angry, sad, embarrassed or excited.  

What makes us tick is what makes us special, and what makes us individuals.  It is important to understand the dynamics of each person with Down syndrome and to recognize, celebrate, and support their unique talents and interests.  They are capable of great things.

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Don’t Underestimate Potential

People with Down syndrome are very determined and capable.  When they put their minds to things, there are few limits on what they can achieve.  The majority of adults with Down syndrome in the US have jobs or provide volunteer services.  Several are accomplished athletes, artists, business owners, spokespeople, students, actors, musicians, etc.  It is important that society focuses on and celebrates the abilities of others, not the disabilities of others.

Celebrities with Down syndrome:

  • Sujeet Desai – the first musician with Down syndrome to play at Carnegie Hall.  He has mastered 7 instruments and performed in almost every US state, as well as in 13 countries.  Sujeet has received many awards, including the United Nations’ Achievement Award.  He has been featured in two documentaries, as well as on The View, 20/20, The Oprah Winfrey Show, The Wall Street Journal, and New York Times.
  • Madeline Stuart – widely known as the first professional model with Down syndrome.  She became the second person to walk at New York Fashion Week, and she has participated in Parish Fashion Week and London Fashion Week.  She has been profiled in both Vogue and Forbes.  She owns her own fashion line called 21 Reasons Why.
  • Pablo Pineda – is an actor and educator, known for being the first European with Down syndrome to obtain a university degree.  He completed both a Diploma in Teaching and a BA in Educational Psychology.  Pablo is currently working on implementing an international strategy to increase employment opportunities for people with disabilities.  He is a regular speaker at universities across the world, author of multiple books, and has a Ted Talk.
  • Zack Gottsagen– an actor who has starred in multiple films, including The Peanut Butter Falcon.  He made Academy Awards history by becoming the first person with Down syndrome to present an award.  A Florida native, doctors suggested that Zack would never walk or talk.
  • Tim Harris – an athlete who has won numerous gold medals at the Special Olympics.  Harris competed in basketball, poly hockey, volleyball, golf, and track and field.  Tim was the owner of Tim’s Place, a restaurant in Albuquerque, NM.  He closed it in 2016 and moved to Denver to be with his girlfriend.  Now, Tim runs his own non-profit, Tim’s Big Heart Foundation, where he aims to inspire people to lead meaningful lives.
  • Jamie Brewer – an award-winning actress, known for her recurring roles in the American Horror Story series.  In 2018, Brewer became the first person with Down syndrome to win the Drama Desk Award for Outstanding Featured Actress in a Play.  Jamie is a self-advocate who worked with The ARC to abolish the use of the R-word in Texas legislation.
  • Chelsea Warner – an athlete who has won numerous gold medals at the Special Olympics.  Harris competed in basketball, poly hockey, volleyball, golf, and track and field.  Tim was the owner of Tim’s Place, a restaurant in Albuquerque, NM.  He closed it in 2016 and moved to Denver to be with his girlfriend.  Now, Tim runs his own non-profit, Tim’s Big Heart Foundation, where he aims to inspire people to lead meaningful lives.
  • Collette Divitto – is owner and head chef for Collettey’s, a gourmet cookie company that ships worldwide.  Divitto and her business have appeared on CNN, MSNBC, CBS, Good Morning America, BBC, Inside Edition and more.  She is a champion for improving employment opportunities for people with disabilities, and proceeds from her business goes toward supporting that cause.
  • Chris Burke –  is a Golden Globe nominated actor who has appeared in many TV and film roles.  He is mostly known for his role in the television series “Life Goes On” as Charles “Corky” Thatcher, which helped change the way people view those with disabilities.  He has worked at the National Down Syndrome Society (NDSS) for over 2 decades and has been their Goodwill Ambassador since 1994.
  • Isabella Springmuhl Tejada –  the first fashion design with Down syndrome to have her work showcased at London Fashion Week.  Tejada has a fashion line called Down To Xjabelle.  Her work landed her a spot in the BBC’s 100 Women list, an annual collection of the most inspirational and influential women in the world.

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