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Does marketing Down syndrome educate or mislead?

Maureen used to be obsessed with baseball -- and then she had children. After she welcomed her son, Charlie, and his extra chromosome, she discovered her passion for writing about Down syndrome and disability-related issues.

With two...

Parents debate good, bad and wacky

Inspiration porn. Children with Down syndrome on catalog covers. Photos, videos and quotes shared and re-shared through social media. What breaks through this clutter of well-intended sweetness?

Discerning truth from stereotype

Down Syndrome - I am a photographer

"I think when people and advocacy groups focus on promoting the 'positive' qualities of Down syndrome, they're falling into the trap of actually promoting people's worth based on what they can do — including their ability to make people feel good," Morguess says. "I understand the desire to help people see past the negative perceptions they might have of Down syndrome, but counteracting that with campaigns that 'market' people based on positive qualities only emphasizes their 'otherness' and promotes the belief that people should be valued based on what they bring to the table.”

The Down Syndrome Association of Greater Charlotte (North Carolina) recently introduced its first Public Service Announcement (PSA) advertising the 2013 Buddy Walk, which raises awareness of and funds for Down syndrome programs, services and research.

As a volunteer, I helped craft the script for the PSA and supported the emphasis on showing the many ways people with Down syndrome are just like us and participate in every facet of life. The video includes children and adults with Down syndrome participating in and enjoying a variety of situations.

Several shots include a child with Down syndrome whose tongue is protruding.

"Too" authentic?

"Tongue protrusion in babies with Down syndrome often results from a combination of factors — low muscle tone in the tongue and what we call relative macroglossia, where the tongue is proportionally bigger than the smaller oral cavity," explains Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital. "As babies with Down syndrome get bigger, the space in their mouth enlarges, allowing more room for the tongue."

While we rarely notice our son Charlie's tongue protrusion anymore, I'm aware that the characteristic stands out to others, and so I hesitated when I saw the video.

My husband noticed it, too. We ultimately agreed it's authentic and that's what the PSA was about — authenticity in how people with Down syndrome are a part of our lives.

Not everyone sees it that way, probably because the tongue protrusion is a visible difference, and the organization received some criticism for including those shots. The truth is that people with Down syndrome do tend to have visible differences, from slanted eyes to smaller ears.

The lesson? It's unlikely that any one marketing effort will make everyone happy, and sometimes the truth makes people uncomfortable.

Awareness campaigns

The National Down Syndrome Society (NDSS) recently launched its “My Great Story” campaign. "The My Great Story campaign is the largest NDSS public awareness initiative, with over 600 stories from 49 states in the collection. The goal of the campaign is to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them."

The essays include mentions of the person’s limitations or challenges and primarily focus on their abilities, from reminding family members to slow down and live in the moment to sharing adventures of new activities — like surfing — and encouraging others to try new things, too.

To some, the campaign serves little purpose because it lacks a tangible call to action. Others say the campaign is "us speaking to ourselves," according to one parent who asked to remain unnamed.

NDSS reports receiving more than $6 million in donations for national and regional ad space and services, purchases that the organization says ensured more than 225 million Americans saw one or more of the print and digital PSAs. Is that success?

NDSS also offers more "call to action" campaigns, such as its "Get to Know Me" poster and lesson plan for classroom use, which includes a brief question and answer sheet designed to encourage questions and to dispel some of the more common myths about people with Down syndrome.

Overboard?

The Facebook page for a book titled The Gifted Choice posted an image in July 2013 that pitted parents against one another in various Down syndrome-related Facebook forums.

The Divine ChromosomeAmy Dietrich Hernandez has three sons — a 17-year-old on the autism spectrum, a 14-year-old with Down syndrome and a 13-year-old on the autism spectrum. She thought the image shared by The Gifted Choice went overboard.

"My kid [with Down syndrome] is gorgeous and sweet and adorable," Hernandez says, continuing: "…when he isn't harassing cats in his bedroom closet or changing the numbers on his point sheet or texting people I work with from my phone and asking them embarrassing questions or shaving his head over the toilet... or, or, or... it's endless.

"Three dimensional, that's all I ask of these campaigns. Make people three dimensional.”

Ask self-advocates!

Perhaps the secret to ensuring that marketing campaigns deliver balanced, targeted messages is in always including people with Down syndrome themselves. That seems like a no-brainer but how often does it happen?

Interact Center for the Visual and Performing Arts is a nonprofit organization whose mission is "to create art that challenges perceptions of disability" and has opened doors for artists with disabilities and audiences eager to experience their work, who might never have seen the arts as a life choice, but who now see the arts as essential to their humanity."

With a nod to sarcastic comedy, the group created a video satire of the wackiest questions people with Down syndrome get from people lacking that extra chromosome and, to these artists, judgment.

What’s odd? Lack of relevance

Then there are those marketing campaigns that leave people scratching their heads or, in this case, speaking out against the name and its intent.

For World Down Syndrome Day on March 21, 2013, the nonprofit group Down Syndrome International launched an awareness campaign called, "Odd Socks." The campaign called on supporters to wear mismatched socks in a visible way to elicit conversation and prompt a conversation about Down syndrome.

Meriah Nichols has a daughter with Down syndrome and blogged about her dismay at the name and intent of the campaign.

"I have some questions about all of this:

  • What if you live in a warm place and are not even wearing socks?
  • Heck, even if you are in a cold place, who is going to look down and start noticing your socks? Which will most likely be covered by your shoes/boots/pants?
  • Who cares if you wear mismatched socks?

"And the most glaring question of all, WHY IN THE HELL ARE YOU USING THE WORD 'ODD' IN A CAMPAIGN RELATED TO DOWN SYNDROME?

"I'd say that Down syndrome (as a disability) has had more than it’s [sic] share of prejudice — any campaign using the word 'odd' as a part of an awareness/celebration endeavor might be a campaign that needs to wake up and take a long swig of coffee."

Nichols' view wasn't isolated. The Down syndrome community recoiled, prompting DSI to rename the campaign and issue an apology.

"We regret to report that we have received some concerns about the campaign in terms of its use of language and its message," the group posted online. "We take this opportunity to apologize to anyone who is offended by our campaign. Please be assured that in no way was it our intention to offend anyone or to deliver a message other than one of acceptance and inclusion of people with Down syndrome."

The campaign name was quickly changed to "Lots of Socks," losing the controversial adjective while retaining what remained a questionable path to awareness and discussion.

Advice for parents

Veteran parents offer advice for a new parent or a loved one of a person with Down syndrome who may be trying to wade through multiple campaign messages at once.

"Don't believe the hype — good or bad — because your situation could always end up better or worse than what you were told," Sandra advises.

"Just take a deep breath, and don't put too much weight on any of the ‘campaigns’ regarding Down syndrome," Morguess recommends. "Every child, Down syndrome or not, is a unique individual and nobody — I don't care how knowledgeable — can predict what anyone's life is going to look like."

Marketing expert Jones takes a pragmatic approach. "I don't know of any foolproof nonsense detector. But in choosing causes to believe or invest in the one I rely on most is how long they've been in business. It's hard to be dishonorable or dishonest and stay in business for longer than 5 to 10 years."

Read more about Down syndrome

Divorce: Does "Down syndrome advantage" really exist?
The link between Alzheimer's disease and Down syndrome
Down syndrome: Is awareness overdone and action overdue?

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