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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 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.

"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."

"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

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The link between Alzheimer's disease and Down syndrome
Down syndrome: Is awareness overdone and action overdue?

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Comments on "Does marketing Down syndrome educate or mislead?"

Maureen Wallace October 13, 2013 | 10:31 AM

I love these comments and such diverse, multi-faceted perspectives. Hearing others talk about this issue is so much a part of why I wanted to write about it. We HAVE to keep talking and sharing our views as parents advocating every day. So, thank you. Each of you. Such valuable points.

Vicki Vila October 10, 2013 | 9:42 PM

Maureen: thank you for writing this very comprehensive article and discussing some topics that may seem simple but can sometimes be divisive. While I'm certainly not a fan of oversimplifying Down syndrome and painting it in a stereotypical way, I can understand why we have these marketing campaigns. As Leticia said, we have moved beyond the days of institutionalization, so now we need to show the world what life with Down syndrome is like. I like the sound of the NDSS "My Story" campaign, especially as it invites people with Ds to contribute. Likewise, I think the work that IDSC is doing is valuable and I don't necessarily think their photographs are "selling" our kids based on what they can do, at least not the ones I've seen. As in the picture shown with the article, "I am a photographer" can be interpreted in a variety of ways, not only in the sense of "Oh my golly, a person with Ds can be a photographer??" but just the idea of hey, this person likes the same things as everyone else. She has a hobby, or a job, or a pastime that lots of people like, simple as that. I think we have to remember that much of this is a response to the initial delivery of a Down syndrome diagnosis, which more often than not is still negative. So, the campaigns are designed not only to open eyes but to reassure parents that raising their kids will be in most ways just like raising any other child. That children with Ds will do all the things typical children --- and not-so-typical children -- do, with varying levels of ability, just like the rest of us. It would be lovely to see even more diversity in the IDSC campaigns and I'd hope that parents of children with Ds who are nonverbal, or in wheelchairs or using walkers or communication devices or whatever other variations there might be, would also send in photographs with their own captions to show the beauty of this diversity. That's why I was so proud to be a part of the PSA that Ms. Wallace mentions in the article from the Down Syndrome Association of Charlotte. The idea was very simple: show people with Down syndrome of all ages in a variety of inclusive settings to send the message that hey, we're here. That's it. Not we're great, or we're special, or look what we can do. We're simply in your community, your schools, your work places. And that's it. We're here, as we ought to be. For the record, my son was one of the children featured in the PSA with his tongue protruding -- I initially cringed a little when I saw that in the video, wondering why an image that might validate a stereotype would be chosen. But my son did it purposefully. He was sticking his tongue out in jest at his (typically developing) twin sister, who was also in the PSA. He was 4 at the time of filming, and after all, 4-year-olds stick out their tongues. And by the way, his twin also sticks out her tongue quite a bit, and she lets it kind of hang out when she's tired or bored or concentrating on something. So, after thinking about that, I realized that just because a child with Ds sticks out his tongue does not mean he's doing so BECAUSE he has Ds....this is perhaps a good example of exactly what is being discussed in this piece: you cannot win if you only look at a person through stereotypes. If one thinks this way, then every child with Ds sticking out his tongue becomes another stereotype, rather than just a goofy kid who might be silly or tired or thinking really hard. Or licking his lips! I think focusing on that is missing the bigger point of the PSA anyway, which is the beautiful message of inclusion.

Leticia Velasquez October 10, 2013 | 1:45 PM

As the mother of an 11 yo daughter with Ds who is has less verbal ability than most, I find some of the Ds campaigns hurt. As if we should love our kids because they are capable of achieving certain goals, and this begs the question, and what if they can't? Is my daughter unworthy of life because she may never learn to read or speak well? However, there is a fine line to walk, we need to inform society (ahem the medical profession) that we have moved beyond the days of institutionalization, and the soft bigotry of low expectations is insulting and stifling. And we need to give hope to the mom making a life or death decision for her baby with Down syndrome that there is hope,and, lets face it, we are an achievement-oriented society. If we display lower functioning, odd-looking people in our ads, we may drive them towards abortion. So there is no easy answer here, but just be aware that the right to life is not dependent upon looks or achievement or we are becoming eugenicists.

Melissa October 10, 2013 | 12:54 PM

I guess my biggest issue with marketing is the framing of "Down syndrome is 'ok' because look -they're just like 'us'" It's still an us/them dichotomy, and as Lisa touches on in the article - it says that Down syndrome is only "ok" when it manifests in abilities that are more "typical." I've been on the "different is ok" bandwagon for a while, though, and I know not many people are there with me. More alike than different is still the rallying cry. I'd rather the world accept my daughter simply for who she is, regardless of ability, not be relieved to find out that she does "normal" stuff and only then reach out to her.

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