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?

Down Syndrome Does Not Define Me

The truth is that not all children with Down syndrome are sweet, in the same way that all children aren’t sweet. They’re kids. They get cranky. Who is helped and who is hurt by endless marketing campaigns to embrace those with Down syndrome?

For organizations whose missions include the words, "advocate for individuals with Down syndrome," their efforts to educate often live through targeted marketing campaigns intended to overcome stigmas and communicate the positives about a person with Down syndrome.

But when does that effort go too far? When does marketing become promotion of stereotypes? What if those efforts impart the illusion of a child or adult with superhuman, spiritual qualities?

The halo effect

Now, some — if not many — parents of a child with Down syndrome truly do believe their child is a gift from God, a blessing bestowed only onto special people.

I'm not one of those parents. I believe both my children (and my third child, currently under development) are blessings, but neither is more special than the other — and under no circumstances am I an extra-special person chosen to parent a child with different abilities. No way.

" I’m just like you, and my son is just like your son — in so much as sameness matters. Differences are what make us unique, after all."

I’m just like you, and my son is just like your son — in so much as sameness matters. Differences are what make us unique, after all.

Perhaps the Down syndrome community's penchant for trumpeting the positives of individuals with Down syndrome and glossing over the realities stems from the D word we battle every day. The word "disability" seems to naturally evoke a negative image, because it's a direct spotlight on what someone cannot do. The urge to market Down syndrome may be driven by the overwhelming need to combat that word, and turn the focus from disability to different abilities.

Sometimes, those efforts go too far.

National organizations walk tightrope

Neither the National Down Syndrome Congress nor the National Down Syndrome Society responded to requests for comment for this article on the pros and cons of marketing Down syndrome. Perhaps sensitive to the topic, each has come under fire at various times for implementing a marketing campaign that, to some, felt disingenuous, akin to propaganda or simply irrelevant.

The truth is that each organization has done tremendous good for individuals with Down syndrome, and in any organization's history, a program or campaign is bound to fall flat. Raising awareness is a critical first step to inching closer to tolerance and acceptance. And then, the ultimate goal — the embrace of inclusion, meaning a society that understands and advocates for the benefits of including individuals with an extra chromosome into every facet of life, from school to play to work.

Advice from parents

So what can a Down syndrome organization learn from parents and marketing experts? My first plea is simple — listen to and involve us. Of course, even the royal "us" can disagree on what is effective messaging and what falls into a category flippantly called "inspiration porn." After all, we're each different — and as with any topic, no two opinions will be exactly the same.

"I am a big fan of raising awareness — and by that, I don't mean making society aware of Down syndrome — I mean dispelling myths and advocating for inclusion, compassion and equality," shares Lisa Morguess, whose son, Finn, has Down syndrome.

"I'm not a fan of 'selling' Down syndrome," she says. "I want Finn — and all my kids — to live in a world that assumes that every person has intrinsic worth because they are part of the human family, regardless of what they look like, how they learn, what they are capable of, or even whether or not they will ever be 'independent.'"

“Inspiration porn”

In a Bustle.com article weighing the value of a pageant only for participants with disabilities, the conversation turned to inspiration porn. Cara Liebowitz, a 21-year-old student with cerebral palsy, told Bustle, "Inspiration porn paints disabled people as the less fortunate, the ones who remain Pollyanna-plucky despite all their misfortune. The truth is, we’re not more or less fortunate than the non-disabled population. We’re simply human."

Paul Jones is a cause-marketing consultant and coach who blogs at Causemarketing.biz.

"I'd be less concerned about being accused of inspiration porn than about being exploitative of children or the disabled," he says. "Not every cause out there needs or wants to do marketing, but if your cause does then don't exploit the population you serve. That is, don't put them in situations that would degrade or dishonor them or cause them to lose their human dignity."

Education vs. propaganda

How subjective is that area, though? Is one person’s "honor" another person’s "dishonor?"

Down Syndrome - God doesn't make mistakes

"I've always personally disliked campaigns that depict a child or a handicapped person in a pitiable way or circumstance and then suggest that this wouldn't have happened if only you had helped," Jones says.

Sandra has three children with Down syndrome. "… There is a big difference between educating and misleading," she says. "I think the line is drawn between what is empirical and what might be considered spiritual.

"Personality traits fall somewhere in a gray area and I think that is what people argue over the most. Maybe someday science will show us one way or the other if personality is driven by chromosomes, and specifically the 21st one. When the line is crossed, it dilutes the message that people with Down syndrome are ordinary whole beings just like us."

Words matter

The International Down Syndrome Coalition (IDSC) has a photo campaign through social media. On its website, IDSC says the goal of the campaign — which asks for photos of loved ones with Down syndrome — is "to spread awareness for our loved ones by sending messages to the world with captions on photos that you send in."

The photo campaign has stirred some discontent among parents of children with Down syndrome, usually not because of the photos but often because of the wording that accompanies photo.

IDSC explains the process. "You can help us create a caption, or we will help create one for you! …One of our editors will contact you shortly after you send in your photo to discuss verbiage for your photo."

Linda Nargi is the executive director of the nonprofit and mother of two girls with Down syndrome.

"The editors for the IDSC photo campaign work very hard behind the scenes every day with the guidance of the IDSC leadership," she says. "We work closely with the family to fine tune the message they want to send the world about their loved one with Down syndrome while keeping the greater disability community in mind. It's a delicate balance."

Sometimes, the scale tips against them.

Up next: More about Down syndrome awareness campaigns

 

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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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