There’s so much I can share about the journey of having a daughter with Down syndrome: The surprise post-natal diagnosis, the joy we found in a sea of fears that first year, and ultimately how it’s not the biggest deal most days.
Some super quick, down, and dirty background on me: I’m a Speech-Language Pathologist who has exclusively worked with children with special needs for more than 15 years. Some children wear their disabilities, such as facial or limb differences, and some are less obvious, like those on the Autism Spectrum. I can think of only one child with DS that I treated. I hadn’t had much exposure to those with an extra chromosome.
Let’s also add to this background: I am the ultimate consumer.
I get that euphoric feeling when a designer brand is in my hands on major (MAJOR) sale—the one I’ve scouted out for months. In preparing for our first child’s birth, I had a full closet of clothing before a single diaper was purchased. (Third kid got diapers and is currently crawling around naked.) Even as a 12th-year Texan, I’m devoted to the bright colors of my youth in Florida, and all I ever wanted was a cutie pie daughter to wear Lilly Pulitzer all day every day. My current mom self smacks my young twenties self with the bottles of Shout stain remover I should buy stock in.
I certainly have that cutie pie daughter, although she does look different than I imagined. But I wonder—what if at 12, 16, 20, or 25, I had opened up my Lillian Vernon or Sharper Image catalog, or even those cool shopping ones on the backseats of planes, and I had seen a child like the one God would send me years in the future? Would that normalize the social acceptance to which I strive for my daughter? When we sift through old magazines for school projects, what if there were children with Down syndrome all over the place, so that the phonics collage had some children with almonds eyes and no nose bridges? If this was the norm, would people stare less often at my daughter? Would the child at the DoSeum not tell her she looks weird? What if the annoying commercials that blast on the higher volume also included a person in a wheelchair yelling, “Can you hear me now!?”? What a world of difference that would make.
Changing the Face of Beauty is a nonprofit organization started by a mother of a child with Down syndrome who thinks that equal representation in print media should be our norm. According to their website, http://changingthefaceofbeauty.org/, Changing the Face of Beauty “advocates for the inclusion of models of all abilities to be seen all the time in general advertising” and they especially “focus on the community of people with disabilities as they are the most underrepresented in the world when it comes to the media.” Not only do I want to open up my magazines, coupons inserts, and July 4th sales ads and see people of different ages, colors, sizes, and abilities, but I want my children to do so as well.
Some of my favorite brands and companies—Target and Nordstrom, to be specific—are paving the way for inclusive representation, and they’re doing so organically—no “special needs” section or extra spotlight required. And the feedback was positive! The message that disability is natural, was loud and clear, just like the sale prices on shorts. You can bet I’ll be supporting these companies for these actions. As if I needed a reason to hit up Target. Again. This week.
This movement has me overcoming some social media fears and sharing my daughter’s picture. After getting head shots done at a CTFOB event and seeing how proud and talkative my daughter became, I am searching for an agency to represent her. This is uncharted territory for me, as I fear the trolls’ comments and the lack of privacy that I’ve maintained to protect her, but I’m fighting for others to see that different is beautiful, different is normal, and different is still going to sell.
Each step we take in normalizing differences among us, can only unite us. It may just start with a picture, but it will lead to conversations and eventually, acceptance.
And isn’t that what all of us want?