After the airing of CBS’s feature story “What kind of society do you want to live in?: Inside the country where Down syndrome is disappearing” — many of my friends and loved ones messaged me, appalled by a mindset that seems to permeate the cultural and secular belief systems that many Icelanders seem to embrace. As noted by the CBS 60-minutes segment, the selective termination rate (which is different than the general termination or abortion rate) is speculated to be near 98% in Iceland when a Down syndrome diagnosis is suspected. Many Icelandic healthcare specialists are aiming for a 100% selective termination rate. And while this is barbaric, horrendous, and shocking to many of my friends, family, and followers (it is to me too so I appreciate the sentiment) — This. Is. My. Reality. A reality where I am highly aware, that the majority of parents (let’s not limit this selective termination trend to Iceland) CHOOSE to end their pregnancies…because of that squiggly little third copy of the 21st chromosome. That same extra chromosome that my child happens to have.
On the heels of this information, I give you…the uncut version of the TEDxACU Talk I delivered last March and chronicled in detail in a previous post (Backstage at TEDxACU: Confessions of a TEDx Speaker, Part 1). As referenced in this previous post, there were quite a few constraints to the TEDx Talk that required me to “whittle” the presentation down to <17 minutes. Additionally, it is against TED regulations to “proselytize” in any way. You will note in this uncut script, I devote a significant portion to selective termination rates. So if anyone out there is wondering where I stand on this issue? Read on…
Other countries aren’t lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it’s 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity — and Down syndrome is included in this category. — Julian Quinones, CBS News
Socially Constructing Down syndrome — The Uncut Script
We’ve all heard of Down syndrome. As a matter of fact, I distinctly recall the first time I learned about Down syndrome. It was in my high school biology course when Mrs. Millsap was teaching us all about human genetics. I remember being intrigued about what we knew about the human genome at that time, and staring intently at those three little chromosomes that factor into every cell of the human body, in persons with Trisomy 21. At the ripe old age of 16, I never dreamed I would one day stare at those three little chromosomes again…via my first child, my son’s karyotype results. For the layperson, a karyotype is a visual graphic of a person’s genetic makeup that includes, for most people, all 23 pairs of their chromosomes. For a person with Trisomy 21, there is a third copy of the 21st chromosome that affects every cell of that person’s body. Trisomy 21 is only one kind of Down syndrome, however. In Translocation DS, that third chromosome will attach itself differently to other chromosomes (not just the 21st). And for people with Mosaic Down syndrome, not every cell in the body contains a triplicate copy of that 21st chromosome, only some do. Yet all of these people are characterized as having Down syndrome. Down syndrome is an interesting syndrome, in that it’s referred to as a “syndrome” rather than a disease or a condition, because like any other syndrome – it’s diagnosable by a collection of attributes or what medical professionals refer to as “markers.” The defining “marker” is the karyotype. My son Everett was born with quite a few of theses “markers,” but we weren’t entirely certain he had Down syndrome until we received his karyotype…and there it was…that third squiggly little chromosome. I’ve often wondered why the third one had to be so squiggly, but as my son has grown into a boyish three-year-old, I’ve decided it’s squiggly and “in-your-face”…very much like his personality. I’ll never forget the day he was born. My first child. My son. We waited patiently to conceive him, and patiently for his arrival. But we never dreamed he’d enter this world 5 weeks early, packing some extra genetic material. What was even more shocking than his early arrival and the potential for “Downs,” however, was the way the world greeted him when he made his appearance. My physician was very thoughtful and communicated the news that would change the course of my life forever, the best she could. She explained that she thought my baby had Down syndrome, but we wouldn’t know for sure until karyotype results were obtained. After “breaking the news,” she hugged me, wished me the best, and left to deliver more babies. And the compassion, care, and concern left with her exit. I looked around, stunned (nurses were whispering in an alarmingly hushed tone). Except for one particular nurse. She was very vocal, and proud of it. And she decided it was her place to tell me loudly and definitively, “Your doctor just gave you false hope….your baby has Downs. I’m certain of it. I’ve never seen that many markers and it not be Downs. I’m telling you because I would want someone to tell me the truth.” If I could go back in time, I would shout at the top of my lungs to this woman – Well…I DON’T WANT TO KNOW. I just wanted to enjoy my new baby at the time. But that was stripped from me. With those words…your baby has Downs…the joy that most new parents experience with the birth of their first child, was completely robbed from me. She then went on inform me that I shouldn’t even try to breastfeed my new baby, because “Downs babies can’t breastfeed.” And then later, blabbed that we chose Everett’s name…because I was saving my favorite name, a better name, for my next baby. Completely false. And very hurtful…on so many levels. And as I heard this nurse speak so callously of my new baby and my parenting (it was very much an out of body experience) every communication lesson I had ever learned K through PhD, surged through my brain as I tried to make sense of it all…from the diagnosis itself to how others were reacting to it. And at some point, I can’t recall exactly when…I began to question why this nurse and others had the gall to say such hurtful, unfiltered things. This wasn’t the reality I chose. I didn’t choose to be in a reality, where nurses, specialists, and strangers labeled my child as “Downs” and put limits on him, immediately after he was born. And then I started to form bigger questions…because, you know, that’s what we academics are best at…forming complex questions and then making a research agenda out of them. The bigger question, in my opinion, was – How did this reality come to be and why does this reality exist? A reality where nurses, specialists, professionals, strangers, friends, etc. immediately labeled my child as “Downs” based on a collection of visible markers. So I did what any academic does when they have questions about anything – I started to do some research. And here’s the reality check I received, a reality check grounded in a history fueled by inaccurate assumptions, unfair stereotypes, and the selective segregation and termination of persons with Down syndrome:
- Research theme #1: Persons with disabilities at large, but especially persons with cognitive disabilities, have been marginalized for quite some time. A baby born with Down syndrome during the modern era…1940s or 50s let’s say…would almost certainly be ripped from his or her mother’s arms and institutionalized. Since these babies would only be surrounded by other individuals with Down syndrome, and it was assumed that they cognitively wouldn’t “amount to much”….their basic needs would be met, but that’s it. And as they grew, no one was really concerned with meeting the higher-order needs of these “Downs” people during this era. Because according to those in charge and assumptions of the time, people with Down syndrome weren’t capable of achieving higher-order needs, such as the understanding and fulfillment of one’s true potential.
- Research theme #2: This began to change in the 1970s with the disability rights movement and culminated in 1990 with the ADA (Americans with Disabilities Act) that “prohibits discrimination and ensures equal opportunity for persons with disabilities for employment, state and local government services, public accommodations, commercial facilities, and transportation.” It was during this time that challenges to the poor assumptions held about persons with disabilities emerged in force, as children with Down syndrome and other developmental delays began to fill our public school classrooms. And low and behold…these children started to…..gasp….learn. And guess what else? They started to reach their full potential, just like any other child. I’m a child of the 80s. A student with any kind of disability never once sat in one of my classes, K – 12 (that I was aware of). So I was pleasantly surprised that this reality, a reality where general education and special education students are segregated…is no longer a static one. Segregation is still a problem of sorts, as it’s done in more sophisticated ways today, but progress has definitely been made since the modern era.
- Research theme #3: Despite all this progress, nurses, doctors, laypersons, and complete strangers still hold fast to old-fashioned ideas about who people with Down syndrome are and what they are capable of. If I had $10 bill for every time a person asked me “How high functioning is he?” I would be one rich mama. I recall in the early days with Everett, I was in a long line at our local Dillards, trying to buy baby clothes during one of their infamous clearance sales. Everett was in his little stylish jogger stroller, playing with some stroller bar toys and laughing loudly. It was a very endearing moment, ruined when a complete stranger looked at him with a pathetic “I feel sorry for him” grin, and then asked me that question – “How high functioning do you think he’ll be?” I was floored. I looked right at that women and responded, “Well….how high functioning are you? Because quite frankly, that’s not a very socially appropriate question. And perhaps you should be more concerned about your own level of functioning, especially as it relates to social etiquette.” Kind of funny, and I made my point…but not one of my prouder moments. What had I taught this stranger? Absolutely nothing about Everett’s potential, and everything she probably already thought about mamas with kiddos with disabilities. We’re angry, bitter and tired. And I have a confession….a lot of us are. But it’s not because of our children with Down syndrome. It’s because many of us feel the pressure to teach the world about our child when we should be focused on the opposite – teaching our child about the world. And it’s exhausting at times.
- Research theme #4: One of the earlier findings I uncovered about Down syndrome – is this little fact. Because of a new invention called “prenatal screening,” people are finding out that their babies have Down syndrome early during the gestational period. But instead of giving birth to these babies and institutionalizing them 1950s-style, 67% of these parents are terminating their pregnancies altogether here in the US. The statistic is much higher in other countries such as France and Denmark. All because of that squiggly little third copy of the 21st And I have another confession – this statistic crushes me, every single time I hear it. But this is a part of our reality, a reality with both bright and dark dimensions. On one hand, it’s a reality where beautiful strides have been made by determined mamas, dads and children with disabilities who have grown into adults, and new strides are just on the horizon! I’ve heard it once said by an insider…one of Everett’s therapists….that there is no better time for a person with Down syndrome to be born! There are so many medical, therapeutic and educational interventions in place, that are just incredible, and they’re helping our children reach their full potential…and our children are very aware of it! But this dark dimension, where an entire population of people is starting to dwindle in numbers because of selective termination and prenatal testing, is a difficult dimension to accept. It’s been proposed that if the population of persons with Down syndrome continues to diminish, and it most likely will…because of this movement to “screen out the Downs kids”…then our encounters with persons with Down syndrome will become few and far between. And our reality will change yet again, including Everett’s reality where he lives in a world with fewer and fewer people who are like him. He’s going to learn about these statistics someday. And he’ll learn about how people with Down syndrome have been historically marginalized, hidden and segregated at best, eradicated at worst. Or perhaps he’ll learn his worth and his place the first time someone labels him as “Downs” or “retarded”…to his face. Either way, this is the reality we mamas are faced with and this is why we’re exhausted. Not only do we have to teach the world about our children in the hopes that we can change the way we talk about disability and Down syndrome in particular, but we have to retroactively explain away and rationalize a reality…that is very difficult to minimize. So here’s the deal, I vote we start to change reality. Together. Give us mamas all a break…do us all a solid…and start changing the way you think and talk about people with Down syndrome and other developmental delays. Let’s socially construct a new reality, shall we?
So you’re probably thinking, uhm….what’s social constructionism? And how does one socially construct something? To briefly summarize a very complex set of theoretical assumptions – social constructionism occurs when we use language to label things. These labels or social constructions that we use in everyday language help us to communicate with each other through a system of shared meaning, and they’re oftentimes tied to context and history. For instance, the “Downs” label stems from the fact that Dr. Down “discovered” the syndrome by noting a pattern to the many markers that consistently appeared in persons with Down syndrome. That is in fact why we refer to Down syndrome as…Down syndrome. Note, I didn’t say Downs. There was only one Dr. Down (thus, it’s not plural) and Dr. Down does not own the syndrome (thus, it is not possessive). So unless you speak the king’s English, it is technically Down syndrome. But based on the title – Down syndrome – at some point we decided it was okay to use Dr. Down’s last name to label children with Down syndrome. We began referring to them as “Downs children” “Downs babies” and “Downs parents,” socially constructing the idea that these individuals are different, and deserve a descriptive label that highlights their “difference.” And through these labels and social constructions, we began to understand and communicate what Down syndrome means in everyday conversation as we spoke about “Downs kids.” The problem with this label, like any label, is that “Downs” doesn’t adequately describe Down syndrome. Thus, it’s an impartial label or description. And the variations of the “Downs” label…wow. Another complete stranger approached me once at a local office supplies store, simply to tell me, that a friend of a friend of his also had a “Down boy” and aren’t the “Downeys always so happy?!?!” Down boy? Isn’t that a dog command? And Downey? That’s actually a fabric softener. SMH. I cringe every time I hear the word “Downs” because it’s always used as a label (i.e. Downs kid) and is always followed up with a lot of inaccurate and unfair assumptions about my child, like, “He’s always so happy” or “He’ll always be your little child.” Wrong and wrong. He is happy some of the time, but very, very stubborn most of the time, which frequently leads to a battle of the wills between us. And he’s already growing into his own little personality, opinions, and adult-like ideas…it saddens me to think about him growing up and moving out someday, but he will. Because in fact…despite the labels and limits, the impartial social constructions, others like to place on him, the reality is this – Everett can do whatever he desires and the same applies to his peers with Down syndrome. But we will always encourage him to act and achieve with a Christ-like heart (including showing grace to those that minimize his potential). So another appropriate question is this….what’s next? And how can we socially construct a different reality, where people with Down syndrome aren’t labeled, limited and erased?
Well, well, well. It just so happens that I’m not the only one who yearns for a reality where children aren’t erased from this earth simply because they have an extra copy of the 21st chromosome. A reality where physicians don’t urge expectant mothers by saying “don’t be hero” in an effort to sway a mama’s opinion towards termination. True story. These same specialists frequently try to shape our expectations as well. Recently, on one of the mom forums I’m a part of, a new mom expressed some concern about a geneticist who explained to her that her new baby would ultimately reach the maturity level and cognitive complexity of a neurotypical 9-year-old. So. Very. Inaccurate. And unnecessary. Let me reassure this mom, the geneticist who delivered this information, and everyone listening today – we are still learning about the full potential of our children with DS. And these children, just like any other child, should be allowed to explore this potential without any labels or limits imposed on them. So here’s what’s next — because if this story and diagnosis stories similar to Everett’s, a group of moms collectively banded together via social media (Facebook) four years ago and the Down syndrome Diagnosis Network emerged. We moms refer to ourselves as “Rockin moms” and we are determined to change the world one social construction at a time. We do this by frequently posting pictures, stories and anecdotes to social media in an attempt to alter how people perceive and construct ideas about Down syndrome. Our chosen descriptors (Rockin moms, because we have children who “rock” an extra copy of the 21st chromosome) are furthered through the collective hashtag #rockthe21. Additionally, annually on World Down syndrome Day (WDSD, 3/21) as well as DS Awareness Month (October), we engage in social media campaigns that reconstruct inaccurate or partial views of what it means to have or live with Down syndrome. In March 2015, we participated in #lifewithDS by creating blogs that described our average days with children with DS (very much like a typical day for many parents and family members) and posting/sharing these stories. In 2016 we pushed the hashtag #deardoctor by posting/sharing letters authored by Rockin moms that describe the effects of harsh diagnosis conversations. These campaigns are primarily intended to socially construct new ideas about postmodern life with DS in an effort to redirect or reshape conversations about Down syndrome. If you are so inclined, hit up Instagram and search the hashtags as well as a few other fan favorites (#theluckyfew, #downsyndromeadoption, #morealikethandifferent). You are certain to find several socially constructed themes that reflect what life is actually like for our children with DS and for many of us parents and loved ones of children with Down syndrome. In other words, our reality. In particular, #theluckyfew is my go-to hashtag. I try to use this hashtag when posting moments of celebration related to raising a child with Down syndrome, but also some of the trials. Because that is a part of our reality as well. Everett recently underwent his fourth surgical procedure…a lot of our kiddos have health issues, some worse than others. I always try to use the hashtag #theluckyfew on posts about Everett’s health and behavior struggles as well. In my reality, sometimes it’s hard attending to all the “extras” (such as surgical procedures and medical appointments) that Everett’s extra chromosome comes with, but I still feel incredibly blessed that I get to walk through this journey of parenthood with him by my side. Heck, he’s in the lead most of the time…yikes. So the health and developmental challenges are definitely a feature of our lives as parents of kiddos with DS….but the future, the reality, for our children is very, very bright. For instance, Google entrepreneurs with Down syndrome, and your results will undoubtedly display multiple examples of adults with DS who pioneered their own clothing lines, book lines, restaurants, public speaking circuits, food trucks, snow shacks, you name it! And our younger kiddos are making huge strides as well, as they sit in public education classrooms just soaking it in…learning how to read, how to do math, and how to interact with their peers. And their typical peers…they’re learning some valuable lessons from the inclusion process as well. Times they are a changin’….and so should our expectations and our language.
So in conclusion, let’s rethink and reshape future conversations about Down syndrome. Let’s socially construct a new reality for everyone, including differently-abled persons. In the case of Down syndrome specifically, though, it all starts with those early conversations. Doctors, nurses, geneticists, pediatricians – when diagnosing an infant with Down syndrome and/or describing what you think a child with Down syndrome is like, please don’t use labels, limits, and partial descriptions – get fully informed and present all available information. There are plenty of resources online including those provided by the Down syndrome Diagnosis network. There are even ethical guidelines offered by the American Journal of Medical Genetics that are very helpful. Historically and contextually speaking, the diagnosis conversation is a key moment that shapes future dialogue about Down syndrome. Please be very mindful of this. And to my audience at large…if only you woke up to a social media newsfeed similar to mine every morning…filled with photos of adorable children and babies with DS, tackling the world one milestone at a time…and you know…kicking butt and taking names. Adults with Down syndrome, celebrating the same life accomplishments you hope to aspire after leaving ACU’s campus – getting married, starting their own businesses, becoming actors, models, writers, artists. Or obtaining meaningful employment with corporate and non-profit organizations. I know some of you get glimpses of these stories because you love to tag me when you share them on social media! Keep sharing, keep learning, invite children and adults who are differently-abled into your lives, and by all means…let’s start some new conversations about people with Down syndrome that emphasize who they are….and not what they have. Let’s socially construct a new reality, where we talk about people…all people, regardless of ability….using person-centered, descriptive language, and not impartial, harmful labels. And to my fellow Rockin’ moms – I’m not going to leave you out! Moms of previous generations carved a pathway of inclusion for us – they changed public education and the way traditional school systems worked. No easy task. It’s up to us, now, to assume a new charge and change public knowledge about our children…and it all starts with how WE talk about it. Also not an easy task, but one that I think we’re up for….because…ya know, we Rock! Thank you and happy belated World Down syndrome Day!