On Down Syndrome and Falling Far From the Tree
I was looking forward to Andrew Solomon’s Far From the Tree with a mixture of eagerness and trepidation after reading Cristina Nehring’s article, Loving a Child on the Fringe, and Alison Piepmeier’s initial reaction to the book on her blog, Baxter Sez: “My Early Thoughts on Far From the Tree.” The book is generating quite a lot of buzz in the Down syndrome parenting community, and at 702 pages (not counting bibliography, notes, acknowledgments, and index, which comprise another couple hundred pages), it’s quite a tome.
To date, I’ve read the first four chapters, and I’ve been trying to sort through my thoughts and feelings. I wanted to get some of my thoughts down specifically on Solomon’s chapter on Down syndrome while it’s still fresh in my mind.
The first chapter introduces us to the concept of “horizontal identity” – that is, the fact that some of us in the human family have something that is so fundamentally different about us that we must seek out peer groups who share the same fundamental differences outside of our families (from whom we receive our “vertical identity”) for a sense of belonging. The second chapter is on deafness; the third is on dwarfism, and the fourth is on Down syndrome – all examples of “horizontal identity.”
I have mixed feelings about his presentation of Down syndrome. Solomon is a gifted writer, and this book was obviously an extremely time-intensive labor, as it’s comprised of extensive research and interviews that span years and years. I think it’s important to keep in mind, however, that this book is not intended to be a piece of advocacy for the specific “horizontal identities” which are discussed. I think as a whole, Solomon’s book is meant as a sociological study, and to that end, it’s fascinating – an exploration of the human condition through a lens of fundamental differences, and I guess as far as advocacy goes, it’s perhaps meant to advocate for diversity in general. As for each topic the author writes about, I’m not sure how or why he hand-picked the specific topics he did. In any case, I’m pretty certain that he didn’t choose them because he has a soft spot for all or even any of them.
As a parent of a child with Down syndrome, it’s always a little awkward and uncomfortable for me to hear or read an “outsider’s” take on what it means to have Down syndrome, or what it means to love someone who has Down syndrome. A person can study Down syndrome in books, they can interview people who have Down syndrome and their families, they can enter a career that will bring them face to face with Down syndrome five days a week, but unless you live Down syndrome – and by that, I mean either have it yourself or experience the highs and lows, day in and day out by having an intimate relationship with someone with Down syndrome – you don’t really know Down syndrome. So as a parent, I always hope the “outsiders” will get it right, but they inevitably, even with the best of intentions, get it at least partly wrong, and their perceptions are colored by their own biases.
And I have no doubt that the same can be said of all the other horizontal identities out there as well.
There were a few things that struck me as I read Solomon’s chapter on Down syndrome. First of all, it has a generally grim tone. While he does touch on the joy and fulfillment most families with a child with Down syndrome experience, overall, he seems more intent on discussing the down side of having a child with Down syndrome – or of having Down syndrome: the medical issues, the loneliness, the battles with school districts, the agony of parents trying to figure out what to do with their adult children with Down syndrome. And while these are certainly all very real issues, they are no more real or important than the joy and fulfillment the vast majority of families in the Down syndrome community experience. I guess what I’m saying is, if Solomon intends with this book to promote the idea that diversity enriches humanity, a more balanced picture would be called for.
I got the feeling that Solomon actually didn’t delve into the Down syndrome community nearly as deeply as he did the deaf community or the dwarf community. He immersed himself in Deaf culture – to the extent possible as a hearing person – and even traveled to a remote third-world community where deafness is prevalent in order to explore deafness outside of America. He became intimately familiar with dwarfs and families of dwarfs and attended numerous dwarf conventions. His exploration of Down syndrome, on the other hand, appears to be based solely on academic research and extensive interviews. He mentions Buddy Walks, but there is no indication that he actually attended a Buddy Walk, or a Down syndrome convention, which are held annually and have been for years. He doesn’t make any mention of the online Down syndrome community through blogs and forums, which are booming and absolutely integral parts of the Down syndrome community as a whole.
Further, all of the families he interviewed seem to reside in New York, and they all have adult children with Down syndrome. I believe this is important because the face of Down syndrome changes with each generation, or even half-generation; the lives of children born today with Down syndrome look very different from those of children born with Down syndrome even ten years ago – certainly twenty years ago. I watch Finn with his iPad and am in complete awe at how technology is enabling him to teach himself so much through interactive play, and it nearly blows my mind to think how different it was even five years ago when there was no such thing as an iPad.
Solomon is off in his word usage, as well. The chapter is peppered with “Downs kids” and “Down’s.” “Down’s” is not considered appropriate here in the US (although it is in Europe), and “Downs kids” is frowned upon here. From a completely objective standpoint, the fact that Solomon completely missed the People First Language movement – which is a huge hot button issue in the Down syndrome community – is a red flag. Additionally, he uses the term “mentally retarded” pretty liberally. It honestly didn’t offend me; I can handle it when it’s used in the clinical sense (it’s only been done away with in the clinical sense because it became a casual and ubiquitous pejorative; had it retained only its clinical meaning, it never would have come to be seen as offensive, and I still maintain that regardless of what we demand the terminology be changed to, it will eventually be flung around as an insult – attitudes have to change before language can really be changed), but the fact that he seems unaware that “mentally retarded” just isn’t used any longer indicates that he hasn’t done his homework as thoroughly as perhaps he should have. It’s also indicative, I think, of the fact that he only seems to have spent time with families of adult children with Down syndrome; some of the insights he gained from them are simply outdated.
The chapter does discuss the issue of prenatal testing for Down syndrome and the implications of it, and he does a good job with this discussion. Prenatal testing, especially in light of the new, “better” tests available to expectant mothers now, is another hot button topic in the Down syndrome community. He remains neutral, discussing the perceived benefits of testing and the impact on society by likely reducing the number of babies born with Down syndrome, and therefore also reducing funding for research and services for people already living with Down syndrome.
In his chapters on deafness and dwarfism, Solomon discusses the fine line that exists between affirming and helping those with the conditions, and trying to improve or change them – as with cochlear implants for the deaf, and limb-lengthening surgery on those with dwarfism. Both of those procedures have ignited passionate debate in their respective communities, with some parents being adamantly in favor of doing whatever it takes to give their children every tool available to help them fit into a society that is not naturally equipped to accommodate them, and some parents righteously indignant at the suggestion that their children should be “normalized” to fit an arbitrary convention. These are extremely important issues, and I wish Solomon had carried this idea into his exploration of Down syndrome; indeed, I wish it were more a topic of discussion in the Down syndrome community. Solomon discusses Early Intervention for children with Down syndrome, but only in terms of obviously that’s what parents do for their poor Downs kids nowadays, and boy, are they lucky to have it – not like in the old days. No discussion of the implications of Early Intervention – how it’s possibly the equivalent of the cochlear implant or limb-lengthening: an effort to normalize children with Down syndrome to the extent possible rather than accepting and embracing them as they are (do I have you riled yet? Don’t you think this is worthy of discussion at least? I do.).
The chapter left me feeling a little sad. I lay awake in the quiet darkness of my bedroom on more than one night after reading it pondering . . . pondering Down syndrome, our family, Finn, Finn’s future, worrying over all the things that parents who have a child with Down syndrome worry about. Solomon’s presentation of Down syndrome dug up feelings I thought I had put to rest a long time ago, and that’s unsettling.
Nevertheless, I’ve never believed that it’s honest to insist on focusing only on the positive, and doing so does a disservice, I think, to those affected by Down syndrome. I certainly don’t see Finn’s life as bleak or grim, nor do I see our life with him in it as bleak or grim. It’s mostly just life – full of ups and down, and yes, with a unique set of challenges where Finn is concerned. It is worth it? An unqualified yes.
I’ve set aside Far From the Tree for the time being, as I’m reading my book club’s current selection, but I plan to get back to it in the next couple of weeks.
Techno Kid
Finn plays with the iPad a lot. So much so, in fact, that we actually invested in a second iPad (for me) because he and I were basically, well, fighting over it. I’d be reading a book on it, and he’d be raising hell because he wanted to play on it. Although we’re certainly not parents who give in to their kids’ every demand or buy all the latest gadgets their kids want (we’re one of the only families I know that doesn’t have a Wii, or even a flat-screen TV), the iPad is a different story. More and more, it’s being utilized in classrooms, and even Finn’s speech therapist sometimes uses one with him and her other students. It engages him, it’s interactive (rather than passive, like watching television), and he’s learning from it. More so, in fact, than I realized.
I was shocked to discover recently that he recognizes most of his letters. I did not teach him this – I’ve never been a flashcard-wielding parent with any of my kids, it’s just not me. And he’s not learning this in preschool, either – the preschool he attends is not academic, but rather, developmental.
Do you know what this means? If he can learn his letters, he can eventually learn to read. And before you say, “Of course he’ll learn to read,” let me just say that while many, many kids with Down syndrome do learn to read nowadays, some do not. I try to maintain reasonable and healthy levels of optimism and realism with regard to Finn’s capabilities. Even so, I was surprised at how much this surprised me. Maybe because it happened without any person’s intervention – it was just him and the iPad.
But wait, there’s more!
Not only can he identify letters, he can match those letters up with words that begin with letters he is presented with! I won’t go so far as to say that this is reading or even pre-reading, but it’s certainly a step towards pre-reading.
I’m suddenly feeling very, very fortunate that Finn was born when he was. There is so much educational technology now, it’s relatively easy to access, and the benefits are undeniable. It’s hard to say what studies will show in ten or twenty years, looking back and comparing the educating of kids with intellectual disabilities in this age of technology versus educating them just a half a generation prior, before the technology explosion, but I imagine there will be notable differences.
Here are some of Finn’s favorite iPad apps:
iTot Alphabet (this is the app he’s using in the first clip above)
National Geographic Look and Learn Animals (this is the app he’s using in the second clip above)
Preschool Farm Animals by Photo Touch
First Words – Toddler Touch and Say
Let me know if you have any apps you’d like to suggest!
Down Syndrome Awareness: Guest Post by Emily
I know that Down Syndrome Awareness Month is long behind us, but it’s never a bad time to raise awareness. The following was recently sent to me by a fellow mom of a child with Down syndrome. She first got in touch with me when her son was a little babe, and we’ve since become better acquainted via Facebook. The online community of parents of kids with Ds is amazing, and I am truly grateful to be a part of it.
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In August of 2011, our son Jacob was born. We had the “surprise” diagnosis. We live in a rural area with very limited resources. That is why searching the Internet seemed to be my only option. We had so little knowledge of what Down syndrome was all about. Therapy for babies? I had never heard of such a thing. We do not have those resources in this immediate area. No doctor or specialist offered much information at all. As a matter of fact, a doctor told me to not read the internet at all for any information, because most of it was outdated and inaccurate. When they did try and share information it all seemed so impersonal and generic, since they had not been through it themselves. I figured that no one would be more help to our family than the up close and personal from another family. That is when we found Lisa and Finn.
SEARCH: “Down Syndrome”, “New mothers with babies with Down syndrome”, “Children with Down syndrome”, “Life with a child with Down syndrome”, etc, etc,…then I was introduced to “Life As I Know It” by Lisa Morguess. I immediately felt a connection when I saw that she was close to my age and I saw how many children she already had. I was wondering what is was like for the older children to have a sibling with Ds. I had never even read a blog before Jacob was born.
And so began my quest for information on what it was like to be a mother of a baby with Down syndrome. I knew no one at that time who had been down this path. I longed for that connection, for someone to tell me what this was going to be like.
I thought Finn was the most beautiful boy! I looked over all of Lisa’s pictures carefully and just cried like never before. Tears of joy that is! This is how Down syndrome really is! No institutions, no grim outlook at all, this really did not seem any different than raising any other typical child. I combed the blog pages looking for insight, and I got that. A very honest depiction of their life raising Finn. Also seeing another outlook on therapy was quite reassuring after feeling so much urgency and pressure from other parents in the Ds community. Another thing most people do not know is the raw grief and emotion involved when things are not quite as expected with your new born baby. I also learned this is part of the process and that it is okay. I saw how much Finn’s brothers and sisters adored him and looked after him. I loved to see how his sisters took care of him and let him play dress up with them. I soon developed an excitement about the future in days to come. I knew my daughter was also simply loving her brother for being Jacob. That is the beauty of children, they love completely and don’t even care about Down syndrome. A lesson all adults could really learn from.
I quickly learned how politically incorrect medical professionals are as a whole. Through the pages of the blog I was introduced to a more progressive way of thinking, as well as a more articulate way of speaking in a language that showed respect for all individuals living with a condition called “Down syndrome”. I have started encountering a lot of individuals who still have so many of the same old tired images of people with Down syndrome. The ” I am sorry’s”, the long face they reveal after showing them a picture of my son. I just had an elderly man tell me that he used to know “some of those”. It broke my heart, but it was then that I realized how important it is that we continue to educate the public and get rid of these old outdated images and feelings some people still have.
I no longer felt like the only woman in the world with this new path before me. I emailed Lisa with countless questions and she would always get right back to me. I soon had my friends and family read her blog so they could better understand. I became inspired, motivated and confident that we would be “okay”. I can always count on well researched topics from Lisa and value her opinions, whether I agree or not.
I have made many more connections since our journey began. However, I will never forget the day that young Finn popped up on my laptop screen and showed us all how beautiful life is.
Thank you Lisa and family for taking the time to advocate, research and educate our public on the truth and facts regarding Down syndrome. You have a strong voice and I hope you continue to be a presence in our community.
~ Emily
Finn’s Awesome Preschool . . . or, Beautiful Inclusion
Yesterday the preschool Finn attends had its annual family feast in honor of the upcoming Thanksgiving holiday. It was a time for the families to sit down together and share a meal (“breaking bread” together is an important element of this preschool program, as the director is a big believer in connecting with one another through communal activities; the kids eat breakfast and lunch together every day, provided by the school), and a way for the school to thank the families for their involvement in the program.
Eating proficiently with utensils (including soup from a spoon!) and drinking from an open cup are just two of the skills Finn has mastered merely by having these skills modeled by typical peers.
The outdoor area is a kids’ paradise – so much to see and do and explore. Finn is completely at home there and wanted to show us everything.
I’m not sure any if the kids see anything different about Finn. They all seem to accept him as just one of them. They all greet him when I drop him off in the morning, and there is one little girl in particular who proclaims Finn her “best friend” and hugs him without reservation. The teachers recognize Finn’s differences without allowing those differences to define him; they talk to him the same way they talk to the other kids, they have generally the same expectations of him that they do the other children (taking his dishes up to the teacher after eating, for instance, and picking up toys that he is finished playing with). They see him as a whole person with value and potential. I wish with all my heart that the whole world could see him that way.
Down Syndrome Out and About
I know Down Syndrome Awareness Month is over, but I have to jot down a brief encounter I had yesterday.
Joey had a Little League game, and it was at a sports park where there are multiple ball fields and a playground, and the whole thing is adjacent to an elementary school. So I’m sitting in the stands with Scarlett watching the game, Michael is helping coach out on the field, and Daisy, Annabelle and Lilah are running around. I craned my head around to make sure I could still see them, and I spot a little boy and my radar suddenly starts doing its thing: the little boy had Down syndrome – I could tell from 50 feet away. Funny how once you have a kid with Down syndrome, you have a nose for other kids with Down syndrome.
Now I’m visually stalking him. He’s with a young girl – his sister, I assume. They must belong to a family watching one of the other ball games going on. They scamper off to the playground, which is just a few yards away from the stands I’m sitting in. Well, my girls are playing on the playground, so why shouldn’t I sidle on over there, right? Right. So I climb down from the bleachers with baby in hand and casually (ha!) go stand at the edge of the playground. Yep, he’s definitely got Down syndrome. He and his sister are playing tag. I catch her eye and say, “Is that your brother?” “Yes,” she says. “Does he have Down syndrome?” I ask (heart pounding a little hard, as I realize this could come across as very rude and forward). She stammers a little. “Yes,” she says, and I catch a note of defensiveness in her voice. And why not? Who is this woman asking questions about her brother? “I have a little boy who has Down syndrome, too,” I tell her. “Yeah! His name’s Finn and he’s four!” one of my girls laughs, as if to say “Down syndrome, schmown schmyndrome! No big deal!” I was sorry that I had left Finn at home with Kevin. I asked her how old he was (he was busy running around) and she told me he was 8. So the same age as my twins (he looked quite a bit younger, not surprisingly). A minute later, he took off running. His sister chased after him, but he kept on going, and soon he disappeared onto the school grounds. Then there was their mom giving chase. I kept watching to make sure they caught up with him, and sure enough, several minutes later, here they came, Mom holding him by the hand. I smiled at her as she passed, hoping that my smile conveyed . . . something, I don’t know what. Just not that I was some jerk rubbernecking.
And I also kept thinking, “Eight years old, and he still bolts. Do they ever outgrow that?” It’s the very reason Finn was at home with Kevin – because he takes off, and I’m afraid I won’t be able to keep track of him at a ballgame when I have the baby to manage as well.
I wish I knew how to approach other parents of kids with Down syndrome. After all this time, I still don’t know how. But the urge to connect when these encounters arise is still strong for me.
Sometimes I wonder if Finn and I have ever been out and about and unknowingly been the object of some other mom’s desire to connect.
Down Syndrome Awareness: Some Final Thoughts
As Down Syndrome Awareness Month 2012 winds to a close, I wanted to share some final, sort of random thoughts – things that have been floating around in my mind that I had hoped to find the time to delve into more deeply during the month, but . . . alas.
For what it’s worth.
The same but different. The whole “More Alike Than Different” campaign has always sort of rubbed me the wrong way. Yes, it’s true that kids/people with Down syndrome are kids/people first, and because of that, they share universal human traits, both physical and emotional. However, kids with Down syndrome are different from their typical peers: the first thing most people notice is that they have a pretty distinctive, recognizable appearance; they sound different from their typical peers, they learn and retain information differently than their typical peers, and they often have health issues that are not as prevalent in the general population. To deny these fundamental differences, or even to play them down, I think does a disservice both to the general population and to the Down syndrome community. The tendency when advocating to focus on the positive, while completely understandable – none of us wants to feel like what we present might play into any expectant parent’s decision to terminate upon receiving a prenatal diagnosis of Ds, and we all want our kids to be accepted and treated with respect and compassion – I think misses the point of advocating in the first place. At least for me. My goal is not to get anyone to see Finn “as close to typical or normal as possible,” but rather, to acknowledge his differences and not be afraid of them. To embrace diversity, you first have to acknowledge and accept differences.
Difference is all around us. There is a little person who works at our local Target. My friend Robin mentioned her in her guest post here recently (and it’s interesting, because apparently, October is also Dwarfism Awareness Month). I happened to be at Target this past weekend (okay, I’m there, like, every other day it seems), and had Kevin and Annabelle with me. When we walked in, this little person, who is probably no more than four feet tall, was stopping everyone who came in to tell them about a Red Card promotion, and she stopped us as well. Later, Annabelle said to me, “Mommy, you know that lady who talked to us when we came in?” “Yes,” I said. “Did you notice?” Annabelle said. I braced myself for some blunt, uncensored reference to her small size from my 8-year old. “Notice what?” I asked. “Her name tag said ‘Mimi,’ so that’s her name. I like that name.” I was actually sort of dumbfounded. That’s what Annabelle noticed – her name. Or at least that’s what was most notable in Annabelle’s mind. And I thought to myself, “Cool. Very, very cool.”
No, they’re not always happy. Or sweet. Or loving. I’m not exactly sure where this particular stereotype came from. Perhaps as they grow older and their intellectual impairments become more manifest, they seem – and perhaps actually are – relatively unfettered by the typical frustrations and stress factors that most of us who don’t have developmental disabilities experience; I really can’t say. What I can say is that (a) the stereotype, even though “positive,” reduces people with Down syndrome to one-dimensional, cookie-cutter caricatures rather than real people, and (b) speaking purely from my own perspective, Finn is most definitely not any more happy, loving, or sweet than any of my other kids have been. He experiences and expresses fear, and anger, and frustration, and sadness. He can be stubborn, obstinate, and yes, even bratty and obnoxious. Our biggest challenge with him at this point is tantrums; he’s been in a very tantrumy phase for several months now. When he is frustrated or doesn’t get his way or, really, is displeased in any way, he responds by screaming and yelling repeatedly at the top of his lungs. I have no doubt that this behavior has very much to do with his limited language skills; although he is making great strides in attaining more and more expressive language, it’s still not his go-to mode of communication, especially when he’s upset. Instead, he acts out and responds emotionally and viscerally, and I’ll be honest – it’s taxing.
I don’t care how smart your kid is. I’m tired of all the emphasis on intelligence and achievement. Competitive parenting is everywhere, even in the Down syndrome community. It’s great to be proud of your child’s accomplishments, but I think that too many parents, whether they are conscious of it or not, see their kids’ achievements as proof that they are at the top of the Parenting Game, or that by rising above so-called mediocrity, they are elevated to some upper echelon of parenting, and their kids to some upper echelon of kids. So much of intelligence and ability and aptitude is pre-determined by genetics and is out of our hands; we can and should provide our kids with opportunities, and we can and should challenge them, but not every kid is gifted, and you can’t make a kid into a genius – not with all the flashcards and tutoring and enrichment activities in the world – and smart and accomplished don’t equal success and happiness, anyway. Especially within the Down syndrome parenting community, I hate seeing this, the focus on smarts and achievement. I get that we’re trying to overcome old ideas about Down syndrome, but isn’t one of the big, beautiful epiphanies we’re all supposed to have is that everyone is valuable no matter how intelligent or talented they may or may not be?
Inclusion is ideal, and yet . . . It’s hard to achieve. I’ve seen most of the strides Finn has made over the four years of his life thus far come mostly through inclusion in regular family activities (his siblings treat him no differently than they treat each other, and this has served him very well), and now, preschool. The preschool he attends two days a week (I wish it were three days a week, but it isn’t cheap!) is awesome. It’s a “lab school” at our local community college, which means that it serves both as a preschool for young children, and a classroom for college students taking Child Development classes. It is a “typical” preschool that is committed to diversity and inclusion, and this makes me happy for two reasons: (1) because they welcome Finn, and (2) because the college students who are exposed to Finn and other kids with differences will benefit from that exposure. Finn is learning all kinds of wonderful things just by virtue of being included with typically developing peers. However, it only works because the powers that be are willing to make it work; they’re willing to see Finn as a whole person and not just a set of deficiencies; they’re willing to make accommodations for him (for instance, allowing him to come to school in Pull-Ups even though, officially, kids are supposed to be potty-trained to attend). Inclusion is an ideal that I believe is worth striving for, but it’s certainly not a given. It only works when all parties are willing and when appropriate accommodations are made, and unfortunately, this isn’t always possible, or in any event, it’s certainly not often the reality. And although I love Finn’s preschool and am grateful beyond words that the opportunity to enroll him there basically fell into our laps, I’m already stressing out about next year, and about kindergarten. I don’t think we’ll enroll him in kindergarten before he’s six, which means another year of preschool after this year, but in all honesty, I think he’s going to need something more than what his present preschool has to offer in order to get him ready for kindergarten. And I’m afraid that any other typical preschool that is a little more academically geared than his present preschool isn’t going to welcome him the way his present preschool has, and I know that we’re going to have a major battle on our hands to get him enrolled in typical kindergarten at our neighborhood public school in a couple years.
“Retard” is going the way of “idiot.” As much as I despise Ann Coulter and the garbage that issues forth from her, she’s right about something: “idiot,” “moron,” and “imbecile” were all, once upon a time, terms used to describe, in clinical terms, people with developmental disabilities. It’s been so long, at least in western society, however, since those words were used in clinical terminology, that they’ve become pretty far-removed from their original definitions. Such is the evolution of words. As a result, most people use them freely now and think nothing of it; they’re not considered slurs by a long shot, even by parents of kids with developmental disabilities, even though, like “retarded,” they all have their roots in the same exact place. Personally, I don’t like “idiot,” “moron,” or “imbecile” any more than I like “retard” for this very reason; it doesn’t feel right to me to disavow one while accepting the others, so I don’t use any of them, I don’t allow my kids to use any of them, and I cringe whenever I hear other people use them. But guess what – “retard” and “retarded” are headed in the same exact direction, thanks to Rosa’s Law. Although well-intended, it doesn’t serve to change people’s attitudes towards those with developmental disabilities – which is at the crux of disparaging language to begin with – it only serves to change the words. And so, because of this, in another few years, “retard” will be exactly the same in people’s minds as “idiot”: so far removed from its original meaning that saying it describes the developmentally disabled won’t even hold water anymore. So, I guess my point is just that I think about this a lot, and it kind of makes the fight against the R-word feel that much more hopeless. And that they’re all ugly words when you get right down to it, and there are dozens of alternative, handy words available to express what we want to express without making reference to entire classes of people who have been marginalized forever and a day. And also that I think the key is focusing on attitudes and perceptions.
And that pretty much wraps up Down Syndrome Awareness Month for me. In truth, though, every day is Down Syndrome Awareness Month in our house . . . and yet, at the same time, Down syndrome really isn’t very often center stage in our house. We advocate by including Finn as a whole, valuable person in our family, and by being open about what Down syndrome looks like in our family. And it’s gratifying to know that at least a few people’s perceptions have been changed because of this.
Tomorrow, hopefully, photos of Finn in his Halloween costume. Fingers crossed!
Down Syndrome Awareness: Guest Post by Robin
Robin is another good friend of mine whose has brought many a delicious, gourmet, homemade meal to my family in times of crisis. She surprised me by sending this to me yesterday and asking if I would post it here.
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Monsters under the bed. Bumps in the night. Ghosts and goblins. Are my children afraid of these? Not anymore. When they were younger, I would assuage them from their nightmares by saying that our dog would chase any scary creatures out of the house. I would then tell them to think about playing racecars with their friends, then hug them and tuck them in tight. So what are they afraid of? The little person at Target. Why, oh why, is that? They can’t explain it to me. They just hide behind me, and occasionally peek out and stare. Her stature can’t be scary since she’s smaller than I. And it’s not like she has tentacles or eight eyes or anything strange like that. The only thing I can reasonably assume is that she is different. I explain to them that there is nothing to be scared of, she’s just like us except smaller. It doesn’t seem to get through because it’s the same every time we go.
How do you make that fear go away? Yes, expose them to people with differences, interact, play together. Show them we are all the same, each with our own unique set of gifts and problems, whether they are visible or hidden deep inside. This approach works in the classroom with the boy in the wheelchair or on vacation with their developmentally delayed cousin.
Unfortunately, I don’t know any little people so I can’t set up a playdate. I’m hoping that over time they will get over their fear as we talk about things and people that are different than we are, so that when they see something or someone different, they are not fearful but accepting. I also let them know that asking questions is okay, since that is how we learn.
What do I want them to be afraid of? The caregiver that gives them a little too much attention. The friend that offers them an easy way to forget their problems. The boyfriend that just can’t live without her. The opponent on the field who will win at any cost.
I know we were supposed to write about how Down Syndrome affects us, but the kids seem to take that in stride. A question or two about the bagger at Ralphs, then we are on to the next thing. Like why we can’t have a quarter for the giant gumball machine or arguing over who can push the shopping cart into the parking lot. I just need to figure out how to make them behave in Target like they do in Ralphs.
A Thank You Letter to Ann Coulter
Dear Ann,
I know you’ve been getting hassled a lot lately for your use of “retarded” and “retard” in your political rants on Twitter. Everyone seems to have their panties all in a bunch over it. People are so sensitive!
Anyway, I’m actually writing to thank you – not only for using the words in the first place, but for using them repeatedly, and for refusing to apologize for it while looking America straight in the eyes. See, if you had just said it the one time, and then copped to how offensive it was and apologized for it like people were harassing you to do, the whole thing would have died a quick death. It wouldn’t have been anything more than a blip on the radar, soon forgotten. The way you handled it, though – refusing to apologize, using the same words again, and then defending your use of the words? Fucking brilliant. Because by doing so, you’ve actually done all of us in the disabilities community – people with disabilities themselves, parents of children with disabilities, and advocates – a giant favor. What you’ve done is lent your notoriety celebrity to our cause, putting it on a national stage. People all over the country are talking about it, whether left- or right-leaning. It’s all over Facebook, Twitter, blogs, and news sources big and small. The conversation we’ve been trying to have for so long about respect and compassion has expanded exponentially thanks to your mouth you.
It doesn’t even matter that you don’t agree with what we have to say; the point is that you have almost effortlessly raised awareness to a level it’s never reached before. Free advertising of a worthy cause on a huge scale! The vast majority of people finally get it – they get how words can hurt, demean, demoralize, marginalize, and oppress. And most people, once they become aware, don’t want to be vehicles of that kind of divisiveness and unkindness. So, seriously, it’s totally okay if you want to stick to your principles – that’s cool. You’ve managed to educate an entire population, though – that’s the main thing.
Thanks, Ann.
The Power of Words
Ann Coulter’s been at it again, and the online Down syndrome community is in an uproar again. The latest from Coulter:
There are so many things I could respond with – and as Finn’s mom, I feel a responsibility to: how “retard” is never appropriately used, how it’s always a demeaning slur; how hurtful it is to use language that puts down an entire class of people; how continuing to use such language makes one a bully. I could go on.
But Coulter knows these things. Of course she does, because she’s been called out before. And she doesn’t care. She makes her living at being as controversial as possible. She has built her image on being nasty, self-righteous, and offensive – all under the guise of being above it all. She thrives on attention, even – maybe especially – negative attention. If she’s taken to task on something offensive she’s said, like an obnoxious, bratty child, she just sticks her tongue out and repeats the offending words just to prove that she can.
It makes me tired, and I can’t bring myself to jump into the fray, the call to arms to bring her down. It’s futile. She won’t stop, she just won’t. Neither will she take it back or apologize. She gets off on this shit way too much. She is quoted as having once said, “I’m a Christian first and a mean-spirited, bigoted conservative second, and don’t you ever forget it.” If you tell her she’s being hurtful, well, it’s “Mission Accomplished” to her. And sadly, wherever she goes, it’s likely that she’ll find an audience. It seems to me, therefore, that the best thing to do is to ignore her.
I can’t advocate on such a large scale. I’m one person, a humble mom of a kid with Down syndrome. Celebrities aren’t going to listen to me. But maybe you will.
Of all the aspects of advocating for people with Down syndrome, trying to educate people about the R-word and how it affects those of us in the disabilities community is maybe the most disheartening. You can tell people it’s a hurtful choice of words, you can explain why it is, and there always seem to be those folks who invoke Freedom of Speech, or the silliness of insisting on political correctness. They’ll argue the point with you, they’ll say they “didn’t mean anything by it,” or they “didn’t mean it like that.” You can tell them that, just like there is no appropriate way to use the word “nigger,” there is also no appropriate way to use the word “retard,” and that using it – especially after they’ve been educated about its implications – is making a conscious choice to demonstrate utter disregard for certain fellow human beings. You can tell them that using words like “retarded” and “retard” to describe people or things they find sub par is actually pretty uncreative on their part, given that there are dozens of other words to choose from in the modern lexicon that express what they want to express without degrading an entire sector of society. You can tell them that using such language actually reflects their own ignorance – the very thing they’re using such words to decry. You can tell them that being mean is unChristian.
Doesn’t matter. It all often falls on deaf ears. I’m not really sure what’s at the heart of it. Selfishness? Are people that afraid of feeling like they’re giving up a right that it trumps being a kind and compassionate human being? It’s hard to believe that people actually want to be thought of as mean (except, obviously, Ann Coulter). Do they? Or is it a form of “talking big,” trying to be cool, a big shot? Whatever it is, it’s discouraging, to say the least.
Most of my friends have become conscious of the R-word, and many have pledged to stop using it. Some of them even go out of their way to call it to other people’s attention, and for that I’m grateful. Some still let it slip sometimes, though, right in front of me. Sometimes I say something, and sometimes I don’t. Even when I don’t, though, I notice. Oh yes, I notice. If I don’t say anything, you should know it’s because I value our relationship and want to give you the benefit of the doubt – I want to believe that you caught yourself saying it and are inwardly at least a little horrified. Or, I just can’t stomach a confrontation in which you might become defensive and invoke all the tired old excuses and explanations I’ve heard a thousand times before. Maybe when I hear you let it slip, I’m momentarily overcome by a feeling of defeat.
I’m not asking for the moon, for crap’s sake. I’m asking people to think before they speak. As fellow members of the human race, shouldn’t we all have a policy of “first, do no harm”? While we all value our freedoms, do we interpret “freedom” to mean “free-for-all”? Don’t we believe, instead, as a civilized society, that freedoms come with responsibility – responsibility to be humane and compassionate?
Listen: I know Ann Coulter isn’t going to stop her vitriol. But maybe next time she spews ugliness, just a few more people will see it for what it is: begging for attention at the cost of other people’s feelings – at other people’s right to be treated with dignity and respect.
Life As I Know It 