Tag Archives: advocacy

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.

Blog Hop – The Influence of Disability Within My World: What It’s Like

A little over three years ago, my sixth baby was born into loving hands, a planned home birth.  I had, of course, spent the previous nine months imagining what this newest member of our family was going to be like, and dreaming the dreams for him that mothers tend to dream for their babies.  Within the first day after his birth, it became clear that something was wrong, and after a frantic drive to the ER, our tiny newborn was admitted to the NICU where he would undergo major surgery at a day and a half old to correct the intestinal atresia he was born with.  It was while Finn was in the NICU that we learned that he has Down syndrome.

Suddenly it felt as if all the dreams I had dreamed for him were shattered.  I was afraid and angry – what did this mean?  What would it mean for our family?  What did I do to deserve this?  How bad was it going to be?  I was overcome by a grief so deep, it shook me to my core.  There wasn’t a moment I didn’t love my new baby, and I found myself feeling a fierce protectiveness over him – but I felt lost and completely ill-equipped to be one of those mothers – a mother of a child with special needs.  I was just a regular person, often frazzled and short on patience with my “typical” kids – certainly not thespecial kind of parent that everyone was suddenly assuring me I must be to have been given this special child.

I’ve traveled quite a long way since those early months of grief and fear and sorrow.  Finn has grown into a mischievous toddler who continues to surprise me all the time.  I’ve watched my other kids grow around Finn into sensitive, compassionate children who are accepting of people with all kinds of differences, from all walks of life.

As for me, I’ve made my peace with my son having Down syndrome, with his beingdifferent. I adore every inch of him, his body, his heart, and his mind, and I wouldn’t change him if I could.

It’s changed me, having Finn. Although I am not a believer in some grand, divine plan, I do believe that being Finn’s mother has enlightened me in ways I never really thought about before.  There has been a great deal of introspection, reflection, and reevaluation of what it is I value. What constitutes a happy, full life? Are happiness and success naturally borne out of intelligence and ability to achieve? What are the criteria for a life worth living?

I have a sense of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind; it’s made my heart more tender towards those who are different, and harder towards those who are cruel or callous or rejecting of those who are different. It’s made me more aware that we all have our trials, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.

Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold.  Life doesn’t offer guarantees to anyone.  I don’t know what Finn will be capable of, but I have very high hopes for him.  Those dreams I had for him that were shattered? They weren’t really shattered at all. It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.

What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a sad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we’re pretty much like any other family. This is just life; it’s rich and full, and it’s pretty great.

– Reposted from October 2011

 

To see what other bloggers have to say about this topic, click here.

Defending His Life

Everyone, it seems, has heard about the recent case in which an Oregon Couple Has Been Awarded $2.9 Million For the “Wrongful Birth” Of Their Daughter.  Articles, blog posts, online message boards, and Facebook have all been rife with emotional responses to the verdict.  As for me, I’ve been trying to digest the whole thing and figure out what I, as the parent of a child with Down syndrome, could possibly add to the conversation taking place regarding this case, which comes right on the heels of the new and improved prenatal screenings which specifically target Down syndrome, and the firestorm surrounding those.

Pragmatically, I know that the jury’s verdict (which was reached 12-0) in the Levy case does not necessarily mean that the jurors believe that the Levys’ daughter never should have been born.  The lawsuit was brought against Legacy Health for several counts of negligence – basically, the Levys assert that the chorionic villus sampling (CVS) that Deborah Levy underwent at 13 weeks into her pregnancy was carried out improperly – that maternal tissue was taken instead of fetal tissue – and therefore, an inaccurate result came of the test, robbing the Levys the opportunity they had sought to be prepared.  And yes, they do say that had they been given the correct result – that the fetus she was carrying did in fact have Down syndrome – they would have terminated the pregnancy, as the vast majority of people seem to do in the face of a prenatal diagnosis of Down syndrome.

Basically, after all the evidence and testimony was laid out, the jurors agreed unanimously that Legacy Health had been negligent and had carried out the test improperly, therefore depriving the Levys of the opportunity to make a decision about the pregnancy.

Sigh.

I can’t find it in me to vilify the jury – although I do absolutely have to question what kind of fucked up world we live in where people can sue for the wrongful birth of a child.  The jury apparently did its job, however: they listened to the testimony and they looked at the evidence, and they came to a conclusion – and like I said, their conclusion does not necessarily mean that they agree that the Levys’ daughter should not exist today; it just means that they agreed that the lab that carried out the test carried it out improperly.

I’d like to be able to say that I can’t find it in me to vilify the Levys, either, but I’m having a tough time with that.  They have been insistent that they would have aborted the pregnancy had they known that their baby had Down syndrome.  And yet, they also claim to “deeply love” Kalanit, who is now four years old.  Actually, I sort of get the “I would have aborted had I known” line of thinking.  I’m sure there are many parents of children with Down syndrome who, for whatever reason, didn’t find out about their child’s diagnosis until after birth who might say, “Had I known beforehand, I would have terminated,” but that’s almost always followed up with, “But, goodness, am I ever glad I didn’t!  I can’t imagine life without him/her.”  I wonder if the Levys have ever said that – that they’re glad they didn’t abort.  I kind of doubt it; saying that would have hurt their lawsuit.

It seems to me that they have had to hold onto an awful lot of anger and bitterness to pursue such a lawsuit.

I’m still not sure how the multi-million dollar verdict can be reconciled.  Apparently, it’s intended to cover “the estimated extra lifetime costs of caring for a child with Down syndrome” to wit:

Miller [the Levys’ attorney] said they sued because they worried about providing all that their daughter would need over her lifetime. Experts testified that she will continue to need speech and physical therapy and face a concerning list of possible medical problems over her lifetime. Professionals have told the Levys that she will likely never be able to live independently, or earn a living.

So the dollar amount was based on expert testimony (originally, the Levys had sought $7 million).  Who are these “experts” and “professionals”?  Are they the same experts and professionals who paint such a bleak (and outdated!) picture of life with Down syndrome that most parents facing a prenatal diagnosis decide to abort?

First off, speech and physical therapy are paid for by the State.  Apparently, the state of Oregon is actually one of the better places to live in the US if one has disabilities and requires services.  And the “possible medical problems”?  Don’t all of our kids – Down syndrome or not – face a multitude of “possible medical problems” over the course of their lives?  Yes, Down syndrome puts one at higher risk for certain health issues, but risk isn’t guarantee, and my understanding is that the Levys’ little girl is healthy.  And “likely never be able to live independently, or earn a living”?  I mean, gosh.  Can we project anymore of a grim or speculative future for this little girl?

I think what bothers me the most about this whole thing is that this case just bolsters the apparent world view that people like my son, Finn, are burdens, errors, mistakes.  It not only undoes all the advocacy I and so many other parents have worked so hard to undertake, it paves the way for lots more lawsuits just like this.  (And if the Levys so deeply love their daughter, as they say they do, one would think that they, too, would at some point advocate for her, for her worth, her value to her family and to the community.  But how can they now that they’ve fought and won a lawsuit that renders her life a mistake?)

I was looking through old photos of my kids over the weekend, reminiscing as mothers do, and it hit me: Finn is the only one of my kids whose very existence I’ve had to justify – ever since the first person asked me after he was born, “Didn’t you have the testing?” like an accusation.  This could have been prevented, you know.  On some level, I’ve been defending his life since he was born, and I suspect I will have to keep on defending his life for the rest of his (or my) life.  And why?  Because he’s a little different.  Because he’s a little slower.  Because he needs some extra help.

These are people we’re talking about!  Human beings!  Not defective merchandise.  Not a dress that ended up not fitting when we got it home.  They are people.  People we created.

Sometimes it all just feels like a losing battle, the energy and tears and passion I expend to make the world see Finn and people like him as worthy and valuable.  What kind of world are we living in?

Thank you, Ariel and Deborah Levy.

Let’s Take God Out of the Equation. Please.

I started the guest post I wrote for A Perfect Lily last week, It’s About Wanting a Baby, with this line:

“It’s not about God, or what the Bible says . . . because not all of us believe in God or are swayed by the Bible.”

I wrote that because I have noticed that so many important social issues are discussed within the framework of faith and religious belief, and I really believe that in so doing, huge sectors of potential audience are alienated.

We need to take this discussion about prenatal screening, about termination of pregnancies, about the sanctity of human life, out of the arena of Christianity.  The fact of the matter is that not everyone is Christian, and basing arguments about such important issues in Christian beliefs shuts out and turns off anyone who doesn’t share those Christian beliefs.

You may believe that by invoking God and the bible into your arguments, you’re being a good Christian, you’re being true to your beliefs, you’re scoring points with the Big Guy and earning your place in Heaven – but I can tell you as someone from the other side of Christian belief that it’s just not the way to win friends and influence people.  At least not the people you really want to influence: those who are on the other side of a very polarized debate.  Sure, your like-minded Christian friends may appreciate your arguments, but they don’t need convincing, do they?  That’s just the choir you’re preaching to.

Now, it just so happens that as the mother of a little boy who has Down syndrome, I’m appalled and even somewhat personally pained over the reasons people tend to abort if they find out they’re carrying a fetus with Down syndrome.  It hurts, because collaterally, it’s a statement about how my son is viewed: as a mistake, as someone most other people wouldn’t want, as someone most people think shouldn’t have been born.  I believe that the reasons behind the majority of the abortions based on a prenatal diagnosis of Down syndrome are misinformed and misguided, and I’m completely in favor of educating people about the realities of Down syndrome in an effort to decrease the termination rate and in an effort to allow Finn to grow up in a world that values him instead of pitying him or marginalizing him.

But it has nothing to do with God.  And when people try to encourage acceptance of Down syndrome by saying things like “They’re God’s perfect angels,” or “God made them exactly how they’re supposed to be,” or “God doesn’t make mistakes,” or “They’re God’s gifts, sent here to teach us blah blah blah,” or “ABORTION IS MURDER!  ABORTION IS A SIN!  ABORTION LEAVES GOD BROKENHEARTED,” well, I just want to scream.  Because those statements don’t resonate with me, and I’m sure they don’t resonate with a whole slew of other folks, either – many of whom are the very people who we’d like to see Down syndrome in a new light.  Possibly people who are grappling with a brand new diagnosis of Down syndrome and wondering what the heck to do.  Throwing God at them isn’t going to help.

Framing the discussion in human terms based in fact – that’s what helps.

We are a society of diversity – diverse ethnicities, diverse cultures, diverse socio-economic positions, diverse philosophies, and diverse beliefs.  Not everybody is a Christian.  I know it hurts to hear that, but it’s true.  And the truth is, in order to unify discussions, God has to be taken out of the equation.

Not Taking It Back

Apparently, a few people who got their hands on my post from the other day, Better Off Dead, took it completely at face value and didn’t understand that I was using sarcasm and dark humor to get a point across.  As of this writing, that post has been viewed 964 times; it’s been linked to and shared on Facebook, which I think is super cool, because my intention was to make an impact.  I guess my oversight was in assuming that everyone who read it would get it (and the vast majority do appear to have gotten it, thank goodness).  I thought the juxtaposition of the photos, plainly showing how much Finn is valued by our family, with the stinging words I wrote would get across a certain point: that I am outraged and appalled that new prenatal tests are being developed and savvily marketed in order to boost the bottom line for the companies that develop and manufacture them – and at what cost?  The cost of humanity.  The cost of human life.

I tried to make this point by speaking from a point of view that I assume those companies would have me speak: I should have undergone prenatal screening; my son was a mistake; this all could have been avoided.  Isn’t that what these companies, and even the medical community who urge their pregnant patients to undergo these tests, want us to think?  Or do you think they’re acting out of some sense of compassion – that they just want to offer families a chance to be prepared, and to that end, they have every intention of providing accurate, well-rounded, up-to-date information about what it actually means to have Down syndrome?

I thought that by writing an outrageous post, people would get how outrageous the whole thing is, and how appalled we should all be at the way financial gain now trumps humanity.

I’ve written before about prenatal screenings, and abortion, and my feelings on those issues: I’m not against prenatal screenings per se, just the apparent intent behind them and the way they are generally handled.  I remain staunchly pro-choice, but I don’t believe a real choice is being made if full, accurate information isn’t being provided.  Time and time again I’ve read that somewhere in the neighborhood of 90% of prenatally diagnosed cases of Down syndrome end in termination of the pregnancy.  What does that mean?  It means that women and families are still being fed ugly, worst-case scenario, outdated information about Down syndrome.  That’s not providing an opportunity for real choice.

In hindsight, I can sort of see how if that post was the first and only glimpse someone got of me and my blog, it might not sit well with them.  I sort of get that.  I’m still taken aback that just a little bit deeper of a look wouldn’t reveal it for what it was.  And if you take even a short little trip around my blog, you can see that I am sarcastic.  I’m not your garden-variety Down syndrome blogger; I’m atheist, I use swear words, I use sarcasm, I rant, and I generally get my hands dirty.  Sometimes I talk about things that make some people uncomfortable.  I make no apologies.  Underneath it all, my son means everything to me, just as all of my children do.  And I will continue to fight tirelessly to have his place in the world respected.

Why Neither Kelle Hampton Nor Noah’s Dad Inspire Me

I’ve been thinking lately about the Big Bloggers and how they’ve managed to build such phenomenal fandoms.

Some people really work at promoting themselves.  Take Noah’s Dad, for instance.  It’s no secret that his biggest talent is self-promotion.  He’s tirelessly spammed and pushed and shoved his way to Big Blogger status.  He’s also stepped on a lot of people along the way, leaving a lot of people pissed off and creating a reputation for himself as a sleazy whore of the blogosphere.

Other Big Bloggers seem to have it all fall effortlessly into their laps.  Kelle Hampton is one that comes to mind.  She wrote a birth story and became the It Girl of the blogging community (not just the Down syndrome blogging community) virtually overnight.  Since then, her already privileged life appears to have become even more privileged, with speaking engagements and interviews and even a book deal with a major publisher falling into her lap, and (almost) everyone wanting her magic fairy dust to rub off on them.

It seems like the Big Bloggers all have a gimmick, an angle, that makes them stand out from the crowd.  Rick Smith has his daily one-minute videos, and Kelle Hampton has her photography.  I seriously wonder if either of their writing would stand on its own without the gimmicks.

I’m not inspired by either one of them, frankly.  My distaste for Rick Smith is pretty simple: he’s kind of a snake.  And what makes him worse than your everyday garden variety snake is that he portrays himself as this hardcore Christian, but his methods sure don’t back that up.

My feelings about Kelle Hampton are a little more complicated.  She’s not blatantly smarmy and offensive like Rick Smith.  I just feel like she’s a lot of glitz and not a lot of substance.  It seems that she is gradually becoming more willing to talk about Down syndrome, but I don’t feel that she really imparts any wisdom that the vast majority of we parents of children with Ds don’t come by all on our own eventually (and many of us actually have before she ever did).  Sometimes there are hints that she’s becoming a little more willing to step out of her comfort zone and be, well, real.  I wish she would open up more.  I wish she would talk about who inspires her, instead of standing alone on the pedestal that’s been constructed for her, as if she’s figured it all out without the help and encouragement of those who went before her.  I’m not inspired by pretty, because pretty isn’t earned.  I’m not inspired by privileged lives, because it’s not something I can relate to, it’s not something I think most people can relate to, and it’s a shallow foundation upon which to stand as a role model.  Kelle has raised a whole lot of money for NDSS, there’s no doubt about that (where that money actually goes, what exactly it’s spent on, dollar for dollar, is something of a mystery, but let’s assume it’s all well spent in ways every person touched by Down syndrome would be in favor of), and she’s managed to paint a prettier picture of Down syndrome than probably anyone else has ever managed to do on a large scale.  Those are the biggest contributions she’s made to the Down syndrome community – and they are big things. But how has she actually inspired anyone beyond how to take fabulous photographs and throw fabulous parties and to always look one’s best, at least on camera?

What bothers me about these two Big Bloggers who seem to stand at the top of the heap of all the rest of us bloggers is that someone decided that they speak for all of us, that what they portray is what all the rest of us should be aspiring to – and they’ve gone along with it.  And I think that if someone is going to enjoy that kind of status, they have a responsibility to be real advocates.  To actually inspire people in meaningful ways.

What inspires me?  People who are real.  People who are honest about their struggles. People who face down real adversity and overcome.  People who humbly give credit where credit is due.  People who admit that they don’t have it all figured out.  People who talk about not only the ups, but the downs, too.  People who aren’t afraid to stumble, and acknowledge it.

So, what inspires you?

The Right To Be Heard

My friend CJ touched on this in her I Have a Voice, You Have a Choice post this morning, and it’s actually something that’s been on my mind, so I’m going to share my thoughts.  It sort of stems from my recent post about Noah’s Dad and the hoopla it generated both here and on Facebook – but it’s really bigger than this.

Speaking up for something one believes in is not something that should be squashed or stepped on by anybody.  Advocacy often involves being a dissenting voice among the masses.  It sometimes means going out on a limb and voicing something important but unpopular.

Does this take guts?  I don’t know.  I guess in some situations I would say so – like when my teenage son speaks out to his peers about using the R-word.  That takes guts, because being an adolescent among other adolescents who view conformity to the masses and popularity as paramount, it takes someone with a strong sense of himself and his own principles to stand out against the crowd.  Did I feel gutsy when I wrote that post about Rick Smith the other day?  Not really.  I’m just speaking out about something important to me (and apparently to a whole lot of other people), and maybe at my age I don’t care as much what people think of me as I do the issues.  I knew full well there would be dissenting comments, and I’m totally fine with that.  I don’t need to have everyone agree with me, and I’m not trying to win any popularity contests; just being true to myself.

What bothers me is that nobody who spoke out against my post really had anything significant to say about the substance of what I wrote.  None of them denied or were able to explain or justify the particulars of what I wrote about how Noah’s Dad has conducted himself (and for the record, it was never about silencing Rick’s voice; it’s about his stepping on people left and right and inundating scores of people with the Self-Promotion Machine that is Rick Smith).  Instead it seemed to be more about a few people feeling that what I had to say wasn’t worth saying – or hearing.   I just find it interesting that there always seem to be people ready to jump into the mix only to say that the discussion itself is ridiculous, silly, wrong, or a waste of time.

What a wonderful world it would be if everyone agreed on everything and life was all sunshine and peace and love.  But it’s not. And some people find controversy and confrontation so distasteful that they run from it as fast as they can – and that’s fine.  Other people say they don’t like the controversy and the stirring of the pot, and yet, there they are right in the thick of it, waving their arms saying “This is a stupid conversation!  It’s a waste of time!”  To those people I ask: why are you here in the midst of it then?

Agree or disagree – doesn’t matter.  The main thing is that the discussion is worth having.  When you speak out, you often find that you are voicing the feelings of many, and there is value in that.

Apparently a lot of people care about what Rick Smith has done over the last year or so, and it appears that speaking out about it and opening up discussions about it has had an impact.  Someone appears to be listening.

I Live With Peter Pan: A Look At Some of the Deeper Issues

I remember very well struggling with what to tell our other kids about Finn.  I wrote about it here.  I remember not wanting to scare them, and not wanting to portray Down syndrome in a way that would make Finn seem like less than to his siblings.  It was somewhat of a challenge – at least anticipating the conversation – because Michael and I really knew so little about Down syndrome ourselves at the time.  In the end, we were just very matter-of-fact with the kids.  That tends to be the way we handle most topics with our kids – no beating around the bush, no sugar-coating.  Of course we are always mindful of what’s age-appropriate, but I’m not a fan of turning the facts of life into fairy tales for my kids.  It’s about respecting them as developing, autonomous human beings: trust that they can handle things provided we the parents have equipped them with age appropriate coping skills and wisdom.  Sheltering them by making up stories does nobody any favors in the end.

Another thing to consider is that kids will almost always follow the cues of the adults in their lives.  If the adults present issues matter-of-factly with appropriate optimism and/or gravity, the kids will usually follow suit.  We have found that to be true over and over with our kids with issues ranging from Down syndrome, to death, to how babies are made, to Daddy having cancer.  The kids are generally not going to freak out if the parents aren’t freaking out.

And so, it is difficult for me to understand Missy Vaughn’s desire to frame her son’s Down syndrome in terms of a caricature, or fairy tale character.  But certainly, to each his own.  It’s not up to me to tell her or anyone how to parent their children.  However, she seems intent on promoting her book as a tool for everyone to discuss Down syndrome – parents and other family members, educators, librarians, and so forth.  Her supporters are suggesting (on Amazon) that it’s a wonderful book for children and adults alike.

In addition to remembering what it was like to talk about Down syndrome with our other kids in those early days and weeks, I also remember my own fears and misconceptions as a new parent to a child with Down syndrome, having had virtually no prior exposure to, and therefore virtually no real knowledge of, Down syndrome.  One of the biggest, and I believe most widespread fears among new parents of a child with Down syndrome is that the child is going to remain forever childlike and utterly dependent (Ms. Vaughn said herself in an early blog post:

“One of my thoughts I had said was that I don’t want to change a 40 year old’s diapers.  I Don’t want to have a kid the rest of my life.”

So it’s interesting that she went on to write and publish a book that glorifies that very notion: that kids with Down syndrome remain childlike forever (or at least want to, which the author has repeatedly said in defense of her book; I’m scratching my head, wondering how she knows that kids with Ds don’t want to grow up). I won’t guess at the psychological process that went into her coming to this conclusion, but I will say that as a new parent, if this book had landed in my hands, I would have cried my eyes out.  It would not have comforted me or encouraged me – it would have confirmed exactly what I was most afraid of: that my kid was never going to grow up.  So I think for this reason alone, Ms. Vaughn is sorely misguided in thinking that her book will be helpful to new parents.

She also emphasizes, as do her supporters (and it should be noted that the vast majority of people she has recruited to post glowing reviews of her book on Amazon are close to her personally but do not themselves have any direct connection to Down syndrome beyond her), that her book is intended for young children.  As I said in the comments section of my last post, my (as well as many others’) feeling is that young children comprise the very worst possible audience for this book and its message.  Young children are extremely impressionable, and having Down syndrome equated with Peter Pan will only sow the seeds for their acceptance of misconceptions and stereotypes.  Children, even very young children, deserve facts, not fairy tales.  Furthermore, insisting that the book is intended for young children completely ignores the fact that it will be adults reading the book to those young children; thus, adults are asked to accept and embrace the book’s message as well.

It saddens me that the author seems unwilling to take a step back and look at this from a broader perspective.  If her true intention is to be an instrument that benefits the Down syndrome community, then she would better serve everyone by setting aside her own personal feelings and really listening to what people are saying about her book.  Nobody is setting out to be mean to her or to squelch her dream of being an author; our concerns are genuine, heartfelt, and valid.  To call oneself an advocate and then wilfully brush off members of the very audience one is targeting who are saying “Hey, your message hurts.  Can you reconsider it, please?” is not true advocacy.  It seems that Ms. Vaughn has lost sight of her original goal and is now only tenaciously holding onto her position at any cost.

My Kid Isn’t (Like) Peter Pan

A while back I posted this review of Missy Vaughn’s I Live With Peter Pan, a self-published book aimed at explaining Down syndrome to young children.  As I stated in my review, I didn’t care for the book, as I feel that, however well-intentioned it might be, it paints an unfair picture of Down syndrome and does a disservice to those touched by Down syndrome.

Normally, I read a book, post a review and that’s that.  There are good books out there and not-so-good books.  Sometimes, however, a book keeps drawing me back.  The Shape of the Eye was like that; it’s so full of good information and skillful writing that I really wanted to promote it.

I Live With Peter Pan keeps drawing me back, too, but not in a positive way.  It’s more than the fact that I feel that the premise of the book promulgates an offensive stereotype – it’s the fact that the author has undertaken a zealous campaign to promote her book as a learning tool, with hopes and efforts being made to get as many copies of the book as possible into the hands of families of children with Down syndrome, as well as schools.

Though I did have a brief interaction with the author after I posted my review a few weeks ago (and not a very friendly one), my goal is not to launch personal attacks on her.  I have no doubt that she loves her son and feels that she has undertaken a positive endeavor in writing, publishing, and marketing her book.  That said, I strongly object to equating children with Down syndrome to Peter Pan, who never grew up or never wanted to grow up.  I think her belief that this is a positive analogy is extremely misguided, and rather than being an instrument of advocacy, or even accurate teaching, it encourages misconceptions and sets ideas about Down syndrome back at least a couple of decades.

Let me be clear: Finn is no Peter Pan.  He’s a kid who may be different in some ways, but a kid nonetheless, and one whom I have no doubt will grow up and do things that will blow my socks off.  I don’t want him held back by this notion that he will always remain charmingly childlike.  I’m not kidding myself; I know that Finn will always have certain limitations, but who knows what those limitations might be?  So Michael and I and Finn’s brothers and sisters will continue to shoot for the stars when it comes to the possibilities of Finn’s life.

Because I feel so strongly about this, I am heartsick over the fact that Missy Vaughn, and some no doubt well-meaning friends and family of hers, want to put this book, I Live With Peter Pan, into the hands of families and schoolchildren – the vast majority of whom will likely have had no previous exposure to Down syndrome.  This is not what I want people to learn about Down syndrome.  This is not what I want people to learn about my son.

So I make an appeal here: if you object to children with Down syndrome being painted as caricatures, being boxed in by stereotypes, being equated to the likes of Peter Pan, then please speak up.  Talk about it, spread the word, and let the author know that however well-intended her message might be, it’s not one that the greater Down syndrome community wants to see promoted.