Archive | Relationships

An Open Letter to the Woman in the Pink Shirt at the Craft Store

Dear Woman in the Pink Shirt at the Craft Store,

Forgive me, but I don’t know your name.  I don’t know anything about you, in fact, except that you and I happened to be in the same Michael’s store at the same time today, that you witnessed me speak sharply to my twelve-year-old daughter, and that you felt compelled to pull up behind me in the parking lot while I was buckling my four-year-old in, roll your window down, and tell me what a shit mother I am.

You don’t know me, either.  And that’s the thing: you don’t know a thing about me.  You don’t know what I’m dealing with, what preceded my admonishing my daughter, what my relationship with my kids is, what our family dynamics are, what sort of kid my daughter is, what kind of behavior challenges we may deal with, what kind of support we may or may not have – nothing.  You don’t know how many times I’ve asked her to stop doing certain things (like find her amusement in antagonizing her little sister, which is exactly what she did in the store by scaring her with a fake spider – you must have heard the blood-curdling screams coming from my four-year-old while you were lurking a few yards away in the store), and why it sometimes comes down to me raising my voice to her.

Let’s be clear, Woman in Pink: I didn’t scream at her, I didn’t curse at her, I didn’t threaten her, I didn’t call her names.  I heatedly told her again to stop antagonizing her little sister.  And she argued the point with me.  My mistake was probably in engaging in the argument with her.  Have your kids never pissed you off?  Utterly frustrated you?  Have you never yelled at your kids?  Or maybe just not in public?  I think there are a lot of people who yell at their kids in private and then just pretend that they never yell at their kids because it gives them a false sense of superiority.  Is that you?  Or maybe you don’t even have kids.  Which would mean you really have no idea.

I would like to know, Woman in Pink, when yelling at one’s kids became taboo.  I don’t hit my kids, I don’t berate or insult or demean them.  For the most part, I champion them.  But sometimes kids act like obnoxious little buttholes, and parents lose their patience with that nonsense.  But we seem to exist in a culture nowadays in which any attempt to keep one’s kids in line, any words spoken to them in anything other than a soft, gentle voice is viewed as bad parenting.  As if there is one, right way to raise kids.  And so continues the perpetuation of unrealistic parenting (mainly mothering) standards and judgment passed out like Halloween candy.  I’m sorry I didn’t live up to your standards, Woman in Pink.  I fear I never will.

Listen, Woman in Pink: I was the product of abusive parenting.  And I can tell you as sure as I’m sitting here that it wasn’t the yelling that damaged me.  It was the smacking and beating, the belittling, the mocking, the name-calling, and so much more.

Parenting is a hard enough undertaking without people like you, all full of self-righteous indignation, making snap judgments about complete strangers based on a brief snapshot.  And do you know what, Woman in Pink?  You pretty much ruined my day.  You shamed me and made me feel like shit.  Because of course I often harbor doubts about whether I’m a good mother.  Most mothers do.  I’m sure you do, too (assuming you are a mother).  So, kudos to you, Woman in Pink.  Mission accomplished.  You might like to know, though, that my twelve-year-old daughter is just fine.  She carried on with her day as full of laughter and mischief as usual.


Woman Who Yelled At Her Daughter



I watched President Obama’s farewell address last night, and it brought me to tears.  His eloquence, wisdom, grace, humility, and integrity run in sharp contrast to the man who spoke this morning, which brought me to tears for very different reasons.  This whole thing is unfathomable to me; it’s like we are living in some alternate reality.

Then I go on social media and see people expressing glee (I do not exaggerate) about Obama leaving office and Trump entering.  And this, too, is unfathomable to me.

This goes far beyond just having different political ideologies.  I can accept that not everyone is a liberal Democrat like I am.  What I cannot accept is anyone being able to dismiss or rationalize the repeated and continued obnoxious, vile behavior Trump engages in.  This is not a matter of politics or differences of opinion, it’s a matter of human decency, and it speaks volumes to me about a person’s own ethics and integrity if they can support a man who has done and said all the things that Donald Trump has done and said.

I cannot understand support for a man who has openly mocked a disabled person.  Do not tell me that’s not what he did, because it’s an insult to anyone with a shred of decency to claim that what he did was not mocking that disabled reporter.  I have a disabled son, and Trump’s derision for the disabled (he’s also openly called people “retarded”), given his platform, invites more derision for disabled people.  How can anyone be okay with this?

I cannot understand support for a man – especially by women! – who has so blatantly demeaned women.  He has a long history of objectifying and demeaning women, and of sexual assault.  And these are not just speculation or incidents open to interpretation – they are well documented and usually based upon actual recordings of Trump himself speaking.  I am a woman, and I have daughters.  How can anyone who is female, or who cares about a female, see past his egregious treatment of women?

I cannot understand support for a man who has insulted pretty much every racial minority group.  His openly racist views not only further marginalize minorities, they embolden prejudice in others.  This is not in any way unifying to our country – it’s divisive.

I cannot understand support for a man who is so dishonest and lacking in integrity.  He changes his story like most people change their underwear.  He has a well-documented history of cheating and defrauding people.  He lies, he denies.  He’s already broken numerous campaign promises – and he hasn’t even taken office yet.  How can anyone believe that a man like this is going to be good for America?

I cannot understand support for a man who is so utterly immature.  He seems to believe that it’s perfectly okay – even admirable – to criticize anyone in the world except him.  He cannot take criticism.  He has no filter and no self-control.  He takes to Twitter to defend himself and insult anyone with whom he has an ax to grind like a spoiled nine-year-old.  He refuses to be held accountable or to take responsibility for anything.  He throws blame hither and thither like confetti in the wind.  He has no humility.  He will bring no grace or class to the White House because he has none.

Franky, I cannot understand support by Christians of a man who speaks and behaves in a way that is so utterly counter to what Jesus apparently taught.  I am not a Christian, but supposedly Jesus was this upstanding man awash in humility and compassion, whose teachings were all about love and compassion.  So how do Christians square this with their support of Trump?  It is beyond me.

So, no – this is not just about different politics or different opinions.  It’s about basic decency.  It’s about how the person you support for the highest office in the land reflects your own feelings about your fellow human beings.

I have no respect at all for Trump supporters.  None.



Rolling Stones

Life’s been a whirlwind.  The biggest news is that we found a house way sooner than we had expected to – in Washington, actually, which is just on the other side of the Columbia River from where we are now.  We hadn’t planned on even looking in Washington (although a lot of people do live in Washington and work and/or shop in Oregon, as there is no state income tax in WA and no sales tax in OR), and we hadn’t planned on even seriously looking at all until after the first of the year.  We did, however, start checking out open houses just as a means of exploring different areas and getting an idea of what kind of housing and property is out there.  Well, one thing led to another, and we began to realize that real estate is even more affordable in WA than Oregon (or at least Portland and surrounding areas), so we looked at a few houses across the river just for kicks, and BAM!  There it was, the house I fell immediately in love with.  We saw a few more properties up there and here in Oregon, but I couldn’t stop thinking about that house.  So we went to look at it again, and after talking it over and weighing all the pros and cons, conferring with the kids (they love it!) and praying on it (ha!  just joshin’), we made an offer on it, and within two days we had a deal.  So we are now officially in the process of buying a beautiful house on a gorgeous acre of land (the sellers are throwing in their ride-on mower!) with blueberry bushes and apple trees in a lovely neighborhood, all for less than we sold our little three-bedroom tract house for twelve years ago.  If all goes smoothly, we should be moving sometime in February.

We definitely made the right move.  We love it up here in the Pacific Northwest.  My homesickness was pretty short-lived, although I do of course still miss my friends and feel pangs of nostalgia when I think about our life before our big move.  I am feeling more at home here, and am excited about moving into a permanent home, and looking forward to establishing ourselves in a new neighborhood.

We’ve had quite a bit of snow up here – apparently more than usual.  The kids love it and have spent many hours sledding down the street we live on, which is on a fairly steep hill.  The only thing that’s not fun is driving on icy roads – Oregon does not prepare for snow like places do where it snows more regularly, so when it snows here, traffic and driving become a nightmare.  We got stuck in gridlocked traffic in downtown Portland during a snowstorm last week for NINE hours, only to have the brakes on Michael’s car fail after we finally made our way out of the worst of the traffic.  We had to abandon his car in a parking lot and take Uber home, and we were not able to get his car towed until four days later because every tow company in the area was unavailable because hundreds of people had had to leave their cards stranded around the city.  It was awful, but honestly, I’m just grateful that we made it home safely.

Kevin came up for Thanksgiving, which was wonderful.  He’s flying up this Friday to spend Christmas with us, too.  He calls me almost every day, and he talks to his brothers and sisters almost every day, too.  When I come across text messages between him and them on the iPad and see Kevin ending his conversations with them with, “Love you!” my heart swells.  I’m thankful for the close relationships we have.

Life is good.


Well, it’s been a little over a year since Michael and I started talking about it, and now it’s really happening: we are moving to Oregon this week.  The movers are coming on Tuesday to load up all of our stuff, and we will hit the road on Wednesday, arriving in Portland next Saturday.

We talked about moving away from California several years ago, but it just seemed too daunting – and we had fewer kids then!  It turns out that it is an extremely daunting undertaking after all, and sometimes I can’t believe we’re doing it.  YOLO, and all that.

It’s been quite an emotional roller coaster. Sifting through over a decade worth of accumulated stuff, deciding what to part with and what to pack, has been physically and mentally exhausting.  Figuring out all the logistics of uprooting our big bad family, watching the kids struggle with their emotions, and saying goodbye to the people and places that we love and are so familiar has been so bittersweet.  Sometimes I have moments of panic when I think, “What the fuck are we doing?  Are we doing the right thing, uprooting everyone and leaving all of this behind?”  It’s exciting and scary as hell.

Kevin moved out a week ago.  For the time being, he is right up the street, and he’s been stopping by every day to hang out for a while, which has been so nice, and he texts me every day – sometimes we have these great texting conversations at night after he gets off work.  So I’m very grateful for that connection with him.  When we leave in a couple of days and end up 1,000 miles away from him, I think it will really hit me then, and I don’t guess it will be easy.  He is going to try to get some time off work and go up and spend Thanksgiving with us.

We signed a lease on a house outside of Portland, so we’ll be there until we decide where we want to settle permanently and buy a house.  I’m lusting after some space; it would be heavenly to have an acre or two – not out in the sticks, but I’m tired of being so close to my neighbors that I can hear them fart.

It’s surreal to walk through this house, with its rooms half empty and boxes stacked ten deep and halfway to the ceiling in the living room.  I’ve never lived anywhere as long as I’ve lived in this house, and it’s so full of memories.  When we moved into this house, Kevin had just turned 8, Joey was 2, the twins were 6 months old, and I thought this would be our forever home.  Three of my kids were born right here in the house, and all of them have spent all or most of their childhoods here, and one of them reached adulthood.  We lived through Michael having cancer in this house, lots of marital ups and downs, having a child with a disability, more birthdays and Christmases and Halloween costumes than I can count.  So much that has shaped us in ways we probably don’t even realize.

I’ll take my memories with me.

Here’s to new adventures.

Fade to Black

In the process of packing up the house in anticipation of our move, I’ve unearthed boxes that have been stowed in the

July 1, 1999 blurb in the local paper

July 1, 1999 blurb in the local paper

farthest, darkest corners of the garage.  Boxes that haven’t been opened in more than 17 years.  The boxes contained things that belonged to my first husband – who, as I’ve written before, died of a drug overdose in a stranger’s front yard in June, 1999.  A lot of photos, including his old school photos dating back to early grade school.  Collector coins his dad foisted on him every year for Christmas.  A video tape of his first (and only) skydive.  An old blanket.  Old cards.  Books from his childhood.  Old schoolwork.  His wallet, which was on his person when he died.  Belongings found in his truck after his death.  Our wedding rings.

I boxed this stuff up after he died, and wrote on the boxes: “KELLY’S STUFF – SAVE FOR KEVIN.”  Kevin was two when his dad died, and I believed that it was important to save mementos for Kevin because Kevin would want them someday.  I assumed he would long for some connection to the man who contributed half of his DNA.

The last photo ever taken of Kevin and Kelly.  May, 1999, about a month before he died.

The last photo ever taken of Kevin and Kelly. May, 1999, about a month before he died.

As it turns out, though, Kevin has no interest in any of this stuff.  He has no memories of his biological father, and he mostly feels contempt for him, knowing that he was a wife-beater, a liar, an unapologetic manipulator, alcoholic, and drug addict who couldn’t or wouldn’t get his shit together, even for his baby son.  It’s true that I’m responsible for Kevin’s perception of his father, but it’s all based on pure truth, and if I have any regrets about being brutally honest with Kevin about Kelly, those regrets have only to do with how it has possibly shaped Kevin’s self-perception, and not with anything I may owe to Kelly’s memory.  I didn’t set out to poison Kelly against his dead father, but I always answered his questions with total honesty, and by the time he was an adolescent, he had a pretty clear picture of what life was like for me and for us when Kelly was alive.

After all these years, I still carry around bitterness and pain and anger towards Kelly for everything he did.  I don’t dwell on it, but the hard kernel of it in my heart swells when memories come to the surface.  I struggle to dredge up any happy memories (though I have no doubt there were happy times; it’s just that what good there was was way overshadowed by the ugliness that went on for so many years).

So, I don’t want his old stuff.  Kevin doesn’t want it.  And it occurred to me today as I tossed most of it into our rented dumpster (with the exception of the coins and the books, which are going to Goodwill) that there really isn’t anyone left who cares about these old mementos.  Kelly’s biological mother is long dead, his dad is dead, and his one living brother has made not even the tiniest shred of effort to know or connect with Kevin – his nephew! the one child of his dead brother! – in the more than 17 years since Kelly died (which tells me that he also doesn’t care).  The one living person who might care would be Kelly’s step-mother, but she’s got plenty of mementos already, and anyway, she cut me out of her life years ago.  So into the dumpster Kelly’s stuff went.

Maybe it reveals me as cold.  On some level, it strikes me as sad that a person lived for 33 years and died, and his memory is fading to black.  But mostly, I feel like, well, this is what happens when you live like a son of a bitch, leaving destruction in your wake.

For the Love of Books and Friends

img_5095Friday night I said an emotional and bittersweet goodbye to my book club.  We met for dinner, and they gave me a sendoff I wasn’t quite expecting, presenting me with the book journal that documents every book we’ve read together (136 books!), and which Julia has been keeping for the group for many years, another small journal in which they had each written a heartfelt message to me about a special memory they have of our group, and a ridiculously large gift card to Powell’s bookstore in Portland (a book lover’s wet dream; it’s the world’s largest independent bookstore, and takes up an entire city block).

A little over thirteen years ago, a handful of us moms started a little book club as an outcropping of the MOMS Club we belonged to.  Our first book was Memoirs of a Geisha, and our first discussion took place on the playground at a local park while our kids played.  I had only two kids back then, and Joey was just a baby.  It wasn’t long before we started meeting at each other’s houses in the evenings, without kids, and with food and drink.  I’ve been allowed to be the coordinator of the group for all these years because I’m a control freak, which these ladies kindly refer to as my “organization skills”  Many women have come and gone over the years, but three of us are original members, several have been in the group for ten years or more, and several more for five years or more.  There are stay-at-home moms, teachers, an accountant, an actuary, an attorney, a real estate agent, among others, and we come from diverse backgrounds and run the gamut on religious beliefs, political leanings, and parenting philosophies.  Despite all the differences – or maybe because of them – we’ve remained a strong core group.  There has never been a month without a book, without a discussion, or without a volunteer to host the discussion.  Several years ago we started a tradition of having a holiday dinner in December in lieu of a book discussion, with a gift exchange of – what else? – books.

My friend Laurel, sums up our group perfectly: we went from passing around nursing babies to passing around reading glasses.

Every book we’ve read – even the ones that sucked – generated a good discussion.  We followed published questions to guide our discussions, but we invariably sidetracked into discussions about our own lives and experiences.  And isn’t that the true magic of books – that they provide such rich opportunities to not only escape from real life, but to see other perspectives and experiences and reflect on our own?  My daughter Daisy has often asked me why we call it a “book club” when it should be called a “life club.”

I am so grateful to have been a part of such a dynamic group of women and readers.  I will miss them.



Summer Intensive

Summer break was a flurry of activity, and my head is still spinning.

Joey finished his final season of Little League, which was very bittersweet.  I am already suffering from acute nostalgia about that, knowing that Fall Ball starts up soon, and we won’t be out there in the bleachers watching him play.

Joey and Annabelle also took part in their final show (The Music Man) with the local children’s theater, which took its final bows after 34 years.  Also very bittersweet.

We kicked off birthday season:

Scarlett turned 4 in June –


Joey turned 14 in July –


Finn turned 8 in July –


Michael turned 50 in August, and we have several more birthdays coming up.

Also in July, we celebrated our fifteenth wedding anniversary.


No words of wisdom; we’ve certainly had our ups and downs.  Several couples we’ve known for ages have split up recently, and I find myself wondering about other people’s breaking points.  We’ve come through some really, really difficult, miserable shit, and I feel like we’ve come out better and stronger, but I’m enough of a realist (and cynic) to not be all Pollyanna-ish about it.  It takes a lot to keep a marriage together, and it takes a lot to call it quits.  I’m sad for everyone who goes through a breakup, because it sucks for everyone involved, even if it’s hopefully a step in the direction of happiness.

Anyway.  We spent the first half of summer break getting the house ready to put up for sale.  That meant some repairs and improvements, lots of purging, cleaning, and packing stuff away.  That literally took a good several weeks.  We finally officially put the house up for sale early in July.  We signed the listing agreement, and one Sunday morning I left to go grocery shopping, and when I arrived back home, the For Sale sign was up in our yard, and I promptly started crying.  I wasn’t expecting it to have that effect on me, but damn.  So many memories here, and even though we want this change, it’s going to be hard to say goodbye.

The next few weeks were spent in a constant state of stress (which has not let up), while we have tried to keep the house perpetually clean (do you have any idea how impossible that is with this many people living under one roof?), and have had numerous open houses and showings.  Every time our realtor has called to say that someone wants to see the house, we spend a couple of hours madly dashing around cleaning, tidying, stowing, and then we have to get everyone out of the house for a while.

There has still been shuttling the kids to their stuff – dance, guitar lessons, horseback riding – and trying to throw in a few pool days, beach days, etc. so that the kids’ summer didn’t completely suck.

Well, it paid off, because as of last weekend, we have a buyer.  After a couple of days of negotiation, we have a contract, and it looks like we’ll be moving to Oregon in late September or early October.  Shit’s gettin’ real.

Meanwhile, the kids are almost done with their first week back at school.  Joey insisted on enrolling in high school here, even though it’s temporary, so that’s what he’s doing.  I’m homeschooling five kids now, and I’d like to tell you all about it, but I’m too fucking tired.  But I do have lots of thoughts about it.  I’m glad we’re doing it – so glad to be out of the public school hell – but homeschooling is hard, yo.

Oh, and Kevin has decided not to come with us to Oregon.  He was offered a very affordable room to rent at a friend’s house, and he was actually supposed to move out this week, but it’s been delayed a bit, but he’ll be moving out in the next few weeks and finishing school here.  He’s decided to pursue a degree in film and television, so we’ll see where that takes him.  Lots of emotions about him leaving the nest, and us leaving to be so far away from him.

And that’s all I’ve got for now.

2015 Highlights

Two thousand fifteen was a good year.  Here were the best parts:

Seeing my friend Tricia, whom I’ve known for almost 25 years, for the first time in almost ten years –


Seeing Joey in Cats


Kevin turning 18 –


Seeing Annabelle in The Music Man


Finn’s kindergarten teacher –


Seeing Joey in Peter Pan


Watching Annabelle fall in love with horseback riding –


Another Little League season –


My mommy makeover –


Watching Daisy fall in love with ballet and grow as a dancer –


The first birthday party we threw for Finn –


Seeing Kevin graduate from high school –


Seeing my beloved step-sister for the first time in fifteen years –


Seeing Joey in Beauty and the Beast


These people –


This little monkey –


Watching Daisy perform in her dance school’s summer show –


Our trip to Santa Cruz –


Getting my Little Free Library –


Homeschooling –


A perfect day with my besties –


Lilah and her guitar –


Our weekend in Portland –


Seeing The Lion King (stunning!) –


Learning to knit! –


Seeing Daisy in The Nutcracker


Seeing Misty Copeland in The Nutcracker (breathtaking!) –


Getting this –


Friends –


Love is where it’s at.

Here’s to 2016!

Ho, Ho, Blah.

I know: my blog is all but dead these days.  I think about writing all the time, but time and mental energy escape me.  When I think back to my aspirations from just a couple of years ago of actually turning my writing into something beyond blogging … well, anyway.

So, another Christmas came and went.  Less than a week later, it already seems like a distant memory.  The holidays are so hit or miss for me.  Some years I become happily immersed in the festivities of the season, and other years it all feels stressful and artificial.  That was this year; it just sort of snuck up on me, and then I was stressed out and disgruntled, trying to make it nice for my kids, but all the while feeling guilty for cutting corners and doing things half-assed.  I find that there is so much pressure to have certain feelings around the holidays, to have a certain experience, and to project a certain image.  Even the cards that came pouring in – all the artfully “candid” photos of joy and contentment (and we sent them out, too), I often found myself muttering under my breath, “Aren’t you stressed out, too?”

And now, I just can’t wait to get the dead tree out of my living room.

Something tells me that I should have tried harder to enjoy and appreciate it (that guilt again), as it’s possible that this will have been our last Christmas in this house.

So … I don’t know.  I guess I’m feeling a little blue and irritable.  So many things going on.

Worrying about the eldest son, who is so closed off and such a mystery.  It breaks my heart a little whenever I think about how little I know or understand him.  Outwardly, he’s doing well.  Working, paying his own way, doing very well in school.  But I can never shake this feeling that he’s got some big secret, and one day he’s going to drop a bombshell on all of us … or just put so much distance between himself and the rest of us that he’ll become more and more a stranger.  I swear, I worry about him far more than I worry about Finn as far as their futures go.

Worrying and agonizing about Finn and the school situation, too.

Just a general sense of being overwhelmed has settled over me.  Between homeschooling, and maintaining a house, and trying to meet everyone’s needs (and often feeling very much like I’m falling short), and worrying about today and tomorrow and next week – ack.

2016 is shaping up to be an eventful year.  I will likely be having two separate surgeries: a hysterectomy/bladder repair which is already scheduled for March, but which may have to be rescheduled because I also need to have arthroscopic hip surgery sooner rather than later for a torn cartilage which has been causing me chronic pain for about six months and is getting to the point of being almost unbearable, despite a recent steroid shot.  Aging ain’t no fun, I tell you.  Michael is all set to take the Oregon bar exam in February.  Assuming he passes – which we should find out sometime in April – we’ll put our house up for sale and move to Oregon.  It’s a lot to think about.  And worry about.  But I don’t want fear to hold us back from possibilities.

Anyway, happy New Year.  We’ll see how this next year pans out.


Born This Way: My Initial Thoughts

TVTV07FwebThere has been a lot of buzz within the Down syndrome community on social media lately about a new docu-series called Born This Way, which follows seven young adults with Down syndrome.  The show premiered on A&E yesterday.  I will be honest and confess that I wasn’t going to watch it.  It’s hard for me to explain why but … I so often find myself outside of the “mainstream” of Down syndrome parents (and so many other things!), that the more something is hyped, the more I tend to want to steer clear of it.  But I was urged by a couple of friends whom I genuinely respect to watch it and share my thoughts, so here they are:

First, I was happily surprised to see in the opening scene two young men with Ds walk into a pub that is literally a few blocks from my house.  I’ve been there numerous times.  I had no idea that any sort of reality show was being filmed in my town.  The series takes place mainly here in Southern California, in various locations throughout Orange County and L.A.  Anyway, it was cool to see two dudes with Ds enjoying a beer in a pub.

The series premier introduces us to the seven young men and women who have Down syndrome.  They include Megan, who has lived in Denver since she was born, but who dreams of moving to L.A. to be a film producer (this video of her went a little bit viral on social media a couple of years ago); John, a rapper; Steven, who has Mosaic Down syndrome and who works as a dishwasher at Angel Stadium; Rachel, who I believe is the oldest of the group at 32, who describes herself as “boy crazy”; Sean, who is a self-described “lady’s man” and is the subject of Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion (which I reviewed here); Elena, born in Japan, and facing the most difficult struggles of the group with regard to self-acceptance; and Cristina, the peace-maker of the group.

One of the first things that jumped out at me was, “Where are all of their non-disabled friends?”  I understand that this is a show focused on Down syndrome (which I appreciate, and I think it’s high time), but I couldn’t help wondering if it’s true that adults with Down syndrome, despite what may be Herculean efforts for inclusion during their childhoods, end up being surrounded solely by other people with Down syndrome in their adulthood.  It’s not that I see that as a bad thing – at least not totally.  I get that human nature drives us to seek out people like ourselves, because it is among those most like us that we tend to feel the most at home.  It just makes me wonder about the point of inclusion.  Isn’t it so that everyone has a place of belonging in a diverse community – both with disabled and non-disabled peers?  Or is the point really just to destigmatize disability and teach tolerance in an ableist society?

Speaking of abelism, there is plenty of that in this show.  It saddens me that even within the Down syndrome/disability “community,” we continue to measure people with an ableist yardstick, valuing people based largely on what they CAN do.  I understand the need to break down the barriers that have always existed with regard to disability – and specifically intellectual disability – where the focus has always been what they CAN’T do.  I get that we are trying to promote a more positive perception of people with disabilities/ID.  But I often feel like that agenda is misconceived.  The fact is, there have been and always will be people in the world who CAN’T do certain things.  Every single person in the world has their own personal list of things they CAN’T do.  We all have limitations.  Why does that have to be a bad thing?  Why does “limitation” have to be a bad word?  No, we are none of us capable of everything.  We are all of us capable of some things.  I feel like a better message to promote is that it doesn’t matter what someone is capable of or what they’re not capable of – we all are worthy of respect, compassion, dignity, and opportunities, solely because we are human.

Which leads me to another point prominent in Born This Way, and in the Down syndrome community at large, and that is independence.  The notion of independence is held up like the holy grail in Down syndrome parenting groups: everyone wants to see their kid grow up to be “independent.”  I’m sure that means different things to different people, but it often seems to comprise visions of our kids with Ds growing up and getting married and living on their own.  And I’m not saying that those things aren’t possible, but the truth is that they are rare.  Marriage for people with Ds/ID is becoming more common, but the vast majority of adults with Ds/ID will need lifelong adult help, supervision, and guidance.  In other words, very, very few will ever have the capacity to drive or live completely independently.

Again, I wish this were not perceived to be such a negative thing.  Rather than pushing for independence, I personally am way more in favor of pushing for autonomy.  I highly doubt that Finn will ever be able to live independently (and I wholeheartedly accept that), but I want very much for him to have autonomy – the ability to pursue his own happiness, make his own choices, express his own thoughts and feelings, and get his needs met.

There was a scene in the show where Elena becomes very upset with John because he keeps saying that she’s “crazy.”  Elena doesn’t appreciate being called “crazy” – it hurts her feelings.  When she expresses this to John, he explains that he “doesn’t mean it that way,” and is “just joking.”  Sound familiar?  It’s interesting me all the cross-prejudice that exists in the world.  These are the same exact typical responses one hears when addressing the use of “retard,” or “retarded.”  “I didn’t mean it like that,” you’ll hear.  Throwing around “crazy” is ableist because it demeans and marginalizes mental illness.  It’s really a matter of being informed and educated about these things, and obviously nobody has educated John about calling people “crazy,” so my comments here are not meant to be derisive of him, but rather just an interesting observation.

Elena, as I said, struggles the most with self-acceptance.  She was born in Japan to a Japanese mother and … I’m not sure about her father, but he’s neither Japanese nor American.  In any case, Elena’s mother acknowledges that it took her a good twenty years to fully accept Elena for who and what she is.  In Japan, any sort of disability is very much looked down upon and seen as something that brings shame on the family.  I don’t know how old Elena was when the family left Japan, but she has clearly been profoundly affected by her mother’s struggle to accept her.  You really can’t hold it against the mother, though, as we are all products of our cultures.  It’s just a very tragic reality, and a stark reminder of how deeply parents’ acceptance/non-acceptance of our children shapes their self-image and self-esteem.

At least one person I know (also the parent of a young child with Ds) expressed some doubt about how realistic this show is.  I disagree – I felt it was very realistic and authentic, and didn’t get a sense of it being scripted or staged.  However, the individuals chosen for the show are obviously “the cream of the crop” as far as Down syndrome goes.  These young adults are all “high functioning,” attractive, healthy, and well-spoken.  There are no non-verbal, medically fragile people with Ds on this show, and one parent of one of the individuals with Ds comments (maybe in the preview for the next episode – I can’t remember) that an expectant couple with a prenatal diagnosis might watch this show and hopefully see all the possibilities.  Again, a well-intended comment, but an ableist and misguided one, I feel.

So, you may ask: what picture of Down syndrome would I wish to promote?  Honestly, I don’t have a simple answer to that.  I just know that only promoting “the cream of the crop” only serves to further marginalize and dehumanize those who don’t reach that artificial ideal.  I wish we could present a more balanced picture of Down syndrome, and promote compassion and belonging for all.

All of that said, I did enjoy the show, and I do plan to watch the rest of the series.  I am interested in how the stories unfold, and how the relationships between these individuals continue to develop.  I think the relationships and interactions between them were what I most enjoyed.  There is ribbing, and negotiating, and arguing, and peace-making, and compromising and hurt feelings, and confrontation, and contrition going on.  This moved me more than anything.  This is being human.

You can watch the full show online here.

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