Archive | Politics

Grief

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.

 

 

13

Dark Times

It’s not that I was some great fan of Hillary Clinton, at least not before the Democratic National Convention.  I was surprised to find myself crying when she gave her speech accepting the Presidential nomination for the Democratic party.  It hit me that this was a historic moment: my daughters and I might actually see a woman in the White House.  That it’s 2016 and we are America – so smug and arrogant about our progressiveness – and we still haven’t put a woman in the White House is shameful and mind-boggling.  But suddenly it seemed as though we were going to flex our progressive, equitable muscles.

And like many, many people, I’ve been dumbfounded to see the likes of Donald Trump rising to the level of presidential nominee for one of our two major political parties.  How was it even possible that someone as vile as him – with a trail of well-documented (not just speculation, but cold, hard evidence, often in the form of video and audio of he himself saying and doing horrible things) – could make it onto the ballot?

But I took heart.  There was no way that my countrymen would actually vote him into office.  I mean, seriously – we’re America!  I know there are a lot of racist, misogynistic, bigoted, backward people in this country, but surely not enough of them to put someone like him in office.

And Hillary’s message grew on me.  Yes, we are stronger together.  I was moved by her speeches.  I was moved by the fact that her entire adult life has been spent in public service.  I was moved by her knowledge and experience and calm demeanor, even when she was being torn down.  I respected that she held her head high no matter what.  She would be a good leader, I believed that.

Like a lot of people, I turned on news coverage last night expecting a very different outcome.  I was pretty confident that America would see fit to put the right person in office.  I really believed that she would win by a comfortable margin.  When the numbers began coming in so close, I began to feel physically ill.  My stomach was in knots, my heart was thudding – a bona fide anxiety attack.  By the end of the night, I was in tears.  I barely slept last night.

How did we get here?

I feel betrayed.  I feel a great anger – not only at all the people who actually voted for Donald Trump, an unqualified, ill-tempered, vindictive, childish, racist, bigoted, xenophobic, lying, cheating, woman abuser, but for all the third party voters and abstainers who allowed this to happen.  I’m sure when you wrote in your uncle’s name or your favorite cartoon character’s name or filled in the bubble for Jill Stein, you felt morally superior in the moment.  Well, fuck you. You not only threw your vote away, you handed it to a monster.  How do you feel now?

What am I supposed to tell my daughters?  Or my sons?  Do I lie to them?  Or do I tell them the truth: that no, America is not ready for a female president, and we would rather have an inexperienced, loose cannon, lying, cheating, prejudice, woman assaulter in the White House than a qualified, experienced, even-tempered woman who has devoted herself to causes that serve the public interest?

I am trying to tell myself that life will go on, pretty much as usual.  That this will have very little effect on my family’s daily existence.  But I don’t know if that’s actually true.  I fear that the likes of Trump will drag us into another recession, that he cares so little about diplomacy and foreign policy that he will drag us into a horrible war.  I don’t think those fears are unfounded.  But even if my family’s lives aren’t impacted much, it would be utterly selfish to not worry about all the immigrants who now have to worry about deportation and having their families ripped apart, about the LGBT community who now has to worry about their marriages being nullified, about the Muslims who will be harassed and scrutinized and distrusted because Trump thinks they’re all potential terrorists.  And even if my day-to-day life goes on as usual, I live with the knowledge that my family lives in a country in which lying and cheating get a pass, sexual assault against women is acceptable, that abusers aren’t held accountable.

I am sickened.  And very, very afraid.

14

Colin Kaepernick, Racism, and the Nature of Protest

I don’t give a shit about football, and I never even heard of Colin Kaepernick before a few days ago when Facebook exploded with posts and links to articles about his sitting out the national anthem preceding a game last week.  Much of what I’ve read has been couched in outrage and hostility towards Kaepernick.  Words and phrases like “inappropriate,” “offensive,” and “disrespectful” pepper these missives.  Donald Trump (you know, the guy who is running for President – a position that is supposed to understand and honor the Constitution?) has suggested that Kaepernick leave the country if he doesn’t like it here.

I am completely dumbfounded by these particular sentiments.  What, exactly, is protest supposed to look like?  Is it supposed to be polite?  What would “appropriate” and “respectful” protest look like?  What would an acceptable form of protest be?

By its very nature, protest is supposed to speak volumes.  It’s supposed to piss people off.  It’s supposed to rattle cages.  It’s supposed to challenge the masses, rock the boat, and call into question the status quo.  Protest is supposed to get people’s attention.  That’s the whole point.

Did Kaepernick harm anyone?  Did he engage in unlawful behavior in his protest?  No.  He quietly sat down, that’s all.  Did this act upset people?  Yes, because it flies in the face of an arrogant brand of patriotism that borders on religion.  To some, love of country demands not only from oneself the observation of all the adopted rituals and worship of the adopted symbols, but that everyone else do the same.  It’s groupthink at its best.

I’m not even going to get into the fact that American patriotism is supposed to mean that if you value the freedoms afforded by being American, then you don’t vilify someone for exercising those very freedoms – you know, like the First Amendment.

So a lot of people don’t like the method by which Kaepernick chose to protest.  Refusing to stand for the national anthem (which is a form of protest not original to Kaepernick, and which song – originally a poem – was born of a bigoted slave owner) is, apparently, profoundly disrespectful to the United States of America and everything she stands for (as if the USA were a living, flesh and blood, feeling entity, and not a collection of many, many individual living, flesh and blood, feeling people, including Kaepernick), to the freedoms we hold dear (refer to previous paragraph), and to the US military (that’s a stretch, but okay … however, let us not forget then, that the US military is comprised of many, many black people who are subject to the very racism and injustice that Kaepernick is protesting).  Don’t we need to ask ourselves in the face of this what exactly America stands for?  And whether America is living up to those ideals?  Does a country that endorses racial profiling and the mass criminalization and incarceration of people of color live up to the ideals of freedom and liberty for all?  Does a country that doesn’t hold its law enforcement officers accountable for the unjustified killings of black people over and over and over live up to the ideal of equality among all of its citizens?  No, I don’t think so.

With regard to his action being disrespectful to the country, I have to confess that I agree – his sitting down for the national anthem is disrespectful to the country.  But guess what – that’s the point.  He stated pretty succinctly when asked that he will not show respect for a country that shows so little respect for people of color.

“I am not going to stand up to show pride in a flag for a country that oppresses black people and people of color.”

So, yeah, I think he’s getting his message across loud and clear.  The only people who aren’t hearing him are those who aren’t listening because they’re too busy being focused on their own indignation.

And this is why racism is still alive and kicking here in this great country.  Because too often, the voices crying out in protest, in pain, in fear, in frustration, are stifled by opposing cries of indignation.  Say #blacklivesmatter, and the masses are at the ready with their #allivesmatter.  Rants about the horrors of another unarmed black person being shot and killed by police are met with rants defending cops.  Decrying the mass incarceration of black and brown skinned people is met with counter-cries about black and brown skinned people’s lack of respect for the law and common decency.  It doesn’t matter how the protest is made; it never seems to be acceptable.

Now that I’ve been educated about the Star Spangled Banner, I’m not sure I’ll be standing up for it when the occasion arises.  And I will educate my kids about both sides – its history, the symbol of patriotism it represents to many, and the oppression and bigotry it represents to many others – and let them decide for themselves how to approach it.

As for Colin Kaepernick, he expected the backlash.  We Americans are nothing if not predictable.

5

Ten Reasons Why Public Restrooms Should Not be Transgender-Friendly

Next to Prince’s shocking death, the issue dominating news outlets and social media is the one surrounding trans people’s use of public restrooms.  The big question is: should they be required to use restrooms that correspond with their biological gender, or should they be allowed to use restrooms that correspond with their gender identity?

Wake up, people!  Why is this even a discussion?  The answer is obvious.  Of course transgender people should only be allowed to use public restrooms that correspond with their God-given gender.  Here’s why:

  1.  Transgender people are notorious sex maniacs and child rapists.  It’s a known fact.  Seriously.  Stop and think about the transgender people you know personally.  Total sex maniacs and child rapists, right?  Mmm hmm, I thought so.
  2. It is a known fact that the wafting aroma of feces and air freshener, coupled with the sound of piss hitting water from behind closed stall doors is a total aphrodisiac to perves like transgenders.  If we let them in the door of the women’s restroom, we’re seriously just asking for it.
  3. We need to protect our kids.  If a kid is faced with a trans person, especially in a restroom, who knows what long-term effects it could have?  At the very least, the kid will probably be plagued by PTSD and have to undergo Christian-based counseling, and worst-case scenario (assuming they’re not molested!), they may turn trans themselves!
  4.  Non-trans people never assault, molest, or harm anyone in public restrooms.  So, obviously, if we bar trans people from using the wrong bathrooms, we can cross the dangers of public restrooms right off our list of worries.
  5.  Everyone knows that most sexual assaults are committed by trans people, and not non-trans people.  Look it up!
  6.  The best way to earn your way into God’s good graces – and therefore heaven – is to be as intolerant and exclusive of people who are not like you as possible.  Not only does God hate fags, He also hates everyone who is not a white male cisgender heterosexual American Christian Republican.  It says so right in the bible!
  7.  Speaking of God, if He had meant for people born with penises to wear dresses, He wouldn’t have invented pants, and if He had meant for people born with vaginas and boobies to wear wingtips, He wouldn’t have invented Victoria’s Secret.  Think about it.
  8.  If we let trans women use women’s restrooms, and trans men use men’s restrooms, what’s next?  Are they going to want to eat at the same restaurants as us, too?  What’s to stop them from frequenting our grocery stores and banks and schools?  They may even demand to be allowed to drink out of regular-people drinking fountains!  They’ll take over the world, I tell you!
  9. We normals should not be made to face things that make us uncomfortable.  I mean, seriously.  If trans people are uncomfortable with the law of the land, it’s just their punishment for being so … not normal.
  10.   Because, cooties.  Ick.
10

Topsy Turvy World

You’ve no doubt heard about Rachel Dolezal by now – the president of the Spokane, WA chapter of the NAACP who has been outed by her white parents as a white woman, despite the fact that she has been living as a black woman and claiming black identity for about the past decade.  The world is just becoming more and more confusing to me, I tell you.

So, one the one side, you have people totally up in arms about Dolezal’s deception and misappropriation of racial identity.  On another side, you have people saying, “But wait a minute.  Race is a social construct, so if she feels that she identifies as black, who are we to say otherwise?”  And when you draw any comparisons to Caitlyn Jenner and/or transgender, you have yet another side angrily saying that the two are completely different issues and comparing them is ridiculous.

Sigh.

To make matters even more confusing, there is the fact that, apparently, the NAACP stands behind Rachel Dolezal.  Does the black community?  I have no idea, but if this is any indication, I would say no. How do most white folks feel about it?  I can’t say for sure without doing a comprehensive survey, but in a discussion about it on Facebook, it seems like my white friends who took part in the conversation are okay with Dolezal identifying as black – which leads me to wonder: is this just another case of white people feeling like white people can do whatever they want?  I mean, I know that’s grossly oversimplifying it, but I can’t help but wonder how privilege plays into the whole thing.

Right or wrong, I can’t help but draw comparisons to the transgender movement.  This article says that the comparison is “asinine.” However, it brings up a lot of excellent points about privilege and appropriation of an identity to which one was not biologically born.  But this article about Caitlyn Jenner and transgenderism (I don’t know if the “ism” is appropriate, so I beg pardon if it’s not) also makes a lot of sense and makes some astute points, too, about privilege and appropriation of an identity to which one was not biologically born.  The latter article drew a lot of ire, however, when I posted it on Facebook.  Apparently the views expressed in it are seen by many as prejudiced, hateful, and exclusionary.

And it’s not that I have any problem with Caitlyn Jenner – I really don’t think I do.  I think the article brought up some feelings for me, though, about the possibility that Caitlyn Jenner waters the experience of being a woman down to wearing makeup, nail polish, and having “girls’ nights.”  But, really, c’est la vie.  I know plenty of shallow biologically born females.  It’s really not much skin off my nose.  More than that, though, the idea that there are transgender groups out there who are demanding that we stop saying “woman” and “vagina” because those terms are exclusionary – yeah, that bothers me.  I feel pretty strongly about my identity as a woman who has a vagina, and I’m not about to redefine my identity or my body parts to accommodate someone else.  Maybe mainstream transgender people don’t actually feel that way about the terminology, though – maybe it’s only fringe radicals, I don’t know.  I probably shouldn’t worry too much about it unless I’m actually faced with it directly, I suppose.

But then there is also the whole fact that even though Caitlyn Jenner now identifies as a woman and has felt like a woman her entire life, she certainly reaped the benefits of male privilege for the first 65 years of her life.  And to that end, I’m sorry, but she will never know what it’s like to be a woman and NEVER have benefited from male privilege.  And I do feel like that is a huge separator between me and her.  And that brings up a parallel to the Rachel Dolezal thing – the fact that she reaped the benefits of white privilege for most of her life, and that shaped her in ways that do, in fact, separate her from black people who have always been black and never benefited from white privilege.

When I began a discussion about Rachel Dolezal on Facebook, someone informed me that there are people out there – hearing people – who insist that they were meant to be born deaf, want to identify as deaf, and seek out surgical intervention to render them deaf.  Sounds completely out there, but guess what – it’s apparently a real thing.

Where do we draw the line?  And by “line,” I mean legal and social recognition and acceptance of, and affording people all the benefits that go with whatever identities they claim.

Gender is a social construct.  Race is also a social construct.  So is disability.  Can we do away with all of these social constructs?  Should we?  I don’t have an answer to that, but I confess that the whole world is making less and less sense to me lately.  Are there no absolutes in anything?  Can nothing actually be counted on?  Is nothing actually what it appears to be?  Is everything up for grabs?

What if a black person decided to identify as white?  (Remember when everyone thought that Michael Jackson was bleaching his skin in order to be “white”?  He was vilified for being ashamed of his blackness.)

What if a person with Down syndrome declared that they believed they were meant to be born without Down syndrome and were heretofore going to identify as non-disabled, as a person without Trisomy-21?

Does that seem absurd?  Why or why not?

***

I think perhaps the reason I’m struggling so much with all of this is that I want very much to be an inclusive, accepting person, and I feel this pressure (perhaps self-inflicted) to take a stand – on everything.  But I worry a lot about taking the wrong stand.  And the more I read, the harder it often is to know which is the right side to stand on.

In the end, I think it gets back to something I’ve understood for a while, and that is that for the most part, people care most about the social issues in which they are somehow personally invested.  It’s pretty easy for me to find my voice and articulate my feelings and views about issues concerning Down syndrome, for instance – because I have a kid with Down syndrome, so it’s necessarily become an issue near and dear to me.  Before I had a kid with Down syndrome, it meant nothing to me.  I didn’t know much about it, had no motivation to learn about it, and was pretty indifferent to Down syndrome and disability issues.

I have strong feelings about racism, probably because I’ve become more and more aware of my white privilege, and my conscience won’t let me just keep reaping the benefits of my white privilege and not acknowledge it and speak out about the historical and continued gross mistreatment of racial minorities.  Still, I have no doubt that I remain extremely ignorant about a lot of racial issues.

Transgender issues, too, are still very much a mystery to me.

And now I’m learning that there are all kinds of other “trans” groups – “transracial,” “transability”?

I’m feeling like I need to just take a few steps back from all of it and just not take a stand on anything I’m not very comfortable and familiar with.  Just be an observer, live and let live, I guess.

But that feels like indifference and passivity.  And that feels like complicity.

I’m just so confused.

6

Health Care Scare

Well, I’ve already pissed people off this weekend on the topics of home birth and religion, so I might as well go for broke and touch on Obamacare.

Let me start by saying that yesterday marked the first day of 2014 that our family had health insurance.  That’s right, we – a family of nine – were without health insurance for two months.

What I find curious is that when I’ve mentioned this to people over the last several weeks – that we currently had no health insurance – the first thing out of a number of people’s mouths was something along the lines of, “Gotta love Obamacare, eh?” followed by a derisive snort.

It’s funny how people jump right to their own ideologies to explain things.

So, no, our being without health insurance for two months was not the fault of Obamacare.  It was actually the fault of Michael’s former employer.  See, when the firm he had been working for up until last September closed its doors, we continued our health coverage through COBRA.  Problem was, that former employer up and canceled the group policy without telling his former employees – and once the group policy is canceled, it’s not available even through COBRA.  We only discovered that our coverage had been canceled when one of us went to pick up a prescription refill at the pharmacy and were told we had no coverage.  A few IMG_3719phone calls later confirmed that, indeed, by that time we had already been without coverage for two weeks – since January 1 – only Anthem Blue Cross never even bothered to send us a notice of cancellation (and in fact, still hasn’t, and in fact, still owes us a refund of one month’s insurance premium which we mailed, and they accepted even though our policy had been canceled unbeknownst to us).  Under the Health Care Reform Act (yes, Obamacare), you must apply for new coverage by the fifteenth of the month in order for coverage to go into effect on the first of the following month.  We didn’t discover that we were without coverage until January 17, so we missed the deadline to get new coverage by February 1, and therefore had to wait until March 1 for new coverage to become effective (which, for what it’s worth, is NOT through Anthem Blue Cross – who was perfectly willing to accept our money even though our policy had been canceled, has yet to refund that money, and who was perfectly willing to not tell us that our doctors are no longer in their network, but try to get us to sign up for new coverage with them, saying that we could iron out the whole doctor thing later).

Anyway, so we have new health insurance now.  Hallelujah!  In the last two months while we’ve been without coverage, all nine of us got colds/flu while we crossed all of our fingers and toes that there would be no ear infections or upper respiratory infections requiring visits to urgent care, seven of us had stomach bugs that lingered, and Michael had an episode of abdominal pain, which, with his history, could definitely spell big trouble but which this time, thankfully didn’t.

So, back to Obamacare.

If I hear one more person say that Obamacare is socialized medicine, I swear to god I will throw an encyclopedia at them.  Obamacare is not socialized medicine.  Socialized medicine is characterized by the fact that the hospitals are owned and run by the government, and the doctors and nurses are all government employees.  In America – even with the evil Hitlercare Obamacare, health insurance is still private, for-profit enterprise.

Think Obamacare is Socialized Medicine?  5 Things You Should Know about Soviet Healthcare

How Aboot that Obamacare?  Why Health Reform Won’t Turn Us Into Canada

Is Obamacare perfect?  No.  Is it an attempt to regulate the health insurance industry?  Why yes, yes it is.  It is an attempt to make healthcare accessible to everyone.  Again, it is not perfect – but I don’t see anyone else coming up with a better solution.

Dudes, I am happy about Obamacare, okay?  So don’t think for a moment that your snide remarks about how Obamacare will be the downfall of America, blah blah blah will get a chuckle or a nod of agreement from me.  For us personally, we will be paying a little less for monthly premiums than we were when we had group coverage through Michael’s employer (and this is without subsidies – we don’t qualify).  The coverage we have now – effective yesterday – is in some ways better than what we had previously (we can choose our own doctors!  We can see specialists without a referral or authorization!  We have pediatric dental coverage – we’ve never had dental coverage!  We’ll pay less for prescriptions!), and in some ways not as good (some of the co-pays/shared costs will be higher).  But all in all, it’s definitely coverage we can live with and are happy to have.  And hey, Michael is a cancer survivor.  Finn has Down syndrome.  Those are pre-existing conditions, my friends.  Yeah, we’re pretty happy to have this coverage.

And you know what?  I would be happy to pay a little more than we were paying before in order to make it possible for someone else to be able to get coverage who otherwise couldn’t afford it.   That insurance is an enterprise that spreads the risk and the cost among many is not a new idea, folks – that’s what insurance has always been about.

18

Life, Choices, and Down Syndrome

SPOILER ALERT: In this piece, I discuss themes and incidents from the book, The Unfinished Child by Theresa Shea.  If you plan on reading the book, you may want to come back to read this after you have read the book.

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***

I wanted to talk more about some of the underlying themes in this book I just finished –  The Unfinished Child – which I cannot recommend highly enough.  I wrote a review here.  Although the story is fiction, it undoubtedly could have been pulled from the lives of countless people over time and across the world; it tackles issues which are certainly very real and relevant.

I am always honored when my humble book blog catches the attention of an agent, publisher, or author who asks me to read their book and write a review.  When author Theresa Shea first contacted me to let me know about her new book, I was intrigued mainly because she said that it dealt with Down syndrome.  I asked her what her personal connection to Down syndrome is, and she told me:

My personal connection to Down syndrome is that when I was pregnant with my first child (he was born when I was 35), I was subjected to the genetic counselling that is mandatory here in Canada for women when they turn 35 (the big red RISK gets stamped onto your file).

I gave blood thinking, what the hell, I’m healthy, and then got the results back that signalled an increased risk of having a child with Down syndrome (yes, the alphafetaprotein test). The call came on a friday afternoon. My husband and I were working. We came home and the doctor’s office was closed. I cried all weekend, convinced something was wrong with my baby. Then the doctor’s appt. and the numbers that we had 1 in 268 chance of having a baby with Down syndrome. I was so mad that they had put me through my weekend of angst for those numbers. It seemed ridiculous.

I have 3 “healthy” children, and I didn’t have any more tests after that (not even ultrasounds) because I figured that going into parenting with that degree of fear wasn’t good for anybody. My children were wanted, and we figured we’d take what we got. I have no doubt that love would have happened with any child we were given.

She went on to say in another email,

Life is risky, even if your children are born “healthy.” That doesn’t guarantee a “normal” life. I think people dig deep when they have to.

She also described to me how her sister had received a prenatal diagnosis of spina bifida.

There went any joy in THAT pregnancy, and yet the outcome was the same– she gave birth to a child with spina bifida. Did she REALLY need to know in advance? Tough questions, and I don’t presume to have the answers for everyone.

I assumed, perhaps naively, that her novel would unfold similar to her personal experience: the main character would either suspect she was carrying a baby with Down syndrome and then turn out not to be, or would turn out to actually be carrying a baby with Down syndrome, but would have and keep the child after wrestling with the decision, and then, of course, discover the joys that most of we parents of children with Down syndrome find.

That’s not what happens.

What happens (and here’s the SPOILER) is that after receiving a definitive prenatal diagnosis of Down syndrome, she terminates her pregnancy.

I will tell you that I wanted to somehow reach into the book and change her mind.  Right up until she actually goes through with it, I sat there, unable to tear myself away, willing her to not go through with it.  I wanted so, so very much for her to change her mind.  But she didn’t.  She goes through with it, and the actual abortion is described briefly but graphically, and it ripped a piece of my heart out.  I was actually sobbing as I read it.  Sobbing for the baby, and sobbing for the mother.

The loss is so palpable, so real and immediate.  Yes, the loss of the baby’s very life – or at least potential life.  The loss of possibilities.  And Shea does a wonderful job of showing the reader the profound loss that the mother experiences, as well.  She grieves.  She is not glad to be rid of it.  And you just know that she will never be quite the same again.

I think the tendency is to vilify women who choose to terminate a pregnancy.  Even I, who hold myself to be staunchly pro-choice, feel angry and slighted in some way when discussions about abortion turn to abortion based on prenatal diagnoses of Down syndrome.  How can I not feel a personal affront when someone makes a conscious choice to avoid having a kid like mine?  “People are too hung up on perfection,” I say.  “People who want only perfect kids shouldn’t become parents at all,” I’ve said.

But it’s just not that black and white, and The Unfinished Child illustrates this extremely well.  While in many ways, we in western society do seem hung up on perfection and competition, this is not, in reality, why most people who abort for Down syndrome make that choice.  Rather, it’s usually an agonizing decision, and one weighted by the understanding that the world is still largely, in this day and age, an unkind and even dangerous place for people with disabilities.  Alison Piepmeier wrote a wonderful article about this recently: Outlawing Abortion Won’t Help Children With Down Syndrome.  The sad reality is that it’s we who have created and perpetuated the intolerant climate that surrounds disability and difference.  How can we continue to marginalize people with disabilities and then scream and yell about “baby killing” and “ripping babies from mothers’ wombs”?

I think there was an epiphany for me while reading this book, and that is that the women who choose to terminate their pregnancies based on a prenatal diagnosis of Down syndrome or some other disability are not villains, they are most likely not selfish, not shallow, not bad people.  They are women who are afraid – perhaps of the disability itself, perhaps of the intolerant climate disability resides in.  They see in themselves an inability – whether financial, physical, emotional, or otherwise – to bring such a child into the world under current circumstances.  Who is anyone to tell them they are wrong?  Until we are willing and able to make the world a more welcoming place to people with disabilities and differences, by seeing every person’s intrinsic worth as members of the human family, as so eloquently written by Amy Julia Becker in her article in The Atlantic, by taking care of those who are vulnerable, by providing (and not cutting) resources to help people with disabilities live better lives, by championing true inclusion, by teaching our children kindness, compassion, tolerance, and acceptance – until we are willing and able to do all of those things for people who have already been born, then I don’t believe we have the right to shake our fists about abortion.

Prenatal testing figures heavily into The Unfinished Child, too.  This is relevant, as most people know, because a new generation of prenatal screenings specifically targeting Down syndrome has already hit the market, making a prenatal diagnosis of Down syndrome possible in the first trimester of pregnancy – and it’s a competitive market, with different companies vying for their very own piece of this economic pie.  The majority of the Down syndrome community is up in arms about these new tests because they do target Down syndrome (which is not in and of itself a sickness or disease or a condition that is incompatible with life), which smacks of eugenics.  What does it say, after all, about how society feels about people with Down syndrome when society appears so eager to eradicate Down syndrome?  And what will happen to already dwindling resources and funding for research to help people with Down syndrome if Down syndrome becomes a rare condition?

We laud technology and how advances in science, medicine, and diagnostics improve our lives.  And yet, there is a burden that comes with these advances: the burden of choice.  What do we do with the information technology gives us?  Is it better to know your baby has Down syndrome before he is born?  Again, there are no easy answers; it’s not black and white.  Although I am pro-choice, I’ve never thought myself capable of choosing to terminate a pregnancy myself.  I’ve always been extremely grateful, however, to have not known about Finn’s Down syndrome until after he was born – in part because I was never faced with having to make that choice.

6

Can We Please Pull Our Heads Out of Our Asses?

When I signed online this morning for my first internet fix of the day, I was greeted by the headline that the governor of North Dakota has signed legislation banning abortions (a) after a fetal heartbeat is detected, (b) for genetic “defects” such as Down syndrome, and (c) for gender selection.  My Facebook feed contained praise from my Christian acquaintances for this action, some deeming it the work of God.

What a load of crap.  What makes anyone think that “god” gives a flying crap about babies?  The bible is full of stories of god killing babies, and even in the modern world, babies die all over the world at every hour of the day and night not only from violence (which can arguably be blamed on humans and not on god), but also starvation, poverty, disease, and natural disasters (i.e., “acts of God”).  So, let me get this straight: this omniscient, omnipresent, omnipotent, omnibenevolent god is influencing legislation regarding the lives of unborn babies, but he can’t (or won’t) do a goddamn thing about child rape, child murder, childhood cancer, floods, draught, hurricanes, tornadoes, earthquakes, or tsunamis that kill already-born children?  Right.  I’m sick to death of hearing that abortion makes Jesus cry.  Bullshit.

You might think I’d be happy about the Down syndrome part of this whole North Dakota legislation.  After all, “Don’t you want to see people stop terminating for Down syndrome, Lisa?” you might be asking.  Well, of course I do.  I don’t take joy in abortion for any reason.  I think it’s a sad reality, and for some people their best option.  I would like to think that nobody takes it lightly.  I just don’t think the way to minimize abortion is by legislating people’s – women’s – rights away.

What do you think happens to pregnancies that are continued by force?  Making abortion illegal or inaccessible doesn’t make women love or want their babies.  If a pregnancy is unwanted – for whatever reason – do you think it’s going to go well if the woman is forced to continue it against her will?  Do you think she will take good care of herself and her unborn baby?  Yes, she could carry that unwanted baby and put it up for adoption.  As anyone who has actually been pregnant knows, however, a pregnancy takes a toll on a woman’s body.  So even if she gives that baby up for adoption, she is still being forced to undergo the rigors of pregnancy and birth.  And are YOU willing to adopt her baby?

People who are against abortion at all costs are living in a dream world.  They seem to think that if abortion is banned, every baby will be born into a loving home where it will be adequately provided for.  And yet, these same people tend to also be vehemently against the very social programs that are meant to support children and families in need – because the truth is, many abortions occur because the mother is just not in a position to raise and provide for a child.  Taking this position is not called being pro-life – it’s only being pro-birth.  There’s no follow-through, just a whole lot of judgmental, sanctimonious lip service.

How about education?  And I’m not talking about teaching kids abstinence, for crying out loud.  How about affordable access to birth control for everyone?  How about affordable health care for everyone?  How about affordable, accessible child care?  And in the case of Down syndrome, how about a change in the way we see people with Down syndrome, and the way Down syndrome is portrayed to expectant parents?

Those are the things that will lower abortion rates – not legislation.  Because the truth is, anyone who wants an abortion badly enough will find a way to have one.

27

Hostile World

It seems to be a dark time for Down syndrome.  Lots of bad shit happening.  And maybe it’s really nothing new – in fact, it’s not, because throughout history, people with Down syndrome have been subjected to unspeakable abuse, neglect, discrimination, and cruelty.  The cruelty nowadays comes under different guises than it used to, but it’s still going on, and thanks to the prolific media, social and otherwise, stories abound.

***

Last week there was this story which alleges that a teacher was discovered to have visited some terrible abuse on a little girl with Down syndrome in her special education classroom.  I wanted to verify the story outside of the mom’s blog, and sadly, a Google search of “teacher abuse student with special needs” turns up a flurry of stories.  This shit is pretty prevalent, apparently.  And it’s one of my most gut-wrenching fears – that someone will harm Finn and he won’t be able to protect himself or to tell me.

***

Have you heard about Robert Ethan Saylor?  His story is creating tidal waves in the Down syndrome community.  In short, he was a 26-year old man with Down syndrome who, back in January, went to a local shopping mall with his caregiver to see Zero Dark Thirty.  When the movie was over, his caregiver went to get the car, leaving Saylor, I believe, in the lobby of the movie theater to wait.  Saylor decided he wanted to see the movie again, so he returned to the theater without buying another ticket.  Theater personnel attempted to get him to leave or buy another ticket, and he refused.  Mall security was called – they were off-duty police officers moonlighting as security guards.  Somehow, the situation escalated to the point of Saylor ending up face down on the ground, handcuffed.  He died there, of what the coroner later deemed “positional asphyxiation.”  His death, however, has been officially blamed on Saylor’s Down syndrome, not on the officers who placed him in the position that resulted in his death.

The story is troubling for a number of reasons.  First of all, a person died.  A 26-year old man lost his life over a lousy movie ticket.  It seems apparent that the officers were not trained in dealing with persons with intellectual disabilities.  If they had, the situation surely would have been dealt with differently, and the story would have ended differently.  Also troubling is the fact that there has been very little – if any – outrage outside of the Down syndrome community.  Had this been a 26-year old man without a disability – without Down syndrome – I would bet my life that the level of outrage would be multiplied ten-fold.  Also disturbing is the fact that an internal investigation within the police department that employs the officers involved found no wrongdoing, and although the coroner deemed Saylor’s death a homicide, a grand jury has decided not to pursue criminal charges against the officers.

It’s like Saylor’s was a throwaway life.  A disposable life.  After all, he had Down syndrome.  What value did he have, except maybe to his family?  It’s crossed my mind to wonder if on some deep level, people think of it as an abortion that just happened 26+ years late.

***

A few days ago, I was asked by an acquaintance who works as a tissue broker (that is, he deals in human tissue for research) if there might be anyone in my Down syndrome contacts who would be willing to donate a small blood sample for a client of his that is undertaking a research project pertaining to Down syndrome.  There was a part of me that hoped that the research might be on the order of better understanding Down syndrome and/or bettering the lives of people with Down syndrome.  But I suspected that it probably had more to do with preventing Down syndrome.  This suspicion was confirmed when I asked what the research was and was told that the client is a company that is in the process of developing a new “diagnostic” test for Down syndrome.  A prenatal diagnostic test.  I felt sick to my stomach at that moment.  “How fucked up is that?” I asked myself.  “That in order to develop a test to prevent Down syndrome, they need a person with Down syndrome to contribute to the endeavor by donating a little blood.”  I told him no, I don’t know anyone who would be willing to contribute to such a project.

Apparently the new generation of prenatal screenings that are specifically aimed at Down syndrome have created a competitive market.  Everyone wants in now.  I guess it’s no surprise.  Once the technology is there, there is no undoing it, there is no turning back the clock.

As I’ve said before, I remain pro-choice.  It’s not a moral judgment about abortion in general that I’m making, but I do find it very troubling and disheartening that Down syndrome is being so openly targeted, and that a fair and accurate picture of real-life Down syndrome is not generally given along with a prenatal diagnosis.  What real choice is being made if it’s not a fully informed choice?

***

It’s all very paradoxical.  On the one hand, people with Down syndrome are living better-quality lives than ever before thanks to greater understanding of Down syndrome, advances in medical care, and community resources and supports.  On the other hand, the world is still largely a hostile place for people with Down syndrome – a place where children with Down syndrome are abused by adults in positions of power and trust, a place where adults with Down syndrome die because of the ignorance of people around them, a place where companies are vying for a corner on the market of eradicating Down syndrome.

 

16

Another Gun Story

I recently wrote about how, many years ago, my dad taught me how to shoot a gun.  It was a heartwarming story, and I very much remember it as a time when the hard-won bond between me and my dad was cemented a little more.

Now I’ll tell you another gun story.  It’s not too long.

One night when I was about 10, I woke up to the familiar sounds of my parents fighting.  It was another doozy – my father’s drunken shouting, my mother’s shrill screaming, things going bump and bang as my father, I imagined from my bedroom, staggered around, and the sounds of slapping and hitting as the fight escalated.  Alone in my room, I buried my head under my pillow, trying to block out the sounds.  I lay there, rigid with fear, waiting for them to stop.

At some point, my mother began screaming, “KIDS!  CALL THE COPS!  HE HAS A GUN! gun CALL THE COPS!”

I was frozen in terror, afraid to move a muscle.  A gun?  I couldn’t get out of bed and call the police!  I was just a little kid!  My two brothers were in their room next to mine, and I imagine they were just as terrified as I was.

In a short time, the police did arrive.  I don’t know if it was my mother who called them or a neighbor.  They took my father away, though.  I remember that I spent the rest of the night in my mother’s room, and that she cried all night.

They took my dad to what we called then “the funny farm.”  He was pointing the gun at himself, apparently, threatening to shoot himself.  I don’t remember how long he was in the psychiatric unit of the hospital – a day or two – but that night left a lasting impression on me.  If I close my eyes and concentrate, I can call it up like it was last week.

As I said in my recent post, my dad always had guns, for as long as I could remember.  They were not locked up – they were stored under his bed and in his closet.  We were never taught gun safety.  We never talked about his guns at all as far as I remember; they were just part of the background at home, something I don’t think my brothers or I ever thought much about.  I don’t even know why my dad had guns – he didn’t hunt, and he didn’t hang out at a firing range.  Did he inherit them?  Did he buy them himself?  I have no idea.

Looking back, I feel extremely fortunate that nobody got hurt that night (at least not with a gun).  Or any other time, really.  My dad was often drunk and often volatile.  My older brother was troubled and often violent as well.  It makes me shudder to think how easily something truly horrible could have happened.

There’s no point to this story, really, except that guns are bad.  Especially when in the wrong hands at the wrong time.  And there’s really no way to predict when or if someone with access to a gun might snap.  My dad had a history of alcoholism and violence, but there are plenty of seemingly rational, “normal” people who go off the deep end for one reason or another.  And you know what?  You never hear stories about people with guns saving other people, despite gun proponents’ insistence that bearing arms promotes safety; you hear about people with guns hurting other people.

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