Why We Need HB 1337: A Story

sedem and nick

Synchronicity can be so ironic. Take the confluence of two events in my life recently.

First, the other morning, my daughter Joan sent me word about an effort her friend organized to raise awareness about (and funds for) Sedem, a Ghanaian boy with Down syndrome who requires heart surgery – just like Joan’s little brother, Nick, who also has Down’s and who required heart surgery when he turned one.

Later that same afternoon, I got an email alert about House Bill 1337 which, among other things, promotes alternatives to abortion for kids like Sedem and Nick. Governor Pence supports the bill, and apparently he’s getting hassled about it from doctors and pro-choice advocates.

So, on the one hand we have college students advocating for the poor and most vulnerable, doing what they can to help those who are still marginalized in our world, even in this enlightened age. On the other hand, we have those who claim that some poor and vulnerable – kids with Down syndrome for example, kids like my Nicky – don’t deserve a chance at life. That the world is better off without them. That the easiest way to deal with their challenges is to deny them the light of day.

Ironic, don’t you think? And the contrast between the two groups is sad. So sad.

Those of us who love people with special needs – and who are loved by them – know that the group opposing HB 1337 is simply wrong. Governor Pence, stay strong. The bill makes sense, and you’re right to support it, no matter the political fallout.
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A version of this letter originally appeared on the St. Joseph County Right to Life website. Governor Pence signed HB 1337 on March 24, 2016, and the law now states, “Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex, or diagnosis or potential diagnosis of the fetus having Down Syndrome or any other disability.”

Of Planned Parenthood, Politics, and the Catholic Glass Ceiling

220px-Bob_Casey_1986

Because I’m pro-life, my religion is always thrown in there like some little code word saying, “Watch out for this guy. He’s a Catholic. He’s one of those people.”
~ Robert P. Casey, Sr.

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Of Catholic Schools, Down Syndrome, and Hospitality

Julian of Norwich

He willeth we know that not only He taketh heed to
noble things and to great, but also to little and to small, to low and to simple.

For He willeth we know that the least thing shall not be forgotten.

~ Dame Julian of Norwich

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An Ambassador at Our Lady’s University

Hard weekend for Irish fans – at least football-wise.

It’s been tough enough that a season launched with such promise could falter and fall so abruptly, but there was at least the hope – an assumption even – that the team would land a win for the seniors’ last home game.

Alas.

Even so, there’s more to Notre Dame than football – if you’re a true fan, you already know that. So, for all you true fans smarting from our team’s recent losses, ville.0here’s a happy story from last Saturday to ease the disappointment.

My family and I have been Irish fans long before my oldest, Ben, matriculated this fall at Notre Dame. He’s doing well and keeping busy – we rarely see him even though we’re mere minutes away. Still, we always know he’ll be in the stadium for home games, and we have fun trying to pick him out when the cameras pan the student section.

This past weekend was different because a friend surprised me with a pair of last minute Louisville tickets on Friday afternoon. “It’ll be rainy,” she said, “but not as cold as it was for the Northwestern game.”

I assured her that weather was not an issue, and I gratefully accepted her kind gift on behalf of my family.

Like I said, we’re big fans, but we don’t get to many games on account of (cough, cough) “budgetary constraints.” However, over the years, thanks to occasional splurges and the generosity of others, we’ve managed to get most of our kids to a home game or two – with the exception of our two youngest, Kath and Nick. Kath is only eight, so she’s just now at an age when she’d appreciate the game day experience – we’ve got plenty of time to make that happen yet.

Nick, on the other hand, is already eleven, and he’s the fiercest ND fan of us all (with the possible exception of my wife). He roots and hollers and whoops when we score – “GO IRISH!” he roars ferociously whenever there’s a pause in the revelry. No question: Nick was going to his first home game.

Saturday morning, we deliberated as to who’d take him. Nancy was up for it and reluctant to pass up the opportunity, but she had some work to finish up that evening. I lucked out.

“Nick, guess what?” I asked him. “We’re going to the Notre Dame game today, you and me!”

1383871_10152804864518686_1764748065031248725_nHe was confused – go to the game? Like…go to the game? I told him it was true, and that we’d probably get to see his brother there as well – maybe even sideline reporter Jeff Jeffers, whom we know from church. Nick’s one word response (accompanied by a fist pump): “Yes!”

After lunch, we bundled up and grabbed a heavy woolen army blanket – just in case. Nancy dropped us off on Eddy Street, and we joined in the hoopla as we made our way to the stadium parking lot. We’d made arrangements to meet Ben at Legends, and it was a happy reunion when we saw him coming our way.

“Hey, Nicky!” he yelled. “You going to the game today?” Nick ran into his arms. We chatted a bit, and then Ben took our picture with his phone.

“Classic,” he commented.

“Be sure to send it to me,” I replied. He promised.

By then, Nick was ready for some stadium fare, so we said goodbye to Ben and headed to the gate. Once inside, it was hotdogs and popcorn and Sprite…and then another hotdog, even before we started migrating to the stands. I got a little confused about our section number, and we ended up in a line that wIMG_20141122_142633ould’ve put us in the student section. Before I realized my mistake, we approached a young woman distributing miniature gold pom-poms. “Hey, Nick,” I said as came up, “you can get a shaker for the game!”

“Sorry, sir,” she apologized, “they’re only for students” (pause, glance down at Nicky), “but I have one for him.”

Now, understand that my Nicholas has Down syndrome, and we’ve discovered you can tell a lot about people by how they respond to him – almost like he’s a character barometer. I mean, how can you look at a kid like Nick and not melt? You’d have to be pretty callous – the kid’s pure love. Maybe that ND student-worker would’ve made a pom-pom exception for any eleven-year-old making his way into the stadium, but I like to think that she was especially motivated by Nick’s particular Down’s shine.

And it was the same when we were entering the stadium and buying our grub – smiles, beaming smiles all around at Nicky. And likewise when we got to our seats: Whereas I was just another ticket holder with a bulky down coat, Nick…well, Nick was more, especially during the national anthem.

“Don’t forget to put your hand over your heart,” I reminded him.

“No, papa,” he said soberly, as he formed his fingers into a salute. “I’m a Cub Scout, so I do this.” More beaming smiles all around.

It’s like he was an ambassador, and people changed when they saw his beautiful face – they lightened, they softened, they mollified. Even into that first quarter on Saturday, when the score went lopsided against the Irish so early, Nicky helped us keep it in perspective. After all, he was so happy just to be there! He was in Notre Dame stadium, and there was the marching band, and there was #5 – Everett Golson himself! – right down there on the field.

Score? What score?

Special needs’ kids and Notre Dame have a pretty tight relationship. I know that many ND students get involved with South Bend’s Logan Center in various ways, not to mention Hannah & Friends, founded by former ND coach Charlie Weis, as well as Sharing Meadows in nearby LaPorte County. Those are all excellent programs for the students, but Nick’s reception on Saturday illustrates something beyond programs – something about Notre Dame’s culture itself. marthaartworknd_landmarks

It’s a culture that we also saw on freshman orientation weekend last August as we attended events as a family with Ben. The students, the staff, the other anxious parents, and the volunteer alumni – everyone noticed Nicky. My wife especially observed it at the picnic dinner in the South Dining Hall on Saturday. The smiles, the looks, the whispers of delight.

That says something about Nick, of course, but it also says something about Notre Dame. It’s a place that seeks to form its members to be welcoming and receptive, especially of those less fortunate – the opposite of the “throwaway culture” that prevails today according to Pope Francis. The Holy Father’s remedy is exactly what we’ve observed at Our Lady’s University, at least when it comes to our Nick: The building up of a “culture of encounter, solidarity, and hospitality” toward everyone, especially the most vulnerable.

What with the rain and the long walks up the ramps to our seats, Nick was pretty much ready to go home before the half. We said our goodbyes to those seated near us, and we headed out of the stadium to the bookstore where Nancy was going to pick us up.

“Well, Nick, your first home game experience,” I said as we walked. “What was your favorite part?”

“The food,” he replied without hesitation. “And seeing Ben.”

If you ask me, it was the smiles. I guess it’s all in the perspective.

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Of Brain Death and Climate Change

It just so happens that your friend here is only MOSTLY dead. There’s a big difference between mostly dead and all dead. Now, mostly dead is slightly alive.
~ Miracle Max

As you bundle up, you can’t suppress the wry grin.

First, there’s the plummeting temperatures which never seem to make it back up to seasonal lows. Then, the snow keeps coming down, and down, and down. And that old pair of long underwear in the dresser somewhere? You’re digging it out, and maybe buying a second pair. And then a third.

At  this point, you can’t help grinning – maybe even chuckling – because the conditions outside are in such stark contrast to all those dire warnings we used to get about global warming. “Bring it on,” we say to ourselves now – but not out loud. Our shivering and senses might suggest that global warming is a bunch of malarkey, but we keep such thoughts to ourselves. I mean, we don’t want anybody thinking we’re nut jobs or intellectual cretins! No, sir!

But this isn’t a rant about climate change in any case. People way smarter than me think it’s legit, and I’ll grant them the benefit of the doubt. Still, it is difficult to take them too seriously in the winter – at least ’round these parts. Al Gore and the government, researcherFrigidColdLows_2Day.pngjan3s and the media keep telling us one thing; our numb fingers and toes tell us another. That’s not very scientific, I know, but it is experience – it is real – and it does affect our willingness to buy what the experts are pushing.

Put another way, my cold-consciousness coming up against the global warming ascendancy represents a significant aesthetical reservation – aesthetic in the old sense of the word, denoting sensory experience as opposed to abstract knowledge. What my senses tell me seems to contradict reason – or at least the reason of those in the know. And that’s why those in the know have to keep telling us global warming is real, because our senses are telling us something so different.

This is the very same dilemma I face when considering so-called ‘brain death’ – a phenomenon that has been in the news a bunch lately. ‘Brain death‘ is shorthand for death determined by neurological criteria, and unlike the traditional definition that relied on cardiopulmonary evidence – no heart beat, for instance, and no breathing – declaring death neurologically is downright tricky. It relies on human judgement to make a decision regarding an ailing individual’s brain function: Is it there? How much? Is it all gone? And then, there’s this kicker: Even if it is determined to be all gone (the essence of brain death criteria), the person’s heart will keep beating on its own, as long as the lungs are mechanically assisted to breathe.

We’re left, then, with a ‘dead’ brain in a body being perfused with oxygen-rich blood by a living heart. The individual is non-responsive, but his limbs are supple, and his skin, pink and warm – it even heals when it’s wounded. Is such an individual really dead? It’s hard to believe, and that’s why the experts have to keep telling us such people are ‘dead’: Just like climate change, our senses tell us the exact opposite.

This surreal realm of defining death neurologically regularly leads to the kinds of absurd situations that we’ve been hearing about in recent weeks. For example, there’s the ‘brain dead’ pregnant woman in Texas whose family wanted her taken off ‘life’ support, but whom the hospital ‘kept alive’ until recently for the sake of her unborn baby. And it was the reverse problem for the ‘brain dead’ teen in California whom her family wanted to take home and care for, but whom the hospital insisted be taken off ‘life’ support until a court intervened.

Note that I keep bracketing words and phrases with mini-quote marks. That’s because the semantics of brain death don’t lend themselves very well to deliberation without constant clarifications and re-definition of terms. ‘Life support’ is a good example. Think about it: If a person is dead – really dead, ‘gone to meet her maker’ dead – then what purpose does ‘life support’ serve? It’s grisly, almost Frankensteinian, to consider what kind of ‘life’ is being supported.

The quotation marks are also necessary because, even after almost a half-century of neurologically defined death, nobody is quite sure when it applies. Consequently, and not surprisingly, ‘mistakes’ (there’s those quote marks again!) are made all the time – including, most recently, that teen girl I mentioned above. Her name is Jahi McMath, a thirteen-year-old from Oakland who suffered complications following a tonsillectomy. Declared brain dead by physicians, the hospital demanded that her plug be pulled. However, once the family finally got her home, and began providing care denied her in the hospital, she started to make definite progress – and was apparently very much alive.

We can’t blame the hospital, forprincessbride11 Jahi was ‘technically’ dead according to the experts – and hospitals are meant for living people, not dead ones. Instead, one can legitimately ask: Did the docs who declared her dead make a mistake? Or was she miraculously revived? Who knows?

In any case, situations like Jahi’s – and there are plenty of them – throw the whole brain death idea into doubt, and personal aesthetic experience only further undermines trust in the abstract assertions of diagnosing authorities. As a former oncology and hospice nurse. I’ve been around a lot of dead bodies, and I can assure you that there’s no question they’re dead. Cold and stiff, corpses can make you uncomfortable, but you don’t wonder if they’re ‘slightly alive.’

‘Brain dead’ bodies, though, aren’t like that, and consequently defining death has become quite controversial. The Magisterium understandably defers to the medical community when it comes to defining death, but that itself is the crux of the problem: The medical community is divided on the issue, as are Catholic bioethicists and moral theologians.

Nobody doubts the old death criteria – lack of heart beat, lack of spontaneous breathing, and other obvious, objective signs – but there’s a worrisome lack of unanimity among Catholic authorities when it comes to brain death. There are physicians and ethicists adamantly opposed to the criteria, and plenty who are just as adamant in affirming them. Yet if there’s a such a pronounced lack of unanimity on such a critically important subject, shouldn’t we err on the side of caution? Shouldn’t we err on the side of life when considering a brain death declaration, especially when our senses tell us that life continues? Arguments about integrative function and proportionality aside, it seems more aesthetically fitting, more seemly – more humane, even – to allow a brain-injured person to die utterly and completely (i.e., no heart beat, no mechanical breathing) before proceeding with grieving and whatever else comes next.

So, back to the aesthetics of climate change for a moment. Our senses tell us that global warming is a farce – we feel like it just can’t be true – and we bring that sensory experience to bear when we examine the evidence, pro and con. I imagine even diehard environmentalists can see the humor in talk of global warming when the mercury stubbornly hovers around zero – it’s funny because they’re out in it themselves! But the preponderance of scientific evidence does seem to come down on the side of climate change models that can account for steadily rising temperatures around the world. Again, I’ll concede the point.

That being said, what I do about it – whether I heed the warnings and make adjustments to my driving and other habits to reduce my carbon footprint – is another thing altogether, regardless of what I might conclude regarding the merits of the climate change case. Global warming, as a theory, has significance for researchers, political leaders, and policy makers, but not for average schlubs like me. It’s just fodder for jokes when I’m revving up the snowblower. Even assuming global warming – and our contribution to it as fossil-fuel consuming humans – my actions today won’t have much affect on organ_donormy world tomorrow. In the aggregate and over time, yes. But as an individual, right now? No. It’s cold and I have to get to work, so I’ll drive, global warming or no global warming – until some bureaucrat decides I can’t any more.

But I’m reluctant to take brain death so lightly. The aesthetics are too disturbing – and the ‘mistakes’ too numerous – for average folks to leave it to the experts and authorities. Let me put it this way: When my teens get their driver’s licenses, there’s always that awkward moment when they’re asked for the first time about organ donation preference. They’re old enough to decide for themselves, but if they ask for my input, I tell them to skip it.

Yes, we should be generous, I tell them; yes, John Paul II instructed us to be unselfish with regards to organ and tissue donation. But most vital organs can only be transplanted from ‘brain dead’ donors who are being kept ‘alive’ on ‘life support’ – qualifications which seem to fly in the face of Pope Benedict’s insistence that “individual vital organs cannot be extracted except ex cadavere.” The Latin for ‘cadaver’ is left untranslated in the original as if to underscore that there should be no question whatsoever that a human body is really dead before its vital organs are removed. And he also spells out the implications for brain death declarations as well:

In an area such as this, in fact, there cannot be the slightest suspicion of arbitration and where certainty has not been attained the principle of precaution must prevail (emphasis added).

With so much up in the air about this stuff – so much confusion regarding how death is defined and how those definitions are applied – I’ll avoid volunteering as a whole organ donor as long as they’ll let me.

In other words, short of a definitive declaration from the Magisterium, it’ll be a cold day in hell before I encourage my children to be vital organ donors. And that’s climate change we’re unlikely to see for a long, long time.

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Versions of this story appeared on Crisis and LifeSiteNews.

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