What We Value

I think it’s about time I revisited the concept of ‘disability’, both in its description and in society at large. It seems to me that the word itself is too value-laden to accept at face value. We are all disabled in one way or another and yet we may not see ourselves like that. And why should we? Disability, like beauty, is in the eye of the beholder –or in this case, the beheld. I first wrote about this several years ago: https://musingsonwomenshealth.com/2012/08/31/antenatal-genetic-testing/

The concept is embedded in context, and like two colours mixed together, can result in something totally different. Totally unexpected –even if innocently mixed. I was reminded of this by another  BBC article on Down Syndrome and antenatal screening: http://www.bbc.com/news/magazine-37500189  Once again there was an acknowledgment that ‘”The whole essence of a good screening programme is the counselling you have before you even have the blood test done or the scan done,” says Alan Cameron, foetal medicine consultant at Queen Elizabeth Hospital in Glasgow.’ And, of course, ‘[…] all experts agree that the way a diagnosis of Down’s syndrome is presented can influence whether parents choose to continue with the pregnancy.’ Even unconscious biases affect the way counsellors present the evidence, and none of us is free of these, I fear. We are all tinted by the colours that surround us, after all.

And I suspect there’s no better place to experience colours than riding in a bus.

I happened to be sitting behind two young women, both of whom were carrying their babies in those little vertical hammocks on their chests that tend to wax and wane in popularity. They evidently were strangers, but as newly minted parents, they seemed anxious to brag and peek at each other’s baby.

“She’s gorgeous,” said the one sitting beside the window, glancing at the closed-eyed head breathing quietly in its tight little container on her seat-mate’s chest. I’m not sure how she ascertained the sex so easily, but maybe new mothers are more adept at that than the rest of us.

“Thank you,” said the other, risking a peek at the sleeping baby beside her. “So is yours,” she cooed, cuing a smile and a flutter of her eyes.

“His name is Joshua,” the window lady responded, as if it was essential to establish that from the start. “Names are important,” she added, more seriously. “It means ‘God is generous’, or something…” To be honest, she didn’t sound too certain.

Aisle-woman was silent for a moment. I couldn’t see her face, obviously, and it might have been rude to look, but I thought it seemed an awkward response. “That’s nice,” she said in a carefully neutralized tone, but that kind of thing is hard to determine when you’re sitting behind someone in a noisy bus. “My little sweetie is called Elizabeth…” I could hear the hesitation in her voice. “I don’t actually know what it means,” she admitted.

“It means God is satisfaction, I think,” window-woman said without a pause. “We were going to name him that –if he’d been a girl, I mean.”

“Oh.” Aisle-woman seemed stumped about how to reply, but her neck-language suggested she was none too comfortable with the God references in both names.

They were silent for a few streets, and then, window-woman, unable to contain herself, peeked at the other baby. “They all look so peaceful when they’re asleep, don’t they?”

The woman nodded and felt forced to reciprocate with a fleeting inspection of Joshua as he snored. I assume it was snoring, at any rate, because it was rhythmic and his mother didn’t seem to be doing it. Elizabeth’s mother reached over and loosened Joshua’s hammock with a finger, thinking that might have been the cause. It was an innocent gesture, meant to be helpful –a mother’s instinct in action- but Joshua’s mother immediately grabbed the offending finger.

“He’s okay,” she said, embarrassed at her protective reflex. “Joshua’s just a noisy sleeper, that’s all…”

Elizabeth’s mother stole another glance at Joshua and I could see the edge of her smile, even from behind. “I’m so sorry, I didn’t mean to interfere,” she said, and adjusted Elizabeth’s little hoodie, just in case. “I thought he looked a little puffy… I wondered if maybe it was the hammock.”

Joshua’s mother forced a smile and then turned to look out of the window. “He isn’t puffy; he looks just like yours,” she said in a soft little voice that I found hard to hear.

“I’m sorry,” Elizabeth’s mother said, touching the other’s shoulder gently. “I… I thought I was helping…”

When Joshua’s mother turned her head to respond, I could see a tear rolling down her cheek. She stroked Josh’s little cheek and the snoring stopped for a second or two. “They told us he’d be…different,” she said slowly, “But he’s really a very good baby, you know…” She stroked Joshua again when he seemed to be rousing, and he immediately relaxed and made some sucking sounds with his lips. “I know he meant well, and everything, but the doctor always looked so sad when he saw me during the pregnancy. You know, like he was trying to console me or something…”

I could see a little tear beginning to form in the eyes of Elizabeth’s mom now. “I’m so sorry,” she said as softly as she could over the rattle of the bus. “I didn’t mean…”

But the window-lady had already pulled the cord for the next stop and was starting to rise from her seat. “God really has been generous to us both,” I heard her say as she reached out and gently stroked her neighbor’s baby as she passed. “It’s just that I’m always going to be reminded of that, I guess…”

She hurried through the opened door and I could see her standing out there as the vehicle pulled away, caressing little Joshua but otherwise not moving… As if maybe the answer was another bus…

 

 

 

Advertisements

Medical Revisionism

Words -that’s all they are: sounds that by their very presence magically communicate meaning. They are more than mere noise or background. They are not the wind rustling through the leaves, nor the sounds of a frog in a pond; in a way, they are entities that resolve uncertainty, and in as much as they can be interpreted, contain information. Data. So, in a sense, they transcend Time: the information in the words of an ancient document still exists. But information is subject to interpretation; the same data may be seen as having different meaning as time and societal norms change. But does that change the information conveyed? I think not.

I’ve covered this topic in previous blogs (for example: https://musingsonwomenshealth.wordpress.com/2013/11/01/whats-in-a-name-cancer/ ) but the topic is a source of continuing intrigue for me, so I was once again interested in seeing it broached in an article in the BBC News last fall: http://www.bbc.com/news/blogs-ouch-34385738  It seems we are constant and insatiable revisionists. It’s as if by changing the descriptor, we somehow alleviate the pejoration its ancestor accumulated. And yet the information remains; only the colour changes.

I suppose that this is useful, but I can’t help but wonder if there is some other way of doing it. Of course, some words seemed to have been coined originally with a belittling intent -Cripple springs to mind- and even without our penchant for viewing the machinations of history through modern eyes, the word is disparaging; it is simply not fair. It derives from the Old English word crypel which has the suggestion of creeping. It was a condition in clear need of a new term.

Other words were more naively-attempted descriptions –designations that were no doubt thought to help others picture what was being named. There was unlikely to have been any attempt at denigration -despite how they might now offend or upset us. Mongolism is one such term. According to the New Oxford American Dictionary:mongol, or Mongoloid, was adopted in the late 19th century to refer to a person with Down syndrome (named after John L. H. Down [1828–96], the English physician who first described it), owing to the similarity of some of the physical symptoms of the disorder with the normal facial characteristics of eastern Asian people. The syndrome itself was thus called mongolism.’ But the problem remains –what happens when the term ‘Down Syndrome’ itself also becomes offensive?

Sometimes, it seems to me, the words will also change for no apparent reason. Think of the various expression changes for sexual diseases over the years and the somewhat clumsy attempts to strip the prejudice out of them. When I first started medical school, the expression was ‘venereal disease’ –or VD. Then, when that became too pejorative, or at least discriminatory, it morphed into STD (‘sexually transmitted disease’), and currently STI for ‘sexually transmitted infection’… Or am I already out-of-date? The reason for any of these transformations, however, is totally beyond me.

Words, it seems –or maybe it’s me– just can’t keep up. Maybe, like Fashion, they’re bound to change because of user-boredom or a need for novelty, but I think it’s probably deeper than that. I suspect that it relates more to societal attitudes than societal ennui. And I think that it may be a lost cause to expect consistency of usage. As we change our approach to issues and our opinions, so we change our words to describe them. It starts off with the more curmudgeonly amongst us –usually those for whom tradition provides a stable and secure platform- proclaiming the changes to be ‘political correctness’- to use the current phrase. But then, gradually, sometimes imperceptibly, the expression achieves a common parlance and not using it courts sideways glances, or even incomprehension. It is, perhaps, an aurally measurable example of society’s changing attitudes, if not its mores.

My biggest complaint, however –although minor in the scheme of things- is that it seems a waste of perfectly good words. One of my favourite ones ‘awe’ and its brother ‘awesome’ which used to bespeak a form of reverence, was ripped from my useful vocabulary only a few years ago and I’ve never really gotten over it. The words now have little value -they’re the scrapings from a different, grander time. Crumbs. Leftovers.

I am reminded of the words of Moth, the page of the soldier Don Armado in Love’s Labour’s Lost by Shakespeare: ‘They have been at a great feast of languages, and stol’n the scraps.’ 

Antenatal Genetic Testing

When I bring up the subject of antenatal genetic testing, most of my patients don’t even bat an eye: it’s just what you do nowadays. Of course you want to know as much about your unborn and developing baby as possible! But there are some -just a few- who look at me suspiciously, searching for a reason I suggested it on their first visit. Do I suspect something is not quite right? Are they high risk? I can see the questions on their faces before they answer. The woman will look at her husband with a worried expression, and he will stare down at his shoes. The real question they are struggling with is: What will we do if the test comes out abnormal? Will we terminate the pregnancy -or perhaps even more troubling- will we have to?

No, I don’t think they fear some legal or medical attempt at coercion for termination. I suspect some of them had not even  considered the possibility of an abnormal fetus. Why would they? After all, does one consider the possibility of an accident every time one gets in a car? Or crosses the street..? It is, in other words, a surprise that anyone would confront them with the risks. It’s supposed to be a happy time, a new life, a new journey. I think that what many of them fear is the unspoken assumption that if there is an abnormality, they will want to terminate: an expectation, not a requirement.

Societal expectations are stronger than we realize. It’s often only when we dare to run contrary to them that we feel the strength of the current. Try shopping in a grocery store with a wheelbarrow rather than the supplied shopping cart, or maybe less fancifully, showing up at an expensive restaurant wearing a tee-shirt. You can do either of these things without getting arrested, but would you? Would you whistle at the symphony? Society’s pressures may be subtle, but they are compelling; we are supposed to know what to do and then do it.

There are other pressures to conform that are sometimes even more difficult to spot. A recent study in one of my medical journals looked at how information for patients with abnormal genetic screening (blood tests, ultrasounds, or amniocentesis) was presented. Discussions about Down Syndrome in literature handed out to patients undergoing genetic screening, for example, were purportedly neutral to allow for untainted management choice options. But the information stressed the problems the Down syndrome child would encounter and the problems the parents would confront rather than -and not balanced by, say, the joys any parent might expect raising such a child -any child. At first glance, this seems beyond reproach: the parents need to know what to expect. And yet, if you read a pamphlet on a car you were considering purchasing, and it merely talked of its problems, what’s the chance you’d turn it down and look elsewhere?

Objectively considered, antenatal testing for all of its advantages, could be seen as a type of Eugenics process. Don’t get me wrong, I’m totally Pro Choice: the couple -the woman– should have the right of choice and no one else! And yet I’m struck by the attitude of many in the profession who seem to assume that antenatal screening is there to assure the parents of a good product. And if what it finds is something different -note the word different, as opposed to substandard, or even defective- well then… We are doctors and by definition we deal with health problems -illness, pain, suffering- and we see the world in those terms. It is hard to put that prejudice aside in counselling as much as we might wish. We, too, are affected by the societal currents. Just look at the difficulty we have -we all have- in dealing with expectations or even medical practice models in other cultures less like our own.

And it is difficult to transcend these, try as we might. We are the creations of our own society and its customs and expectations. We are what we have been accustomed to believe, and non-believers often seem odd, even alien. More often, however, we see them as simply being wrong and assume they need to be corrected. Or we convey in our words or expressions that it is their values that are at fault. And yet all choices are value-laden -even ours.

I don’t know that we can ever shed our cultural -our societal- heritage nor that we should even consider this necessary. But a heritage is a wealth of accumulated -and accumulating- customs, values and opinions. It is an ever-expanding, ever-changing treasure that defines who we are and what we think. It is never static, never ossified; and like a parent, should be open-armed, forgiving, and all-encompassing. It is how I would like to counsel those parents before they even receive their results -before they even decide whether or not to be tested.

In a way, it is me that is being tested.