On Thursday, May 7, All Things Considered aired a report titled: “Some Very Premature Babies Can Survive With Aggressive Treatment, Report Finds.”
Pretty fired up about it, I posted a comment on the page with the report, and to my great shock, it was deleted by the moderator.
I was censored by National Public Radio!!
Having to go out for the evening, I wrote again later, apparently with a more calm approach which did not include the term “murder,” and the post remained.
Then I made another pass, resulting in the version below, and they DELETED IT AGAIN!!
First, the portions of the piece I reacted to:
SIEGEL: They survived, but did they survive in good condition and good health?
STEIN: Well, 18 of 79 of these babies survived, so you can see that it really only helped a small proportion of the babies, and of those who survived, only seven survived without some kind of significant complication. We’re talking about something like blindness, deafness or cerebral palsy.
SIEGEL: But I’m trying to imagine being the parent of a newborn at 22 weeks and being told, we could try aggressively to keep the baby alive. The odds are 3 to 1 that the baby will not survive, and if the baby does survive, the majority of such babies have some severe condition as a result. Sounds like a pretty tough choice to confront a parent with.
STEIN: There’s no question – absolutely. These are agonizing decisions to make, and these data, you know, explain that clearly – that yes, these data show that if you try, you can help some of these babies survive, and some of these babies could turn out to be just fine. But a lot of them won’t make it, and those that do make it will be left with serious complications, so this will help doctors and parents try to struggle through these horrible decisions.
And my post on the NPR site:
There is an extremely problematic — and I’m certain, a wholly unintended message — at play here.
A portion of the survivors, as mentioned specifically here, might have “blindness, deafness, or cerebral palsy” (among other possible disabilities, being the implication by extension, paralysis since 1973 being my particular variety).
Where this became terribly tricky is the suggestion that the risk of a disability could, by itself, be a valid cause to deny treatment, and that it could be ethically appropriate to allow a child with such prospects to die rather than live with the “serious complications” of a disability.
The fact that went unmentioned here is that being blind or deaf or having cerebral palsy on their own absolutely do not determine quality of life. There are a great many people who have these characteristics living full, meaningful, and perfectly acceptable lives; educated, productive at work, with families, being creative and valued members of their families and communities. This is not a rare thing, and it is actually more possible than ever in history for people with disabilities to be normalized and thrive as much as anyone else might in our dramatically transformed society.
The fact that we now have the capacity to save the life of a premie is precisely one of those transformations. Since we can save these lives, we must commit to a world in which those lives are lived. They unquestionably can be.
In the interest of making an informed decision, parents facing the emotional intensity of such a decision just following a premature birth need to be told this. The life of that child — which I’m sure we all agree must be held precious and not surrendered lightly — is at the mercy of many prevailing (but highly questionable) beliefs that having a disability by definition precludes a quality of life. This is simply not true.
A parent who is poorly informed on this point teeters dangerously on what is essentially a eugenics perspective: a child with a disability will only suffer, be a burden on their family, and on society, and therefore it is right and just to allow that life to end before it starts. This is the line we are dancing with in the essence of this report. Sadly, blatant eugenics beliefs have yet to be expunged from our culture, having once been quite popular (to the extent of sanctioned forced sterilization to prevent the propagation of disability, for instance).
There are surveys which indicate that a majority of health professionals consider a person with a disability as having a poor quality of life, and that for those with what they consider “severe” disability (the term used here) they would consider it appropriate to deny aggressive measures to save such a life. Yet people surveyed with “significant” disabilities (the preferred term) are statistically just fine with who they are and the quality of their lives, thank you, and rightly fear, based on the aforementioned studies, that they would be denied the level of life-preserving care others get as a matter of course.
As well-informed journalists who should be versed in modern day disability awareness, either Mr. Siegel or Mr. Stein should have made the point when blindness et al was mentioned that these need not preclude a high quality of life, and therefore withholding treatment on that basis alone is problematic at best.
In fact, withholding treatment because a child would have a disability is, in essence, tantamount to murder.
It is a grave ethical line we cross when we decide it is acceptable to surrender a life because a child might have a disability.
In the report, Mr. Stein says, “…some of these babies could turn out to be just fine…”.
Who says that someone who is blind, deaf, or has CP can’t be “just fine”? Far too many people with disabilities of all kinds and degrees would passionately beg to differ with the notion that their lives have no value.
Here’s the actual NPR report on All Things Considered. Listen for yourself.