Talk:Hemihypertrophy

i have hemihyertrophy. not only do you have a risk to the listed about diseases. you also can encounter blood clots. girls dont use birth control methods with hormones in them. higher risk to blood clots that lead to death. and if you have no financial help. shriners childrens hospital is a free hospital that does everything from check ups to surguries for free. they are located all over the us. call 411. or your local directory.

Change of wording from medical reference was appropriate
A few days ago I altered "Any child with suspected isolated hemihyperplasia should be referred to a clinical geneticist for evaluation," (and similar following statements) to "should be offered" these things, in order to keep the language in line with the proper medical autonomy of the parents.

This has been reverted on the basis that the original wording agrees with the original source.

The source is a medical paper. While I (and some others - see comments on dysphagia below) would like to see medical sources use language that is clearer about patient autonomy, ultimately medical papers are aimed at doctors/other medics and "should," meaning what a doctor should do in order to be in line with appropriate care standards, is not irrational. In the original context: "The diagnosis of IH should be made by a clinical geneticist experienced in the differentiation of IH from other causes of body asymmetry, including regional body undergrowth, seen for example with mild fibular hemimelia and hemiatrophy," the should is an instruction to the health care providers, not to the patient.

However, when such text is modified in wording and context, and brought into a general Wikipedia article with a general audience, the unqualified should language becomes at least equally directed at the patient. This implies that the patient should have this or that done to them as if they were a passive object. It removes the usual important respect for their normal autonomy over their body and how it is handled or used. (Or in the case of parents, their normal authority as those most interested to decide what is in the best interests of their child. That this authority is forfeited when parents commit crimes against their child, does not alter it in normal circumstances - [reasoning from the exception fallacy]).

Therefore, I would argue that medical sources which use "should " do this or that, intending it as an instruction to the doctor, need to have "offered" added to read correctly on Wikipedia or any other general source.

As a person with a disability, I am disproportionately affected by this problem. We spend a lot of time fighting "perpetual minors" attitudes: crudely, a social attitude of "I'm entitled to tell you what to do because I'm healthy and you aren't." And the traditional medical model of disability, which could reasonably be argued to be tied up with this type of use of language ("should," "must," "compliance"), is now generally considered flawed.

I do not, for example, have to be given permission by a genetic councillor before I have children, as the use of "should" in that case (on other articles) suggests: I am entitled to make my own decision according to my own choice of advisors like anyone else. I should be offered the use of such a councillor, but that is entirely another thing. "Should," used to the patient with regard to genetic counselling, is into at least the grey areas of actual eugenics.

Another example of the equalities' element relating to this language problem, involves the management of birth complications. I forget the actual wording which I altered, but the matter in question was along the lines of, "then a caesarean should be done," with no reference to the woman's consent or opinion. I believe doctors ignoring consent in the management of childbirth is typically regarded as a significant woman's rights issue.

While cases where it disproportionately or only affects one group are more dramatic, the problem of being deprived of actual or mental autonomy by the medical "should" can affect anyone; a denial of appropriate autonomy is not rendered morally acceptable because it is not discriminatory!

The comments on consent and, for example, the use of punitive language to induce "compliance," in some of the articles linked to as references, or linked to from those references, on the dysphagia page is also an interesting commentary on the subject - I am certainly not the only person protesting the attitude implied in the medical should when aimed at what the patient should do rather than at what the doctor should offer.

I would seriously suggest, therefore, that altering the wording to add "offered" to "should" when listing medical information of this sort drawn from instructions to doctors/healthcare providers, is both appropriate and important, and that the version of this text that added "offer" should be restored.

FloweringOctopus (talk) 08:56, 16 January 2024 (UTC)
 * While I agree with your opinion on the subject, the source doesn't. Wikipedia says what reliable sources say. It is not a publisher of original thought.  Pepper Beast    (talk)  18:26, 16 January 2024 (UTC)