Friday, November 19, 2021

Is the Concept of Torture Breeding Ableist?

I came across a new term - torture breeding. Torture breeding refers to selectively breeding for traits in domestic animals that are believed to result in "pain, suffering, damage or behavioral disorders". Examples include breeding dogs and cats for brachycephaly, bulging eyes, and other physical traits that lead to health issues; breeding spider-morph ball pythons (the morph has near-universal neurological dysfunction), and so forth.

Now, the idea of breeding an animal for an aesthetically pleasing disability does warrant ethical discussion. But more and more, I'm getting concerned that the rampant, vehement opposition to the practice is fueled by ableist views of disability, in both humans and animals.

In this article, purebred dogs of various breeds are described as living a "life of silent torture" for such terrible issues as "drunken gait", dwarfism, paralysis, etc. I've met people with disabilities that have similar symptoms, and most of them would be very offended to hear someone describe their life as a "life of silent torture".

Even when physical pain and discomfort is a result of a condition, that doesn't make living with that condition "torture". I have a mobility condition (joint hypermobility) that, while it has only minimal effects on my physical capabilities, it means that I'm in pain pretty much constantly. I can tune it out pretty effectively most of the time, but whenever I stop to focus on how my body is feeling right now, I can pretty much guarantee, one of the things it is feeling is pain. But I don't feel tortured by my hypermobility. 

I've experienced things that I would describe as torture - sexual assault victimization and ABA extinction come to mind as examples. Those experiences are also in line with what is conventionally described as torture in human rights discussions - obviously sexual assault qualifies, and extinction is essentially equivalent to shunning, a psychological abuse tactic. Living with a chronic pain condition is nothing like those experiences.

Clint's Reptiles, one of my favorite Youtubers, breeds spider ball pythons. He gives his argument for why he considers this practice ethical in this video. He points out that many of the features of his dog - features that are common to many dog breeds and generally not considered a problem even by people who condemn "torture breeding" in dogs - would make him a terrible wolf and unlikely to survive in the wild, and raises the question: what is a defect? His argument essentially boils down to the animal equivalent of the social model of disability, ie, if it's possible for an animal, in a captive environment with a human catering to their needs, to live a happy life, can they really be said to be defective?

Most of the commenters disagreed. One commenter stated:

The question you should be answering is if you'd rather be a spider ball python or a ball python. Not brushing it off as "I wouldn't want to be a snake in the first place." Is a debilitating neurological condition akin to chronic vertigo at all equatable to altered behaviour and floppy ears in an otherwise healthy dog? No. Is it more appropriate to equate it to chronic arthritis and cancer development in dalmatians, considering the degree of debilitation? I think it is, personally.

But breeding a spider ball python isn't choosing for that snake to have spider or not. It's choosing for that snake, who will have spider, to exist or not. If I could choose to cure my joint hypermobility, I probably would. But if my choice was to either live with joint hypermobility or not live at all, I'd want to live.

Applying quality of life arguments to whether or not an individual should be brought into life has always struck me as odd, because how can someone who doesn't exist be seen as benefitting or suffering from non-existence? To me, it makes about as much sense as dividing by zero.

Another commenter stated:

Suppose for a moment that instead of a head wobble, our breeding made the snakes completely blind. Now the snake would not be stressed by this (as it had never known sight to begin with) and could probably still eat (through other senses like smell and feel) and could even live out a life as full and long as any other ball python.

Indeed, if I were blind and someone told me that I could not live as full a life as a sighted person, I would probably be offended, and rightly so. 

Yes, my life would contain difficulties that other people did not have, which would no doubt cause stress, but only because I am human and know the difference, and because the environment humans live in is not friendly to blindness. Pet blind snakes, however, do live in an environment friendly to them, so the analogy is not perfect.

But I would argue that a human that is blind, and lives in an environment friendly to his blindness, even to the point of never knowing that he is blind, is still deprived of something.

So, even if it makes no difference to quality of life, this person still sees a congenital disability like blindness as deprivation, for reasons they didn't fully explain.

Indeed, many commenters drew analogies between disabled humans and animals, with ableist value judgements like this. Clint himself mentioned having seen comparisons between spider ball pythons and autistic humans that struck him as being "in poor taste", and commented that he saw autism as not better or worse, just different.

Ultimately, I do think there are some breed characteristics I would prefer to be selected against, like brachycephaly in dogs and cats. But I don't think everything that could be labeled a "defect" is necessarily a problem, nor do I think that we should morally condemn someone simply for choosing to breed an animal who has a genetic defect. And I certainly don't endorse calling the life of a disabled animal or human torture, or threatening violence on people who own animals selectively bred for defects.

Wednesday, November 10, 2021

Prerequisite Skills

 Prerequisite skills are often discussed in education, especially special education. They can be used appropriately, to help guide a child's learning, but they can also be used inappropriately.

Firstly, many prerequisite skills are stated as absolutes when they really aren't. For example, this Orton-Gillingham training manual states that:


Word recognition is possible only after students develop three foundational skills.

o Phonological awareness: recognition of words within sentences, counting syllables, etc.

o Phonemic awareness: manipulating individual sounds by isolating, segmenting, blending, etc.

o Print concepts: tracking text, words vs. letters, etc.

But what about a profoundly, prelingually deaf child? There are people who learn to read and write before gaining fluency with any spoken language, and indeed without having even ever heard the language spoken at all. I doubt those learners are capable of counting how many syllables a word has or isolating, segmenting and blending individual sounds in a word. Instead, they have learned written English (or whichever language they've been taught in) as a language of its own.

And this isn't just true of Deaf people. There are autistic kids who can read fluently at ages where they struggle with basic verbal communication. This is often dismissed as a meaningless skill, and the children are assumed not to comprehend the text they can read and write, but many cases I've heard have demonstrated reading comprehension and the ability to communicate via text, meanwhile they are nonverbal and inconsistent in response to verbal commands. In addition, this hyperlexia seems to be a positive sign for future development, with most of these children eventually catching up in spoken language, while remaining skilled in written language.

And, of course, not every language has a phonemic writing system. The processes for teaching a logosyllabic system like pinyin, for example, would be very different from the usual learning process for an alphabetic or syllabic system.

In addition, sometimes it's hard to assess prerequisite skills. For example, imagine a child who has significant dysarthria and limited hand use. How would you attempt to determine if this child can isolate, segment and blend sounds? And yet, with appropriate assistive equipment, such as a scanning system and switch, many children with these impairments have been able to communicate through text.

Prerequisite skills have a place. If you're reading that Orton-Gillingham manual because your seven year old dyslexic student isn't able to read and you're looking for a way to teach them, knowing that most kids learn to isolate, segment and blend sounds before they learn to read is useful. You can assess phonological manipulation skills in your student, and if they're impaired, there's a decent chance that remediation of those skills will help your student learn to read.

But don't let this hold you back. If your student isn't making progress in phonological manipulation, or if based on their other disabilities you can tell this isn't a meaningful skill to assess, they can still learn to read. If they could feasibly have phonological manipulation skills but can't demonstrate them, maybe run through some activities with modification, such as telling them to say it in their head because you know they can't say it aloud. If phonological manipulation skills are probably going to be more difficult than reading, meanwhile, maybe focus on more of a whole word approach. Maybe even borrow ideas from instructors who teach reading in other writing systems.

And don't discount skills a child is demonstrating just because your theoretical framework for learning those skills wouldn't predict that they'd be capable of doing such things. Theories can always be proven wrong, and a child's learning prospects are more important than your theory.

Saturday, November 06, 2021

Prenatal Diagnosis and Planning

I've been putting some thoughts into prenatal screening for chromosome anomalies, and what I'd do with potential results. I'm pro-life, so the stereotypical option of "abort anything abnormal" is not appealing to me. But, what plan of action should you have in the case of a prenatal diagnosis if your priority is the optimal outcome for the child? Well, it depends on the specific abnormality found. In my impression, chromosome abnormalities fall into the following categories of outcome:

Probably Insignificant

Examples of this category are sex chromosome trisomies, balanced chromosome rearrangements, and anything that is found to be shared with an asymptomatic parent.


While the child may be at higher risk of certain issues, and XXY and balanced chromosome rearrangements have important reproductive implications for your potential grandchildren, overall, if you hadn't gotten them diagnosed now, there's a decent chance they could have gone their whole life unaware that they have a chromosome anomaly.


In general, I don't recommend doing anything in particular for these anomalies. Most likely, a child with one of these anomalies won't be any different from a chromosomally typical child. If their anomaly has reproductive implications, explain those to them when they reach puberty. And if any symptoms present, treat them as they arise. But don't worry about it, it's not a big deal.

Significant But Not Deadly

Turner Syndrome (monosomy X) and Down Syndrome (trisomy 21) are the two most commonly detected examples of this category. These chromosome anomalies typically have effects that will significantly shape the child's life, and notably increase the risk of life-threatening complications such as heart defects, but the majority of individuals with these conditions do quite well with appropriate treatment. I recommend being ready for the most likely life-threatening birth defects associated with the condition, just in case - for example, make sure your child will have access to a cardiologist if needed at birth. However, you can probably assume that they'll survive, and focus more on planning to help them live their life well.

Life-Threatening/Lethal

These anomalies, such as Edwards Syndrome (trisomy 18) and Patau Syndrome (trisomy 13), are very likely to result in your baby's death, before or after birth. For example, 70% of children diagnosed with Edwards Syndrome at 12 weeks gestation will be miscarried or stillborn. Of the liveborn survivors, with aggressive care, about 75% will die before their first birthday.


The good news is that the longer a child survives with one of these conditions, the better their chances are. Most of the life-threatening defects resulting from chromosome anomalies affect the child right from the start. The survivors either get surgical procedures that reduce the severity of their defects, or were lucky enough not to have the defects in the first place. 


Therefore, if they can survive the deadly neonatal period, they're likely to live for many years, even decades potentially. However, the severe ongoing mobility impairment typical of these conditions (which can result in aspiration pneumonia, pressure sores and other immobility-related health issues), as well as the potential for seizures and other slower-acting issues, means that they will likely always be at higher risk of life-threatening health issues than a chromosomally typical person or someone with a milder chromosome anomaly.


For these individuals, if your goal is to maximize survival chances, they need immediate and intensive care if they are lucky enough to be born alive. You will also likely have to fight with doctors who see these anomalies as "lethal" and recommend palliative care rather than trying to keep the child alive. Unfortunately, many doctors don't see these children as worth the immense effort it often takes to keep them alive. This has been shown to be a self-fulfilling prophecy - for example, under palliative care, only 5% of liveborn children with Edwards Syndrome live through their first year, meaning that aggressive care increases their chance of survival five times!

Unknown

These are the rarer chromosome anomalies, for whom you might only be able to find a few case reports of partially overlapping chromosome anomalies in the research literature.


Their prognosis could be anywhere along the spectrum of the above-listed conditions, and your doctor will probably not know. Unfortunately, many doctors hate to admit that they don't know what to expect, and will instead give you the worst possible outcome as a prediction, so expect to be told a prognosis similar to those typically given for Edwards and Patau Syndrome. Take this with a grain of salt.


My first recommendation is research. The organization Unique has fact sheets on many rare chromosome anomalies, and searching Google scholar can also find you some cases with overlapping affected chromosome regions. If your child has multiple chromosome anomalies (such as an unbalanced translocation causing duplication of one region and deletion of another) and you can only find information for individuals with one or the other anomaly, know that these frequently have an additive effect, with shared symptoms being more severe and potential to experience any non-shared symptoms of either chromosome anomaly. Also, pay attention to breakpoints - if you just look for anomalies in the same broad region, you could end up comparing your child to people whose chromosome anomalies don't actually overlap with theirs. Learn how to read a karyotype - Unique has instructions on this, too. Doctors won't know what to do with your child, so you need to become the expert on their condition.


Secondly, if you can't find good prognosis information, then prepare for the worst, and hope for the best. Be prepared for them to need immediate intensive care at birth, and pleasantly surprised if they don't. Fight to make sure that doctors give them the best treatment possible, knowing that any recommendation of palliative care makes even less sense for these kids than for kids with well-known life-threatening chromosome anomalies. After the neonatal period, prepare for them to potentially be anywhere from totally typically developing to profoundly and multiply disabled, and adjust your expectations as they grow.