Bias: From Normalization to Neurodiversity

La Traducción Próximamente
This is a guest post that I wrote for Un-Boxed Brain as part of a series of neurodiversity posts for Autism Acceptance month. Here is a link to that: B is for Bias.

Society is full of biases. The media and the press are biased towards what they decide to report (or not report, for that matter). People in general have a bias to seek out what is convenient for them personally. Moreover, there are social constructs that were created to justify these biases. “Normal” is an incredibly powerful social construct that is central to the oppression and marginalization of neurological minorities. Its power comes from the fact that it is not a well-defined concept and for the most part completely arbitrary, so this leaves room for there to be a bias for what is labeled as abnormal.

Neurotypicals, the neurological majority, pathologize Autistics and other neurological minorities by labeling our behaviors as abnormal. I will clarify how this leads to us being pathologized later on. Right now I want to note that once they pathologize us they associate that with an intrinsic type of suffering. Then they say abuse is justified because it will bring about less suffering later on. They say that murder is justified because it is a mercy killing. This is bias because their justifications depend on this concept of normal that is not rigorous and that is really whatever they find it convenient to be.

Moreover, it is apparently more convenient for society to do this than to accept and love us as we are. This is because bias allows people to justify why they don’t have the lives they always wanted. It allows them to have something to blame for everything. This is why it’s so convenient, because all human beings tend to avoid accountability. We avoid accountability because we want to avoid the discomfort of having to be responsible for our own lives regardless of the external circumstances.

Similarly, many parents have a bias to blame everything on autism and other neurocognitive variants even when it is irrelevant. This is not to say that life is never harder for the parents of Autistic children, but if they want to use their child’s style of neurocognitive functioning as an excuse for all the problems in their lives, then this will only make them miserable. There is a Buddhist saying: “what we resist will persist.” If they were to accept their child as Autistic they could let go of those thoughts of what their lives might have been had their child not been autistic.

Neurotypicals are biased towards wanting Autistics and other neurominorities to behave in ways that don’t cause them discomfort. Again this concept of avoiding discomfort presents itself. For example non-autistics are obsessed with eye contact and the apparent lack of it in Autistics. They see making eye contact as “normal,” because they are neurologically wired in such a way that it is easy for them to do it. Furthermore, they are the neurological majority, so most people they interact with can do it, too, so when someone does not make eye contact this causes them some discomfort. This discomfort, together with fact that they don’t understand it, leads them to label the act of not making eye contact as “abnormal.” From an autistic perspective, eye contact is so specific, and if one looks around in an environment, there are so many other things to look at. There is nothing more natural or “right” about the eyes of another person than anything else in the environment. The eyes are meant to see things. That’s it. Everything else is social behavior that humans use.

Most humans seem to be wired to make eye contact, but one could imagine a world where that is not the case. It’s easy to do so. Maybe in such a world looking at another person’s feet is what is labeled normal.

There is a bias to label things like eye contact as normal, because the majority can do it so easily without any discomfort. On the other hand, many Autistics do feel discomfort in forcing themselves to make eye contact. Why is it that the discomfort that non-autistics feel in not getting eye contact should take priority over the discomfort that Autistics feel from making eye contact? There is an immediate bias to again label Autistics as abnormal and force them to make eye contact just so that non-autistics don’t feel uncomfortable around us.

This has nothing to do with autistics actually being sick or suffering. Any actual suffering that Autistics experience is extrinsic meaning that in this case it comes from being forced into making eye contact despite the great discomfort this causes us.

The fact of the matter is that in this society people expect us to behave in ways that make them comfortable without any regard for what is comfortable for us.  They are biased towards prioritizing their comfort over ours even if it means abusing us.

This insidious bias for what is considered right or wrong, normal or abnormal, is present even in supposedly scientific fields. In its purest form science is a systematic endeavor that was originally conceived to allow one to seek out the truth in an objective (unbiased) way. However, the way many researchers approach science can greatly affect its use for finding truth. This is especially the case in the social sciences and even more intrinsically quantifiable fields such as neuroscience. Even in the field of neuroscience, researchers not only adopt the terminology that is used by the social sciences, but they may also choose what experiments to conduct based on that terminology.

It seems that in the social sciences everything that is outside society’s bubble of social norms is pathologized. Everything that is seen as “too different” is by default labeled as a disorder, illness, or disease. What’s more disturbing is that in looking into the definitions of disorder, illness, and disease, one finds that all three terms are used to define each other. A disease is some type of disorder, and a disorder is some type of disease. The only time this doesn’t happen is when they are defined as abnormal conditions. (Hence this is how labeling something as abnormal can pathologize it.) In other words, the fact that these labels are not rigorously defined just proves my point that the social sciences and even the field of neuroscience, whose own research is influenced by fields like psychology, have been plagued with scientific biases.

Scientists may perform an experiment unaware of their own bias. This can happen when observations are made and interpreted through the lens of the pathology paradigm.

For example, a test that is supposed to be a way of determining whether the child can adopt an alternative perspective from his own is the famous Sally-Anne Test. As part of the test the researchers introduced some dolls and enacted a story that goes like this. Sally and Anne each have a basket. Sally’s basket contains a marble underneath, while Anne’s does not. Sally gets up and leaves the room. Anne takes Sally’s marble and puts it under her basket instead. Sally then comes back. The researcher then asks an observing child where Sally believes the marble is located. If the child answers Sally’s basket, he passes. However, if the child answers Anne’s basket, he fails. Most of the Autistic kids in this particular test chose “Anne’s basket” as their answer. Therefore, after this study was published, Autistics were labeled as lacking a theory of mind because it seemed like they couldn’t adopt an alternative perspective from their own.

However, it could be argued that the researchers themselves seem to lack a theory of mind, because they are failing to adopt the perspective of the Autistic child. Some modern research shows that Autistic children process more “information,” or at least have more brain activity, than non-autistic children. This seems to agree with what many Autistic adults have noticed from looking at their life experiences living in a non-autistic world. What if, for example, the Autistic child is processing more information or “thinking” more than the non-autistic child?

Well, it could be that the non-autistic child is thinking something like the following. Sally got up and left the room, so she can’t see that Anne just took her marble. Since she didn’t see that, Sally will, of course, think that the marble is still under her basket. Now the thought process for the Autistic child might be similar at the beginning, but then it might diverge from that of the non-autistic in the following way: Sally seems to have no reason to trust Anne. As far as Sally is concerned, she might have gotten up thinking that Anne was going to do that, and she wanted to prove a point. Perhaps Sally does, for the most part, trust Anne, but that still doesn’t mean Sally isn’t thinking that there is a 50% chance it’s still under the basket, and a 50% chance that Anne took it. There are too many unknowns, and it’s really hard to say which perspective is really Sally’s perspective. Therefore, I might as well choose to say Anne’s basket, because at least that represents the truth of where the marble is actually located.

From the above, I could argue that in a hypothetical world where Autistics are the overwhelming majority, it would be non-autistics who would be labeled as having a social “deficit” or being lazy or lacking a theory of mind. The non-autistic child at best would seem close-minded to other possibilities, and appear to be under-thinking. In such a hypothetical world the non-autistic child could easily be pathologized as having a disorder, a disease, or an illness.

What I am trying to say is that not everything that seems to diverge from what society has established as the “norm” is a pathology. True or real pathologies would have to be invariant. In other words, no matter the perspective, regardless of what hypothetical world one goes to, they would still be pathologies. Certain conditions such as Alzheimer’s could be considered true pathologies, because even in a hypothetical world where the overwhelming majority has Alzheimer’s, it would still be damaging to the brain.

Autism is innate from birth. It’s not something that is due to a virus, harmful bacteria, toxin, brain injury, or any type of neurological damage. Autism research has been and is still very much misguided. Even today, since Autism is seen as a disorder, many researchers try looking for deficits, almost as if they could never imagine that an Autistic person might actually be thinking more or processing more. Some recent research shows that certain parts of an Autistic’s brain have a higher level of activity compared to those of non-autistic brains. The pathology paradigm has blinded them because they see it as a disorder, an illness, or a disease. That perspective is already dictating what research they conduct and how they choose to conduct it.

One important thing to note is that I’m not saying Autism is not a disability. Living in a world where everything is not built for or around one’s style of neurocognitive functioning makes it a disability for sure.

Bipolarity, or manic depression, provides another interesting case. It’s characterized by different states, one being the depressive state and the other being the manic state. Interestingly, there are theories that bipolarity developed in humans that lived in places where it is cold for long periods of the year. In essence the argument is that in the manic state, one would go and gather as much food and resources as possible, so that when the cold returns one can, in the depressive state, stay at home taking care of their young. This is also very much the case for many animals that live in those types of environments. Furthermore, the fact that one can imagine a hypothetical world in which being Bipolar is not only not bad, but an advantage can be quite eye-opening. This, together with observations that Bipolars are known for their creativity, would suggest that manic depression is not in and of itself something that is intrinsically “bad,” and not an invariant pathology. Perhaps by the process of natural selection, it is in the human gene pool for a reason. Therefore, again just like with Autism, labeling bipolarity as a disorder is more of a value judgment than a scientific fact.

Note: Even if something is always “bad” according to social standards, it still doesn’t mean it is pathology. Though again it would be a disability, and society should accommodate it. We have to remember that we are talking about conscious human beings and every human being has value regardless of what they can or cannot contribute to society. Thinking otherwise is ableism, and would imply inhumane ideas of eugenics that only some deserve to live. Again, there is a reason why differences in neurocognitive functioning are part of the human gene pool.

ADHD or what I prefer to call Kinetic Cognitive Style (KCS) is another good example.  (Nick Walker coined this alternative term.) The name ADHD implies that Kinetics like me have a deficit of attention, which could be the case as seen from a certain perspective. On the other hand, a better, more invariantly consistent perspective is that Kinetics distribute their attention differently. New research seems to point out that KCS was present at least as far back as the days in which humans lived in hunter-gatherer societies. In a sense, being a Kinetic in the days that humans were nomads would have been a great advantage. As hunters they would have noticed any changes in their surroundings more easily, and they would have been more active and ready for the hunt. In modern society it is seen as a disorder, but this again is more of a value judgment than a scientific fact.

It seems that the pathology paradigm clouds the judgment of researchers. Even with new research contradicting their own views, many researchers seem to be too stubborn to adopt a viewpoint that is not centered on pathology. So much funding is available to research “cures” for these neurodivergences, making it very likely that some researchers don’t adopt a different perspective. The perspective of the pathology paradigm is much more profitable, which could certainly cause bias.

However, this affects other human beings and how society sees them. The pathology paradigm’s truly disturbing nature is best shown when it is plainly expressed. The Neurodiversity Activist Nick Walker articulates it elegantly:

The pathology paradigm ultimately boils down to just two fundamental assumptions:

1. There is one “right,” “normal,” or “healthy” way for human brains and human minds to be configured and to function (or one relatively narrow “normal” range into which the configuration and functioning of human brains and minds ought to fall).

2. If your neurological configuration and functioning (and, as a result, your ways of thinking and behaving) diverge substantially from the dominant standard of “normal,” then there is Something Wrong With You.

This is the dominant paradigm that today’s world uses to bring judgment to the neurodivergences that can be even more fundamentally related to dictating who a person is than things like culture, race, or religion. The brain is effectively the seat of consciousness. It dictates the way one sees the world. Why do we keep dehumanizing something that is so vital to another human being? Why can’t we see the good instead of just something that is supposedly “broken?” Why is it that even “science” has become blind to the truth? Why can’t we at least admit that something should not be labeled as a disorder, an illness, or a disease if there is even a hint of doubt that it might not be the case? It is something that is part of another human being! Why can so few see this? If we cannot change our perspective soon mankind could lose the neurodiversity that is such a vital part of its humanity.

One final thing to note is that some people argue that suffering dictated by how “severe” something is should dictate whether it is a disorder or not. However, this concept of suffering is no better than the concept of “normal,” and has the same ambiguity present that allows for people to have a bias toward what does or does not constitute suffering. It is well known that Autistics that are better at passing or more willing to pass as neurotypical suffer high levels of depression and anxiety because of lack of support. What about other marginalized groups that suffer because of societal oppression? Should they also be pathologized? This concept of suffering would allow for an incredible amount of bias as to what people decide constitutes pathology. This concept of “suffering” is by no means any better than the concept of normal in being well defined, and no less susceptible to the bias present in the sciences and society.

We must adopt the neurodiversity paradigm because it is a perspective that contains less, if any, bias. As shown, not everything that has been labeled as pathology is actually a true pathology, so it makes the pathology paradigm ineffective for scientific purposes. Science should always be approached with an unbiased and neutral perspective. All researchers and the rest of the world need to adopt the neurodiversity paradigm to eliminate this disorder and disease of bias that infects society.

Anuncios

Responder

Introduce tus datos o haz clic en un icono para iniciar sesión:

Logo de WordPress.com

Estás comentando usando tu cuenta de WordPress.com. Cerrar sesión / Cambiar )

Imagen de Twitter

Estás comentando usando tu cuenta de Twitter. Cerrar sesión / Cambiar )

Foto de Facebook

Estás comentando usando tu cuenta de Facebook. Cerrar sesión / Cambiar )

Google+ photo

Estás comentando usando tu cuenta de Google+. Cerrar sesión / Cambiar )

Conectando a %s