The Social Construction of Disease/Disability

Simona Zlatkova, a college student with personal experience of living with disabilities, discusses the social construction of disease and disability in a podcast. She shares a historical perspective on society's perceptions, from ancient civilizations viewing disabilities as curses or divine beings, to the Christian belief of disabilities as punishment for sin, to the shift in attitudes during the Renaissance period emphasizing individual worth. The 19th and early 20th centuries saw negative stereotypes and cruel treatment towards disabled individuals, including the eugenics movement. However, after World War II, perceptions started changing with the integration of marginalized groups and the disability rights movement gaining traction. In the present day, Simona notes a regression in attitudes, particularly evident in negative comments on social media. She also discusses cultural perspectives, highlighting the extreme views in some Nordic countries and the belief in magical charms ass Hello, ladies and gentlemen in all various life forms on earth. Without further ado, let's get on to this podcast. Question number one. Give us a brief introduction of yourself and your topic. My name is Simona Zlatkova. I am a sophomore in college taking philosophy with Dr. Milski. And my topic today for the podcast will consist and be of the social construction of disease and disability. Question number two. What gave you the inspiration for this specific podcast topic? Well, the inspiration was mainly myself. A little medical back story about me is I was born with a couple birth defects. So I have hemifacial microsomia, which means severe facial asymmetry, as well as bilateral microtia, which means both my ears were underdeveloped from birth. And this is a birth defect, by the way. I've always had this. I'm now an adult and I've had various surgeries to correct these issues. And we'll probably still need more surgeries in the future just to, like, maintain everything because things go out of alignment. But as someone growing up with a severe craniofacial defect, I have noticed our society's horrible treatment towards people with disabilities and diseases. So having that firsthand experience makes me really knowledgeable about this particular topic. I mean, also, I study it, but a mixture of both really solidifies everything. In a sense, it gives me a little bit more credibility and the foundation, which I need in order to talk about this topic and dive into it a little further. On to question number three. Can you give me a historical perspective of society's perceptions of disability and disease stemming from ancient civilization to, like, the 21st century or present day? Let's take a look at some historical perspectives because it is important to look at the history of everything, especially, like, disabilities and diseases. So we can see how far along we've come or how not far along we've come, depending. But from ancient civilizations, during that time period, people considered people with disabilities to be, like, cursed or to be divine beings. They were attributed with supernatural causes because at that time period, people didn't know much about medical anomalies or even the human body. They didn't know how even, like, babies came from. Everything, like, science wasn't a thing, really. People just weren't knowledgeable about a lot of things, and they got a lot of things wrong, too. Then there was the medieval period, and that was when a lot of the Christian beliefs started taking over, so everything was centered around that. And people with disabilities were viewed as, like, God's punishment to man or as, like, a consequence of sin. So some people were afraid of them, and some people weren't. It was, like, a mix. Some Christians believed that we should be caring for people with disabilities, you know, the duties, charity and care, while others were just, like, scared. Then there was the renaissance or enlightenment period, which a lot of people are having debates and saying that medieval period had more rights than the renaissance did. They started to focus more on science and reason and actually discovering more, like, medical explanations, especially for people with disabilities. And we just saw, like, a shift in attitudes in that time period, especially emphasizing the inherent worth of individuals. And then there was the, like, 19th century and early 20th century. At that period, we just shifted back. We basically backpedaled again because the Industrial Revolution and also urbanization led to society becoming more competitive and focused on productivity. So since they viewed disabled people as unproductive, it kind of gave, like, a negative stereotype to them. There was also the rise of institutions, like mental institutions or institutions for people with disabilities that occurred in that time period. And that wasn't a good thing because it basically just locked people away for the dumbest reasons. It was a lot of cruel treatment. It wasn't proper treatment. It was cruel treatment. There was also the rise of the eugenics movement, partially due to Nazi Germany and a desire to create an Aryan race. So that all happened in the early 20th century. Forced sterilizations and institutionalization was a way to control reproduction and supposedly improve genetics or eugenics. Because of that, a lot of people with disabilities were being killed simply because they didn't have the proper genetics. It was just extermination at that point, a form of eugenics. However, after World War II, people's attitudes or perceptions started to really change about disability because a lot of soldiers became disabled, so they became disabled veterans. So disability was now viewed as heroic because these soldiers were heroes. There was also a lot of labor shortage due to the draft. Many people were signing up to fight in wars, so there was a job shortage and they needed people to fill up those jobs. Not only people with disabilities that were joining the job market, but also a lot of women were starting to enter the labor force during that time period. So it was a change, a significant change. Finally, marginalized groups were integrated into society. And then we have the mid to late 20th century, which was from 1960 to 1990s. Now that period was a time of great, great change. There were many reforms. The Civil Rights Act in the late 1960s. The deinstitutionalization movement. Also the American with Disabilities Act that passed in the 1990s. All these reforms and laws helped integrate marginalized groups and people with disabilities into society. People started to see the inherent worth of all individuals. So there was a lot of advocating for equal rights and opportunities and treating humans with compassion and empathy. I will say though, the disability rights movement kind of gained popularity later on after all the racial issues. Probably by the 1980s, 1990s. That's when it gained traction because that's when the ADA or Americans with Disabilities Act was passed. It was passed to protect the rights for disabled people to have advocacy. And now to present day, 21st century. I'm not going to lie, it seems like we're backtracking again. It seems like the pendulum is shifting back. Because I see a lot of nasty, horrible comments on social media about people with disabilities. A lot of ableist things. I'm not surprised because the same thing is happening with the feminism or anti-feminist movement. There seems to be a deep hatred for women online, especially by a lot of men. But the fact that we made so much progress, only for it to be stripped away from us possibly, is just really disheartening. I'll touch more on this topic in a little bit, but let's go on to the next question. How do cultural perspectives play a role regarding disabilities or disease in today's society? This is the part where I don't agree with cultural relativism. Because some cultures really do not like disabled individuals. One example is Northern Europe, like in the Nordic countries of Denmark, Netherlands, Iceland. They're trying to completely eradicate people with disabilities, people with Down syndrome. So eugenics has gained popular support in those countries. Because they're trying to breed out or eliminate fetuses with disabilities. I would argue that it is extremist behavior. I mean, Nordic countries do have a different mindset compared to people in the United States. People in the U.S. tend to be much more accepting of disabled people. And I will attest to that. But compared to Europeans, if I grew up in Bulgaria, my life would have been a hundred times worse than it is here. It is socially frowned upon in Europe to be disabled or to have a disabled child. People are really mean there. People are brutally honest, in a sense. But it's just not a welcoming society. Another example is cannibalism with albinos. There's witch doctors who are hunting for albino kids or albino people because they want to eat their body parts. They believe their body parts have magical charms or they bring good luck. So many countries in Africa, like Congo, Kenya, Uganda, and a lot of other countries there, will eat their organs, their legs, their genitals, their eyes, their hair. People with albinism are really affected. This, again, is just going back to the ancient civilization type of mentality where they think having a disability is often attributed to supernatural powers, causes, like individuals with disabilities being regarded as cursed or divine. Or if you eat their body parts, you're automatically going to have good luck or have good fortune. I don't know. It just depends on society's beliefs. Religious beliefs still affect people's perceptions towards people with disabilities. That's similar to medieval thinking. Some Christians still consider disabilities as a consequence of sin or God's punishment. They might see a disabled person and try to, like, stay away from them or be fearful of them. Cultures can definitely be wrong, and in this case, they often are because they're ignorant and they believe in really strange things. On to question number five. How does the media portray people with disabilities? Are they represented well or poorly? Are they underrepresented? Disabled people are not represented well at all. They're very underrepresented in media. I remember in 2017, a movie called Wonder premiered, and it was a story about a boy named Augie who had a craniofacial defect called Treacher Collins Syndrome, and it's a rare genetic condition that affects the child's, like, face and also ears, cheekbones, jaw, ears, eyelids. Treacher Collins Syndrome is also very similar. It's a very similar condition to mine, but it's not the same. They are different defects, although they share similar characteristics. Mine is hemifacial microsomia and bilateral microtia. Mine is usually not genetic, so it happens by chance, but Treacher Collins Syndrome is genetic. So I remember when that movie came out, there was a little bit of controversy or backlash because the character who played him was, quote-unquote, like, normal. He didn't have Treacher Collins Syndrome. Instead, he used prosthetics that mimicked as if he had this facial disfigurement, and people really felt that someone who had this condition should have played him, like, should have been casted because if the goal was to spread awareness about craniofacial disorders and the goal was for more representation, why didn't you just cast someone that fit into that, who actually belonged into that marginalized group? That almost felt like a slap in the face, in a way, because there are many, many children who have craniofacial disorders who are dying to be represented, who could have had that opportunity in the spotlight to be in a film, you know? Instead, it was just casted by someone who didn't even have the defect. So that's why people were upset about it a little bit. However, overall, the movie wasn't that positive because it did bring a lot of awareness. But like I said, there's just a lot of underrepresentation in social media and, like, the film and television industry with casting disabled individuals. Besides that, social media is getting extremely toxic in terms of pretty privilege. There's been a spike or a rise in plastic surgery in the past decade. Everyone wants to be young, fit, beautiful, symmetrical. People apprise on facial symmetry, as well as everyone's trying to be, like, the next influencer. They're all trying to get sponsorships and ads or modeling gigs or even possibly become, like, celebrity status. And the first thing people tend to look at or prioritize is your face. That's the first thing people see. And I will say social media is getting really nasty in the comment sections, especially on TikTok and Instagram. That's one downside to it. There are a lot of social paradigms or expectations of how other people want disabled people to live their lives. Like, one is people keep saying that disabled people should only get with other disabled people or people wanting to date people that are on their league, you know, not above their league or below their league. Which I just find interesting how all these socially constructed attitudes really shape our own beliefs when I don't think it matters like that. But I guess society does have a hold on us because certain things are socially frowned upon. I know that, like, facial symmetry is a big indicator of genetic abnormalities. And oftentimes people are trying to find the best partner to be with or have kids with, you know, mate with, because they want people with the best traits so they can pass those traits on to their kids. So dating can be tricky, especially with people with disabilities or craniofacial defects like myself. However, I will say that we as human beings, we cannot have it all. We all have certain advantages and disadvantages. We all have privileges, like being in a developed country, such as the United States or even European countries. One might call that an advantage, even if you have a disability, compared to living in a third world country. That's one advantage. Or you can be really good looking but have severe mental health problems and be extremely suicidal. So I can't say that looks account for everything because they don't. Also, there is the is-ought fallacy. And that is just because it is that way doesn't mean it should be or doesn't mean it has to be. You can always overcompensate with your other traits, like your character or virtues, your personality. You can be funny, you can be intelligent, you can be, like, talented, athletic, artistic, creative, whatever it is. So there are definitely other aspects people look for besides your physical attractiveness. I mean, plus we all age, so this is all temporary anyway. Another thing I've noticed that the media does is they showcase people who have cute disabilities or defects, like people with albinism. Because they fit the beauty standard, they're highly sought after and praised in modeling agencies or in social media. Even though having albinism itself is not cute because they have a higher increased risk of melanoma and they have vision problems so they can't see well. So it does take a toll on them, but I guess no one cares unless you're pretty. Overall, the media does a really poor job when it comes to representing people with disabilities. There's also a lack of representation of disabled people posting themselves online. Due to the backlash and bullying they receive, all the ableist comments dare to post themselves and spread awareness because of that. Disabilities and diseases are far more common than people think. 1 in 33 people are born with it. And at some point in our lives, all of us are going to eventually become disabled sooner or later. The human body is very fragile and it's a ticking time bomb. Next question. Does the language we use to describe disabled individuals affect our perception of them? And the answer is yes, absolutely it does. Because using specific language dehumanizes or paints a negative light and leads to stereotypes. Honestly, it is all psychological. Certain words have offensive histories or negative connotations behind them. And when we normalize these terms in our language and in our society, we do oftentimes end up mocking marginalized groups because of those negative underlying implications of those words, as well as their problematic origins. So some examples that are degrading for disabled people. Offensive terms like if you called someone disfigured, deformed, even like retarded. Pretty much those. I mean, there's other ones I'm not going to get into. Then there's some words or terms that have like a mixed reaction. Some people like them, some people don't. Calling something a deformity, a disorder, a disease. Depending on the person, they'll perceive it differently. And then obviously there are alternative terms to use. You can say, you can lighten the blow by saying something like abnormality or differences or anomaly, instead of saying disfigured. That's a lot harsher. But there's a question whether we should even purge these words out of our language, you know, completely, or whether we should accept them. Should we erase these words? Should we keep them? Honestly, my answer would just be to use other alternative words. Because even if you try to purge these words, people will just come up with something, like with another alternative that's probably worse or the same. I don't think it's going to do anything if you purge the language. However, I do think people should be more conscious and aware and careful when using certain words. Along with that, I will say I have noticed a disability hierarchy or disability privilege in our society. There are different attitudes towards different kinds of disabilities, which in the end of the day just reinforce ableism again. For example, people tend to be more sympathetic towards people with cancer, because it is so familiar and common. Or people with invisible illnesses also get treated far better than their other disabled peers, because they fit into the able-bodied standard. They are perceived to be normal when they could be suffering from cancer or organ failure, like a life-debilitating disease. But the world still perceives them well, because they don't know how much they're suffering. People with birth defects, specifically facial birth defects or cognitive disorders, like autism and Down syndrome, probably get the worst treatment in society, because it's so noticeable, like they can't really hide their disability. And oftentimes people just fear and judge what they don't understand. So people are ignorant, and especially if you have a rare condition. So, yeah, having a disability does lead to a lot of social-related issues that haven't been addressed so well. There is a lack of social acceptance. There are stigmas, there are stereotypes, there's beauty standards. Their social life can really be affected deeply. However, there are great resources and networks where people can connect and find a sense of community, such as Facebook groups, which are very helpful. And honestly, social media sometimes can be helpful too, like Instagram and TikTok. Just spreading more awareness or finding other people that have similar backgrounds or diseases and disabilities as yourself. I answered my question, does society perceive and treat you differently depending on which disease you have? And I already answered it, and the answer is yes. So next question, what is society's attitude towards disabled people having reproductive freedom? And, oof. Society seems to hold this attitude that it is morally irresponsible to deliberately produce children with disabilities. If you have a genetic defect and you could be like a carrier of it, it would be irresponsible to transmit that defect into your potential offspring. You shouldn't really be reproducing. Yeah, that's one argument that they make, and it's a very popular argument. Other people say there's genetic screening technologies that can test to avoid having a disabled child, which people argue, even if it's morally right or wrong, to even prevent yourself from having a disabled kid in the first place. Others say there's nothing wrong with having a disabled child, but people shouldn't be trying to take measures to avoid a child with a disability, such as IVF and genetic testing. I know that a lot of rich families purposely go through IVF, so they don't have defective embryos that have genetic defects. So it's also a socioeconomic thing. That does lead back to eugenics and whether it is also right for Nordic countries to completely eradicate Down syndrome. Also, there's arguments that deafness and blindness, whether it's morally problematic or not, if you have a deaf kid, there was a couple who wanted to purposely have a deaf child, because there is a deaf culture, there is a blind culture, like I said. So they're wondering whether it's considered a disability or a culture. So, like I said, on the flip side, is there anything wrong to purposely have defective embryos or kids with disabilities? However, when it comes to the topic of reproductive freedom and disabled people, some people say they should have full autonomy if they're competent, but then what defines as competency? And then some say, no, we should take more paternalistic measures. A lot of times, parents or guardians try to prevent their disabled kids from having offspring or even having sex, because they think they're not competent enough to handle that responsibility. And this just creates an unequal power dynamic between parent and child, because it just takes away their sexual and reproductive freedom. If disabled people are adults, they should have autonomy to make their own decisions in regards to these personal matters, and their parents and guardians shouldn't be interfering. But I guess they're just worried whether they're competent and rational enough to know the implications of their decisions. But I don't know, it's kind of dangerous territory here. I can see both sides to this. There are human beings who deserve the same rights as everyone else, and a lot of parents do take this opportunity to baby them and treat them like children. They're basically just reinforcing the unequal power dynamics and just exploiting them for that reason. By that I mean overstepping their authority. Next question, what classifies as a disability? Well, that varies because the definition of disability changes and is redefined by medicalization of normalcy or deviance. Medicalization of normalcy or deviance just basically means that the process of what we find normal in human life and behavior is constantly being redefined and treated as possibly like a medical condition or like a new problem, new medical condition, basically. Or maybe it's the opposite. As we expand our knowledge in psychology and medicine, we tend to reclassify, or we tend to have the tendency to redefine medical conditions. So what we once thought was normal might now be classified as a disability, like mental health-wise especially. Or vice versa, like I said, the opposite could be true as well. If it becomes so common, it could be classified from an illness to a normal human behavior. For example, mental health disorders are viewed now as normal feelings because they are so common and such a universal experience within Gen Z specifically. So now they just group them with emotions, like social anxiety. It's not viewed as a mental disorder as much. It's more viewed as like a behavior or like an emotion because a lot of Gen Z claim to have mental illnesses. So my thing is how do we distinguish people who actually have very severe mental problems from those who don't? They're becoming so common now that it desensitizes people. And the people who actually have these severe mental disabilities are now being taken seriously. They're overlooked. They're ignored. Their suffering is being minimized. So what is the line between what is considered a medical condition and what is considered normal? And what can be complex and influenced by various factors? Even cultural and social factors can influence what is deemed as a disability or disorder or even disease possibly. Some classify mental health illnesses as a disability. Others say it's not. So to answer your question, what classifies as a disability? Well, I would say I like the one student's answer on this. He said, in a perfect world, would it still be considered a disability or not? Because in a perfect world, deafness, blindness, craniofacial differences, and mental health illnesses would not be viewed as disabilities. In a perfect world, if we had advanced treatment, if we had better universal health care, if we had a more empathetic, nonjudgmental society that was community-based, these disabilities wouldn't be considered disabilities. Next question. Are disabilities and or diseases something that need fixing? My personal answer would be no, but I know no one wants to hear my personal answer. If we argued it from a utilitarian perspective, a utilitarian would say that disabilities are something in need of fixing because if you look perfect or you look good, you're more likely to have better opportunities in life, a higher quality of life, higher social standing, better jobs, better positions, better social circles. So a utilitarian would support it, but I think it's a systems issue. You need to fix the system. That's my answer to that. If we had a better system, we wouldn't have these problems in the first place. We wouldn't have these social hierarchies and divisions that create these unequal caste systems, I guess, in society. But obviously, a utilitarian would say it maximizes happiness, it minimizes suffering, it maximizes pleasure because you're getting all the benefits from society if you look better, and so that's why you would gravitate towards fixing yourself. But I don't condone plastic surgery unless it's medically necessary. To me, getting unnecessary plastic surgeries like nose jobs or lip fillers, you are not fighting the system, you are just conforming to it, and that's not how you win against the rigged system. So to combat these arbitrary social constructs, the best thing you can do is just not let them affect you. So the best thing in this case is really just to accept yourself the way you are. At the end of the day, your physical features are just simply designed to help you function and to give you senses like touch, smell, sight, taste. They're not there for you to worry and alter and consume yourself with social constructs of what to look like. Last but not least, what can we do as a society to combat these negative attitudes towards people with disabilities and diseases? First and foremost, I would say we need more representation. People fear what they do not understand, and people will not be able to empathize with people with disabilities until we teach them and inform them on their ignorance. I would encourage disabled people to promote themselves and spread awareness on social media platforms because there isn't too much of that yet. I know because of the bullying, the cyberbullying, and the ableism online, it can be very disheartening, but I think it is important in order to overcome those stigmas and to shed light on the situation. Oftentimes, disabled people feel like there is no place in the world for them, and that's especially true also with employment because there are a lot of employment challenges, like the lack of accessibility or the negative perceptions with them regarding productivity, like they're lazy and they're not productive. Policies against discrimination are not enforced properly because it is really hard to prove them. It is hard to prove that you were not hired because of your disability or you were fired because of your disability. So the legal barriers in terms of inadequate policies and practices are hard and need to be overcome. I remember my social worker was telling me a story about a guy who was using crutches because he couldn't walk well, so he came in for an interview once. It was for some kind of company corporation in the business sector, so he came for an interview. As soon as he walked into the interview with his crutches, he immediately got rejected. The thing is, people won't hire you in the first place. They will just make up some random excuse, like you're not a perfect fit for the company or we hired someone else. Even though there are laws against discrimination for people with disabilities in workplaces, it is super hard to prove them. That is one of the biggest challenges, I think. Another thing to mention is that we as a society should emphasize other qualities or virtues of people and not just focus solely on their physical attributes. Overall, more representation in modeling and movies and social media is going to be beneficial in terms of bringing awareness and integrating people with disabilities and diseases into society. One more thing, though. From my personal experience, even though I face many challenges with having a craniofacial defect, I have made wonderful friends, so it's not all bad, I guess. Sometimes it does act as a positive because it shows you the people who are genuinely going to be there for you, no matter what, through thick and thin. You can actually see how people respond and treat you when you don't have much to offer. As long as you have a pretty good, solid support system, then you're doing great in life. Anyway, that wraps up the podcast. I hope you enjoyed it. It was a wonderful self-interview. I really enjoyed answering these questions. I will also mention for anyone that is considering plastic surgery, really think through it because it does give you negative long-term side effects. I have permanent nerve damage and sensitivity now because of it, so really think about it. That wraps up the podcast. Thank you so much for listening, and I hope you enjoyed it. Bye!