Disclaimer: I am not actively a part of any communities that are bound together by disability or illness. I have some experience with these communities as an individual with an eating disorder and visual impairment, but if I totally step in it please let me know.
I’ve been thinking a lot about the future and about technology recently. As I’m gearing up to start a degree in ethics, EVERYTHING has become ethically focused for me, and the ethical implications of technology that can utterly change what human bodies are capable of are fascinating to me. In particular, I have always been interested in the communities that form out of illnesses, diagnoses, or disabilities: the blind community, the autistic community, and even the gay community (which formed out of what was once viewed as an illness).
Fun fact about me: I am blind in one eye. This has been a major part of my identity since we discovered it when I was five. It is highly likely that in the near future we will have the technology to fix my eye in some fashion (whether by replacing it through stem cell research, with a bionic eye or by bypassing it with some sort of alternative technology). This seems like it would be a really cool thing and that I would jump at the chance, right? Oddly, I feel conflicted. Because I have built so much of myself and my self understanding around this deficit, because I’ve found ways to build up a sense of self around it, it seems odd to take it away.
I am not a part of the blind community, and even without having ways of understanding and communicating between people, I would feel some sort of loss at the change. Having ways to connect with other human beings, even if those ways are things that are typically conceived of as “bad” (illness, challenge, disability) is a good thing. I fully understand not wanting to change facts about yourself that have deeply shaped your entire life, particularly things that you have come to see as simply unique and not wrong or bad (although potentially frustrating and challenging). Especially since things like autism, deafness, or blindness often aren’t just a deficit but involve a completely different perspective on life from the average, as well as some pretty awesome talents in other areas, there are some good arguments out there for not “correcting” these things.
But I’m also a part of a different community that has grown up out of disorder: the eating disorder community. I’ve dabbled in pro anorexia communities and certainly understand the vitriol they inspire in many people. Promoting eating disordered behaviors is legitimately dangerous. People die from this shit. At the same time, pro ana communities create very real and important social structures similar to the ones found in the autistic community or any other shared identity group. There are unique skills and perspectives that come from the eating disordered mind: I have met some amazingly dedicated individuals there, and while the ability to not eat isn’t exactly a stellar skill, it pulls from some traits that are important (self control, goal setting, focus). It’s easy to label eating disorders and the communities that surround them as “bad”, but in reality most traits are far more complex than that and can be used in positive and negative ways.
So what differentiates these different communities as good and bad? If we had the technology to remove all of these diseases and impediments, would it be moral to do so?
It seems unlikely that I’ll be able to give you all a definitive answer here, so instead I’m just going to propose some of the relevant interests and considerations that we should keep in mind when thinking about how technology interacts with health.
1. Personal choice
The moral choice for one person may not be the moral choice for another person. As a society, we may not have to deny or require anything, but simply try to allow for individuals to make the choice that best suits their lifestyle. A good way to think about this consideration is that while it would be absolutely abominable to force someone to have a surgery or adopt a technology that they aren’t interested in, withholding something that could improve an individual’s life because you want to preserve their identity is the most disturbing kind of paternalism. There is likely no wholly correct answer, and it’s possible that some communities may continue while others find technology or medicine more appealing.
2. Maximizing ability and ease/reducing harm
While we do want to give individuals choice, it’s also important to consider what might improve people’s lives. In the case of eating disorders, it might make sense to force recovery on someone. This becomes far more hazy in the case of things like blindness or deafness, which certainly make life more difficult but don’t detract from the ability of the person to live a long, healthy life. People who are part of some disabled communities promote the idea that their differences don’t make their lives more difficult, rather a society that’s been created to cater to different abilities does. This is one of the fuzziest lines in considering whether we should “improve” our bodies: we could just as easily make adjustments to society instead. Is there something better about changing an individual to fit into the society we’ve created? There is an obvious benefit that someone who’s blind would much more easily be able to navigate our current world if they could suddenly become sighted, but this might not be the only way to create that ease.
Conversely, with something like eating disorders, there is likely no way to adjust society to make the disorder less harmful.
3. Potential loss
For most people, the idea of correcting something that they deem to be broken about the human body is common sense, but this piece is what we often forget. There are potential losses involved: different senses that have developed more strongly, new perspectives and technologies, communities and friendships. Especially when we look at something like autism, there are some amazing abilities that come with the deficits, and who are we as outsiders to say those aren’t worth it?
5. Cost to society
There are a few elements to this: how much does it cost to develop these technologies and provide them to individuals who might want or need them? Alternatively, are there benefits to society that we’re missing out on because some members can’t participate fully? There are definitely a lot of people who want to ask “what do I have to pay for this”, but personally I think the cost to society is not the most relevant consideration, as making life easier for such large swathes of people would outweigh the cost.
6. Cost to the individuals involved
It’s possible that objectively an individual’s life might be easier/better if they embraced technological enhancements to their bodies, but they don’t know how to rebuild community or extricate themselves from the communities that they’re involved in. It’s possible that asking an individual to make the changes to fit into society puts too much burden on them rather than on a society that purports to support them.
For different communities these considerations will shake out in different ways. But as we move towards more and more technology that can get rid of disabilities and illnesses, we’ll have to spend more time thinking about it.