Severely physically challenged patients working in a Japanese coffee shop. This is only a start, but it is a good one.
A large part of my book “We need to talk about this” was an effort in logical reasoning to find a practically applicable guideline, something that would hold up within a legal framework and provide clarity, a way forward instead of remaining gridlocked.
One or two people have said that they do not agree with my views. As none of them were specific, I can only guess what they meant. Were they in favour of encouraging discrimination of those who aren’t mainstream? Were they in favour of locking up people in institutions because they are autistic and putting people in chains attached to walls because of “mental” illness? Surely not.
I suspect that what they want is to see new technologies being used to rid the world of diseases and conditions closest to their heart. I do not believe that that would be just. Cancer runs rampant in my family, for example, but focusing all attention on the prevention of the development of cancer is wrong when cancer is mostly developed later in life and can be tied to the way we live. (By contrast, sickle cell anaemia does not occur in my family and I am not familiar with what it entails whereas I have seen the pain and suffering related to advanced cancer from up close.)
I have no personal ties to childhood cancer, but it seems to me that preventing the development of childhood cancers should take priority over preventing the development of cancers that occur later in life. (But note that I am not saying at all that no attention should ever go to the prevention of cancers that occur later in life!)
In my book, I came up with a guideline according to which more attention should first go to the prevention (or treatment) of conditions that lead to lives considered not worth living. Because it is just and fair, also in view of the fact that it is a generally accepted view that allowing people to have been born in itself does not constitute harm.
Once we have those figured out, we could move on to progressively less serious illnesses and conditions if people with those conditions perceive them as so problematic that they would like to see them prevented. Progressive multiple sclerosis is an example that comes to mind.
This is the opposite of the approach currently generally taken in medicine, in which those with the worst lives and most serious conditions get the lowest priorities. That is like ignoring the ship that is still miles away from the shore (sinking or not) but focusing all your attention on the ships that are closer and sure to make it to the harbour or that are already in the harbour.
Both approaches contain their own logic. Both approaches make sense. I don’t think that one is wrong and the other is right.
But if I put it in terms of another metaphor, then I have no choice but to say that it is wrong to provide water and nutrition only to roses and withhold them from geraniums.
Then the question becomes: Who am I to say that geraniums or sunflowers aren’t worthy of life or that the people on the ship farthest away from the shore aren’t worth saving? In a world full of roses and only roses, roses will soon become boring and plain.
I believe that it is a mistake to put the onus exclusively on medicine when so much more can also still be done by society to make people’s lives better and enable everyone to flourish, roses, begonias, sunflowers, tulips, orchids, daffodils and geraniums alike.
That is what the United Nations have called the British government’s treatment of the country’s poorest and most vulnerable.
I discussed that in my book too (and I believe that it is linked to a British-designed approach to life called utilitarianism):
What’s being said in the BBC article about the, well, delusional focus of the ministers is excellently depicted by this photo I took on 29 October. The text in this government poster at a local bus stop contains not a promise but a threat, as wages in Britain aren’t particularly high (to put in an understatement). Universal credit is the new benefits system, by the way.
I found the tone of this poster mean-spirited. That’s why I took the photo.
Read this comment below, on a YouTube video about two girls with Treacher-Collins syndrome (which means that they have healthy bodies and brains, but have no hearing and some facial bones are lacking):
That baffled me. I also hear the phrase “neoliberals” from time these days within this context. I wasn’t familiar with it, but it seems to be associated with a lack of tolerance for human diversity and a lack of inclusive solidarity (while I associate the latter with conservatives, libertarians and republicans). When I looked into it, I found that “neoliberal” may be more or less the same as “conservatives” or “neoconservatives”, in practice.
So, does all of this make me a republican in other people’s views, then?
It is time to stop labelling people. Sigh. So easy for me to say. I do it too, I am sure.
Turns out that I am a “guilt-ridden apologist”, apparently, as that is what I was called a few days ago after I pointed out that cave bears actually went extinct a long time ago. It went with “you crack me up”, so I am happy that the person was happy, for whatever reason. I have no idea what on earth a guilt-ridden apologist is, so I have no idea whether I am one or not. It makes no difference to me.
“Should have been euthanized.” Did that come from a democrat then, or from a neoliberal?
It is a screenshot from part of a USA Today story, about how their environment responded after a daughter with Treacher-Collins syndrome was born to the parents in this story, Thom and Tami Wetmore. They later adopted a girl with the same syndrome from Ukraine where she was in an orphanage.
She is very artistic, it turns out. Her name is Danica.
Both girls use sign language. And Juliana has a hearing aid, which apparently allows her to “hear perfectly”. I don’t know whether Danica has a hearing aid.
The family is from Texas and living in Florida – or the other way around – and Christian. So what does that make them?
In addition to Danica, they adopted three more children.
You can see how hard the topic of having a non-mainstream child is for people and how great the need to talk about this in this thread: http://www.actuarialoutpost.com/actuarial_discussion_forum/archive/index.php/t-251806.html
In this thoughtful yet also provocative book in the area of bioethics, Angelina Souren takes you on a tour along matters of life and death, exploring ethical and practical aspects of the new eugenics.
With regard to the mew eugenics, Souren argues for caution and points out that technological progress sometimes leads to mistakes that can be hard to correct once made. The unbridled creation of designer babies (which we have already been engaging in for decades), she says, could lead to the disappearance of the glue that binds us all. Compassion. Inclusive solidarity. It does not have to, provided we proceed wisely, she adds. She proposes a practice based on the principle of non-discrimination and would like to see governments to provide broader support for their citizens and their children.
Souren does not shy away from difficult questions. Why do we have so much trouble accepting ourselves and each other, she asks, and points the finger at utilitarianism. She also tackles the task of defining “a life not worth living” and arrives at a practical universal guideline for the application of private eugenics that is bound to raise some protest from all sides of the debate, but will also spark appreciation. We need to move toward a global consensus on these matters, she opines, and that is only possible if some of us take a few steps back and others a few steps forward.
This book is for anyone interested in what is happening in the world around us. It is also particularly suitable for anyone curious about the future of humanity.
ABOUT THE AUTHOR
Angelina Souren is an independent writer and researcher who is currently based in the English city of Portsmouth. She has previously lived and worked in the United States and in her native the Netherlands. Her professional background is primarily in earth and life sciences, but also includes several years of legal experience.
She is a former board member of the Environmental Chemistry (and Toxicology) Section of the Royal Netherlands Chemical Society as well as former editor-in-chief of its newsletter and scientific yearbook, a former member of the board and various committees of a Dutch organization for women in science and technology called NIMF, and former associate editor of the newsletter of the US-based Geochemical Society.
Unless you’re an established author with an agent, when you write books, you also have to write blurbs. Back matter. Short descriptions, long descriptions, author biographies, while taking each platform’s word or character limit into account and the platforms’ peculiarities.
An example of the latter is that for the description of paperbacks on Amazon, you have to code paragraphs in html, but not for the Kindle version. (You discover that the hard way.)
Also, the size limit that is indicated while you’re adding that blurb is not the limit that is applied in practice. So you either have to keep it short and sweet, or wait to see if your description will be cut short in mid-sentence in practice. Eventually, you get used to it and learn how to avoid this pitfall.
In addition, there is the problem that some platforms take the long description and cut it short instead of using the short description. *shrugs*
The blurbs tell readers whether or not they want to buy the book. So they also require a lot of tweaking from that point of view.
An example is asking myself “Do I want to make sure I don’t put progressives off by describing myself as a feminist (which I am) or is it more important not to repel more conservative readers by describing myself as a feminist?”
Another one is “Is an academic-sounding description better than a snappier, lighter one?”
Plus, you usually have to select a photo of yourself as well. Which one to pick?!
It is a learning process. By doing, I am slowly getting better at it. At least, I hope so!
I quickly shot this with my mobile so the quality is not that great and you get to see my saggy wrinkly skin up close. Hey, I am no longer 20 or 30 and that’s perfectly fine!
Here is the article in the Atlantic that I mention in the video:
That is one of the questions I’ve been wondering about, as you’ll know if you read my latest book.
I just watched Brené Brown’s TED Talk about vulnerability again. I first saw it a few years ago. It turns out that her research appears to indicate that yes, the unbridled creation of designer babies would destroy our capacity for connection.
In my book “We need to talk about this” I am not trying to convince you of anything (other than that “we need to talk about this”).
I simply believe that it is important to move toward a global consensus on matters like the new eugenics, on how we see future generations and societies.
To reach a global consensus, we’ll all need to adapt. Some of us will have to take a step back while others have to move forward. A few of us can stay right where we are.
It means that you have to examine your own opinion, to see where exactly it comes from, and where necessary, adjust it. This will help you see where other people’s opinions are coming from, also if they’re not at all like your own.
Then you may suddenly discover that their views aren’t actually as different as you initially thought.
In my book “We need to talk about this“, I mention sadistic stalking (description below). That is, I point out how difficult it is to tell that the target of such activities is not imagining things, is not mentally ill.
I give the example of the woman who was stalked for a long time and eventually found the excavated remains of her deceased husband dumped on her doorstep. She had a heart attack. In my book, I take you through a few scenarios that put you in such a woman’s shoes to show you various sides of what are in fact “mental health” prejudices. Continue reading
Well, of course, after I thought I had weeded out all the typos, added a reference that I was sure I had already added, and tweaked the new cover for the print version sufficiently, I still found a missing space, and one or two missing words in the proof. That’s how it goes! Continue reading
Welcome to this website and blog. I am the author of “We need to talk about this“.
In this book, I discuss matters of life and death, such as abortion, designer babies and euthanasia, within the context of the new eugenics.
(Incidentally, if you have the 1st edition – with the bright-blue baby on the cover – or a flawed early author’s copy of the current edition, with for example errors in the Table of Contents, typos, or a different photo on the back than the one on the left, contact me. I can send you an up-to-date epub or mobi file.)
I am wrapping up the much improved version of “We need to talk about this“. There is now a chapter on euthanasia, for instance, with a discussion of the Groningen Protocol.
I didn’t write this book to convince you that my views are the right ones, even though I hope you will agree with many of them. I wrote this book to encourage as many people as possible to develop their own opinions in these areas, to go beyond impassioned exclamations like “this is so wrong” or “this is very good” and to make their opinions known to their governments and academics, and to discuss these issues with their friends, relatives and colleagues. Continue reading