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Sunday, August 24, 2014

A Brave New World

I am not a Twitter guy. Years ago I was not a blog guy. Now I am a blog guy and what Syracuse University likes to call a public intellectual. I am not sure how I feel about this moniker. I prefer Bad Cripple because I sure do seem to get people angry when I write about disability rights and especially growth attenuation, a cure for SCI, and my opposition to assisted suicide. I should also note here I do not intentionally try to make people angry. I write from the heart and in a strong manner. I know my views are not widely accepted and out of the norm. I feel a social obligation to be as forceful as possible when I write as many others share my views but cannot articulate them as I do. The point I am trying to get at is that I want to reach as many people as humanly possible. This effort is dependent upon technology and social media.  I must keep up with contemporary culture and all summer my son has been pushing me to get on Twitter. He explained not once or twice but many times why Twitter is important. I am sure he is correct. But here is the rub. I am resisting and a recent news story that broke via Twitter might finally propel me into the world of Twitter.

A few days ago Richard Dawkins got himself into hot water via a poorly worded and deeply offensive Twitter comment. Dawkins has been and remains a controversial figure. He is by degree an ethologist and evolutionary biologist. In the 1970s he wrote the Selfish Gene. More recently (2006) he wrote the God Delusion that was widely read (as in the millions of copies sold). Essentially, Dawkins likes controversy. When he speaks, or in this case Tweets, people listen.  Via Twitter a person stated:  "I honestly don't know what I would do if I were pregnant with a kid with Down Syndrome. Real ethical dilemma". Dawkins replied: "Abort it. It would be immoral to bring it into the world if you have a choice". This exchange is typical of Tweets I have read. Short, pointed and devoid of context. I am not impressed. 

I am four days behind in writing about Dawkins' Tweet. This, I suspect, in the world of Twitter is akin to a century. Aside from the fact I am busy prepping for the new semester (my first class is tomorrow) I wanted to let Dawkins Tweet rattle around in my brain. I thus followed a multitude of news stories about Dawkins Tweet. Was it offensive? You bet it was. Was it poorly worded? Absolutely.  Dawkins should be taken to task and severely chastised. To Tweet it is "immoral to bring it into the world if you have a choice" undermines the humanity of people who are not typical--in this case those with Down Syndrome. Initially, I felt bad for Dawkins as he was inundated with hate email. I get my fair share of hate email and as the years have gone by become increasingly quick with the delete button. I do read a good bit of severely critical and hate laden email. I do this because I think such emails can reflect the larger cultural norms. There is no question my views on disability rights are not shared by the majority. I suggest Dawkins might want to adopt a similar strategy.  He posted what was, I think, supposed to be an apology. It was not, it was a an academic ego run amuck. Link: 

In "Abortion & Down Syndrome: An Apology for Letting Slip the Dogs of Twitterwar" Dawkins noted that: 

 a woman on Twitter, one of our respected regulars on, said she would be unsure what to do if she found a fetus she was carrying had Down Syndrome. I replied to her, beginning my reply with @ which – or so I thought (I’m told Twitter’s policy on this might recently have changed) – meant it would not go to all my million followers but only to the minority of people who follow both her and me. That was my intention. However, it doesn’t stop people who go out of their way to find such tweets, even if they don’t automatically pop up on their Twitter feeds. Many did so, and the whole affair blew up into the feeding frenzy 

Dawkins intension are not relevant. What one writes in an email or on Twitter is about as private as a post card. More to the point, I do not care about the intent of what Dawkins wrote.  He generated a feeding frenzy because what he wrote is deeply objectionable to many--myself included.  Worse, in his supposed apology he wrote that "given more than 140 characters he would gave written to the woman:" 

“Obviously the choice would be yours. For what it’s worth, my own choice would be to abort the Down fetus and, assuming you want a baby at all, try again. Given a free choice of having an early abortion or deliberately bringing a Down child into the world, I think the moral and sensible choice would be to abort. And, indeed, that is what the great majority of women, in America and especially in Europe, actually do.  I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare. I agree that that personal opinion is contentious and needs to be argued further, possibly to be withdrawn. In any case, you would probably be condemning yourself as a mother (or yourselves as a couple) to a lifetime of caring for an adult with the needs of a child. Your child would probably have a short life expectancy but, if she did outlive you, you would have the worry of who would care for her after you are gone. No wonder most people choose abortion when offered the choice. Having said that, the choice would be entirely yours and I would never dream of trying to impose my views on you or anyone else.”

The above is far worse than the original Tweet. Yes, most women when confronted with a choice do indeed choose to terminate the pregnancy when they  receive a positive test for Down Syndrome. What few discuss however is do women really have a choice when they elect to have prenatal testing done? When does choice, in this case a positve test for Down Syndrome, become a social expectation? When does choice become a demand or preconceived conclusion? Worse, Dawkins supposed apology highlights the stunning ignorance about what it is like to parent a child and adult who has Down Syndrome. People with a host of significant cognitive disabilities are not only deeply loved as a typical human beings are but make contributions in a myriad of non traditional ways. The same can be said of people with physical disabilities--people like me. The root cause of the discrimination those with a physical or cognitive disability experience are shared.  In a short essay I wrote in 2010 about the Ashley Treatment I argued that people with a disability: 

are the Other, a pervasive and important concept in the social sciences. The Other are strangers, outcasts if you will, people who do not belong. The Other often have fewer civil rights and experience gross violation of those rights.
Thus at a fundamental level there is an us-and-them – those with a disability and those without. This is a false dichotomy, but is a part of the American social structure and dare I say medical establishment. The degree of disability is not important, nor is the type of disability. We people with a perceived disability are the other.
Given this, I do not consider myself one iota different from Ashley, in spite of the great difference in our cognitive ability. In developing the Ashley treatment,doctors have not only overreached the bounds of ethics in medicine but also sent a shot across the bow of every disabled person in American society.
The message is very clear: disabled people are not human – they are profoundly flawed beings, and extreme measures will be taken to transform their bodies. Consent is not necessary. Modern science has come to the rescue, and doctors have the technology to save us. The problem with this line of thinking is that it is inherently dehumanizing. Ashley did not need to be saved. Link:

The fact is not only are people with a disability subjected to baseless prejudice, but the mere right to exist as a human being is being subjected to a frightening modern day form of Eugenics. I am sure this statement will outrage some bioethicists, physicians and health care providers. I would urge those shocked by words or deeply insulted  by my use of the word Eugenics to think more deeply.  Please stop and read the words by Dawkins. A mother who gives birth to a child with Down Syndrome is "condemned" to a lifetime of caring.  Read this repeatedly. Think about the implications and consider this. My parents were told when I was a morbidly sick child that the odds of me surviving to adulthood were slim. I would most likely have profound and life long physical deficits. I would require great care and that care would be a significant financial drain. But the choice to treat me was up to them. I could be made comfortable. They could try and have more children--children that would not be a burden. Has much changed in my life time? In a word, no. In 2010 I was critically ill and a hospitalist suggested my life was not worth living and that he/she could make me comfortable. In other words I could choose to die. After all life with a disability is filled with misery and pain. 

People do not make life and death decisions in a social vacuum. We are part of a much larger social system. Dawkins words merely supports existing ideology. That ideology works at multiple levels and that includes institutions like hospitals and health care offices. The normative ideology that Dawkins supports leads to the consent for oppression (in this case the termination for all fetus' that test positive for Down Syndrome). This in turn creates a belief system in which the termination of a any pregnancy in which a physical or cognitive disability is present is perceived to the only logical and moral choice. This has a a direct impact on individuals that leads to alienation of those few that are born or acquire a disability. The end result is that stigma, social isolation, economic deprivation, and a lack of social supports are the norm. People with a disability are marginalized others.  

Let me return to Dawkins. He ended his non apology with the following words: 

To conclude, what I was saying simply follows logically from the ordinary pro-choice stance that most us, I presume, espouse. My phraseology may have been tactlessly vulnerable to misunderstanding, but I can’t help feeling that at least half the problem lies in a wanton eagerness to misunderstand.

I do not possess a wanton eagerness to misunderstand. Rather I have a wanton eagerness to shed light on what others, typical others, do not get when life involves living with an atypical body. I want to make sense of the stigma I encounter daily. I want to make sense of why people feel free to consider my body to be public property. I want to know why people are not bothered when I am harassed by those who work for the mass transportation industry. I want to know why people with a disability are unemployed in great numbers. I want to know why social supports for those with profound cognitive deficits or mental illness are substandard at best. The answer to these questions is not to be found in preventing people with a disability from existing.  The answer is all around us. It is questioning why others, atypical others, face prejudice every time they leave their home. The prejudice I encounter as do all people with a disability is called ableism. This is a word I hope Dawkins will take the time to look up for his apology is really a simple statement in support of ableist ideology that I oppose day in and a day out. 


Stephen Drake said...

What Dawkins wrote wasn't even original. It's a recycling of Peter Singer with a good measure of James Watson. And it was written with all the hamhanded white male privilege that Watson is noted for when commenting on gender, race and disability.

A lot of nerve for someone who, at one time, was best known for marrying the ex-wife of Tom Baker, the 4th Doctor Who (also the ex-companion of the 4th Doctor, but I don't want to go too far into the Whovian weeds here.).

Sara Buscher said...


Matthew Smith said...

Richard Dawkins is another cheap controversialist. He is best known for baiting Muslims with ridiculous bigotry. His days of producing original thought are ten years behind him. His comments about Down's syndrome are ludicrously misguided -- for a start, the risk of a baby having Down's is elevated in older mothers, so that baby may be her last (or only) chance of becoming a mother. Second, Down's is not an especially costly impairment in a child; it does not produce severe physical impairment or challenging behaviour. I know two mothers who have children with Down's and both are coping pretty well. Neither would have aborted, for religious reasons.

Unknown said...

Wow, just wow. You, Bill Peace are a better person than I. You make your points and objections known with elegance and grace, while not cutting any slack to Dawkins. I'd lean more toward the 'find him, hurt him, hurt him again' kind of attitude in a situation like this. Your way is much more effective probably, but my way...well, my way would give satisfaction also. Thank you for your well chosen words used to advocate for others.