The Public Editor from The New York Times responds -

First, thank you to anyone who did forward my post ‘Forget About Richard Dawkins I Have a Bone to Pick with The New York Times’ to Margaret Sullivan, Public Editor, at The Times. We did it! Margaret Sullivan did respond in The Times. To read her response click: Readers Protest ‘Hate Speech’ in Comments Section on Down Syndrome.

Second, I am grateful to Ms. Sullivan in that her response was more than anyone at The Times has ever offered regarding their readers’ comments and Down syndrome but it was not enough by a long shot.

Third, it was not a “win” for people with Down syndrome today, and so, I am a bit tired, sad and discouraged. I am not, however, done.

I think my feelings, thoughts and beliefs with regard to her post were most succinctly summed up by the comment posted today by B. Mull:

“It’s problematic to open a comments section on the subject of whether certain individuals have a right to exist. I think the public editor should acknowledge that the Times screwed up”.

Unfortunately and predictably the reader’s comments to her post were as venomous as before but this time towards me. My husband, Ward Peck, valiantly engaged with many of the ugliest comments this evening. I do not have the stomach for that sort of thing but one comment I made was:

My post which Margaret Sullivan referenced was predicated on the assumption that ‘disability is natural’. Our son who lives with Down syndrome is not abnormal he is merely different. Difference has no negative or positive value it just is. Our son is not ‘Down syndrome’ he is a kid like all children. He loves The Avengers, cheese burgers, his Bubba, he plays baseball and he loves reading.

P.s. – My husband ROCKS. Without his support none of this would have been possible.

P.p.s. – Our son ROCKS and not because he has Down syndrome but because he is a lovely little boy who works hard, is very bright, creative and makes our life quite spectacular.

 

Forget About Richard Dawkins I Have a Bone to Pick with The New York Times -

If you agree with my assessment that The New York Times is not adhering to their own standards on moderating comments and/or that they are allowing hateful comments about people with Down syndrome they would not allow regarding African-Americans, Hispanics or the LGBTQ community I would ask you send my post to Margaret Sullivan, Public Editor, public@nytimes.com and @Sulliview

If you do not have a child with Down syndrome you would likely be shocked by how many times a week someone challenges your kid’s right to exist.

When I see the ubiquitous bumper stickers: My Kid is an Honor Student at Average Middle School I think I should have one made up: Kid’s Like Mine Are on Their Way Out.

The most recent go-around started August 21st with Richard Dawkins’s — biologist, atheist, and provocateur — repugnant statement on Twitter responding to a woman who asked what she ought to do if she was pregnant with a fetus that tests positive for Down syndrome: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

I had two thoughts: I found Dawkins proclamation about who is worthy for existence reminiscent of the brethren from the Westboro Baptist Church; and, I thought he is a visible target for what must be similar thoughts of the nameless and faceless horde of medical professionals that counsel expectant parents who find themselves in the same situation. I would add to the mix some school personnel we have had the great misfortune of knowing.

Dawkins is a mirror–albeit a cracked and distorted fun house mirror– of how society views people with Down syndrome. He did come back with an apology which was in some ways even more offensive. He offered something like: Given that these kids diminish something called ‘sum happiness’ and their condition causes them suffering, abortion might constitute a moral imperative.

First, Dawkins should probably be court ordered to comment no more than 140 characters on any topic. Second, he could use an Emily Post refresher course because that is not an apology. At the end of the day it is still an excuse for questioning the right to exist of a group of people who share a genetic profile.

A pause on exactly what Down syndrome is. I Googled ‘Down syndrome definition’ and Google actually has their own definition which might be the most awesome ever: Down syndrome is a genetic condition in which a person has 47 chromosomes instead of the usual 46. No mention of suffering, not even disability, and no missing anything. It is a very dispassionate and objective definition. Google– you  got it right.

On August 28th The New York Times printed an op-ed rebuttal to Dawkins beliefs on the sum of happiness and suffering: The Truth About Down Syndrome by Jamie Edgin and Fabin Fernadez. The authors cited various studies which concluded among other things: divorce rates are lower for parents of children with Down syndrome, siblings report being better people for having a brother or sister with Down syndrome and people with Down syndrome were overwhelmingly happy with their lives.

I know several parents of children with Down syndrome who were thrilled with this response along the lines of In-Your-Face-Dawkins. For me I appreciated the intention of the editorial but I am not keen on justifying my son’s existence in the world. I’m more of a “He’s here, get used to it” mother.

What I did object to were the comments in response to the editorial. It was essentially an objectionable debate on whether people with Down syndrome should exist because they are such needy, worthless and pathetic creatures who suck up our social services. The comments were eventually closed but not before I wondered would any other group of individuals’ right to exist be up for public discussion on the pages of NYTimes? If one were to replace “Down syndrome” with “African-American,” or “Hispanic” the NYTimes would be indistinguishable from a white supremacist discussion board. Would it be acceptable to discuss the value of poor people or welfare recipients? What if we evaluated the right of LGBT communities to exist?

The Times’ own guidance on comments offers that it is “interested in articulate, well-informed remarks that are relevant to the article…Our standards for taste are reflected in the articles we publish in the newspaper and on NYTimes.com; we expect your comments to follow that example. A few things we won’t tolerate: personal attacks, obscenity, vulgarity, profanity (including expletives and letters followed by dashes), commercial promotion, impersonations, incoherence and SHOUTING.”

While many of the comments are rational, sober insights into the authors arguments, the section is littered with egregious examples of this policy being ignored. Perhaps its ok to relax the standards when arguing Mets vs. Yankees, but when the subject at hand is as sensitive as whether there is a moral responsibility to abort all fetuses with a certain genetic profile in order to reduce “suffering,” some extra vigilance is needed.

Here are some (but by no means all) of the more disgusting comments among the 187 left on the NYTimes site (spelling and grammar are left as written).

It is interesting to note that every single commenter who claims to have an immediate family member with DS speaks positively about the article as reflective of their experience. Yet those who claim to know the minds of such people are confident that it not actually the case. Some examples:

“Aside from that, consider the parents of DS children. Yes, many of them, after the fact, manage to convince themselves that they are better off somehow. People are extremely creative that way. But they are not better off! They will never have an intelligent conversation with their child. They have no hope that their child will ever achieve anything of consequence in the world, and little hope that it will even rise to the level of mediocrity. Their child will never be able to care for them in their old age, and (hopefully!!!) will never give them grandchildren. You can rationalize all this after the fact, but this is NOT what any prospective parent wants! All rationalization aside, Down syndrome is an unmitigated tragedy, and abortion is the best choice.” – JohnB.

“When I see families with a Downs Syndrom child, they don’t look happy. Often it is one parent with one child. The parent looks exhausted and aged. I don’t see smiles. The situation is very sad. One day there will be scientific procedures to screen for all kinds of physical and mental disabilities, and most people will use them to avoid have a child with severe disabilities, and thee world will be a happier place.” –  I’m shocked! (A NYTimes Trusted Commenter).

And then there are those who claim to know the minds of people with Ds and seek to protect those minds from the human experience they most assuredly are unable to process:

“Most of the time, our state of happiness is relative to how we view the environment around us. We are happy when and if we have the same as or more than that possessed by another. A Down Syndrome person CAN be happy as long as they do not relate their appearances and IQ to those of a normally developed individual…Then, the advice by Dawkins may be the one you may want to actively consider.” – Sonny Pitchumani

“…My advice to anybody facings the possibility of giving birth to a disabled child is the same as Richard Dawkins’, which I find both ethical and compassionate (as opposed to the many as hominem attacks on him from the commenters below). Any intellectually disabled person, especially those on the borderline, knows that he or she is deprived of the many pleasures of the mind that others take for granted. Do not underestimate the pain such people experience, even though they may not show it. Why to doom your child to a twilight existence, striving for something they know they will never reach?” – Mor California

Some commenters argue the “suffering” involved in someone not aborting a fetus with Down syndrome is their own:

“It’s a huge burden to put on teachers, family members, tax payers, members of your insurance group and society in general to choose to birth a DS baby. It’s, overall, a selfish decision”. – A.

“It is unethical, irresponsible and selfish to knowingly have a child that the rest of the country will have to support financially for the rest of the child’s life. Our country is going to go bankrupt from supporting the 300% increase in autistic children being born, baby boomers aging etc. We can’t afford to support more unproductive people”. – Kari

In an odd twist of blaming the victim, many commenters lament the fact that our society’s social programs are inadequate and the solution is to spare everyone the burden of doing anything about that:

“…I worked for a long period of time in the field of developmental disabilities and saw first hand how difficult life becomes for those responsible for care taking…However, my main concern is what happens to the individual with Downs as they reach adulthood. The support system is pretty much burned out and they face a life of uncertainty. And no matter how hard one tries, the affected individual is never going to “get better.” – rheffner

And since this is the internet, there must be the “this is a personal decision based on particular circumstances. That said, here’s a sweeping generalization I must share because my two cents are worth a $20 argument:

“This almost makes it sound like people should actively choose to have children with Down’s syndrome, and that those with normal children are missing out on a sublime life experience. I think it should be entirely up to the parents. Though I don’t doubt that many families love the experience of having Downs members, many others would very much like the opportunity to refuse to add a cognitively impaired child to their households…” – Mimi Dubai

“To each his own. If you want to have your Down’s child or child with any other disability, it is your choice. As a taxpayer, I don’t really appreciate having to subsidize your choice, but I guess that’s what a society is for.” – Leonora

Then there’s this:

“As someone who was attacked by a boy with Down’s syndrome, only to see everyone excuse his behavior, may I speak up for all future victims? I suspect there are many more than you’ve heard of, as no one reports these crimes.” – Fredda Weinberg

Finally, 11 out of the 187 comments were chosen as a “Times Pick,” which are defined as “comments that represent a range of views and are judged the most interesting and thoughtful. In some cases, NYT Picks may be selected to highlight comments from a particular region, or readers with first-hand knowledge of an issue.”

What criteria, exactly, does this comment satisfy, except to cram all the offensive sentiments into one burst of incoherence that is only tangentially related to the article in a display of deplorable reading comprehension skills?

“One of the benefits of Down syndrome is a reduction in the divorce rate? First, where’s evidence supporting the notion that a low divorce rate is “good”? More importantly, of course parents of Down syndrome stay together: who could live with themselves after leaving a spouse to cope with a Down syndrome child on their own? Since this piece gets it moral authority from privileging disability, it is hypocritical to make distinctions between the well-being of families of Down syndrome children and children with other disabilities. Besides, it seems unhealthy to find solace in the idea that others are worse off than you are. The notion that coping with adversity makes one a “better person” is a relic from, among other things, a time before modern medicine, when friends and loved ones commonly perished from communicable diseases. It’s a balm with its roots in certain theologies and philosophies most people don’t fully understand. Given that Down syndrome can be identified in utero, carrying a Down syndrome child to full term based in part on expectations of self-improvement is morally akin to throwing yourself and your child in front of a bus so the both of you can better yourselves by coping with paralysis. The rest of the piece is pie-in-the sky speculation about the wonders of future medical advances. When I read the phrase “studies are underway . . .,” it doesn’t make me scan the horizon for rescuers. I can’t wait to see which taboo Mr. Dawkins exposes next.” – Alan

This isn’t the first time I have fumed at the responses and NYTimes inability to monitor civil public discourse with regard to Down syndrome. In the past their Motherlode parenting blog is the usual venue for this sort of deliberation. For some reason Motherlode only publishes posts on Down syndrome with titles like: Has Down syndrome Hurt Us?; Outlawing Abortion Won’t Help Children with Down Syndrome; and Growing Up with a Disabled Sibling.

There is nothing remotely like: My Son (with Down syndrome) is a Reformed Kleptomaniac or My Son (with Down syndrome) is a Narrative Photographer or even My Son (with Down syndrome) Discovered Body Surfing This Summer. All of those are my kid by the way.

I actually question NYTimes judgment more than Dawkins when it comes to enflaming discussion on the value of people with Down syndrome. Dawkins is a deliberate provocateur. He wants a fight. He likes the fireworks, folks. The good news for Ds is he will surely go on to a new victim profile to satisfy his attention seeking ways but NYTimes seems oblivious to the audience response it attracts and supports.

This is not objective content instead the paper is relating and supporting a narrative on people with Down syndrome that needs to go if we are ever to understand and lend compassion to a group of people who have been murdered, tortured, refused medical treatment and institutionalized. We know that research, health care, adequate social services and intervention have made a real difference for people with Down syndrome. Life expectancy has risen from 25 years-old in the 1980’s to 50 years-old today. People with Down syndrome drive cars, have jobs, live on their own, go to post-secondary schools and get married.

I would ask The New York Times to expand their view of people with Down syndrome. NYTimes has several sections in their paper to explore stories on say: the actor, advocate and activist Edward Barbanell; Tim Harris, owner of Tim’s Place and star of his own reality series; or Lauren Potter, actor and activist, from the series Glee. Of course it might be hard to rile up a readership in reporting on people with Down syndrome who are successful and self-sufficient but I can assure you those stories will not embolden people who are looking for a safe harbor to vent their hateful thoughts.

As far as I am concerned what a woman does when faced with a pregnancy she does not want is her business. What you think about my son is my business. Richard Dawkins is well aware of what he is trying to accomplish. The New York Times does not seem to have a clue they could do a better job in its coverage of people with Down syndrome and in promoting genuine civil discourse with regard to oppressed groups.