PBS Discussions

nzcologirl · Joined: 16 Nov 2006 Posts: 6 Location: Colorado

I haven't been so upset about something I saw on television for a long time.... but, geez, this is Nova and schoolteachers and libraries will buy this video and show it as if it is true. I would like some sort of response from the producers and editors of this show to the discussions going on here. It is a question of human dignity as far as I am concerned. This is not how we treat fellow humans.

alisa Cantuaria · Joined: 19 Feb 2007 Posts: 2

Wow !! I just viewed the program. We have all benefited from Scientists' (natural or nurtured) proclivity for tenacity in understanding the interteraction of our biology with the environment. profusive moulting emotions and polorizing politics dismissed, I am one proud, appreciatve, and respectful American. I thank all morally responsible Scientist for their assiduity !

athenamom · Joined: 27 Nov 2007 Posts: 1

I was very moved by the story. As the mom of a brain damaged son, I found myself reacting with tenderness and empathy. The five who walked on their hands amazed me. The improvement they showed after the use of the walkers and parallel bars reinforced my experience in putting back into the brain that which it lost or never developed.

jenndes · Joined: 22 Jan 2008 Posts: 1 Location: US

PBS just aired this program again tonight on their HDTV channel and I was literally yelling at the TV in anger for the first time at a PBS program. I full-heartedly agree with Gail and so many others here that this program de-humanized this family and so many other disabled individuals. I lost count of how many times they equated walking upright as a human quality and walking on all fours as an animal quality - inferring that these people were more animalistic than human. I believe in evolution; however, to say that because someone is disabled they have "de-evolved" is absurd and incredibly insulting. As the mother of a son with a genetic disorder and as the Exec. Asst. to the CEO of a large non-profit organization that provides services to the disabled in New York state I see how blessed we are in the US to have the funds, resources, medical services and care that allow our children and ourselves to get the help we need. This family, unfortunately, does not have that same opportunity and PBS simply tacked that onto the end of the program. If these children (now adults) had grown up here, they would not be walking on all fours - plain and simple. PBS followed the scientists' lead of turning this family into a science project. Yes, we need to perform tests to learn but people should not be made into a show or compared to animals or dehumanized. Any person, no matter what their disability (NOT de-evolution), is fully human and deserves respect, dignity, care and love. They are not a test case.
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-Jenndes

judderbar · Joined: 23 Jan 2008 Posts: 1

I only saw the trailer.

My feeling was that there was some kind of developmental issue here that might be related to earlier deprivation of one sort or another. If the children strongly identified with each other the bond might make it difficult for them to make the step into adulthood because then they would identify in some manner with those who were upright and associated with the depriving behaviours?

To sort of back this idea up i was once in a Belgrade 'mental' hospital for mainly children and there was a man there of about 30 who i found very interesting. He had made a beautiful hand woven napkin which i bought. There was something about him that i found very 'drawn too'. I asked how he had come to be in this place. Via a translator he began telling me that when he was about 12 his father had caught him doing something and had tied him to a tree and beat him around the head with something like a base ball bat. Mental retardation was assumed as he was severly injured. And yet now years later he was fascinated by british football and knew team names and players.

I found the story overwhelming touching and began to cry. I felt he should not have been in this place. In English he then said to me that i did not need to cry and that everything was alright because his father could not hurt him now.

It was an extraordinary moment and the translator and me as well as the guy who took me to this place were all now crying. Obviously we could all now see this man from a very different point of view.

And i have had other experiences like this say with cerebral palsy where when a child reaches a deeper relaxation and trust they totally stop dribbling and exhibiting the more pronounced symptoms they once had.

My own brother wet and shat the bed until he was 10 and wet himself until he was 13. There were clear development reasons for that. He is now a successful property developer and builder of one off houses.

4walker · Joined: 23 Jan 2008 Posts: 1

I agree! Shame on the de-evolution theroist! I know a person who can walk on all 4s- they do it on occasion - mainly as a form of excercise and back stretching. That is why this show caught my attention. I rolled my eyes in disbelief at the whole de-evolution idea. Geez, how about a little respect and sensitivity to the family! If someone told my friend they walked on their hands because they were de-evolving, I'm sure that person would get a dirty ear full! Can you imagine being the parents and constantly seeing your children being taunted and dehumanized? It's heartbreaking! Okay, let's look at this from a rational point of view. If you can watch the show again watch how the children walk. Several people have pointed out that their gate is too wide. Helloooo! They are not walking on their hands because their genes are telling them to! Their arms and hands are acting as walkers (like the 30$ one that was given to them). Walking on their hands lowers their center of gravity and compensates for the imbalances in their stride(some people have pointed out that this imbalance is probably caused from their cerebral disability). They are making due with what they have. Their bodies have grown accustom to the 4-legged position like a person with poor posture is accostumed to being slumped over. The difference is that a person with poor posture can consciously correct it but the siblings' disabilty will require professional help to retrain their muscles to adapt to their disabilty in a more upright way. In several scenes where the siblings are being held up or are sitting in a chair you can tell their necks are stiff. When they are walking on all 4s their heads have to be facing forward to see where they are going - their muscles are trained to move one way which is the most efficient to make up for their disability. This is not a debate of genetic evolution this is a case of a medical needs not being met due to a lack of knowledge and economic challenges. Please don't take that the wrong way. I gurantee if someone had told the parents there was a treatment for their children, those parents would be on it in a heart beat. But, when you don't know what to do, you loose hope and then you feel defeated. That was the impression I got from the father. I don't think people realize how powerful hope can be. These siblings need physical therapy for sure - the human body is not built to move like that and over time they could develope problems with their wrists (with the angle of the body a lot of weight is being supported on those little wrist bones)and backs. I hope this entire show has given the family hope, because now people who have answers will see this family's problem and hopefully meet. I am looking foward to seeing Nova do another documentary on this family- but hopefully, they will focus on the important element of the story- the human element. The family.

BCMidwest · Joined: 23 Jan 2008 Posts: 1 Location: Midwest, USA

After reading many of the comments about Nova's presentation of this story, it seems to me that a number of people have missed the point. Yes the show started on the pretense that it would be a look into the genitics of these people and a possible link to or genetic past. But, like life often does, it became something else, a story of humanity. I think their point, counter-point could not have been more poynette. The show started by dehumanizing the family and showed the cold stoic approach of the uninvolved. I was appaled by this. then somebody stood up and said "enough with the studies, what can we do to help them?". I cheered. the show ended with them going back a year later to check on the families progress. When I saw the older son walking upright I wept, tears of joy. I little humanity goes a long way.
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BC

dorkmobile · Joined: 26 Jan 2008 Posts: 1 Location: AZ

I really enjoyed this program and related quite well to the balance issues this family faces.

Although my cerebellum is complete, I have a neurological genetic mutation called Hereditary Spastic Paraplegia. I am not a paraplegic, however, so I have been designated as having paraparesis.

I walk upright, but when I do lose my balance, I fall forward-face forward!When I am tired at the end of a long day, I climb the stairs with all fours, and have been known on really "bad" days to crawl the very same way this family does in order to care for my child.

I believe the Psychologist was correct in that the family needed tools to help retrain their bodies and strengthen their muscles. This would help greatly in the matter of the social stigma they face as Muslims. I sobbed to see their son Hossein, by sheer force of will, walking upright. Beautiful spirit in these children-their parents love them so much.

Terrific program. I hope to see updates in the future.

Sed · Joined: 12 Feb 2008 Posts: 3

I have noticed that the default position of gorillas is a sitting postion staring somewhat mindlessly into the distance, perhaps Nova could compare this to the default postion of couch potatoes and explore the possibility of devolution.

sherbertjello · Joined: 02 Nov 2009 Posts: 2 Location: los angeles,ca

I can not believe that some here do not believe that this is genetics playing themselves out.

Environmental factors, like what? Poverty? Isolation? Bad parenting? Lack of access to resources? Or inbreeding? Those factors occur everywhere. Everywhere.

Not all countries are set up to give aide to those that need it, and most aren't apt to giving it to those that could be termed "freaks."

Our society should come to terms that other societies are not like ours. The only thing we can do to help isn't to sit here and bash what "horrible science" (if there even is a thing) was involved.
Send a walker, send some PVC to make rails. Send money.

DO SOMETHING other than complain.

zbvhs · Joined: 28 Oct 2009 Posts: 2 Location: Walkersville, MD

The presentation left a lot of questions unanswered. Did the researchers compile a family history to see if uncles or aunts on the Father's or Mother's side had any of the same problems? Did they explore the possibility of birth injuries? Did a country doctor or local midwife respond inappropriately to some birth anomaly? Is the hand-walking simply an adaptation to a balance disorder? I noticed at the end that the two of the kids were apparently responding positively to the balance bars installed by one of the researchers. This is an important question: Is the condition reversible? If the researchers went back five years later and did more MRIs, would they find that the kids' cerebella had grown?

The allegation that the condition is some kind of evolutionary reversion or throwback is nonsense. I would guess that it's some sort of genetic anomaly along the lines of Down Syndrome or the like. It's sad to think of the possibilities: where would the kids be today if they had gotten some proper medical treatment and therapy.
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Virgil H. Soule

Does God exist? I don't know, I believe so.