ADHD quackery in scientific journal, again

I was not intending to blog on scientific themes these days, but sometimes duty calls. Carelessly browsing the Web, I suddenly found a link that switched all my alarms on. Briefly, it refers the reader to an article by Pelsser et al. titled Effects of a restricted elimination diet on the behaviour of children with attention-deficit hyperactivity disorder (INCA study): a randomised controlled trial and published in the February issue of the Lancet. I have no access to the full text, but the abstract tells us that from 100 children with ADHD aged 4-8, a randomly chosen half were left as controls and the other half were put for 5 weeks on a restricted elimination diet. There is no mention what this diet was, and the results are described in such a messy way that it is impossible to understand exactly what is claimed. Happily, the same Web site directs the reader also to a LA Times article by Jill Adams discussing the study. It informs us that the restricted diet consisted of "short list of ingredients that included water, rice, turkey, lamb, lettuce, carrots, pears and other hypoallergenic foods". "At the end of the study, 64% of the kids on the limited diet showed significant improvement on a variety of standard rating scales. Though the initial scores for all of the kids in this group put their ADHD symptoms in the moderate-to-severe range, after the diet intervention their symptoms were classified as either mild or nonclinical."

Three years ago, I wrote a post titled I am skeptical about food additives - hyperactivity link. It questioned another publication in the Lancet claiming that "artificial food colous and additives" were causing ADHD symptoms. If you are interested in the subject, you can read that old post, too. In the present post, I will not try to keep the same line of composed argumentation. I am furious and not going to hide it.

Are you worried about the quality of the food you consume? Are you anxious to obtain healthy food and to give it also to your family members? And if so, what are you thinking of yourself? Perhaps you think you are a responsible person and everybody should be like you. Unfortunately, this has nothing to do with the truth. You are victim of a disorder which turns your life into hell and endangers your physical health - and that of any child with the poor luck to be under your care. The obsession with healthy foods is a disorder called orthorexia by some psychiatrists. It is not an official diagnosis but is easily accommodated under the umbrellas of eating disorders and obsessive-compulsive disorder. My observations show that many people with real or imagined health problems, and particularly parents of chronically ill and disabled children, develop orthorexia. They swear that their or their child's condition has been caused by unhealthy eating and is currently ameliorated by some particular "healthy" diet. Here, "healthy" diet typically means one that, if given to convicted felons, will lead to prison riots and charges with inhumane treatment. The list of publications of the first author of the study in question - Dr. Pelsser, is not too impressive but clearly shows that she has orthorexic obsession about ADHD.

People of science have a saying that extraordinary claims require extraordinary evidence. Any claims for successful treatment of a socially important condition are extraordinary, and so are any claims based on an insane working hypothesis. If you ask me what hypothesis I call insane, I'll answer that I cannot give a definition but the hypothesis of foods causing abnormal behaviour is a brilliant example.

I would ask again, as I did in my old post, why wasn't the study done first on animal models? And if someone thinks animal models of ADHD are not satisfactory (i.e. fail to produce the crazy results wanted and expected by the researcher), why wasn't the experiment done first on adult volunteers with ADHD? Maybe because no adult, except some patients with much more severe diagnoses than ADHD, would agree to participate in such a study; but parents eager to streamline their disabled or just different children easily fall into the trap of wanting the child "either cured or dead". In the LA Times article, Dr. Pelsser says, "The children said they felt so different, as if some mad thing in their head wasn't there anymore". Eh well, if your 5-yr-old experimental subject talks of "some mad thing in his head", you should bury your own head in your hands, then abort the study and pray that your institution's ethical committee never hears of this. Has the whole world gone crazy?

The Lancet is a top scientific journal with an impact factor of 30 (for lay people - this is sky high). Such a journal, especially if specialized in clinical medicine, is expected to have a take-no-prisoners peer review that would not let any crap sneak in. However, this journal 13 years ago published the disastrous (now retracted) study linking the MMR vaccine to autism, it published the mentioned article linking food additives to ADHD 4 years ago, and has now published another nonsense about ADHD. When will the respectable Lancet raise its bar for quacks and stop shouting "Fire!" in crowded theaters?

Quacks of the world, keep your dirty paws off autism!

The text below is a translation (omitting some minor parts) of what I posted on my Bulgarian blog on Jan. 11 as a reaction to the dangerous export of autism quackery to Bulgaria.

The problem of children with autism is that they look quite like the others. When there is inborn malformation, chromosomal disease, sensory disability or another quite obvious problem, parents and society eventually accept the fact that this child is different and will remain so. But the inpredictable time course of autism, its still mysterious nature and the normal appearence of autistics mislead parents to hope that they will somehow be able to bring their child to norm. In fact, today the diagnosis of autism is handed around like candy, often by people who are not competent to diagnose but know well how to "cure" the incurable condition of autism (you ask how? - by relieving parents of their too abundant money). Many of the alleged autistic children actually have only speech delay and eventually catch up spontaneously. But pronounced autism is another thing. In the framework of an unaccepting society, it is perceived by parents not as a part of their child's personality but as an enemy to be faught. And then the quacks wishing to separate them from their money lure them easily and catch them on a hook without even a bait.
The last "achievement" of this sort belongs to Tokuda Hospital in (the city of) Sofia... They organized a conference on autism on Jan. 8-9. A special guest who presented a lecture on this conference was Dr. Arthur Krigsman, (advertised as) "a world-renowned gastroenterologist" from the USA...
A minute's Google check shows that he is indeed world-renowned. Have you a page in Wikipedia? Has your child's doctor or the hospital's director such a page? No? Eh well, Dr. Krigsman has one. You can read in it that he is known for his controversial and widely-criticized research in which he attempted to prove that the MMR vaccine caused autism. I love this little English word "controversial". It is used e.g. for Jeremiah Wright - the US president's favourite minister known for his statement that the USA deserved the Sept. 11 attacks. When a doctor is called "controversial" by a restrained source like Wikipedia, you can be sure that he is a top quack already fired from everywhere and awaiting only the prosecutor's subpoena, if not having received it already. I guess the coming of such a high guest to Bulgaria must be a reaction to some call "Quacks of the world, unite!".
From the conference at Tokuda Hospital Dr. Krigsman went to the At a cup of coffee TV show aired on the Nova TV Channel, so that the entire Bulgarian nation could enjoy his blessings. I owe thanks to my mother in-law who heroically watched the program and then retold it to me (I could not see it personally). To sum up, Dr. Krigsman explained for an hour how the neurological disability known as autism is due either to the digestive system or to the immune system or to heavy metal poisoning, how vaccines are to blame, how autistic children must be subjected to colonoscopy and biopsy (an invasive and not quite safe procedure) and how his method provides a cure for autism, described in all medical textbooks as incurable. And at the end of this hour, the gentleman said, "We are not curing autism, we are curing gastrointestinal diseases!" Ha-ha-ha. Western quacks always include such a disclaimer in order to avoid the heavy grip of law. Dr. Krigsman was unaware that in our part of the world, rule of law is a bit sickly and everybody can lie as he wishes without any disclaimers at all.
Unfortunately, (TV show host) Gala - this pride of Bulgarian journalism, really succeeded in advertising the US quack doctor. You can see the discussion in BG-Mamma (the major Web forum of Bulgarian mothers). I could endure only a brief glance on the first page. It looks to me like a chorus from the circles of Hell where gullibility is reinforced by positive feedback as it is handed from one desperate soul to another. But those who are really in the circles of Hell are the children (and adults) with autism. Not because of the autism itself but because of our attitude.
What do I mean? Imagine that you have a disability - let's say, you are blind or your legs are paralyzed. Imagine that society does not wish to accommodate to your disability, refuses to give you Braille books or a wheelchair and instead wants you to start seeing or walking. It suggests to you that if you fail to achieve this, you have no value, you are not a complete human, it is not clear whether you are human at all. Now imagine that your family members, on whom you have to rely because of your disability and your tender age, are not interested in your real needs but instead wonder how to cure you. They put you on a diet without bread, dairy products and everything you like, and they swear that, thanks to this diet, you already distinguish light from darkness or have slightly moved your left toe. (I am referring to the notorious gluten-free casein-free diet that not only does not lessen autism traits a bit except for the placebo effect, but deprives children of calcium and so makes their bones thinner.) Moreover, your relations bring you to some quack to poison you allegedly to detoxicate you from heavy metals, endangering your life. They also bring you to another quack to puncture your intestines, again endangering your life. They subject you to all sorts of experiments that are not even included in a legal experimental medicine study. They repent for the vaccines that have allegedly contributed to your condition, and swear not to vaccinate your little sister - which you take as a message that they'd prefer her to die of measles than be like you.
Unfortunately, right now I have no time to write a serious text about autism, which seems to be necessary. For those who can read English, I recommend the sincere tale of Dr. James Laidler how he himself got involved in quackery because of his desperation after his two children were diagnosed with autism, and then the blog of "Prometheus" - a molecular biologist and father of an autistic child. Meanwhile, to all who care for children or adults with autism, I wish high spirit, health, physical and emotional strength - and act cleverly!
(In an update, I added that Gala's guest was not only Dr. Krigsman but also his pal Dr. Anju Usman, who has direct responsibility for the death of 5-yr-old Abubakar Nadama by referring him to Dr. Kerry to be "treated" with the poison EDTA that killed him.)

Economic crisis? Take from disabled children

In my previous post Bulgarian children with cerebral palsy to be deprived of therapy, I wrote how the best Bulgarian facility for treatment of children with cerebral palsy and heart defects will be shut down (or deprived of funding, which is effectively the same thing). This decision was justified by reminding that "it is economic crisis now". An official, talking to a mother, said in plain text that "there is no profit from the children, on the contrary - there is loss".
A week ago, an American father of an autistic child blogging as Club 166 wrote a disturbingly similar post titled An Inconvenient Truth. Here are quotes from it:

"Unfortunately, one of the things that has become obvious to me over the years is that the general public doesn't have a clue what it's like to raise a special needs kid, has no real desire to know what it takes, and when times are the least bit tough the public is especially willing to throw our kids under the bus if it will help their own situation in any way. This is true, whether it's a smaller, relatively well off district like the one we live in, or a large one such as Los Angeles... When L.A. schools Superintendant Ramon C. Cortines was talking about a school for the blind in the LA Unified School district he recently said,
"Some of those are very, very severe cases, but you have to look at it in perspective. When you fund some of the special ed things, you're taking from regular kids."
Aside from it being blatantly against the law for economic considerations to be driving who gets what services, there is the whole "attitude" thing... The attitude that while "regular" education is a right in this country, that special education is a privilege that can be easily revoked at the first sign of money trouble. The attitude that my kid (and millions like him) just aren't worth it.
...Such attitudes are not limited to uneducated or poor people. Indeed, my personal feeling is that such attitudes get worse, the higher up the socioeconomic scale one is on. It doesn't matter what overall political viewpoint you hold. Platitudes regarding equality rapidly fall apart when it comes to spending a dime on special needs education instead of the football team..."

The problem seems to be universal. I hope, however, that none of my readers will fall into the trap of fallacies common in Bulgaria and other backward countries - namely, that any phenomenon existing in a developed country is necessarily a nice thing. Or if it is not nice, then it is such a colossal problem that it is impossible to find a local solution and we should not even bother to try.

Bulgarian children with cerebral palsy to be deprived of therapy

Today is June 1, marked in many countries as Children's Day. It is devoted to all children - not only to those who win A grades and sport races without much effort and allow Mommy to make a career, but also to children with disabilities. So little is done for them in Bulgaria, and even that little is taken away when government wants to tighten its budget. The Sanatorium (therapy facility) for children with cerebral palsy in the town of Bankya near Sofia is being closed down. Below I am translating a letter of a mother published by two other bloggers - Lyd and Yana. The information in it is confirmed also by the Darina's memorial site and by a group of parents and activists starting a petition to save the facility.
You can sign the petition here. The top line (field in grey) is for your full name. Next two lines are for your city and country. The large field is for your comment and is optional. Below you must write your e-mail and the anti-spam code and press the button "подпиши" (sign). You will soon receive an e-mail with a link you must click to confirm your signature. It is too complicated indeed, and I doubt how efficient such petitions are. I advise you to do whatever else comes to your mind - give publicity to the case, write directly to Bulgarian and EU institutions etc. Because nothing ever improves in Bulgaria without foreign pressure.

Now, the letter of Daniela Peneva:

"Dear readers, I am a mother whose son has cerebral palsy. The only treatment for him is the physical and occupational therapy he has received for 6 years at the Children's Sanatorium (Therapy facility) in the town of Bankya. Under the care of the professionals working there my son already can walk on his own and becomes more independent every day. And he is not the only case - the therapy at the Bankya Sanatorium has helped many children to improve and start walking.
Unfortunately, the Sanatorium will no longer be a place for therapy of children. It has been the only facility in Bulgaria for therapy of children with heart problems. And the children with other problems will be redirected to other facilities where the therapy is of lower quality and gives poorer results. Therefore, closing down the Bankya facility is a clear violation of the rights of our children under national law and the UN Convention...
8 years ago, the Bankya Sanatorium was thoroughly renovated by a German foundation (Kaiser's Fund). Appropriate equipment for children's therapy was bought... The problems began 4 years ago when the Sanatorium was closed for first time during the winter (presumably to spare the money needed for heating - M.M.). Unheated and unused, it began to deteriorate. This situation continued for 3 years. Then, last year the health minister changed the affiliation of the Sanatorium... Two months later, in October (2009), the Sanatorium was closed and the personnel was given unpaid leave until June 1, 2010. We, the children's parents, all awaited and planned the therapy for June.
On April 16, 2010 I called the director responsible for therapy facilities and asked him when the Sanatorium would be reopened so that we could enlist our children for therapy. They answered me that it is economic crisis now and the Sanatorium would not be a facility for treating children anymore. There said that there are two Sanatoria for children in Bulgaria (the other one is in the town of Momin Prohod) and it is impossible to sustain both because there is no profit from the children, on the contrary - there is loss (emphasis mine - M.M.) Because of the long period when the Sanatorium was closed, some professionals have left and have not been replaced. The officials did not tell me what purpose the building would serve in the future, but said that surely it would no longer be used for children's therapy...
Because my son has cerebral palsy and not a heart problem, there are still some facilities where he can receive treatment and somebody would say that I should bring him there. We have tried other facilities but no one was as good as the Bankya Sanatorium. Professionals there have real attitude to the children, their parents and the problems. They worked in order to help, and achieved results. Their therapy spared surgery to some children - 2 operations to my son alone. Also, they trained parents how to work with their children at home, because children need daily therapy and the Health Fund pays only for 10 days.
These are children, human beings. We have not abandoned them in care homes, although this has been suggested to many of us. On the contrary, we try to make our children as independent as possible... For that purpose, we need high-quality therapy and we insist on it!
The building of the Sanatorium has been donated under the condition that it would be used for children's therapy.
We, the parents of children treated at the Bankya Sanatorium and several disability rights organizations, are starting a campaign to save this therapy facility. We are asking for your support! Help the children!"

Update from June 3: Yana reports that the Sanatorium will be reopened these days but only for several months because it will not be heated. Guess how many therapists will remain on "payroll" to survive with 3-4 monthly salaries per year. The other bad news is that no contract with the Health Fund has been signed for 2010, which means that families will have to pay all therapies - 40-50 leva (EUR 20-25) per day. I call this adding insult to injury, because my net salary, which is above the average for Bulgaria, is about EUR 450, and most of the mothers of these disabled children stay at home in order to care for them. Forcing them to pay for therapy is a crime. My guess is that authorities are pretending to keep the Sanatorium open, maybe because of the outcry, and will close it the minute public opinion looks somewhere else. And meanwhile they are imposing outrageous conditions on families of children treated at the Sanatorium, and on the personnel.

Harsh sentence for Nicky Reilly

Nicky Reilly (photo copied from the Guardian, original source PA.)

I first blogged about Nicky Reilly on June 26, 2008. These days, I googled his name to check for any news on him and saw that he was tried and convicted in January. Below, I am quoting most of a Jan. 31 report from the Times:

"Nicky Reilly, Muslim convert, jailed for 18 years for Exeter bomb attack
Adam Fresco, Crime Correspondent
A vulnerable Muslim convert who was persuaded by extremists to attempt a suicide bomb attack was jailed for a minimum of 18 years yesterday.
Nicky Reilly, 22, who has Asperger’s syndrome and a mental age of 10, was described by his lawyer as the “least cunning” person ever to have been charged with terrorism...
At his trial in October last year Reilly, from Plymouth, Devon, who appeared in court as Mohamad Abdulaziz Rashid Saeed, pleaded guilty to attempted murder and preparing an act of terrorism.
Sentencing him to life imprisonment at the Old Bailey yesterday, Mr Justice Calvert-Smith said that although the attack was “an unsophisticated attempt”, Reilly was a “significant risk” to the public.
After his conviction, counter-terrorism officials said that extremists had taken advantage of his low IQ to groom him.
Reilly, who has an IQ of 83, had first been taken to see a pyschiatrist when he was 9 and tried to take an overdose at 16. Kerim Faud, representing him, said: “He may comfortably be deemed to be the least cunning person ever to have come before this court for this type of offence.”
He is thought to have met British-based Muslim radicals in internet cafés near his council home, which he shared with his mother.
Security sources said that radicals encouraged him to visit internet chat rooms and other websites, where he encountered men based in Pakistan who helped to mould a violent hatred of the West. He discussed with the men what his targets should be and they directed him to bomb-making websites.
In a suicide note left in his home he paid tribute to “Sheikh Osama” (bin Laden) and called on the British and US governments to leave Muslim countries. He said that Western states must withdraw their support of Israel, and that violence would continue until “the wrongs have been righted”.
On May 22 Reilly put his plan into action... When he arrived at the Giraffe restaurant he ordered a drink and sat for ten minutes before heading to the lavatory to make the bombs.
Fortunately for the 24 customers and 11 staff in the restaurant and the 20 more people lunching outside, the bombs exploded in the cubicle.
Mr Justice Calvert-Smith said yesterday: “I am quite satisfied that these offences are so serious that only a life sentence is appropriate. This defendant currently represents a significant risk of serious harm to the public.
“The offence of attempted murder is aggravated by the fact that it was long planned, that it had multiple intended victims and was intended to terrorise the population of this country. It was sheer luck or chance that it did not succeed.”
He accepted that the attack was unsophisticated but added: “Those who attempt to commit suicide and in doing so murder other people are almost invariably unsophisticated in many aspects. That lack of sophistication saved many Londoners on July 21, 2005.” "

Those who know me will confirm that I am definitely not a fan of Islamic extremism - or, for that matter, of any thing Islamic.
However, the harshness of the sentence raises my outrage. 18 years! I know of many Palestinian failed suicide bombers who were non-disabled and nevertheless were treated much more leniently by Israeli courts. Justice must be driven by more serious considerations than the knee-jerk feelings of people concerned for their own safety. Reilly has mental disabilities, which in any civilized country should mean not to hold him responsible the way a typical person would be held after doing the same thing.
I also think that some disability advocacy and self-advocacy movements may be doing a disservice in such cases. In recent times, they often make efforts to portray people with mental disabilities as identical to non-disabled people in all respects except in the need of some extra services. As the Self-Advocates Becoming Empowered stated, "Our mission is to ensure that people with disabilities (a) are treated as equals, (b) are given the same decisions, choices, rights, responsibilities and chances to speak up to empower themselves, and (c) are given opportunities to learn from mistakes, as everyone else". However, in real life there are too many mistakes that can be made only once. I understand that nobody wishes to be stereotyped as a person with decreased ability to tell right from wrong, but I fear that the demand "Give us all the rights and responsibilities of the non-disabled" is leaving people like Nicky Reilly behind.

To end this post (in fact, as an instant update to it), I am quoting a comment to Fresco's report in the Times:
"Prison? Secure hospital accommodation surely, and all since the support he needed earlier in life was absent or inadequate. I fear the real terrorists were the first people to accept him and warmly (but falsely) welcome him in. Tempting, for a depressed outsider.
(adult with Asperger's) Chris , Launceston, UK"

Together or apart?

It is still discussed whether disabled children should be educated separately from non-disabled or together with them, but nowadays most people accept the latter opinion - even for disabilities that affect the very process of learning, as well as interacting with other people.
On Feb. 25, S. Ravishankar published on the WIP site the article From Marginalized to Mainstream: A Call for Inclusive Education in India. It reflects the author's personal experience as mother of a special needs girl who moved from India to America to seek better education for her daughter. Here are some quotes: "Through our own experiences, I’ve come to believe that the kind of change India needs will only come when society fosters sensitivity to the concerns of special-needs individuals by mainstreaming them with typically-learning children of their own age... In our search for a private tutor, we chanced upon two highly-trained and experienced teachers specializing in special education. Our child did quite well under their tutelage, but being a gregarious individual, needed to interact and socialize with typically-learning kids. Richard Riser, director of the London-based educational organization was quoted in India Together saying, “Special schools are dead-ends for special-needs children. They promote isolation, alienation and social exclusion"... India has a long journey ahead. A change in attitude towards people with disabilities will only come when more disabled people are included in regular schools and the workforce; they must be given the opportunity to participate in society as individuals of equal standing. Educating them alongside other children is the first step towards a more tolerant and well-adjusted society." Another interesting observation is that the quality of education was directly proportional to teachers' wages.

I discussed the article with some autistic friends and one of them replied, "One thing the author said bothered me:"Our child did quite well under their tutelage, but being a gregarious individual, needed to interact and socialize with typically-learning kids." What, other disabled kids aren't good enough?"
I said, "I think this is a very important question and it has come to my head, too... The current school system is set so that the education of each student heavily depends on the level of the other students in the classroom. As a result, each parent wishes his child to be among better performing children. If the child is above average, then classmates at the same level are acceptable, but if the child is below average (for any reason - disability, poor language skills, poor socio-economic background), then the parent doesn't want his child to be among children in a similar situation because they would allegedly "keep him behind". My opinion is that some way must be found for the education system not to depend on young children as co-teachers and rely on them - teaching should be responsibility of the adult professionals. Then parents will stop regarding other children as mere tools in the education of their children (or,alternatively, as obstacles to good education)."
Another mother added, "One thing that bothers me about this especially with autism in mind is that many parents assume that children learn social skills simply from being around other children. I can attest to the fact that that is simply not the case. Children on the (autism) spectrum do not pick up social skills by osmosis... Other children can be very unpredictable to an autistic child and that is the reason they may not enjoy being around other children... I seriously doubt that self absorbed children would even try to figure out a way to engage an autistic child. I was either ignored or made fun of in school by all but a few and I see the same thing with my son when he is in an environment with typical children. I would prefer my son to be in a class with peers who may take an interest in him. Right now he is in an autism unit at school and actually has friends because they share interests... He is very limited in speech but he writes their names and smiles and points to their picture excitedly as if to say this is my friend."

It is indeed strange how adults think that involuntary coexistence, which they wouldn't wish for themselves, would do wonders for children. This discussion reminded me of Estranged's March 11 post Kindergarten, part 2: Silvia, most of which I am translating below:
"One of the first things I saw at kindergarten was a child swallowing the ENTIRE soap in the bathroom. The teacher got angry and shouted that he would soon vomit. After a short silent waiting, her words came true and the child really vomited the soap. It was a disgusting sight. I was seeing such a thing for first time in my life, but I did not show my surprise to the others. That place was the hell for me and I was preparing to consider all sort of shocking things as normal.
The sight of the vomited soap did not prevent me from eating my lunch because I was already taught that I had to eat 100% of the meal in all cases, no matter how I was feeling.
However, I first checked my lunch for hidden surprises. In that place, paranoia was the only way to survive. As I was checking my milk, a drop from the spoon fell on my pants. I dried it quickly. At that moment, I heard the teacher telling all children, "See, he stained himself because he is Zhilov."
The only purpose of these words was to offend me publicly, this was quite evident. Something else, however, bothered me. I asked myself, Why did she say "Zhilov" (his family name - M.M.) and not "Vesko" (his first name)? What had my Zhilov family name to do with dropping milk on my pants? Since when does the name given to you determine your spoon-holding skills? Would I use the spoon better if I had been born with another child's name?
I was trying to discover in her words some hidden sense but it evidently didn't exist. It was just a stupid and illogical attempt to insult. For umpteenth time, adults were making fools of themselves by talking nonsense. This worried me because it meant I couldn't rely on adults at all.
Finally, I figured out the true meaning of those words. It came after a little while: "You boast that at the age of five you play the piano and can read... (I had never boasted, my grandmother was bragging about me and doing me much harm.) And at the same time you cannot drink a cup of milk. You are like Silvia."
Meanwhile, Silvia was sitting under the table and rolling a boiled egg in the dirt and dust. This statement also failed to offend me. I was really like Silvia and not ashamed of this.
Silvia was the first girl I befriended. We were both five years old. However, she behaved like a baby. She couldn't talk, and her drawings were meaningless scribbles.
Silvia and I weren't Real Children. One of the first things I learned was that I was required to play with a ball. Every Real Child in the world should be able to do this. However, I was seeing a ball for first time and had no idea what I was expected to do. Silvia and I were staying in the yard, and after some trials I learned how it was done. (Silvi, to my regret, couldn't, though I tried to teach her.) At the third day, I already had a good personal ball-playing record. I was glad but, interestingly, I had no illusions. I didn't expect my success to lead to my recognition as a Real Child - I already knew that there was nothing fair about the entire business, so it wouldn't matter even if I had managed to stand on my nose.
I protected Silvia from the real children. They said I was her boyfriend...
Later, I left the kindergarten. I was hearing stories about how Silvia's classmates at school humiliated her. They forced her to drink water from pools and to eat mud. Then Silvia went to a special school and - oh wonder! - after several years became a relatively normal person. A feat I never managed to do.
Silvia surely does not remember me, but I do remember her. I have changed the name of course."

The term "Real child" is interesting. Independently from Estranged, the Chaotic Idealist last year wrote in a post titled Real People:
"I started a conversation with a random stranger.
Me: "I've got Asperger's. It's like mild autism. I guess nowadays I'd have been a special ed kid."
Her: "That's OK. I like special people just as much as real people."...
I wonder if that's common? Do people really think we're not as "real" as other people? And what does "real" mean?... "Real" is probably an unofficial synonym for "normal"."

Bulgarian authorities deprive disabled children of education

Two students in front of the "good" building of 2nd Auxiliary School in Sofia. Photo by Nadezhda Chipeva, copied from the site of Capital weekly.

I watched this story unfolding on TV news last year but unfortunately hadn't the opportunity to blog about it in real time. The Mogilino blog reports it properly and Bulgarian readers can go directly there. I'll translate now the most important moments.
In October 2008, Bulgaria lost in court after the Mental Disability Advocacy Center filed a complaint in early 2007. "Bulgaria is de facto depriving disabled children of their right to education. This was announced by the European Committee of Social Rights... The Committee found evidence that the Bulgarian government failed to provide education for up to 3,000 children with intellectual disabilities living in so-called ‘homes for mentally disabled children’. Only a small percentage of these children attend school, and the educational programmes carried out inside the institutions do not actually constitute education. Schools and their personnel are not ready to satisfy the needs of disabled children, and government does nothing to solve the problem." The story is reported in more detail in English at the Mental Disability Advocacy Center site under the title Bulgaria: right to education.
So much about the fate of those disabled children who are wards of state. What about the others who haven't been abandoned by their parents? In Bulgaria, most children with milder forms of mental retardations are educated in special, so-called auxiliary schools. I don't want to discuss here the controversy of educating disabled children in segregated vs. inclusive settings; I believe, however, that even the most passionate opponents of special education will agree that it is better than nothing and shouldn't be dismantled if this means simply throwing the kids out into the street. However, this is exactly what happened in my city of Sofia.
Let me translate the Sept. 26 Mogilino post Suspicious maneuvre of the Ministry of Education: "Capital weekly reports that the Ministry of Education wants to merge 5th and 2nd Auxiliary Schools in Sofia in the building of 2nd Auxiliary school because this building was allegedly better. At the site of Capital, you can see the damaged surface and the unkept yard of the "better building". You cannot see how it looks inside, because the Capital reporters haven't been let in, similarly to those of NTV channel before. It is noteworthy that the (building and land of) 2nd Auxiliary School is in the process of being returned to its rightful owners while the land of 5th Auxiliary School has been donated specifically to build a school. It seems that somebody wants very much the land of 5th Auxiliary School."
The story is continued in the Oct. 5 post Children in wheelchairs need not come: "Fifth Auxiliary School was closed last week by the Ministry of Education, against the law. The children were moved to the building of 2nd Auxiliary School, which for most of them means travelling additional 15 km in either direction. The Ministry promised transport for all (72) students but in reality provided a bus with only 8 seats. Children in wheelchairs were told that they didn't need to come to the new school because there was no way for them to be transported to it and the building itself wasn't accessible, wheelchairs couldn't even pass through its front door. A desperate mother wrote this letter which was published at the Capital site." (In it, the mother describes the illegal action of authorities, refuses to let her son be educated in awful conditions and vows to leave work in order to homeschool him.)
I watched the continuation of the story on TV news: Indeed, many parents of children formerly educated at 5th Auxiliary School refused to send them to 2nd Auxiliary School - either because it was not wheelchair-accessible or, in some cases, because parents feared it could collapse any moment. In a Catch 22-like turn, authorities accused these parents in depriving their children of education (!) and threatened them with punishments.

Advocating for institutionalized disabled Bulgarian children

Last year, when I posted about Bulgaria's abandoned children, a commenter wrote, "I am the mother of 2 Roma children that I adopted from Bulgarian orphanages 10 years ago. My daughter was 7 years old. When we were in Bulgaria visiting our daughter we found out that she had a twin. Further investigation let us to find out that the twin was still alive but was "severely affected." We asked for a medical evaluation and we were denied our request. We asked to visit her and we were told we would not be permitted to visit... Every time I look at my daughter I wonder, what happened to this girl named Sofka. She would be 17 now... Maybe someday we will find out what happened to her." I reposted the comment last November under the title Does anybody know what happened to Sofka.
Happily, a regional child protection agency finally did its job and informed the adoptive parents of Sofka's sister (named Penka) about Sofka's whereabouts. She was in the Care home for children and adolescents with mental retardation in the village of Krushari, North-East Bulgaria. My Apr. 21 post where I thought about the future of institutionalized disabled children as they reach adulthood was also inspired by Sofka's fate (though didn't mention her name).
In July, the US family that had adopted Penka visited Sofka in Krushari. Then the mother sent a new comment which I am reposting here, with her permission.

"Our journey to find Sofka and be united with her is over. We just returned from Bulgaria yesterday. It was a life changing experience and I want to share with all of you that Sophie is doing much better than we anticipated. In fact Sofka now WALKS!!! We got to spend a few hours with her and she appeared to be in pretty good health though very small. We observed that she seems to have the capability to learn and may not be as cognitively impaired as we had feared. So doesn't speak BUT she definately understands her surroundings and given that she has just recently learned to walk I feel that she may be capable of much more.
The director of this institution has only been in his position for 6 months and I will tell you that he appeared to be a very sincere man who wants to help these kids. We specifically asked him what his needs are since it is our intention to provide as much support as we can. He cited that his most urgent need was a physical therapist. He said that it is hard to attract that kind of skill set to this village. The pay is not too great. We promised to do what we could to help him find someone and if we need to we would suppliment what they could pay. (A therapist has just been appointed - M.M.) We are also going to provide Sofka with a walker to aid in her progress with walking. When she is done with it they will give it to another child. He indicated to me that a Dutch group has provided their caregivers with so training and the woman who works with Sofka works one-on-one with her. She was very attached to this woman. It was obvious that this method was working since she has just recently started to walk.
We were able to interact with many of the other kids there. They were very friendly and they all appeared to be healthy. My 13 yo son was with us and they LOVED hanging with him! He loved meeting them to and wants to come back next year and spend more time with them (I suggested he do Karaoki with them). The care givers I met were all very nice and they all wanted to see pictures of Penka, Sofka's sister.
In what I felt was a real show of trust the director asked us if we were interested in seeing the area where the really severe, bedridden kids were. We did, even my son went in to the newer building. It was not easy but there was no foul smell and the areas were clean. The kids were thin and he said that he had added another meal (4 meals) to see if that would help them gain weight. He also cited that he only has 3 caregivers in this area for 40 kids but he is looking to triple that in the very near future.
We are now setting up a means to send financial support to Krushari. My son is taking on fund raising as his Bar Mitzvah project.
Next summer we will return with Penka. She is very excited to meet her sister and when she saw the pictures of her she said "Mom we are so cute arent we?"
As I said, it was life changing for me to go there. I feel that they are doing what they can to help these kids. Anyone who can go there and offer the skill sets that they need should contact me at mbaeck@verizondotnet."

I have stated before that I am for deinstitutionalization of disabled children and adults (and also of non-disabled abandoned children). However, institutions are still the reality for Sofka and many others and I would wish to express my admiration of those employees who try their best to make this reality as good as it, and of devoted community members such as the author of the above message.
Bulgarian readers can also read here about two girls from the Krushari care home who are integrated in 6th grade of the local school.

Surviving global war with mental retardation

My blog generally isn't intended for mentally retarded people. In fact, if I have such readers, they are likely to find some my posts very offensive. But today I'll make an exception.
We are living in a global war and people who should be 100% civilians get involved. Lynndie England had been oxygen-deprived at birth and apparently had borderline mental retardation. Nevertheless, she was allowed to join the US army, sent to Iraq and after taking part in Abu Ghraib prison abuse, was sentenced to jail. But at least she wasn't taken advantage of and sent to a suicide mission, as the enemy did with Nicky Reilly.
I learned Reilly's story not from the news but from a disability forum. In fact, it was reported by some major media, but not on their front pages. They really care not to make Islam look bad, so they stress on Islamist terror only when it is lethally successful. Thank Heaven, in this case it wasn't.
On May 22, Nicky Reilly (22) tried to set off a suicide bomb in a crowded restaurant in Exeter, England. The bomb misfired and Mr. Reilly was the only one injured. He was autistic, had the mental capacity of a typical 10-year-old and was coming from a troubled family. The consensus opinion of his neighbours was that he had been brainwashed by Islamists. After converting to Islam several years ago, Nicky Reilly changed his name to Mohammed Rasheed, started to hate his family and to call them infidels. Significantly, he "had a screensaver of the Twin Towers in flames from the 9/11 attacks on his home computer and would often watch a video of the atrocity" (source: Inside bizarre world of the Big Friendly Giant, by Jamie Doward on The Observer). Before detonating his device, Reilly "had been sent a text message of encouragement".
Reilly's story would be troubling enough if it was isolated, but it isn't. Doward quotes Haras Rafiq, executive director of the (British) Sufi Muslim Council: ''Many converts to Islam have a sound spiritual reason, but there are also some who get brainwashed by extremists because they don't have the mental foundations to counter their arguments." Rafiq also "said the grooming of vulnerable people for suicide missions was well documented in the Middle East and claimed that there had been cases of terrorist organisations hacking patient health records to identify the vulnerable." In the Newsweek article Al Qaeda's New Recruits, authors Isikoff and Hosenball write: "U.S. officials acknowledged that the Reilly case points up a general concern they have about efforts by extremists to prey on the mentally handicapped... Earlier this year, two markets in Baghdad were attacked by women suicide bombers who allegedly had been targeted for recruitment by Al Qaeda because they were mentally handicapped... A British counterterrorism expert, who asked for anonymity when discussing sensitive matters, said that the Palestinian militant group Hamas also had a history of recruiting mentally handicapped or emotionally vulnerable people to carry out suicide missions."

So let me offer some tips that could help people like Reilly survive the current war.
1. If you have mental retardation, don't become a combatant of either side. Don't repeat the mistakes of Lynndie England and Nicky Reilly. If there must be war, let other people fight it.
2. Do not change your religion. This will only isolate you from your family and community. Even if some religions are truly better than others, God is unlikely to be so touchy about the exact way people worship Him. Specifically, do not convert to Islam. This may make some unscrupulous people try to use you as a tool for their goals.
3. If you are born in Islam or have already converted to it, practise your religion modestly and piecefully. Remember Tip No. 1 and do not ever consider to join jihad. Disabled Muslims are exempted from jihad (see the Koran, Sura 4, Verse 95) and you are disabled.
4. Do not listen to people who persuade you to convert to Islam or, if you are already a Muslim, to join jihad. Do not participate in arguments with them. They will use their faster, sharper minds to take advantage of you. If such people try to argue with you, just repeat, "These things are too complex for me, I cannot understand, I have mental retardation." Pretend that you do not understand anything at all. This isn't the moment to prove that you also can reason. Leave the other person as soon as you can. Inform about the incident your parents or other trusted people.
5. Do not let anybody convince you that your life is insignificant and you must make some self-sacrifice to add value to it. Your life is valuable as it is. Enjoy it.
6. Do not let anybody convince you that someone else deserves death. How would you feel if the same is said about you? The Nazis did say that mentally retarded people do not deserve to live, and killed thousands. Now, some people say that "infidels" do not deserve to live. I wonder how they can be so pompous to judge who is to live and who is to die. Do not listen to them. Live your life and let other people live theirs.

No disabled people in our part of the bus

Discrimination is sometimes described as "sending people to the back part of the bus", as was done in the US South to black people in the bad old days. However, the essence of discrimination isn't sending the victims to the back part (considered worse than the front part). It is merely isolating them, sending them to the part where we aren't now.
Our public transportation vehicles contain several seats in the front part designated for disabled people, sick people and mothers with young children. Unfortunately, this is occasionally used by other passengers to allocate these people only to their reserved seats, while the traditional etiquette orders you to offer them your seat, no matter where you are sitting.
Actually, mothers often prefer to go to the middle or back part, because they fear that the child will disturb the driver and he will call them names or even order them out of the vehicle. This is especially true for mothers of ill-behaved children and children with some disabilities. "Ill-behaved" actually means "behaving like a child rather than like an adult in miniature" and the disabilities I mean are mental retardation and other disorders that make it impossible for a child to behave like an adult in miniature, no matter how much you beat him.
A week ago, I was returning my elder son from kindergarten. We were sitting in the middle part of a trolley bus slowly making its way through the evening traffic. An old lady with a big sac and a 5-year-old girl entered the nearest door. The girl was clearly different or, if we put political correctness aside, there was something wrong with her. She hadn't the focused intelligent eyesight and precisely coordinated movements of a normal 5-year-old, her upper jaw was too large and she occasionally uttered frightened, unarticulate sounds.
Nobody else offered his seat to the grandmother and the girl, so I did, saying, "Please come here with the child". The old lady, plus some other passenger, said, "But you are also with a child!". I replied, "My hero will be OK standing." And then somebody else said, "There are special seats in the front part for such disabled people."
Nobody commented anything. A sitting woman invited my son to sit in her lap. This was very kind and came just in time, because my ill-behaved child hates to travel standing. However, I couldn't help thinking that she wouldn't invite the other child to her lap.
Let me end the post with a quote from Svetla's Feb. 26 post. It commented a charity pop concert urging the TV viewer to donate a small sum for the children in the Mogilino care home via an SMS message. Svetla wrote, "Instead of shedding tears, listening to pop music and sending SMS messages for the poor "mentally retarded" children and at the same time avoiding them like leprosy-infected in the street, we'd better realize that they deserve respect and paying regard to their human dignity no less than any of us."

The good and the bad side of Bulgarian money

Bulgarian money (image copied from here). At the bottom of the photo, i.e. the right sides of the bills, you can see the figures for recognition by the blind - circles, triangles and rectangles.

Current US dollars can be recognized by vision only. However, as Monique Garcia wrote in Chicago Tribune on May 21, "A ruling Tuesday by a federal appeals court in Washington may change all that. The judges found that because different denominations of paper money are indistinguishable by touch, the government is discriminating against blind people. The decision could force the Treasury Department to make significant changes to currency, such as printing different-sized bills for different amounts or giving them raised markings."

The news, plus a link to Garcia's article, was reported by a member of autism-disability forum AutAdvo. This started a discussion about how bank-notes (bills) could be made distinguishable to the blind. I wrote, "Our bills of higher nominals already have signs for the blind. They are circles and triangles about 3 mm big and slightly protruding." In fact, as you can see in the above image, even the smallest bill of 2 leva (EUR 1) is marked by figures, in this case two rectangles. I was mistaken because I don't rely on the raised marking to recognize bills. When holding a bill, I can only sense that this place of it is different; I hope that blind people with their trained touch can really sense the figures.

This money story makes me proud of my country (which doesn't happen often at all). We have surpassed much more developed and civilized nations. Watch us, Americans, and learn from us!

However, there is a sad moment in my delight, because I remember a night radio program in late 1996 or early 1997. The radio host had invited the representative of the International Monetary Fund for Bulgaria - an unusually high-ranking guest for a program broadcasted live between 12 PM and 3 AM. The host asked him whether he would advise Bulgarians to trust their currency and if so, what arguments he would use. The IMF man replied jokingly, "Yes, I would tell Bulgarians to like their money, because it is very beautiful!"

This dialogue, taking place in the most surreal hours of the night, quite fitted the surreal situation in Bulgaria at that time. We were suffering hyperinflation of the type usually observed after a world war. Upon receiving my salary, I thought what I could do to prevent it being eaten away by inflation and decided to buy paper for the printer at my workplace. (Of course my employer had to buy this paper, but Bulgarian university teachers are forced to finance their work with their meager wages.) So I went to the bookstore just to discover that a package of print paper costed a little more than 3 my monthly salaries. At the maximum of hyperinflation, my salary had thawed to the equivalent of $ 4, and $ 0.6 of it was actually held as income tax.

The next government, after quashing the hyperinflation, made a monetary reform. The beautiful bills to which the IMF representative was referring were replaced by new ones, also beautiful, and with raised marking for the blind. So far so good.

However, poverty remained chronic in Bulgaria and ordinary people were trained to think that there is nothing wrong if their incomes increase at a slower rate than inflation. Now, analysts are warning us to prepare for a new surge of inflation, based on increase of fuel and food prices.

But at least we have better money than the Americans.

How to secure a better future for a severely disabled adult in Bulgaria?

My regular readers may remember that I had a post asking for information about S., a disabled girl institutionalized after her birth 17 years ago. The information was sought by a lady who had adopted this S.'s twin sister. Recently, this lady informed me that a regional child protection agency had finally found S. She is at an institution for mentally retarded children aged 3-18 in a village in North-East Bulgaria. (For privacy reasons, I prefer not to give here the girl's full name and the institution in question.)
At some point after turning 18, S. will be transfered to an institution for disabled adults. The adoptive mother of S.'s sister is concerned about how this move could be suited to S.'s best interest. She wrote, "We are committed to helping this girl and we are now exploring what our alternatives are. Since S. will be 18 in July we need to act fast to make sure that she is moved to an institution that will afford her better care. I welcome any suggestions any of you may have. Many thanks!"
After the BBC exposed the shocking conditions in Bulgarian institutions for abandoned disabled children and our European partners began to exercise much needed pressure, options for the disabled Bulgarians seem to be slowly improving. But does anybody know how to find the best option for S.? She is not a mildly disabled person who needs only material support and accommodations. S. has severe mental retardation and motor impairments. She is non-verbal and has no self-care skills. She has some ability to move by a wheelchair, but spends most of her time in bed.
If you have in mind something that may be useful, please don't hesitate to share it.

I am skeptical about food additives - hyperactivity link

I've just read in Yahoo News that EU is urged to ban food additives over child hyperactivity fears. Quoting: "main consumer watchdog called Thursday for an EU-wide ban on six food colourings which a scientific study has linked to hyperactivity in children... A study published in September in the British science review, The Lancet, found that a cocktail of artificial colours and the commonly-used preservative sodium benzoate are linked to hyperactivity in children." The study mentioned is apparently the one by McCann et al., 2007, though the publication date given in PubMed is November, not September.


I am nobody to judge the study, but still I would like to recomment utmost caution about its results and any actions based on them. (And if you are not happy about what I am writing here, please keep in mind that this is my blog and I can write whatever I want.)


It is so tempting to pick an ubiquitous environmental factor that can be avoided only at an incredibly high cost (if at all) and blame on it some public health problem. Or a presumed problem - because I suspect that with today's unnatural child raising methods and paradigms, much of what is inside the normal range of childhood behaviour is stigmatized as hyperactivity.


Children's hyperactivity is sometimes blamed on another ubiquitous environmental factor - television. Not so far ago, a team led by an anti-television crusader published a study showing that television viewing in toddlers was associated with attention deficit at age 7. A skeptic immediately commented that "the message resonates in a society seemingly obsessed with public health villains", critisized the authors' methods and, with a language unusually sharp for a scientific journal, concluded that "the statistics are being used, in the words of Andrew Lang, "... as a drunken man uses lampposts—for support rather than illumination." " Later studies, e.g. this one, did not confirm the TV - attention deficit correlation. However, the jin had been let out of the bottle. The initial message reached the public while its disprovals, as usual, didn't. Just search the Google University and you'll find numerous pages warning you that you'll make your toddler ADHD if you let him in the same room with a TV. (Disclaimer: I am not saying that the best for a toddler is to let the TV babysit him.)


Returning to the main subject of this post, I ask myself - isn't it a bit suspicious that so many unrelated chemical substances in small doses are reported to have the same effect on behaviour?


Why didn't anybody try to conduct a study on animal models? At least, I cannot find such an article in PubMed. Animal studies are generally more standardized and hence more reliable than human ones. I know that in many countries it is easier to obtain a permit to experiment on humans than on animals, but still, why not get to the work seriously and do first the paperwork required and then the animal study itself?


Why was the study done only on children, after hyperactivity problems, when present, are thought to persist for life? Is it because adults are generally happy with their own flawed selves but demand perfection from their children, relentlessly drawing the little ones to some superhuman standards of intelligence and behaviour?


What are we going to do now? Consumers demand the culprit substances to be removed from food. While I don't like the presence in our food of so many chemical substances, often with unknown effects on human health, shall we now have to pay more for food protected from deterioration by methods more expensive than a preservative? Or we'll accept greenish food products and bacteria-caused food poisoning as a part of our lives?


Is it a minor issue to deprive kids of junk food? A person on the receiving end of this treatment testifies that it isn't. In conclusion: The sky won't fall on us if we postpone any action for several more years, so let's wait until independent research teams in other facilities confirm the study's findings, as the scientific method requires.


10 years ago, the same Lancet journal published an article (subsequently retracted by almost all of its authors) claiming that MMR vaccine caused regressive autism in children. Although subsequent studies disproved this work in entirety, the world still cannot recover from the enormous damage done by it. Why not learn from our past mistakes?


Update: At Quackwatch, there is a page titled Twenty-Five Ways to Spot Quacks and Vitamin Pushers, by S. Barrett and V. Herbert. Item No. 6 is: "They Claim That Diet Is a Major Factor in Behavior. Food quacks relate diet not only to disease but to behavior. Some claim that adverse reactions to additives and/or common foods cause hyperactivity in children and even criminal behavior in adolescents and adults. These claims are based on a combination of delusions, anecdotal evidence, and poorly designed research."


Update 2: Interverbal blogged about Feingold diet in 2007.

US blogger subpoenated for writing against quackery

On Feb. 1, I wrote that quacks want freedom of speech for themselves but deny it to opponents. Now, we have a fresh example of this phenomenon. Kathleen Seidel who blogs against the vaccines-cause-autism quackery reported on Apr. 3 that she was subpoenated by Clifford Shoemaker, a lawyer representing Rev. Lisa Sykes and Seth Sykes in their $20,000,000 personal injury lawsuit against Bayer company. The Sykes think that vaccines have caused their son's autism and want big money from vaccine manufacturer Bayer as compensation. (The vaccines-cause-autism urban legend is discussed in my Jan. 14 post.)
I am surprised that the event described above happened in the USA. You expect such things in places described by the broad term "east of Belgrade", e.g. here in Bulgaria. In fact, the story reminded me of Bulgarian blogger Michel who was subpoenated and warned by police last summer because of his writings about the Strandja protests (see my July 19, 2007 post).
I guess, US legislature allows laywers to directly subpoenate people thought to have information useful for their clients' cases. However, Kathleen Seidel had no such information; in fact, she had more than once written against the Sykes' claims. So the only explanation is that Mr. Shoemaker abused his right to subpoenate in order to harass and intimidate Kathleen. In fact, the subpoena came shortly after Kathleen's post The Commerce in Causation, describing how Mr. Shoemaker uses the disproved vaccines-cause-autism theory to nicely fill his pockets via never-ending litigations. So it clearly looks like a revenge: you blog against me - I intrude into your life by a subpoena. Although not compatible to a lawsuit, a subpoena such as this one is, to say the least, unpleasant for those on the receiving end. Bulgarian blogger Michel reported the experience to be traumatizing.
One of the absurd aspects of the overall absurd subpoena is the demand that Kathleen should provide copies of "all her communications with... religious groups (Muslim or otherwise), or individuals with religious affiliations". Kathleen has written Serving the Guest, a cookbook with essays and anecdotes about the role of food in Sufism. I do not know whether she has actually converted to Islam, but even if she has, whose damn business is this? Has Mr. Shoemaker ever heard about freedom of religion?
It is important to defend rights and freedoms of everybody, including our opponents and even enemies. A Russian writer once said that freedom isn't like a blanket - take it from your neighbour and you'll have more of it. It is rather like air - take it from anybody and there will be less of it for everyone, including you. In this respect, I (like many others) was delighted and surprised to see that two distinguished quackery-promoting journalists have expressed their support for Kathleen Seidel.
Let me now say a few words about Mr. Shoemaker's clients (who are unlikely to be unaware about their lawyer's methods) and particularly about Rev. Lisa Sykes. For those who don't know what "Rev." (abbr. from reverend) means, it is a title of a clergy member (Bulg. prepodoben). Generally, religious people earn my respect by their attitude to disabled children. They think that there must be a reason for God to send children with disabilities to this world, so their parents must feel honoured and meet their extra responsibilities with dignity and compassion. This is e.g. the view of Jenny, mother of 3 children (2 with special needs) and, let me remind, seller of a wonderful home in the city of Anniston. However, Rev. Sykes (shown here with her son) has a different attitude. She apparently thinks than nothing can be "wrong" with her or her husband's genes, and that God couldn't be so cruel or stupid to dump a non-perfect child on such a wonderful person as her. So she blames vaccines for her son's autism, sues a pharma company to rob it of its honestly earned money and, by her own admission, does on her son a quack "treatment" which castrates him chemically. I ask, why is this pompous person, greedy gold digger and abusive mother still a pastor? What is the human resources policy (if any) of today's churches and what do they think they are doing by employing people such as Lisa Sykes, Jeremiah Wright and Rowan Williams, to name just a few? Thank God I am an atheist :-). Read also the excellent Janna's post on this subject.

Our genetic hardware

More than a century after Mendel's laws of inheritance were rediscovered, it is ridiculous to remind educated people that our traits are determined by - surprise, surprise - our genes.
However, it seems necessary because some folks just refuse to ackkowledge the limitations of our genetic hardware. So they overestimate the environmental factors or, to put it more bluntly, seek whom to blame when children don't turn out to be exactly what society and their loving parents want.
Yesterday, April 2, was World Autism Awareness day and CNN viewers received a median lethal dose of Jenny McCarthy (if you don't know who she is, then (1) you are lucky and (2) see my Jan. 14 post). However, CNN managed to present some good stuff as well. The quote below is from their story Autistic children linked to same sperm donor, by Randi Kaye. It is a must-read for the above mentioned Ms. McCarthy, for Sen. John McCain and all others who blame autism on vaccines, TV, the hole in the ozone layer or alien abductions. I learned about the story from Aspergian, who feels (to say the least) offended because children with his phenotype are not wanted.

"Dylan loves Italian music and draws pictures... He also happens to be autistic.
Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted California Cryobank, one of the largest sperm donor banks in the country.
Cryobank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper...
What she couldn't know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed.
The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component...
Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.
Until then... there's no way to screen for those genes and prevent them from being passed to a child...
Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.
"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."
Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."
Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.
Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son...
"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said... She was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."
She says Jackaway reassured her that wouldn't be the case.
One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism...
In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.
But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?
"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."...
Since the discovery of autism in some of the families that used Donor X, Cryobank had this to say about his samples:
"... per CCB policy, the donor's samples were removed from the general catalog. These vials may only be sold to a client who has previously used specimens of this donor and is interested in ordering additional specimens. In this case the client is made aware of the new medical information and potential issues ..."
The families don't blame the sperm bank. In fact, Theresa Pergola says she's still uncertain about an autism screening process, if and when it ever becomes available..."

Shame on you, President Parvanov and Premier Stanishev!

This post belongs to my "Shame on you" rubric explained in my previous post Shame on you, Minister Gaydarski!.
I am not a supporter of current Bulgarian President Georgi Parvanov, as shown by two earlier my posts - Don't vote for Georgi Parvanov and Never elect hunter President - bad for wildlife.
Of course the fact that I dislike the President may reflect just my political views and personal preferences. But please read below what he said on March 8 in the city of Ruse while opening a discussion on the subject For the children of Bulgaria in an open and committed way (source: Netinfo):

"I was deeply disturbed by that documentary (BBC's Bulgaria's Abandoned Children - M.M.) which wasn't made with love to Bulgaria, which is a part, a detail of an anti-Bulgarian campaign provoked by people unknown to me and with purposes unknown to me."

I'd wish to ask the President two simple questions:
1) After you cannot figure out what interest could anybody have in discrediting Bulgaria by a documentary about care homes, doesn't it come to your head that the presumed anti-Bulgarian campaign may simply not exist?
2) Following your logic, Germans in 1946 could, instead of focusing on de-Nazification, say that documentaries about Auschwitz hadn't been made with love to Germany. Can this comparison show you how irrelevant and monstrous your comment was? Need we Bulgarians be taught humaneness the way Germans were?

The next day (March 9) journalists asked the Premier Sergey Stanishev whether he shared the President's opinion. Stanishev replied, "The BBC documentary about the orphanage in Mogilino is extremely biased and distorts the reality about the care that is done. From each reality, fragments can be taken in isolation and deeply moving scenes can be obtained this way" (source: Mediapool).

Shame on you, Minister Gaydarski!

Regular readers of my blog know that I have a "column" of posts titled "Shame on you, Minister ..." and containing outrageous statements of our ministers about Bulgarian institutions for disabled children such as Mogilino. Because these statements are meant to circulate only in the Bulgarian public space, I think it is good to translate and post them in English, so that everybody could see what sort of people rule Bulgaria and what attitudes they have towards abandoned children and disability. So far, I've had such posts about Ministers Grancharova and Maslarova. This post is devoted to the health minister Radoslav Gaydarski. On Feb. 29, he was presented at the opening of a day care center for disabled children in the town of Vidin and made a statement. I cannot find in the Web the entire statement, so I am translating below excerpts published by Dnevnik and Mediapool.

"A premeditated campaign is being carried out against the Bulgarian people for allegedly having a callous attitude towards disabled children, the poor and the elderly. This doesn't correspond to the truth and aims to discredit our country.
Throughout Bulgaria, there is hardly a city or a region without care homes for the elderly, the disabled and the abandoned children. Of course some care homes are in a better condition and some are in a worse condition, but it is clear for everybody that the current government and its predecessors have done their job as allowed by the funds available in our state.
Nobody can deny that extraordinary efforts are being made to improve the lives of these people, especially the children. All this cannot happen in several years, because a country in transition and with insufficient funds cannot manage for all who need special care to live in wonderful conditions.
It is not the fault of the Bulgarian people that we have so many children in care homes. It is not the fault of our people that we lack the financial capacity to build health facilities like the one we are opening now. It is the fault of those who unintentionally create these difficult conditions in the country.
I am disgusted by the libel against the Bulgarian people. In two days, there will be a discussion on "the children of Bulgaria" in Brussels. The large part of these children, I am talking about Mogilino, have been born by very young mothers aged 12-14. They have been abandoned by their families. To accuse the Bulgarian people for not caring for these children is, to say the least, unpleasant and dishonest, because the children in these institutions are cared for using funds given by all of us.
The day care center we are opening now is a wonderful facility. It is much superior to a number of similar European facilities."

See how Gaydarski's statement was commented on the Mogilino blog:
"Of course the minister quite conveniently omitted saying that exactly his subordinates - doctors, midwives, nurses, - convince mothers of disabled newborns to place them in an institution. Visit the page Is is easy to raise a disabled child in Bulgaria to read exactly how doctors react when a child with a problem is born. In short, they say, "Leave him in an institution, he will never become a person, you will have another child, the brain of this one is boiled." I can understand why some families abandon their children. It is exactly because Gaydarski's Ministry doesn't offer much of an alternative. Is there quality health care for these children? No. Does the health fund pay for each necessary drug? No. Are there enough rehabilitation facilities in Bulgaria? No. Are there modern prostheses and other accommodation devices? No. Are there kindergartens willing to integrate disabled children? No. Is there psychological counselling for parents of disabled children? No. Besides, the Minister apparently doesn't realize that if in our country 14-year-olds are giving birth, then his ministry isn't doing his job properly."
I agree with this comment and I want to add several words of my own.
First, Dr. Gaydarski is clearly bragging that there are so many institutions in Bulgaria. He thinks that this proves the caring attitude of Bulgarian people towards abandoned children, the disabled and the elderly, because institutions are supported by taxpayers. It seems that, at the back of the Minister's mind, some alternative method of dealing with disabled people is lingering that doesn't require money, and he is giving us and himself credit for not opting for this method. I wonder, what could it be? Throwing the disabled into the nearest river, possibly? Let's not forget that this has been done before, in Europe, less than a century ago.
Second, you can see that the Minister tries his best to perpetuate the myth that the plight of abandoned disabled children is poor because of the insufficient funds available, while in fact it is humaneness that is in short supply.
Third, the remark about the 12-14-year-old mothers is a shot in the direction of Gypsies. It is their girls who sometimes have babies in their early teens. Among the Bulgarian majority, teen pregnancies are much rarer and are almost invariably terminated. I don't think Dr. Gaydarski knows for sure that exactly the children at the Mogilino care home are born by very young mothers. At least, he shouldn't be allowed to review their cases in such detail without a proper reason. So I think he is just guessing that "young girls produce disabled babies and then abandon them". As far as I know, very young mothers have a higher risk for premature delivery, which in turn increases the risk for some disabilities. However, older parents are at a higher risk to have children with other disabilities, such as Down syndrome and autism. The Minister didn't address this issue. This proves that his attitude was racist, a detail that would escape the attention of a non-Bulgarian reader. We who live in Bulgaria and know the context of the situation can see that he made a miserable attempt to exonerate the Bulgarian majority by laying the blame for abandoned disabled children on the Gypsies.
At the end, I want to say that I am sad when I think that Gaydarski is a doctor.

UPDATE: On March 9, Netinfo quoted Gaydarski saying that "it makes sense only for well-prospecting children to be taken out of care homes and integrated in the community" (Bulg. има смисъл само перспективните деца да бъдат изведени от домовете и да се интегрират в обществото).
I would say that if somebody had seen Gaydarski as a child and had labeled him ill-prospecting, perhaps some things would have been spared to us all...

Disabled Bulgarian woman sterilized against her will

Source of the information below is the Feb. 3 post of the Mogilino blog, Bulgarian readers can go directly there.
After BBC broadcasted Kate Blewett's shocking documentary Bulgaria's Abandoned Children, Bulgarian authorities and "patriots" have been busy with PR disaster management. A documentary titled Home was produced and aired on the Bulgarian National TV Channel on Feb. 3. I haven't seen it, so I am relying on Yana Domuschieva's description in the above linked Mogilino post .
The documentary showed a family caring for their own disabled child, a foster family with a disabled foster child (the only disabled Bulgarian child currently enjoying foster care), a rehabilitation center for disabled children and a protected home for young disabled people. The picture portrayed was very rosy. Indeed, only the personnel of the rehabilitation center and the protected home was interviewed, not any of the inmates.
However, human rights activist Slavka Kukova reported that last winter a not so rosy event happened in the same protected home that was praised in the documentary. One of the young disabled women had vaginal bleeding (for unclear reasons). Her problem was dealt with by removing her uterus and ovaries. She was told that she didn't need these organs anyway. After being sterilized, the woman fled the protected home and was raped in the street.

Bulgarian members of European Parliament: Europe, don't talk about our starving children!

Let me first translate a little from Europe.bg:
"Jan. 31 - Bulgarian members of European Parliament Filiz Hyusmenova (DPS party), Metin Kazak (DPS party), Prof. Vladko Panayotov (DPS party), Bilyana Raeva (NDSV party) and Iliana Yotova (BSP party) submitted on Wednesday in the European Parliament a draft statement. It calls for unified European policy concerning the care for disadvantaged children... The main point of the document is the appeal not to exploit politically this grave social problem, as happened in Bulgaria..."
The Trud site summarizes the draft statement more clearly: "It appeals to EU member states not to take advantage of the media disclosures about the care home in Mogilino." The media in question is the BBC which recently produced a shocking documentary about an institution for abandoned disabled children in the Bulgarian village of Mogilino.
When foreign media bring to light outrageous facts about Bulgarian reality, the reaction of our authorities is not to address the problems but to attack the reporters as having an agenda to denigrate Bulgaria. E.g. see my Nov. 12, 2007 post about the response of Bulgarian police to a BBC report of child trafficking ring. Specifically about Mogilino, at least two ministers have made public statements that the BBC documentary is all anti-Bulgarian propaganda. See my Nov. 26, 2007 and Jan. 7 posts. However, the ministers at least talked and wrote their shameful nonsense in Bulgarian, it was me who decided to translate it and re-post it in English. Now, the five European Parliament members give their masterpiece directly to the translators in Brussels, to guarantee that nobody will remain unaware of the Bulgarian idiocy.
Dear fellow Bulgarians, please be careful next time when the above listed people and parties want your votes again!

"Don't judge harshly because you/your people can one day be in the same shoes"

Left: Katherine "Katie" McCarron, copied from Not Dead Yet, originally supplied by her family. Right: her mother and murderer Karen McCarron, copied from HoiNews, original source unknown.

About a week ago, I had an argument with a relative about the Mideast conflict. It naturally brought me to saying that Palestinians were such and such (let's not repeat adjectives unnecessarily, I have explained my opinion in detail in the post Mideast Conflict: The Dire Consequences of a "Deadly and Disgusting Bias").

Then, my relative replied, "The same things you are saying about the Palestinians have been said by (West-) Europeans about our Bulgarian revolutionaries in Macedonia."

Well, I know that some of these revolutionaries, while not doing quite the same things as today's Palestinians, weren't the sort of person you want for your son in-law, either. The best example perhaps is Yane (Jane) Sandanski (1872 - 1915). He has been unduly euphemized by historians (see e.g. his Wikipedia page) and today has a resort town named after him. Consider, however, how he raised funds for his cause: "In 1902 Yane Sandanski, together with some of his companions, kidnapped the Protestant missionary Ellen Stone and exacted ransom of 14 500 TRL for her, which initiated the so-called Miss Stone Affair. Despite the persecutions, they managed to take the ransom and use it for weapons, which were needed for the revolutionary struggle. Miss Stone was released and later she read lectures for the Macedonian cause in America" (source: BGglobe).

I have read details about this kidnapping in For Freedom and Perfection, a sympathetic biography of Yane Sandanski by Mercia MacDermott. Miss Stone had a pregnant companion (her name was Tsilka, if I remember correctly). The kidnappers seized her together with her mistress and didn't release her despite her pregnancy advancing to term. She gave birth literally in Stone Age conditions, in a cave, with only Miss Stone to help. It was sheer luck that she and the baby survived and did well. So I have no kind thoughts and words for Sandanski and his gang of terrorists, no matter how Bulgarian they were and what noble causes they claimed.

The Scripture says, "Judge Not Lest You Be Judged". We have a proverb with a similar meaning, "Laugh only at a priest, because you will never become one." It is true that we shouldn't indulge in excessive and hypocritical judgement of others. But this doesn't mean that we must never judge anybody in order to avoid being judged ourselves. Would you like a society where everybody would let others do as they please in order to enjoy the same "freedom"? I think that we not only can but should demand others to keep some norms - and of course apply the same norms to ourselves, our families and our community.

This reminds me of an event that was the central subject at Autism Hub ten days ago. On Jan. 17, Illinois physician Karen McCarron was convicted of first-degree murder of her 3-year-old daughter Katherine "Katie" McCarron (see above photos). Karen had smothered the little girl to death with a plastic bag. The motive: Katie was autistic.

Society showed mixed reaction to the murder and the verdict. Some people, notably disability advocates and parents, strongly condemned Karen McCarron. However, as Wikipedia puts it, "news articles and weblogs have emphasized the difficulties in raising a child with autism, and some suggested that McCarron may have been stressed by lack of support and dealing with Katie's autism." In fact, Karen had no reason to be stressed so much, because she hadn't even cared for her daughter after the diagnosis. As you can read in the same article, Katie had been taken by her father Paul to North Carolina, where the educational opportunities for autistic children were better, and was reunited with her mother only ten days prior to the murder. Paradoxically, the fact that Karen had been free from care was also used by some to exonerate her. Quoting the HoiNews article from where I copied the photo: "Authorities are not commenting as to her motive, but people who know Karen McCarron said the challenges with autism can be too much to handle... Her husband took Katherine to North Carolina, Karen stayed with their other child at their home in Morton. “And that had to be overwhelming in itself, because now your support's not there, you're both separated, you know... she was an excellent mother and she was out there to help her daughter the best that she could,” (therapist and autism mother) Floyd said." (However, see also the outraged comments to this article by parents of both special-needs and typical children.)

Blogger "Doubting Thomas" touches another aspect and so brings McCarron's case to the subject of this post. He writes, "Prosecution attorneys say she was mentally stable. However, they are attorneys, and not doctors, and should not diagnose on the fly. She also just killed her daughter. How stable is that?... But here is the big money question, and ultimately, my point: Do any of you realize that **your autistic child** could be in the same position as Karen McCarron someday?"

Eh well, every murderer, with or without a disability, has parents. And I am sure that in quite many cases they have been good parents. We know well "where children come from", but we do not know, and never will, where their souls come from. I pity Karen McCarron's parents. However, we cannot keep our pockets filled with excuses for all sort of criminals, just in case some of our children happen to become criminals when they grow up.

In a sense, every murderer is "not normal". I always wonder when I watch on Discovery channel programs about how murderers' brains have different wave patterns and their attorneys use this to demand a lighter sentence. I mean, why is a murderer's brain expected to be exactly like a non-murderer's brain? However, from this "difference" there is a long way to "mental illness" pronounced enough to account for a lighter sentence. And unlike Thomas, I don't think McCarron (who had no previous diagnosis) qualified for "guilty but mentally ill" verdict. People like her are so dangerously close to us, to "good normal" people. Had Katie happened to be a typical child, nobody would ever know about the monster hidden inside her mom.

Our civilization has reached a stage when diseases, disabilities, accidents and wars are a rare exception, rather than rule of life, as they have been in previous centuries. However, this has had the unpleasant effect of making us intolerant to everything depriving our lives of the comfort we feel entitled to. Have a non-perfect child? - Get rid of him. We want perfect children only. As autistic blogger Joel Smith put it, "Being a parent of an autistic child gives you a special right: a “Get Out of Love Free” card."

In a society where so many people can blame a disabled child for her own murder (just read some of the above quotes), too many parents may be tempted to follow Karen McCarron's footsteps. This, to my opinion, gives "high degree of public danger" to her crime. The concern that we, or somebody of our circle, may some day be in a criminal's shoes should not be a reason for lenience. On the contrary, in such cases the sentence must serve to ward off future similar crimes by scaring potential criminals. I think the jurors have done their job well and while nothing can bring Katie back to life, their verdict has likely saved the lives of some other children.