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..."

In defence of Bulgarian language

This is for Bulgarian readers only. Because I have already written about it in my Bulgarian blog, and I am feeling really awkward to explain in English the need to learn Bulgarian in Bulgaria, just go to the Bulgarian post and sign the petition.

Germanea

My husband and children in front of St. Nikola church in Sapareva Banya.

A month ago, our family spent two days at Sapareva Banya, a town at the foot of the Rila mountain. This is a pleasant town I would recommend as a family resort. There is just a small detail - bring your own slippers. The owners of the small hotel where we resided required guests to leave their shoes and use slippers, as is traditionally done in villages and small towns. We obeyed because we had no slippers of our own and didn't want to buy, but the practice is bad. This is the way fungal infections are transmitted.

I had been in the town before in 1995, to express my support for the locals. They protested against the Skakavitsa project that would take the water supply of Sapareva Banya and divert it to the city of Sofia. The protests were eventually crushed by anti-terrorist police and the project was implemented. (These events are partly covered in my 2006 post Water regime, or how to create and perpetuate misery).

I wasn't presented at the actual clash - it happened in a week-day when I was at work. After it, at Saturday I bought some banitsa (Bulgarian cheese pasty) and took a bus. If you wonder how one could just go to a town and express support to strangers by offering them cheese pasty - I also wouldn't and couldn't do it now, people lose some inspiration and skills as they age.

Arriving at Sapareva Banya, I saw a barrier marking the site of the protests and several policemen guarding it. It was enough to look into their eyes to know that they had recently abused people with impunity, had liked it, were bored now and were looking for new targets. With a slight change in the uniform, they could excellently play the parts of Nazi concentration camp guards in Schindler's list. So I was careful not to trigger an attack. The previous day, these policemen or their colleagues had beaten a 60-year-old local woman in her own yard without any apparent reason.

They asked me where I was from and how I had arrived to the town - with public transportation or with my own car. I guess that, had I replied the latter, they would fine me for some made-up traffic violation. Then they defended the use of force against local residents, saying, "Laws are to be kept, aren't they?". I answered nothing; the statements was correct in itself, but used in a bad context (I used it more appropriately as a title of my Feb. 27 post).

After that, I left the barrier and talked with several local people I met in the street. One of them even invited me to her house. Naturally, they were sad and desperate after the defeat. Their houses were remarkably clean and well kept, but the people were so poorly dressed that my heart ached.

During our present visit (I am already talking about last month), the town looked so renovated that I couldn't recognize it. More importantly, the people seemed more cheerful and not so poor. I mentioned the 1995 events to the hotel owners and asked whether the Skakavitsa project was still working. They said that it was but part of the water was reserved for the town and it was enough to satisfy its needs.

When I visited the town in 1995, I naturally didn't behave like a tourist and had no interest in the local landmarks. Now, as we went sight-seeing, I was surprised to learn how many of them were there. During the Roman rule, the town was called Germanea and was quite important. There was born Belisarius, a 6th century "defence minister" of the Byzantine Empire. The beautiful little St. Nikola church (see image) in the center of the town is dated to the 12th or 13th century. We also made a ride to the Panichishte region of the Rila mountain, where crocuses were already sprouting between the pine trees.

Our second day in Sapareva Banya was March 3, the Bulgarian national holiday. It marks the date when a peace treaty mentioning the creation of a Bulgarian state was signed between Russia and the Ottoman Empire in 1878. I am not nationalistic enough to be driven to ecstasy on such occasions, and that particular March 3 wasn't very cheerful due to the death of 9 people in a burning train only days ago (briefly mentioned in my March 6 post). So the celebration was modest. On the central square, Bulgarian national revival songs were broadcasted and bypassers were stopping to listen to them, some were leaving flowers at a small memorial. For the first time, I heard Stambolov's song We want no wealth/ We want no money/ We want freedom/ And humane justice. I liked the celebration. It couldn't take place in Sofia; to begin with, there is nowhere to make it because Sofia, among many other attributes of a normal city, lacks a central pedestrian zone. In fact, it doesn't look like a city at all. It is rather some hybrid between stock market, industrial site, college campus and refugee camp.

Another, not so pleasant aspect of the Sapareva Banya reality were the trucks and other vehicles participating in the illegal construction of a ski lift in the Rila National Park. We saw them first-hand during our ride to Panichishte. Unfortunately, the Municipality of Sapareva Banya is an accomplice in this destruction of the mountain; Bulgarian readers can read the details in this open letter by conservationists to local residents. However, I wouldn't blame too much the local authorities and residents. In 1995, they were opposed against another nature-damaging project and what was the result? Riot police beating them, water taken away from them as a punitive measure and the project still implemented. Now, I don't believe their opposition would halt the unscrupulous greedy investors, so why waste energy and possibly put themselves in harm's way. If Rila can still be saved, it is not by the residents of Sapareva Banya and not even by those of Sofia, but by European opinion-makers and institutions (see my previous today's post).

Foreign intervention needed to protect Bulgarian nature

If you are environmental activist, journalist or policy-making official in EU, please read this post - it's for you. I'll try to make it concise.
Greedy resort investors in alliance with corrupt Bulgarian authorities are quickly destroying the protected areas in our country. Illegal construction is underway in Rila National Park and likely to destroy it despite the fact that 140,000 people have signed a petition to protect the mountain. Another protected area, Strandja Nature Park which was about to be destroyed last year and was saved at the last moment after massive protests by citizens, is in danger again. The Municipality of the town of Tsarevo has presented a development plan that includes building over almost 100% of the coastal territory of Strandja Nature Park and legalization of the illegally constructed Golden Pearl resort complex. The Ministry of Environment and Water has, for now, rejected the proposed development plan and required the Municipality of Tsarevo to change it (source, in Bulgarian).
More details about the ongoing destruction of Bulgarian nature are given in this document.
Bulgarian civil society is too weak to mobilize itself to save the country's natural heritage. The widespread appalling and ever-increasing poverty forces most ordinary Bulgarians to devote all of their energy to physical survival. And even when citizens protest and demand the law to be applied, as in the above cases, their will is disregarded by arrogant Bulgarian authorities. Only pressure from outside, particularly the EU, is likely to have effect.
So if you can help in any way, please do it now, before it is too late.

Only clean obedient children qualify for love

At the local playground, I have recently heard a mom talking to her 2-year-old son after he came out of the sandbox:
"Come here and let me beat the sand out of your clothes. See how dirty you have made yourself. Come here quickly, or I won't love you anymore!"