Disability and invisibility in India

Long time back, I edited a book for Ali Baquer who was the President of Concerned Action Now (CAN), an advocacy group for the disabled.  At that time Delhi was getting new bus stops and it was publicly touted to be disabled friendly.  Prof. Baquer and I discussed how misleading the publicity was because none of the bus stops really are wheelchair accessible.
In India the disabled are invisible in many senses.  Accessibility, support groups, diagnosis, medical help...the list is endless.  I am not going to say much but am going to provide a link to a write-up that explains it all.

The Philadelphia Chromosome by Jessica Wapner

The Philadelphia Chromosome is a poster-child for chromosome translocation.  This is the example most students will give when asked about chromosomal translocation. I was taught this in my M.Sc. and I teach it to my students in Human Genetics when I talk about diseases caused by chromosome translocation.  The importance of this translocation is underscored by the type of cancer it causes- Chronic Myeloid Leukemia (CML).
The DNA in our cells are present in the form of 24 chromosomes. Each chromosome has a specific set of DNA sequence. It is same in every individual.  Occasionally, two chromosomes can exchanges pieces in a process known as Chromosomal Translocation. This is bad because it can result in loss of information.  In case of Philadelphia Chromosome, it results in the formation of a rogue gene that results in cancer.
Jessica Wapner has traced the discovery of this chromosome and the cure for the cancer it causes- Gleevec.  The story begins in 1959 when David Hungerford discovered that one of the chromosomes was too short in the blood samples of patients suffering from CML.   At that time the concept of chromosome translocation was unknown.  The minute chromosome was named Philadelphia Chromosome in honor of the city of its discovery.
From there, the story traverses across continents and laboratories wherein it was firmly established that the Philadelphia chromosome is due to exchange of DNA between chromosome 9 and 14  and this exchange results in the synthesis of an abnormal protein known as Bcr-abl that causes cells to divide indefinitely.  This abnormal protein is a kinase- it transfers a phosphate group from ATP to proteins causing them to become active.
The discovery that an abnormal protein kinase causes cancer spurred researchers and doctors- in particular Brian Druker- to push for an inhibitor that would specially block the function of this abnormal kinase. Today we call this strategy Rational Drug Design and it really begins with knowing the structure of the protein. However, for Bcr-abl, the structure was unknown and the scientists working in Ciba-Geigy synthesized chemicals and screened them for inhibition activity. Gleevec was discovered in this screen.
Ciba-Geigy was purchased by Novartis.  Not many people were convinced that the inhibitor would be a good drug. Further, there was the cost factor- CML affected too few people to make it an attractive market.  However, Druker persists and finally, Gleevec was approved for drug trials.  And of course finally for medical use.
Gleevec is that rare chemotherapeutic medicine that a patient can take at home with very few side effects.  It is effect also against c-kit, which causes GIST cancer.  The only caveat is that Gleevec has to be taken for life- at least till now that is the story.
Jessica Wapner traces this 40 year old story and I enjoyed it tremendously. 
As an aside: There was a dispute over the drug in India which Novartis lost.  Jessica barely mentions it though it was landmark decision where the Supreme Court of India ruled that Novartis cannot patent Gleevec in India allowing for the generic drug to be manufactured.

Finally: Nothing to do with Gleevec. Winter did arrive in Delhi albeit late. 

Sweet Potato soup and winter of discontent

This time too the winter has played hooky.  It has been unseasonally warm.  Usually, we get a week of really cold spell with the day temperature going down to 12-14oC and the night temperature plunging to 3-4oC.  There would be a watery sun that would perhaps bravely appear around noon to promptly disappear by 2 pm in the afternoon.  But this year, just like last year, it has been sunny throughout the day much to our disappointment as it just means that the summer will arrive early with its unbearable heat.

The garden has done okayish in spells. We had trouble with the usual suspects - peacocks and nilgai.  Then this year the fox and the hedgehog decided to put in an appearance.  The methi, spinach, cauliflower, and lettuce were much appreciated by these two animals. We have now fenced the entire area but I am quite sure that the animals will figure a way out.

I went to Chennai as usual for the winter (or whatever weather was prevailing in Delhi).  When I came back, the crysanthemums had flowered, bringing much needed colour to the garden.  This week I cut some and put it in flower vases. 

Their season is almost over. Next week, we will remove them.  Hopefully, the dahlias will flower soon.

In this mild winter one does not even feel like making soups. However, I did have one opportunity to make it. My mother invited her brother's family over for dinner before they went back to Canada.  As we had some sweet potatoes, I decided to make a soup, which was much appreciated. My aunt asked for the recipe and I gaped at her. That day I had been distracted as I was writing a rebuttal to an editor who had rejected our paper (the rebuttal was rejected as expected).  So, I had just grabbed whatever was in the fridge and put it into the soup. The recipe always varies depending on my mood. That day, I gave a tadka of jeera,and fried some onions, added chopped carrots, sweet potato, and peas.  As an afterthought, I added a piece of red chilli. All this was boiled with plenty of water in a kadhai (I do not like to use pressure cooker for soups).  After the vegetables had cooked well, I cooled it down and then pureed it in a mixer.  Just before serving, it was heated with salt and pepper.

Sometimes, I added a piece of garlic. Sometimes milk. Sometimes curd. The interesting thing about soups is that the variations are endless. It just depends on the cook.

Happy New Year!

A More Perfect Heaven- by Dava Sobel

When my brother asked whether I wanted any books (such a silly question! I always want books), I put in this book by Dava Sobel on the list.  I loved her book Galileo's Daughter wherein she traces Galileo's life using the letters his daughter, a nun, wrote to him. It is a meticulously researched book. A beautiful book. Unfortunately, the letters are one-sided for though we hear his daughter's voice, we never hear his voice. His letters to his daughter were destroyed after her death by the Mother Superior in fear of the Church- by then he was suspected to be a heretic.
A More Perfect Heaven traces the life of Nicolaus Copernicus who first propounded that the Earth revolves around the Sun in stark contrast to Ptolemy's view and the Scriptures. Copernicus was a canon, but not ordained, attached to the Cathedral of Varmia. Scant information is available about him.  In fact, there is only one portrait of him. But Dava Sobel brings him alive using the limited information available about him.
The book can be roughly divided into three parts. The first part is where Copernicus conceives the idea of Earth revolving around the sun. In 1510 he proposes the theory in Brief Sketch, a small manuscript he publishes. He then spends years getting the necessary proof.  No telescopes were available but Copernicus builds a sundial and uses it to track the movement of the Sun. He also studies the lunar eclipse year after year, building up a data base, if you will. As he struggles to make sense of the data, he arrives at the conclusion that Ptolemy was wrong. It is the Earth that revolves around the Sun.  However, he does not publish it.
The third part talks about Rheticus, a young man from Wittenburg who arrives at Copernicus's doorstep.  He has read Brief Sketch. He wants to meet Copernicus because he wants to learn the theory from him so that he is able to cast better horoscopes.  What happened at the meeting we do not know because it is not recorded. What we know is that Rheticus convinced Copernicus to publish his work.  Copernicus is reluctant because he is sure that he will be laughed at and even worse people who do not understand the work will declare him a heretic.  But Rheticus convinces him, and the book is published.  Copernicus dies after the final proofs arrive- he does not live to see his book in the published form.
For some years the book is ignored by the Church. It is when Galileo openly espouses the Copernicus theory that the Catholic Church gets into the act. The book is put on the list of Index of Prohibited book. But they do not burn it (fate of many other books) because theory proves useful to them for reinventing the Calendar and moving from Julian era to the Gregorian Calendar.  However, despite being on the list of Prohibited books and decried by the Church (ironically Martin Luther, the reformer, too does not accept the concept because it is against  the Scriptures), everybody ends up reading the book. Kepler, Galileo, possibly Newton, the list is endless.
These two parts are based on the facts.
The second part is a play written by Sobel wherein she imagines the meeting of Rheticus and Copernicus leading to the publication of the manuscript. I was not too enamoured about the second part. It was okay- it did not detract anything from the book but it did not add anything either.
The evolution of the heliocentric model started from Copernicus propounding his theory. Then came Kepler who explained that the revolutions are not concentric but are elliptical. The third and final act was Galileo who using the telescopes he built concurred that the Earth did move. And for that he was severely reprimanded by the Church.
So having the read the first and the last act, the second act is left. The Astronomer and the Witch is the story about Kepler and his mother, who was accused of being a witch. It is on my reading list.

Demonetisation

I was in Kolkata attending a conference when the Prime Minister made the announcement. I did not pay much attention because I was more interested in knowing whether Hillary won or not.  And then it stuck me. Oh my God! How will I get home from the airport?  Scrambling around my bag I found Rs 400/- in hundred rupee notes but then if I spent it on the cab, what about the other things. Every one around me was making the same calculations. There was also glee. After all the black money hoarders had been caught pants down and what will they do? The overwhelming feeling was that it was a good decision.
I called up Rajinder, Sumitra's husband, and begged him to pick me up from the airport. Which he did.
The milk booth guy was accommodating. I could deposit Rs 500/- with him, he said, and buy milk and other products for that much worth as and when I needed.
Mr. Joshi, the man who delivers the newspaper, presented his bill and accepted Rs 500/- note on the condition that he will adjust it in the next month's bill.
The Eureka Forbes person came around for the 6-monthly service of my water purifier and figured out that I needed a new filter.
"They don't clean the water tank?"
I shrugged my shoulders.
"I cannot do anything. I have only Rs 500/- notes with me."
"Don't worry. I will accept it. Let us get the filter changed."
I was worried about Sumitra and Nanku Ram.  Nanku Ram told me that he had managed to get the money from the bank. 
"People are being stupid. You need lots of documents for exchanging money. But I filled two forms. Deposited my money and withdrew fresh. I got it done without any hassle."
It turned out Sumitra had stashed away Rs 100/- notes for emergency.
"I have money," she assured me. "I was only worried because I have to pay the tuition fees. The tuition person said that he will not accept the demonetised notes but that I can pay him by cheque. So I paid him by cheque."
So some one who normally would not accept cheques (after all most of the money earned from tuitions is unaccounted, never reported, no taxed paid) was willing to accept cheques.
I am not an economist and the economist in the family assures me that this will not curb black money. May be it will not. Assuredly it will not. But:
"Didi," Sumitra said giggling, her face wreathed in big smile," I will never forget Modiji.  For at least one day he made the rich and the poor equal. The rich who have hoarded money now will know what it feels to be poor and have no spending money."

Of gladoli and apple cakes

The weather has finally cooled down. It was a long summer made worse by the tepid winter that we suffered in the beginning of the year.  We still do not know how severe/mild the winter will be this year but for the time being we are enjoying the cooler days.
The garden has changed color.  The harsingar/parijatam tree is in full bloom.  The hibiscus that was in fine flowering form was eaten by the nilgai so we had to chop it down.  We also moved a rose bush from under the harsingar tree to a place of its own and it has adapted quite well.
This year I decided to plant gladoli bulbs:

 

On the vegetable front, the doctor had advised my mother to eat lots of greens. So I went slightly berserk and  planted all kinds of greens- Malabar spinach (also known as pui), spinach, Amaranth greens, Methi, Argula, and of course lettuce.  As an experiment we also planted radish and broccoli. The radish is ready for harvesting while the broccoli has just germinated.

As the weather turned milder I realized that I have not done any baking this year.  So last Sunday I started officially the baking season by making an apple cake.  It turned out quite okay-soft and crumbly. 

This week with Deepavali around the corner, my mother and I are focusing on traditional sweets.  But after that, hopefully, I will get around to baking cakes and cookies for my students.

The benevelonce of UGC

The UGC has introduced new guidelines for M.Phil/Ph.D. candidates. There are some nice things in the guidelines. For example, it is now mandatory to have doctoral committees for each student who will monitor his/her progress.  Then there are stuff that makes one wonder. 
The government/powers to be/bureaucrats want to show how sensitive they are to women and that they understand how the society tilts towards men.  So there are now three clauses added to the guideline.  One is that a woman is entitled to 240 days of maternity leave.  I have no problems with it.
Currently, everyone is supposed to do 1 year of course work and 4 years of research work. If they are unable to publish a paper and submit their thesis within this stipulated time, they are given one year (365 days exactly) extension to complete the work.  The revised guidelines now state that the women candidates may be allowed a relaxation of one year for M.Phil and two years for Ph.D. in the maximum duration.  In addition to it, they can avail 240 days of maternity leave.
The second clause states that if a woman shifts here place of residence due to marriage or otherwise than she is allowed to take the data generated with her to the new University and continue the work there.
I have serious problems with these two clauses.  The first clause regarding the relaxation is actually a very patriarchal attitude couched in benevolent terms. Oh, the poor women.  You know how difficult it is for her.  Let us be more lenient towards her. I do not want such a condescending attitude.  I want level playing field where I do not want authorities to put obstacles on my path. I am willing to do the hard work and manage everything as long as I am treated as an equal.  The moment this clause is introduced, you automatically state that you do not consider women to be equal to men.  Further, in science, if anybody takes a two year relaxation (which implies long leave), you not be able to compete with the world. No one is going to stop their work just because you have taken a leave. By the time the candidate comes back, the hypothesis would be obsolete and the research would have moved in some other direction.  Also in science, it is the PI who writes grants and gets money.  So if a candidate takes it slow because the law allows you, what is the PI supposed to do? What answer does the PI give to the funding agency? 

The second clause regarding the women be allowed to take the data generated in one lab with her to another is also problematic. Students in science do not generate their own funds or their own ideas. The problem is usually given to them by the PI who has conceived the project, written the grant, got the money, and in the initial days (and in some cases till the end) tells the student what to do. So the clause essentially says that the student can take the PI's idea and move?  Move where?  Which lab? Because the student will need a lab to complete her work. And unless the PI has a collaboration with a researcher in the new place, the whole clause is doomed to fail.

But who can tell all this to UGC. They have issued a gazette notification and we have to follow.