Monday, March 31, 2014

It's Not Only Justice Who's Blind

Okay, today I'm working off a riff, or I think that's what I'm doing - my ability to use cool slang is somewhat limited so I may just be planting my foot firmly in my mouth saying that. But I read a blog called Rolling Around In My Head and today's post included the following paragraph. It will probably make more sense if you read the entire post, so you can do that here.

"I know that I wish some people would allow people with disabilities the honour of having expertise in our own lives, having voices which need to have prominence in some areas and having vital information to add to any discussion about disability. Too often I see disability discussed as either a professional or parental concern. While those viewpoints are valuable, I don't disagree there, but they have to be tempered by and sometimes seen as secondary, and sometimes negated by the voices that speak from lived experience."
Cartoon by Kim

Reading this makes me think back to a conference for patients with a certain group of inherited neuromuscular diseases.  Experts in these diseases are booked as speakers. These are scientists who study the genetics in the lab, clinicians who see and treat patients, therapists, you get the drift.

A major complaint among patients is that the description of symptoms found in medical journals and textbooks is too limited. While descriptions used to be broader and more accurate, a few doctors with their own agendas have overwhelmed the field in the last 20 years. Their work has made it much more difficult to get a diagnosis, which is devastating to patients, because until you get a diagnosis you don't get treatment, and when you don't have treatment the disease slowly but progressively destroys your muscles.

At this particular conference an expert was standing before the audience expounding on his views. He is not a clinician, in other words he does not see patients or treat them. He studies muscle fibres removed from genetically engineered mice and draws his conclusions from what happens in a petri dish to a single muscle fibre.

He said, "Patients with (name of disease) have no problems with speech or swallowing."

The moderator stood up with her microphone and interrupted him. "Excuse me Dr. X. Did you say patients have no problems with speech and swallowing?"

He looked at her and said, "Yes, that's what I said."

She turned to the audience of perhaps 150 and asked, "Can I have a show of hands of patients with X who have problems with speech and swallowing?"

About 30 hands went up. She turned back to the speaker. "Dr. X," she said. "Are there any questions you'd like to ask these patients?"

He looked at her for a second before saying, "No," and continuing with his presentation.

Patients are not given the respect of having expertise in their own lives, of having vital information to add to the bank of knowledge about their own illness. We are too often told we cannot have this symptom or that one because the doctor says we don't. Progress is negated by "professionals" who not only have no physical experience with what they study, they refuse to listen to patients who do.

I think medicine has it wrong, at least in my field. It's justice which is supposed to be blind, not medicine.

Wednesday, March 19, 2014

A Right Livelihood?

“Right livelihood,” is one of the cornerstones of Buddhist philosophy. That’s basically how you make your living and how you produce goods and services. The primary rule is that you harm no one, and increasingly it is interpreted to mean that you cause no suffering and no harm to the environment. There's a compelling and thoughtful discussion on "Right Livelihood" on Bill Moyer's blog here that is worth the few minutes it takes to read.

And never was it more needed.  Our rampant consumerism and growing inequality between rich and poor could lead to the collapse of Western civilization according to a new NASA-funded study written up at The Guardian’s Earth Insight blog. The study looked at the factors that have caused civilizations to collapse in the past and makes a compelling argument that we may be headed in that direction.

By investigating these past cases of collapse, the project identified the common factors which explained civilizational decline, and which may help determine the risk of collapse today: namely, Population, Climate, Water, Agriculture, and Energy.

These factors can lead to collapse when they combine and generate two crucial social features: the scarcity of resources compared to the size of the population and the division of society into two classes; the Elites [the rich] and the Commoners [the poor].

These two social factors have played “a central role in the process of societal collapse,” in all such cases over the last five thousand years. Currently, these factors are seen in our own global society at high levels with "Elites" based largely in  industrialized nations increasingly consuming  the greater share of the earth's resources, leaving the workers who do the physical labour that produces the wealth allocated only enough resources to maintain life at subsistence level.
In the scenarios the researchers studied, the “elites” were the last to feel the effects of the collapse, which, at first, were only apparent to those beneath them on the social ladder.

The wealth of the Elite means that they are protected from the worst effects of the collapse until much later than the Commoners, allowing them to continue  with business as usual despite the impending catastrophe. The same mechanism, they argue, could explain how historical collapses were allowed to occur by elites who appear to be oblivious to the coming catastrophy. 

As Marie Antoinette is said to have remarked when told the peasants were rioting because they had no bread, "Well, let them eat cake!"

For an increasing number, there is neither bread nor cake, nor hope.

Read the entire article at The Guardian.

A Wedding Day

This month's KIVA loan goes to Manushak, who is in her late 40's.  This is the second time we have loaned money to Manushak. She paid the first loan back in full and on time and we are happy to make this second loan for a very special reason.

Manushak is a widow who was left with three children to raise alone. She has no higher education and over the years she has worked very hard to give her children a decent life, doing all kinds of work. She worked in a factory and in a kindergarten. For several years she sold clothing from a booth in the market. Now she has her own small business selling fruit and vegetables at the city wholesale market.

Manushak’s daughter is now married and lives with her husband. Her younger son is a student. Her elder son helps Manushak selling fruits and vegetables in the Kapan market. He also financially supports his mother and younger brother by using his car to provide taxi service.

Manushak is very proud of her son. He has grown up to be a very kind, decent and solicitous person, and he feels a great responsibility for providing his mother with good living conditions. Manushak asked for a loan of of about $1,000 in order to pay for her son’s wedding reception, and to buy gifts for him and his pretty bride. She wants to make their wedding day memorable and wonderful.

We are proud to help this loving mother provide a happy day for her family.

Saturday, March 15, 2014

Free from Suffering

There are days when the world's pain is almost too much to bear. The news this past week has been horrific, and promises to become even worse.

In all of these terrible situations there are good people, people motivated by love, working quietly behind the scenes to ease suffering as best they can but we ask ourselves again and again, "Why do we hate each other so much?"

What is it in us which can so easily be manipulated to dislike, mistrust and despise each other? This isn't just a problem at the national and political levels. I've had ample opportunity in the last year to see how small, initially compatible groups of five or six people, working on a common goal, can be twisted into a ball of razor wire by one person determined to cause chaos, who does not mind sinking to lying and deceit to achieve their goal.  

Power, or even the illusion of power, is addictive. Lots of people get a dose of crazy when they are given power, even in a relatively small group. Without an extremely skillful leader discussions soon degenerate into power struggles which have no relevance to the issues, especially when you have a person who constantly stirs the pot of controversy.

Having served on two boards of directors in the past several years I have deep compassion for politicians and diplomats who strive to keep the peace when faced with power-crazed ego-maniacal autocrats, dictators, tryants and warring tribal leaders.

Which is why I found the following hymn of compassion from Lewis Richmond's book, Aging as a Spiritual Practice so very useful.

May I be filled with loving kindness
May I be free from suffering
May I be happy and at peace

May we be filled with loving kindness
May we be free from suffering
May we be happy and at peace

May all beings be filled with loving kindness
May all beings be free from suffering
May all beings be happy and at peace

Of course we know that we ourselves, the "we" of our families, and all beings are not filled with loving kindness, nor are they free from suffering, happy and at peace.

But this is what we long for, for ourselves, and everyone, even those who sow discord. Acts of cruelty and hate do not bring peace, but deeper suffering to those who inflict them. Even a "victory" won by violence brings guilt to the perpetrator. Guilt may be hidden under bravado, but the pain it causes is still there.  

And this is my prayer for all, from the Taliban strapping on a belt of explosives to the board member who sows discord and mistrust to further a personal agenda.

May we all be filled with loving kindness
May we all be free from suffering
May we all be happy and at peace

Because if we were - truly - how could we hate?

Wednesday, March 12, 2014

Wrestling with fear and anger

The Buddhist monk Thanissaro Bhikkhu writes, “The Pali word for forgiveness — khama — also means ‘the Earth.’ A mind like the Earth is nonreactive and unperturbed. When you forgive me for harming you, you decide not to retaliate, to seek no revenge.

You don’t have to like me. You simply unburden yourself of the weight of resentment and cut the cycle of retribution that would otherwise keep us ensnarled in an ugly samsaric wrestling match. This is a gift you can give us both, totally on your own, without my having to know or understand what you’ve done.”

This is a hard concept for Westerners to wrap their heads around. We've been brought up to believe that justice is only served when you can exact "an eye for an eye and a tooth for a tooth".

Even if we don't take this concept literally we have the cockeyed notion that by staying angry with someone who has angered or wronged us we exact some cosmic payment from them, when it's exactly the opposite. Our anger and bitterness exact a toll on us, on our level of satisfaction with life, and even with our health.

We've all met people who can't let go of a grudge, a slight, an exchange of heated words. Years later they are still fuming as actively as they were five minutes after the incident happened. They are never free, they constantly rehearse all the ills done them over the years.

I experience this to some extent myself, and have to watch myself when I start leaning in that direction. Because my two primary genetic illnesses are "invisible" without careful examination, I've been on the receiving end of some pretty vicious remarks from physicians who were not well-informed on my disorders.

Because of many negative experiences I now have a real reluctance to go see the doctor, even when I need to do so. I keep thinking about those people who were cruel to me, and I wrestle with fear and anger over the years when I had no treatment, and doctors who called me a sympathy seeker, or a faker. But I'm working on it.

What a relief it is to be able to lay that burden aside. It doesn't mean I believe that what these people did was right, or that I do not still feel hurt when I think of their cruelty. It's just that when I do think of those times I visualize those feelings of resentment and bitterness as anchors chains I'm dragging behind me with each step and I make a conscious decision to let go of the chains of and allow them to drift away, carrying their emotional baggage with them.

I wasn't to blame for what happened, but the past is gone, and it can't be changed. I am now setting myself free from their guilt. This is a gift I'm giving myself.

Thursday, March 06, 2014

Adventures in Genealogy - Autosomal DNA

Most family trees have a few nuts

Several companies now offer Autosomal DNA tests for genealogical purposes. An Autosomal DNA tests looks at the ancestral DNA of both parents of the person being tested. This means you see both Mama and Daddy's parents, grandparents and those before them, and also the descendants of the great-great-great grandparent, etc.

So you don't see only a straight line of descent, but you also may have matches with people who descend from your 3rd great-grandmother's sister, whose married name you do not know, and whose 4th great-grand daughter's married name you do not know.  

Autosomal DNA is the long-time genealogist's dream come true, if you know how to use it.  Personally I can't rave about it enough. It's allowed me to identify the parentage of my 3rd great-grandfather George Perkins, confirm a long string of ancestors I'd done the paperwork for, confirmed that I am 1/10th Native American, and that ancestry is shared between three different grandparents. It's allowed me to confirm that my 3rd great-grandfather Levin Clark was Nanticoke Delaware, as we believed all along. I've learned that Winston Churchill was my 10th cousin as was Franklin Delano Roosevelt. Now, along with my pirate Haymans I have a 9th or 10th great-grandmother who was convicted as a witch during the Salem witch hysteria. And at some point in Colonial America I have a set of great-grandparents, one of whom was Native and the other African, parents from South Africa and Sub-Saharan Africa. One of my next quests is to locate that couple if possible.   

Unfortunately most of the people I've encountered haven't a clue how to use Autosomal DNA. Those who have done genealogy a long time usually grasp the concept more quickly, but those who are just beginning and thought a DNA test would provide an easy trip to the genealogical heaven of royal ancestry (or whatever their goal) is have learned:

1) that autosomal DNA does not come with surnames attached.

2) the family tree is not built by the test.

3) that they should pray they have an avid genealogist in the family who has a well-researched and documented family tree, and that they can be induced to share it.

4) that it takes hard work and a good deal of time to find the match between two persons or families who are more than two generations apart.

5)  that there very well may be a "surprise" or two  (i.e. illegitimate child, adoption, or a racial heritage one did not expect) in one's tree. 

So how do you start if you have tested and don't know where to go next?

1) Register with Gedmatch and upload your raw data. You'll be given a kit number when you register. Write it down.

2) Build a spreadsheet. This can be a table in a txt document or any spreadsheet program. Unless you organize your matches and keep track of them you'll soon be drowning in a sea of jumbled information.

Here are the headings I use on my spreadsheet:

chr #  beg  end cM  snps  GM#  OCM  Name  Notes

chr# is the chromosome number the match is found on. Your matches should be put on in order beginning with chromosome 1.

The "beg" and "end" are where the matching segment begins on the chromosome and where it ends. These should placed on the sheet in order from the lowest number of beginning segment to higher, so on chromosome 1 my first match is at 2,492,640 and ends at 247,174,776. The next match starts at 3,669,635 and ends at 7,490,355. The third begins at 4,058,815 and ends at 11,694,927. These are always ordered by the position of the beginning segment.

If your relationship is a close one you will probably share segment matches on more than one chromosome so OCM stands for "Other Chromosome Match". I share segment matches on seven or eight chromosomes with several close cousins. The OCM column is how you keep track of that.  

In the SNPs column record the number of Single Nucleotide Polymorphisms (single units of DNA) you share. Under 500 is insignificant, unless you know the person is related. Since SNPs are shuffled with every generation you lose the larger segments in a roughly calculable order.

You share about 50% of your SNPs with each parent, 25% with each grandparent, 12.5% with each great-grandparent. In theory by the time you are back to your 3rd great-grandparent you expect to see only about 1.5% of their DNA in an unrecombined state and this may be too small for the tests to pick out. In practice this does not always work out. Some DNA segments seem to stick together for a longer period of time. I have a robust match with a man who shares a set of 8th great-grandparents in Bath Somerset UK in the mid 1600s. Despite intense searching we can't find any other shared ancestry. Our 7th great-grandparents were a pair of brothers.

On the other hand I have a very small match with a 2nd cousin I know well, whose great-grandmother was the younger sister of my grandfather. I do not match her brother at all, though my son does.

On the spreadsheet GM# stands for GedMatch number. GedMatch is so useful that I can honestly say I'd not have accomplished much of anything without it. For one thing anyone who has tested with any of the companies that do autosomal testing can upload their raw data to GedMatch which gives you a pool of several million people. GedMatch generates a fresh list of who you match every time you log on, showing you where you match them, who *both* of you match (this is called triangulation), how many generations apart you are, and about two dozen different utilities unavailable elsewhere. These are all free of charge. The site is run by volunteers, but be fair. When you sign up donate a few dollars to cover the costs of running the servers. I appreciate their services so much I donate to them on a quarterly basis.

The Name column should be self-explanatory, this is the name and e-mail address of your match.

Notes - here's where I put the relationship once I have worked it out. Usually relationship and last common ancestor(s).

Keep in mind that a match from a couple (say gg-grandparents George and Betsy) could be from either (or both) of them. To separate out whether the segment came from George or Betsy you need to find a descendant of George's parents or sibling, who was not married to a relative of Betsy's. For example when I finally confirmed the parents of my very elusive 3rd great-grandfather, George Perkins, it was through DNA matches.

First I matched segments with descendants of two men who were documented in census records and his will as sons of Jacob Perkins and wife Elizabeth Cole Perkins. Then I was able to identify which DNA belonged to Perkins by matching segments with a descendant of Jacob's great-grandfather, Isaac Perkins who had no Cole ancestry, and I identified the Cole ancestry in the same way, by matching segments with a Cole relative of Betsy's who had no Perkins ancestry. (It probably goes without saying that I really love analyzing data.) 

The spreadsheet will be "thinly populated" to start with, but as you begin to identify matches it becomes clear that people who match the same segments as your "Smith" cousins A and B are going to match the Smiths or one of their ancestors. It becomes a process of you and your match comparing trees for common ancestors.

As a rule I won't work with someone who is unwilling to meet me halfway and do their share of the research. Nor will I play 20 questions with someone who won't give me a basic dropline or is unwilling to let me see their family tree. Here's an example:

Background: From sharing genomes months ago and GedMatch I know this person's ancestry lies within my father's maternal line. Our exchange went like this:

Them: Can we share genomes?

Me: We shared our genome information months ago. We match on Chromosome 17, these segments xxxxx - xxxxx. That segment matches my father's maternal line. Are any of the following surnames familiar to you? [list of surnames]

Them: I have a Kelly from Ireland. You have a Kelly on your profile. Was your Kelly Irish?

Me: I have only one Kelly in my tree. She was born in Dorset UK in 1747. I recently found their marriage certificate and learned she was the 2nd wife of my 4th great-grandfather. They were in their 60s when they married and had no children. So she couldn't be our match.

Did your ancestors live in any of these places? [I listed the places my father's maternal family lived (all in southern states) including Carroll County Arkansas.]

Them: Were your Carroll ancestors Irish? I have Irish Carrolls.

Me: I have no Carroll ancestors, that was a location, Carroll County Arkansas. Do you have a dropline or family tree I could look at?

Them: I have a tree on It's private. You can't see it.

Me: I'm sorry I can't be of any more help.

I was so frustrated by this I got up and vacuumed my floors. So it's all good. I was going to try to mop too but no one else asked me another sufficiently exasperating question, and I ran out of energy before I got to the mop bucket. Now I have to sweep again before I can mop since the "enfant terrible" has, as usual, rolled in the litterbox and carried clay litter everywhere. I don't need to do his tree to know he's got a bit of the Devil in him. 

But, if you are interested in learning how to do genomic "mapping" I'm happy to answer questions. Please feel free.