#93– The hijacking of caring.

In the beginning there was a disease.  The medical people were baffled by it.  They tried treating the symptoms, easing the pains with drugs as well as using leeches and popular incantations.  Nothing seemed to work.  They gave the message to the families: “We do not know.  In time, medical scholars will, if supplied with copious amounts of coin and fine facilities within which to work, study the disease and maybe, someday, they will accidently find a cure.”  They called the disease multiple sclerosis (MS).

It was not until after the Second World War that people with MS and their families started to connect with other families with similar concerns.  They found caring people out there who shared the concerns, knowledge and desperation for a cure.  They cared so much that they started banding together to collect coins and dollar bills and cheques with which to hire professional advisors and organizers to work for these people who cared.

Progress was slow at first.  Nobody knew much about this disease but these people who cared taught others about the disease, interesting doctors and care givers and researchers in the challenges of the disease.  Multiple Sclerosis came to be known as a medical mystery of major concern.

In Canada, these caring people were so successful that the Multiple Sclerosis Society of Canada became one of the best know national health agencies in the country after the Cancer Society and Heart and Stroke.  By balancing their objectives of services to patients, educating the public about the disease and funding carefully vetted research projects, they were raising the funds they needed to do their work.  In time, they raised millions of dollars each year.

The Canadian society was so successful that it could even share its success with other multiple sclerosis societies.  Canada’s caring missionaries were active in exchanging ideas with these societies, on how to raise money, how to teach people about the disease, how to care for patients and how to work with governments and medical researchers to ensure that there could be a coordinated, world-wide effort.  In time, their approach meant that many, many millions were being directed to solving the mystery of MS.

But in achieving their success, these caring people made a mistake.  They allowed themselves to be hijacked.  It did not happen suddenly.  They were hijacked over time.  It was an insidious process.  They lost control of the society they had built.  The professionals they had hired had gradually taken over.

Nobody said: “Let’s get rid of the caring people.”  That also just happened over time.  In more than 50 years of its existence, the MS Society of Canada hired more and more staff. The common excuse was that it was more convenient to do the work with paid staff.  It was more professional.

The type of people sought to be on the society’s boards also changed.  People who cared were not always the important people who could raise more money, add prestige to the boards or understand the power point presentations of the professional help.  It was not that the prestigious board people who replaced them were less caring.  They were just less connected with the disease.  They were less desperate.  Many only had an understanding of the disease in the abstract.  They were more like the paid staff who could leave work and go home to a normal life without someone around to remind them of multiple sclerosis.

And they found the medical profession supported this approach.  Medical people found it easier to deal with other professionals and with prestigious executives from leading firms on the MS boards.  Nobody really wants whiny, overwrought patients or their families adding to the noise level.

But what they forgot was the determination of these caring people.  They forgot the leadership that these people gave to driving the society forward.  We have found that the paid staff can write about momentum but they often lack the leadership skills to create it.

There will be more on this subject.

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Complaints, comments, criticisms and compliments can be sent to   peter@lowry.me

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