Keys to a Better Life

I just finished reading my recent AARP Bulletin and found an article that really resonated with the work we have been doing on social capital, relationships and community building.  It was penned by Jo Ann Jenkins, the CEO of AARP and summarized the keys to better health.

The 2 key ingredients reviewed are "friendship and purpose."  Here are some of the things reported:

People with viable social connections are more likely to get plenty of sleep, eat healthier, have peace of mind and less stress.  They state that loneliness is the new smoking and being lonely can shave 8 years off life expectancy.  The mortality risk for loneliness is greater than that of obesity and that social isolation of older adults is associated with an estimated $6.7 billion in additional Medicare spending annually.

Social isolation is such a problem around the world, that foundations have identified it as the key issue today.  The UK has appointed a "Minister of Loneliness" with the challenge of measuring the impact of loneliness and to find strategies in Great Britan that can deal with it.  Similarly, CareMore, a health care provider in California has hired a "Chief Togetherness Officer" to directly address loneliness and its impact on health.

The other variable, "purpose," is equally impactful.  A sense of purpose for many people is more important than money, and it has been associated with a variety of health issues.  Studies have found that people with a sense of purpose get better sleep, have fewer hospital stays, and see their physician less.  They eat healthier, tend to exercise more, and avoid drugs and alcohol. 

Further, optimism and purpose can add 7.5 years to your life, and help you heal more quickly, and show significantly less cardiovascular issues.  Without question, lifestyle and choices we make can have a huge impact on creating a better life.

Think about this and do your best to nurture your relationships and the directions you have chosen.  Friendships (social capital) and purpose are vital elements to life success.  If you need to find a purpose in your life, come join us at CLASS, as we work to build a community where everyone belongs!

Change, Though Slow, Can Happen

Years ago, I recounted an experience I had in my book, "Interdependence: The Route to Community" (1991).  It related to a community outing of 6 people with disabilities I observed at a local McDonalds in 1989.  As the story went, I had taken my children to McDonalds and while we were sitting with our meals, an obvious group of folks with disabilities, probably from a local group home, made their way into McDonalds.  They had 2 staff that were overseeing them and it was clear who was whom.  The folks with disabilities were dressed in ways that were culturally inappropriate, either too large, or small, or clearly mismatched clothing.  

The staff sat these folks down, not far from where we were sitting and proceeded to get their food orders.  Then, one staff member went to fill the orders as the other kept watch over the "clients."  It was all so odd and out of place and I noticed other people noticing.  After they finished their meal they were marched out to a large van in the parking lot with writing on the door that spoke of the agency that served them.  I remember there were balloons and a smiley face in the logo.

I recounted this story in my book as an example of how community outings can message some wrong things, especially when the goals for such outings is to promote community inclusion.  I subsequently spoke often of this experience in workshops to suggest alternate strategies and approaches to inclusion and full community participation.  As change agents we need to understand the powerful external message of our work.

Interestingly enough just the other day, my wife and I went to our local Cracker Barrel for breakfast and after our meal, I sat on porch rocker while she shopped a bit in their store.  While sitting in the sun, observing people come and go, I noticed a nicely appointed SUV pull into a handicap spot.  There were 3 folks in the vehicle, and I thought nothing of it.  Then slowly I noticed that the driver got out to help the other 2 passengers.  They were all nicely dressed and headed into the restaurant.  A few minutes later, another SUV pulled into the lot, and as these 3 folks got out, I began to realize that these must be folks who receive residential supports, out for morning breakfast.

I couldn't help thinking back to that experience in 1989 at the McDonalds to the experience I was observing right now.  The differences were stark - no large van with signage, appropriate dress, folks in small increments where i couldn't tell staff from folks being supported.  All of it so typical and blended into the community norms.

I smiled a bit and felt some sense of satisfaction that the messages of community inclusion can, in fact, happen.  I don't know if these folks were even part of a service system, or if the van drivers were staff, or just friends enjoying a morning out.  I was just happy that it was happening, and that no one noticed.

On Fatherhood

We are ready to celebrate Fathers Day, and although I understand the commercial focus of these type of holidays, they do allow us to reflect on the critical role fathers play in helping mold their children into productive men and women.  Of course, for most of us who are fathers, the template we use in this challenge is often tied to the relationship we had with our own fathers; and even if that experience was not the best, it was probably instructive.

I count myself among the lucky men who had a father that was a guide, mentor, and, in a way, my best friend. He wasn't perfect, i don't know any father who is, but his values and the lessons he tried to help me my bother and sisters understand were steady and predictable. Observing him, as a child, teenager, and then man myself could not have created a better framework for me when I became a father myself.  As I summarize his temperament and style there were 3 major themes that emerge.

One was a sense of gentleness with us as kids.  Of course he could lose his temper, but he always was able to walk away, collect himself, and then re-engage.  He never bullied us, or anyone else for that matter and would use his faith oriented adage, blessed are the peacemakers.  This gentleness extended in many ways and I never heard him use a cross word with our mother, though times she could be provocative.

He was a good listener - not perfect - but would get us to talk about the issues that were creating barriers to our success.  In his listening he would temper what he was hearing with the important values he wanted us to understand.  On occasion his Italian temper would get in the way of the deeper listening, but even these experiences taught us how emotions can influence how you are seeing something.

His work ethic was strong and he felt that we kids should carry some of the economic weight. He was a newspaper man, so from my earliest memories I delivered papers in our neighborhood.  I kept that route into high school then passed it on to my brother when I got a job setting pins at the local bowing alley.  I worked in a men's store, and then started playing music in high school.  All of these efforts allowed me to save money for college and ultimately get my degree without any loans. This work ethic track set a tone that continues for me to this day.

So, if you are a father, think about the lessons that are important to you.  If they track back to your dad, and you are fortunate enough to still have him in your life, thank him for the time and energy he expended to help you become a better person yourself.  If you didn't gather lessons from your dad, think about the things you can do now to make you a better father.  Either way recognize and appreciate the amazing opportunity you have now before you.

Notes From The Hospital

Folks in my primary social capital circle know that over the past4  months I have been hospitalized with 2 episodes of pancreatitis.  It is a sever condition where the pancreas, due to a blockage, becomes inflamed and dysfunctional.  It comes on swiftly and the pain is unbearable.  Once diagnosed the treatment approach is hospital admission and the complete shutdown of the digestive system, and pain management.  My 2 recent admissions (early March and late May) tracked the same and, believe me, it is a condition you wouldn't wish on your worse enemy.

Now this blog is dedicated to looking at social capital and relationship issues, not a medical reflection, but their is a huge connection between social capital and acute medical situations that can not be denied.  With pancreatitis, the pain is so outrageous that it is virtually impossible to manage without a social support system.  I couldn't imagine doing what was required alone.

Still, laying in a hospital room, sometimes in intense pain, sometimes under the influence of pain medication, it is amazing the insights you have and the reflections that follow.  To this end, here are some lessons learned.

1. Recognize that when pain medications are necessary there are some options that might work better for your system.  When they gave me morphine, I immediately became nauseated and threw up during the application process.  Of course, throwing up comes with pancreatitis, but if you can lessen this that is one less pain issue.  What I discovered is that when they shifted me to dilaudid, I had limited nauseous reactions.  Further, if the meds are applied slowly into the IV the results adjust better to the system.

2.  When urinating into a bottle, especially from a hospital bed it is best to stand up (if possible), shift to your side (if you are mobile enough).  Try to avoid peeing in a bottle while on your back.

3.  As bad as you feel, and as insensitive that some staff can be (especially the overnight shift), the best policy is to be positive, take an interest in them and say please and thank you. It will serve you down the road.

4.  Know that you can address the beeping of an IV monitor by hitting the reset button.  Now this does not work all the time, and if you need a change on an IV bottle the beeping will continue.  Still, these machines, and their infernal dysfunction, will make you crazy.  The staff will blame your IV position and how you are laying on it.

5.  Be prepared to not get much sleep.  The pain meds will help make you drowsy, but just when you drift off, the aide will be in to take your vitals. In fact, the drawing of blood, always a deterrent to sleep, will happen in the middle of the night so that results are available for the docs when they come in for rounds.  Forewarned is forearmed.

6.  With digestive issues like pancreatitis, one major marker, that stand between the hospital and your dischage home, is having a bowel movement, and the passing of gas.  Now, with the digestive system being shut down and taking nothing by mouth for 4 days, it takes a while for this process to kick in.  Be patient.

I hope you never need any of these lessons and tips, but as one who is driven to observe, and try to make sense of experiences, i needed to share.  As we all get older the more we will be destined for system breakdown, these kinds of experiences may be of help.  Tread boldly!

Have You Explored Your Values

Each summer session I teach a class in the School of Health and Rehab Science at Pitt on Human Relations.  The course is actually titled, "Human Relations in the Health Care Environment," but I make the course about human relations in a general sense.  I don't think that our ways of relating should change that much regardless of the setting and the students seem to be good with this approach.

In the first segment of the course we focus in on knowing ourselves better and I use a variety of exercises and activities designed to reveal a bit more about us.  One such exercise is a "values clarification" activity designed to push the respondent to think about the important things they value in life (and in others).  I found this exercise in a great book by Peter Senge titled, "The Dance of Change."

The exercise lists out 60 unique values in 3 columns and prompts the respondent to check off their top 10 most important items.  Then it pushes us to whittle those down to 5; then 3, and finally to identify the top value.  It is a hard exercise because the values all seem important.  Of course, this blog is too short to list all 60 items, but here is a sample:  Achievement, Affection, Close Relationships, Democracy, Freedom, Friendship, Having a Family, Helping Society, Honesty, Knowledge, Loyalty, Religion, Self-respect, Truth, Wisdom and the like - 60 in total!

Now I don't know the last time you thought about the values you hold dear, but I know that the students (all juniors and seniors) tell me that they don't routinely reflect on values.  Although our values are essential to important relationships we don't think deeply about them.

After the students finish the exercise, I compile the collective items and have been doing this over the last 10 years or so and just recently looked and compared their responses and found some interesting trends.  Now, I don't know what this actually reveals about the values of college students, but let me share the collective top 3 values over the last 5 years:

2014 - 1. Achievement, 2. Personal Development, 3. Affection

2015 - 1. Affection, 2. Close Relationships, 3. Self-respect

2016 - 1. Having a Family, 2. Affection, 3. Religion

2017 - 1. Honesty, 2. Having a Family, 3. Affection

2018 - 1. Having a Family, 2. Quality Relationships, 3. Helping Others

So, the next time you have a spare minute, think about the things you value.  More, work toward making these values happen in your life.

Thoughts to Ponder

Most folks who know my work or have been involved in training or lectures I have done, know that I am a lover of quotes.  I use them often when I share concepts and so I am always on the prowl for a new quote that might help express the core of the topic.  Of course, since many of my sessions are on social capital and relationships, there are many quotes that are appropriate.  To this end, I wanted to share some thoughts for you to ponder as you think about the social capital in your life.

"Time is too slow for those who wait - too swift for those who fear - too long for those who grieve - too short for those who rejoice.  But for those who love, time is eternity."  Henry Van Dyke.

"You are the music, while the music lasts"  T.S. Elliott

"Knowing is not enough; we must apply.  Willing is not enough; we must do."  J.W. vonGoethe

"To be lonely is to feel unwanted and unloved; and therefore unlovable.  Loneliness is a taste of death."   Jean Vanier

"In everyone's life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who re-kindle our inner spirit."   Albert Schweitzer

"In the end we are all separate.  Our stories, no matter how similar, come to a fork and diverge.  We are drawn to each other because of our similarities; but it is our difference we must learn to respect."   J.W. vonGoethe

"From everyone to whom much has been given, much will be required.  And from the one to whom much has been entrusted, even more will be demanded."   Luke 12:48

"Of all the things which wisdom provides to make us entirely happy, much of the greatest is the possession of friendship."   Epicurus

"There is no greater disability in society than the inability to see a person as more."   Robert Hensel

Thanks for thinking about, and working towards a community where each belongs.  A successful society needs everyone.

More Data on Social Isolation

Our Social Capital/Social Justice Conversation Group met this morning and as is typical for our monthly discussions examined the powerful and negative effects caused by social isolation.  One of our members shared a recent report done by Cigna that looked at the driving behaviors associated with social isolation.  It is a new and fresh analysis culled from interviews with 20,000 Americans.

You can find the results with a google search but wanted to share some of the high points with you in this blog.  First and foremost is that social isolation is now deemed a public health crisis and is on the rise.  They summarize that loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it more dangerous than obesity.  In fact, their study, which used the UCLA Loneliness Scale and was conducted online, found that most Americans are considered lonely.  The study revealed:

*  Generation Z (adults 18-22) and Millennials (adults 23-37) are lonelier and claim to be in worse health than older generations.

*  Social media use alone is not a predictor of loneliness

*  Students have higher loneliness scores than retirees

*  There was no major difference between men and women and no major difference between races when it cam to average loneliness scores.

*  Individuals who are less lonely are more likely to have regular in-person interactions, are in good overall physical and mental health, have found a balance in their daily activities, and are employed

*  When asked how often they feel like no one knows them well, more than half of the respondents (54%) surveyed said they feel that way always or sometimes

*  Just under half of all those surveyed report sometimes or always feeling alone (46%) and/or feeling left out (47%)

*  At least two in five surveyed sometimes or always feel as though they lack companionship (43%), that their relationships are not meaningful (43%), that they are isolated from others (43%), and/or that they are no longer close to anyone (39%).

These are powerful findings, especially in the light of a world where most of us have hundreds of friends or followers on Facebook or Twitter.  So, how lonely or isolated are you - and more, what can you do about it?

Memories and Relationships

I was driving to work the other day and heard a clip from the old tune - "Thanks for the Memories," the Bob Hope tune that won an Academy Award in 1938.  Hope used it as his signature song and closed all of his shows with the tune.  The song created a brain worm and I found myself singing or humming the melody all day long.

Later that day, still haunted by the tune, I looked it up and listened to the lyrics.  Itis an ode to a broken love affair and speaks to the little things that remind us of those important people in our lives.  This song got me to thinking about the important memories in our lives, and the encounters that we easily recall when we hear a song, or see an image that baits our memory.

As I continued to ponder this, I recalled an Anthropology class I had taken in graduate school long ago.  I remembered the professor talking about the elements that constitute and frame a culture.  She talked about rituals, patterns, jargon and memory as key elements of a regular community.

This notion of memory, it seems, is a sort of "glue" of social capital.  Even though people go in and out of our lives, the memories we form together etch deep.  This might be why we keep and cherish scrap books, or that folks keep thousands of pictures on their phones.  In a way we don't want to forget the experiential fall out of our social capital.

Reminiscing brings us back to the "good old days."  Photos, songs, and images bait this reminiscing.  So the next time you are with friends remember that today is the "good old days," and that the experiences we create, in a way, frame our humanity.

Strength in Differences?

I am doing some research for an article I am writing and came upon an interesting quote from Ari DiFranco.  It states:

"I know there is strength in the differences between us; I know there is comfort where we overlap."

This got me thinking more about similarities and differences.  Years ago (1995) I wrote a book titled, "Beyond Difference."  In this work I postulated that our differences push us apart - that this action is bore from our defense mechanism of caution, or even flight from that which we don't see as similar or do not understand.  I argue in the book that our differences create a wedge between us and the only way we can move forward in relationships is to find more similarity and just let our differences be.

Then I considered this quote from DiFranco and it challenged me to think deeper on this notion of differences.  I get the "comfort in overlap" as our similarities do create bridges in connection.  They give us something to talk about and to build upon. 

But in the quote, he also suggests that there is strength in our differences - a position that I had not considered.  It caused me to go a bit deeper on this issue.  What is it about difference that might promote strength?  Is it in the fact that the differences might cause us to think deeper - or to put ourselves in the different person's shoes?  Or, does it suggest that the difference makes us feel superior, and in a way, stronger (or better) than the different person.  And in all this, how does the process create strength?

I am still pondering this notion, but I wondered what you might think.  Is there strength in difference?  When we encounter people who are different from us does this make us feel stronger - and if so, how?

The Univerality of Social Capital

I have been a student of social capital theory for many years.  After being exposed to the concept in the early-90's, I have been looking at its application as it relates to folks with disabilities.  We know that many people with disabilities have marginally less social connections and over the years have been trying to understand why this is and to change this reality.

I know in my own family experience growing up with a cousin who had downs syndrome, as well as supporting my dad after his diagnosis of Parkinson's Disease, that limited relationships, as well as the loss of relationships created real vacuums for them.  And in my work with CLASS (formerly UCP) these similar relationship voids were (and are) constant and present.

As I began to write and speak about the importance of relationships for people with disabilities, I began to find that this challenge didn't just apply to them.  I started to frame the concept more from a personal focus and asked audiences to think about the relationships in their own lives.  This not only helped people appreciate the impact of the concept, but also see its relevance more broadly.

Now more and more groups, interested in a variety of community concepts, are starting to appreciate the tie in of social capital and better outcomes or impact to them.  Community action groups, mental health advocates, gerontologists, educators, politicians, criminal justice advocates, children's programs, and on and on, have begun to open their thinking on the impact of relationships to their agenda. 

Certainly the key to better outcomes, regardless of the emanation of issues, is found in people connecting with people and the building of social capital.  Indeed, everyday people, who might not be struggling with any particular issue can find their lives enhanced through the outcomes of social capital.  It is a universal concept that we should all strive to get better at in our course of lives.  

What Makes an Expert

I just returned from some presentations I did in Winnipeg, Manitoba, and at the conference I was introduced as an "expert" in the concept of social capital.  I did my presentation but later reflected on the introduction and it caused me to think about what makes an expert.  Indeed, I have done advanced study on the notion of community and social capital, as well as having garnered actual experience in the work we do at CLASS - but does this make me an expert in the subject?

Certainly we are exposed to experts all the time; we see and hear them in the media speaking about things they are supposed to know more about than the average person.  When we go to conferences or events, experts are on the program to discuss subjects in which they have some expertise.  So, what makes someone an expert?

To me, expertise is a combination of a number of factors.  Of course, we expect that an expert has some advanced knowledge, study, or familiarity with the topic.  I want them to have some formal, rigorous efforts in the topic via study, research, or deep exposure.  I would also want them to have some direct experience with the topic and not just understand it academically, but to have wrestled with it in application.  Last, I hope the expert has some broader wisdom and can understand the direct application of the subject in everyday life.

In this day of social media and open access to other people, we really need to be cautious about who we believe.  Thinking about a topic, and then putting trust in what the "expert" says about it can make any life application easier, or harder; so we should really think about the credentials the expert has in the subject. 

So what do you think - what makes an expert in your opinion?  Who do you tend to believe on subjects, and why?

Family Engagement Patterns

One of the things I love about the work we do is the opportunity to gather evidence related to our field.  Recently CLASS partnered with our sister organization, Mamre, in Brisbane Australia, along with our good friends from Chatham University in Pittsburgh to explore family engagement patterns.  We were particularly interested in looking at the differences in family engagement between families who have children with disability labels compared to families who have children without disabilities.

So, we identified 50 families in Pittsburgh, and 50 in Brisbane, 25 of which had children with disabilities, and 25 whose children did not have disabilities in both cities.  We then proceeded to conduct a community engagement survey, developed at Harvard University, with these 100 families.  This survey was designed by Robert Putnam, a renowned sociologist and prolific researcher on social capital and community engagement.

We recently completed the research and are now in the process of examining the data for trends and findings.  In the early analysis we are discovering what seems to be some interesting cultural and disability related trends.  Of course we plan to write this up and share it more widely, but here are some aspects of interest:

*  In both the US and Australia, children without disabilities are much more likely than children with disabilities to have friends who do not have disabilities, but there is no significant difference in whether the two groups have friends with disabilities.

*  Families in Australia who have a child with a disability are much less likely to go to a friends home or community events compared to other groups.

*  US families were more likely than Australian families to go out to dinner and Australian families who have children with disabilities were the least likely (of all 4 cohorts) to go out to dinner.

*  Australian families who have a child with a disability appear to feel most lonely in their neighborhood compared to all other groups.

*  In both the US and Australia, children with disabilities tend to not see their school friends outside of school as often as children who do not have disabilities.

These are but a few of the findings, but we think this kind of information is important for a number of reasons.  We know that community engagement is a key step in building social capital, yet for most of us, we rarely get formal exposure to engagement protocols.  Rather, we learn how to engage by observing others engage.  If this is the case, and the families who have children with disabilities tend to engage less, then their children get less chances to observe engagement protocols - and, in turn, may have a more difficult time engaging at all.  This, in fact, may be one of the reasons why adults with disabilities, on average, tend to have less social capital than their non-disabled peers.

There is so much more we need to learn about community engagement and social capital, but studies like the family engagement exploration we are doing offer a good start.  Once our analysis is complete we will report the findings and I will be sure to share key aspects in this blog. 


Healing Alone

As I move forward in my recovery from pancreatitis, I still find myself reflecting on aspects related to healing.  When I left the hospital, they armed me with a variety of prescriptions, a strict diet, and strong recommendations to rest.  Given the pain I experienced, I took their directions to heart.

Over the next week or two, my wife was phenomenal in making sure that I followed the doctors order to a tee.  Beyond that, however, she was a warm ear and an encouraging source when I struggled with the slowness of my recovery.  Quite simply, she was at the core of my recovery.

This reality got me thinking about situations where people do not have a significant other on hand, or even close friends to support their recovery.  Certainly people can heal by themselves, but it just seems so much more therapeutic when you have someone at your side in these times of healing.

In our communities there are a lot of people who are isolated and lonely.  Not only when they get sick, but even in the times of health, relationships matter.  

Social Capital and Men

When you think about relationships and connectedness, there seems to be an acceptable difference between men and women.  Women seem to bond and connect so much more easily.  Men, on the other hand seem to be much more superficial.  Of course this is an overstatement, but over the years it has been parodied in comedy and has been at the core of many a joke.

Yet, there seems to be evidence for these differences.  Robert Putnam argues in his book, "Bowling Alone," that women are the social glue that advance community.  He hypothesizes that the fall off of social capital in the past 50 years is partially tied to the distractions that women feel being pulled in their career's.

In any social situation, if you are a fly on the wall, the women gather and discuss deeper issues while the men gather and have superficial discussions about the weather or sports or other inane issues.  Quite simply, men have a more difficult time getting deeper in their relationships, and especially with other men.

This brings me to a recent article a friend sent me about a movement started in Australia called the "Men's Shed."  This is an effort to create safe places for men to gather around projects, or activities, much like you might have going on in your shed.  The movement has a number of outcomes - obviously one is to help men develop a deeper sense of social capital.  Another, related to social capital, is to improve men's health issues.  We know that men typically do not tend to their health at the same level that women do so the hope is the "menshed" will push that indicator.

Regardless, any way that men can become conscious of the importance of social capital, and then find ways to build opportunities to connect deeper, especially with other men would be a good thing.

Nightmares and Reality

I have been recovering from a recent hospitalization and sleeping the full night has been difficult.  My MD prescribed a sleep aid but i was cautious in using it as one of the side effects was nightmares.  After a couple sleepless nights I yielded to the sleep aid.

I stayed up late to watch the special election returns in an off year congressional race that had national implications.  I had taken the med and started to drift off, with the TV still on CNN.  In the middle of the night I woke up looking at the image of a young politician, a new generation of leaders.  He was handsome and articulate; he looked like someone from central casting.  I thought about photos of a young JFK.

Then the scene changed to his opponent, who appeared as a classic politician, one you know will really not work for you, but for lobbyists and big interests.  He had a smirk on his face, looking like he just pulled one over on the electorate.  And he was making his victory speech.

I wiped the sleep from my eyes and realized i was in the middle of a full blown nightmare.  I turned the TV off and tried to get back to sleep.  In the morning i discovered that it really was a nightmare - because the young, articulate political newcomer had actually won the election - maybe there is hope for our political future!

Pain and Suffering

I was recently hospitalized for a bout with acute pancreatic.  This is a condition where the pancreatic duct gets clogged, the pancreas becomes severely inflamed and the pain becomes unbearable.  It is a very serious condition and the primary course to hospitalize the patient, shut down the digestive track with no food or nutrition by the mouth, initiate saline and pain meds via IV.  This was my 2nd bout in the past 10 years - and believe me, it is no day in the park.

The first 3 or 4 days the pain and suffering are excruciating and you don't want to see or have any visitors.  Of course, for most of us our social capital become concerned and want to reach out in support.  We have all done this and, in the end, it is at the core of the health impact of social capital.  Still, as the patient, most of us want to be left alone with our pain and suffering.

Laying in the hospital, reflecting on this was illuminating to my personal understanding of social capital.  Over the years I have read, studied, lectured, and attending trainings on social capital and feel I have a fairly good grasp on the topic.  I have written extensively on the subject with the highly successful, "Social Capital: The Key to Macro Change" 2014).  But this personal experience, when I actually felt better after talking with family and friends, brought the concept full circle.

In the end, as much as we know that the concept of social capital can be deep and esoteric, in the end the notion of relationships is really basic and simple.  Life can bring on experiences of pain and suffering.  These times challenge us both physically and emotionally - but it is the simple notion of our relationships that bring us through.

From Virtual to Actual

We know that social capital (relationships in our life) are complex issues.  We mostly think about relationships being actual, yet with social media we can maintain virtual relationships with people, many that we may have never actually met or spent any direct time with.  Through platforms like Facebook, LinkedIn, or Twitter, we have come to know new people, or have maintained distant relationships with people in our lives that make us feel good.  Still, the sweetest aspects of social capital are found in our actual relationships when we look into peoples eyes and promote a deeper sense of bonding.

This balance of virtual and actual relationships can be managed in a way that enhances the good things we find in social capital; health, happiness, self confidence and a more positive view of life.  In fact, the purposeful community builder can find that using the virtual to compliment the actual can make for better outcomes.  This means that anyone interested in promoting social capital for individuals who are isolated or lonely should understand the symbiotic relationship between virtual platforms and real life.

One such social media platforms that can be extremely useful to the community builder is MeetUp (  This site was conceived right after 9/11 unfolded in the United States.  The MeetUp founders were taken aback by the purposeful connection between people for social good and conceived the notion of a website that would allow people to find others who shared passions.  Over the years the site has connected people in all kinds of ways.  It has allowed newcomers to find social capital through their common interests; it has allowed organizers to put out a call for social action; and for community builders it offers a medium for linking people at risk of social isolation with others.

Recently was sold to a company that is work-site oriented, but the early signs are that it will continue to be a place to connect like people - a virtual platform that leads to the actual. So as a community builder recognize the powerful virtual tools at your disposal in connecting socially isolated people.  In the end, we all need people in our lives that can help us frame reality, and in a way frame better lives for all.

So think about ways you can balance sites like Facebook, or MeetUp to help promote people having a greater opportunity for actual relationships in their lives.  Community builders must use every tool at our disposal to help build community.

The Beach or the Mountains

One of the things we all need to rejuvenate is time away from the ordinary.  These opportunities to get away from our everyday demands is the fodder for re-creating and refreshing our mind and soul.  For most of us this is found in the vacations or recreation opportunities we choose.  Of course, most people think about retreating to the beach or the woods (mountains) when they plan their time off.

For me, both venues offer wonderful opportunity to think, plan and become more philosophical.  Since the earliest years of my work life, I have opted for both venues and have found solace at both the beach in the summers, and the mountains to ski in the winters.  In fact, I wrote 3 of my earliest books (Interdependence, 1991, Beyond Difference, 1995, and Cultural Shifting, 02) while on vacation at the Outer Banks.  There was something about depth and breath of the ocean, not to mention the odors and sounds associated with the surf, that pushes your thinking to deeper places.

But as I write this blog, I am in the Colorado mountains at the Copper Mountain ski resort with my family.  We are enjoying not just the good company, but the blue, cloudless mountain scenery and the perfect ski conditions.  There is something about the sounds of the wind through the trees as we make the long runs through the timeless slopes.  It is occurring to me that the balance of the ocean and the mountains has been perfect match for the deeper thinking I have done over the years and the re-creation of self so important to a more purposeful life.

I read somewhere that our native Indians had an understanding that being in the mountains put you closer to the higher spirits.  That in a way, put you closer to God, the Great Spirit.  Now I don't know for sure, but I do know that for me this seems to be true.  When I am in the mountains there is something unique that I feel.  It may not be exactly a higher purpose, but a more fundamental realization of self, of purpose, of duty.  It makes me feel more alive and cognizant of direction and purpose.

So how about you - where do you find your purpose - how do you re-create yourself to be able to withstand the everyday clutter that can dull the senses and flatten life?  Be it the beach, mountains, or some other setting, make sure you get there on a regular basis.  Life is short and purpose is critical.

Key Family Concerns - Lessons from Partners in Policymaking

There is a wonderful program available in most states in the United States designed for families who have children with disabilities (and self advocates and other advocate/stakeholders) known as "Partners in Policymaking (PIP)"  This effort initiated in Minnesota many years ago and has been one of the most successful disability advocacy programs.  Over the years it has been adapted and adjusted, but the basic design is to have a class of partners attend a weekend curriculum over a 6, 7 or 8 month period, with each weekend focused on a different topic important to families.  The goal is to empower a cohort of disability rights advocates each year in the states that conduct the PIP program.

For the past 20 years or so, I have been active with the PIP faculty and have conducted sessions on community building, social capital and understanding macro change in many different states.  I have really enjoyed these session and the passion that families and self-advocates bring to the program.  In fact, as i write this blog, I have just finished a session with the Florida PIP group.

As i reflect on the session I had today, and the others i have participated in over these many years I am taken by a powerful common theme that always emerges in these sessions.  When we focus on community and examine what these families really want for their children, the discussion always turns to relationships, friendship, and being active in the community - social capital.  The question that almost always emerges is; "What will happen to my child when I am no longer around?"

Of course, all families want their children to be happy, healthy, and safe, but families who have children with disabilities know deeply the realities of isolation and loneliness that manifests more for their children.  They know that, for the most part, their children are not routinely invited or involved in social and community activities, and often have to rely on human service agencies for this type of socialization.

It is this core issue of relationships and friendships that must be addressed by disability agencies and advocates.  It is clear that specialty programs designed for kids with disabilities is not what these families really want.  They want what any other family does for their children - that they are naturally a part of the community, and have the diverse social capital that reflects our culture.

I have learned so much from my experience with "Partners in Policymaking," but the key element, a sensitivity to the importance of relationships, continues to be an area we all need to focus on.  If you are a family member reading this blog, and your child does not have a disability, encourage them to be open to their peers with disabilities and extend out to them.  Relationships are always a 2-way street.

Caregiver Magic

All of my career I have provided direct caregiving to folks with disabilities.  In the early years (1972) we worked hard to get folks with significant disabilities out into the community. In these pre-ADA days, and especially in an inaccessible and hilly city such as Pittsburgh, a lot of this care giving support was lifting, carrying, and transferring folks into inaccessible places just to be a part of the mix.

As accessibility improved with more ramps, lifts, and accomodation, caregiving supports shifted to the attendant supports of helping people in bathrooms, being able to eat, and other personal care. I remember travelling by air with a friend who had cerebral palsy to a conference. The flight was delayed so they offered us free drinks, and before you knew it, the 2 of us waltzed up to the bathroom for the inevitable. Imagine doing personal care in an airplane bathroom that hardly holds one person!

Later, when my dad began to struggle with Parkinson's disease, our family worked hard to keep him engaged and active in the community. Taking care of dad so he could be an active part of our community became a key part to his dignity. There is no question that caregiving, both physical and personal is a key ingredient to inclusion. For some people, the only way they can engage in the community is through caregivers. Indeed, an entire category of direct support professionals along with countless family caregivers play an essential role in the inclusion process.

I have always been aware of this, but recently my sensitivity to the caregiver, care receiver relationship has been seriously heightened.  Just a couple days ago I underwent a total hip-joint replacement and as I write this blog, I am fully dependent on caregivers. I needed assistance for the most basic needs, and although I am on the mend, and will hopefully regain strength, dexterity and ability, this experience has been incredibly humbling. It has given me a new appreciation for what it feels like on the other side. 

I know from experience that providing care can be exhausting. I have lived it for the past 45 years of my career and life.  Now, however, I know how exhausting, frustrating, and unpredictable being the recipient of care can be.  It is a good and important sensitivity. In a way, a silver lining to the struggle and pain this experience has brought to me.

So, if you are a direct support professional, or friend/family caregiver, or, if you are a person who relies on caregiving to engage with your community, try to remain sensitive to this critical symbiosis.  Community inclusion does not happen without caregivers, and community doesn't really benefit until all people are present to engage.