Softening Community

In the work we do in helping people build social capital requires both micro and macro strategies. On the micro side we often explore interests and passions with the person looking to engage more. Once we have this information. the next step in the process is to find a matching community setting. That is, if I am looking to build more social capital, the best route is to take an area i am already interested in, say reading for example, and then find a community group, perhaps a book club to connect with.

Of course, actualizing this is a bit more complex, but this is the basic process. Once these 2 steps align, the next actions requires a a bit more macro analysis. For example, once a book club is identified, then we need to analyze what is expected of me to be accepted by the club members. Every community group has expected rituals and patterns that i must appreciate if I want members to accept me.

Last, there has to be some initial introductions, and this is best done by someone already in the book club who has a positive reputation with the other members. We call this person the “gatekeeper.” By their presence with me they are offering a tacit endorsement.

All of these actions are used to soften the existing community in the process. For relationships to manifest, and especially for people who have been left behind, or historically isolated, the community must be tended to. This is called macro change, or having the community adjust to accept the new person.

If you are interested in macro change, take a look at some the other resources on my website,

Social Isolation and Loneliness

I am preparing for a presentation I will be doing in Vancouver BC where we will take a deeper dive into understanding social capital. One issue we will explore is the comparison and contrasting of both social isolation and loneliness as constructs. They are not the same.

Social isolation is a state in which the individual lacks a sense of belonging socially, and lacks engagement with others, has a minimal number of social contacts and are deficient in fulfilling and quality relationships. Folks that are socially isolated are just that - disconnected from social contacts in their lives.

Loneliness is conceptually distinct from social isolation and can occur in the presence and absence of social isolation. Some of the early definitions of loneliness characterized it as a lack of social intimacy, or as a deficiency in social relationships Loneliness is often described as a subjective feeling of isolation, not belonging, or lacking of companionship.

Over the years sociologists have attempted to measure loneliness and although it is moving target, the social scientists at UCLA came up with a 20 item scale in 1968. Over the years they have continued to look at loneliness and most recently, in 2018, a study was done by Cigna Insurance using the UCLA scale. This study discovered that loneliness is on the rise in the US, statistically higher in 2018 than the last national sample done in the early 2000’s..

For my talk in Vancouver, I plan to use the scale to have the audience think more deeply about loneliness and come up with some strategies that could push back on social isolation. If your intrigued, google the UCLA Loneliness Scale and see where you fall.

Who Is Accepted and Who Is Not

A while back, while in Las Vegas, my wife Liz and I stopped in a great shop in one of the strip hotels called “Eataly.” It is a wonderful multifaceted festival of shops, and restaurants, with stations for meats and cheeses, all with a focus on Italian culture. We had a wonderful meal and then began to browse the Eataly shops. In one we found specialty tee shirts and ended up buying one that had the Eataly tag line, “Italians Are Everywhere.” The script is on the top and bottom of the front of the shirt with a classic Italian image of of a hand, with the thumb touching the index and middle finger. It is a great shirt and I have worn it now a couple of times getting interesting, positive reactions.

With some of the growing anti-immigration rhetoric today in America however, this shirt has made me think. I wonder how people would react if the shirt said “Jews Are Everywhere,” or “Mexicans Are Everywhere,” or “African Americans Are Everywhere.” Would there be a backlash? Would people react in positive or negative ways? Why is it that one group of people might be accepted, even with a silly Tee shirt saying, and another group of people vilified, or devalued.

In the end, this blog focuses on inclusive behaviors and hospitality of the greater culture towards uniqueness. If our culture begins to skew towards separation or superiority then clearly inclusion and full community engagement becomes more and more difficult. There is no question that the polarization and separation rhetoric we hear today can be at the root of reason why some sayings on tee shirts bring smiles, and others might cause fears.

Stress and Time

When I retired this past January (2019) I wasn’t sure what to expect. As far back as I can remember I have worked, and after spending some 47 years with my agency, CLASS, the regimen of working had been deeply embedded in my psyche. Of course, I knew I would always stay busy, but retirement challenged this notion, and I have to admit, made we wonder about the prospects.

Now, some 8 months into “retirement,” I have to tell you that it has been one of the best things I have ever done - for a number of reasons.

First, I have been amazed by the reduction of stress. In fact, when I was working I never thought much about stress. Of course I knew that aspects of my job were stressful, but I always found ways to deal with that stress that seemed to make it manageable. Be it exercise, or meditation or conscious efforts to relax, I thought that I had things covered. It wasn’t until I retired however, that I began to realize the extent and impact of the stress. It wasn’t just the work-related stress, but even the traffic jams while driving added up. Clearly I was under significant stress that I never really accounted for.

The other key realization is the importance of time. Certainly the older you get the more time becomes a premium. How we use our time, who we spend time with, reflections on how much time we might have, in fact the quality of how we manage our time all become important topics. Working full time drives most of our time in that direction. We are accountable for job-related outcomes and these activities take time.

In retirement however, we find that we are more fully in control of our time. Rather that being committed to a task or assignment that happens when we are working, in retirement we become empowered by time. We can choose what we want to do and with whom……And the older we get the more selective we should be about how we use this time.

So whether you are working now or not, I hope you can think about these 2 issues - stress and time. These issues can rob you of freedoms, and if not managed effectively, deplete your essence. They (stress and time) need to be respected for what they are - critical to health and happiness!

The Music We Make

Music is an amazing elixir that touches all of us in some way. It creates bridges between people and can often be the first steps in connecting with others. It is so deeply woven into our lives and psyche that it can be said to define our humanness.

For many of us a song or tune can take you back to another place in time - a haunting reminder of both the good times and/or bad. In fact some psychologists suggest that music might be hardwired and have a dramatic effect on how we see and react to the world around us.

Most of us have had music introduced to us as infants, with the loving humming or singing of soothing childhood songs. As we became more socialized, singing played a key role in our early preschool experiences. As youngsters in school we began to become more discerning about types of music, or styles we found resonating; and most of us had some type of formal music education in either learning an instrument, or taking music classes. Certainly music is deeply integral to our religious experiences and it is hard to even fathom formal church services without music.

I say all this because my own music path has had a recent rejuvenation. Coming from a musical family I have always been surrounded by music. When I reached middle school I took up the clarinet and then the baritone horn. I became a part of the high school band and then joined in with some friends and we started our own group where i played the bass. These early years were great and not only did we have good times making music for others to enjoy, but we earned some decent money as kids.

In college and graduate school, however, I just did not have the time for music and pursued a path in psychology and human services. Certainly all of my musical experiences help round me out as a person, but actually making music fell by the wayside. My time was consumed by by career and then by my growing family.

Then, a childhood friend, one of the guys that had actually formed the group we had as kids, retired from a long and distinguished career as a musician and educator and returned to Pittsburgh. He called me and said, “we’re getting the band back together!” And with mostly his musical genius we formed the “DooWop Doctors,” a live 2-man band, playing the music from our youth.

This turn of events has been amazing, and now the music we are making is not only entertaining people again, but is a catalyst for raising money for charitable causes. In a way, a type of musical full circle.

So check us out at . More, think about music in your life and how it has impacted you and your family. The music we make defines us and contributes to our humanness - so find time to make music, and help your life fulfill.

The Change Process

In 2015 I published a book titled, “The Macro Change Handbook.” It was a retrospective look at the change process, mostly filtered through experiences that we had in advocating for cultural changes for folks with disabilities. In it, I looked closely at the change process.

Change is often thought of as going from one point to another. Clearly, it can be physical as well as mental. We can change our scene by traveling from one place to another, or change our mental model from one paradigm to another. We can change our framework or disposition from one perspective to another without moving from the spot we are in. We can change our attitude about something even if the event remains the same.

Change can be both planned or unplanned. With unplanned change, the circumstances surrounding the change are outside our control. Things happen to such an extent that the change agent has little or no influence. These unplanned situations are difficult because often the person was not planning for something new, yet is forced into a new direction.

Planned change is more the focus of the advocate and the change agent has a degree of control or at least has influence over the decision. Planned change presents an opportunity for the change agent to be consider and adopt some actions that might guide or influence the change into a chosen direction.

We can also present a futuristic look at something, but the change suggested might not be possible due to the limits on technology or applications. Jules Vern suggested many changed images in his writings in the 1800’s yet we did not have the scientific details to manifest his visions. Indeed, the computer was imagined in 1837 by Ada Byron, and was written about in her diary in a haunting way very applicable to how we know computers today. Yet, it was not until 1942 when the first computer, the size of a large room, was actually built.

Change is inevitable, yet, as creatures of habit, we often resist change. So where do you stand on the topic of change?

Social Capital and Health

Over the past 25 years, researchers have been looking closely at the potency of social capital on health and happiness. Study after study has concluded that the more social capital an individual has, the fewer sick days and sad days he or she experiences. A 1979 study by Berkman and Syme, done in Alameda County, CA, found that healthy adults who were more socially integrated with deeper forms of social capital, such as husbands/wives/partners, as well as with close friends and associates, were more likely to still be living nine years post-study than others who were less connected.

Twenty-five years later (2005), Berkman and Glass found that when there is more social capital present, there is greater survival rate from heart attacks, less risk for cancer recurrence, less depression/anxiety, and less severe cognitive decline with aging.

Similar studies over the same time-frames found that social capital predicts who is resistant to illness. Going even further, the literature suggests social isolation (the lack of social capital) actually causes illness. To this very same point, Dr. Sheldon Cohen, of CMU in Pittsburgh, has examined the effects of social capital on health - and his findings are clear - social capital actually prevents illness! This was documented in a series of carefully controlled experiments where he exposed subjects to the virus that causes the common cold. The study demonstrated that those with more social capital, in terms of supported relationships and sociability, were significantly less likely to catch a cold.

So as we struggle to promote better health, the lesson seems simple - the more social capital a person has the more likely they are to be healthy. What do you think?

Diversity of Friendship

In social capital theory similarities between people is the elixir for initiating a relationship. That is, every connection in our lives had some initiation of similarity in getting the relationship rolling. Think about your friends today - and I know you can track back to how that relationship started, and if you reflect a little deeper you will find the similarity that got the ball rolling.

The interesting notion here is however, that for all the similarities you have, every relationship also presents differences. And these differences can be sharp and sometimes off-setting. One powerful example that really makes this case might be found in the election of Donald Trump as President of the United States. All of us have either friends or family members that differ on how they view Donald Trump. This divide has tested many relationships and may have even ended long term connections.

Yet the differences we have from our social capital are important for personal growth. That is, when we discover differences with our friends it pushes us to deal with it - to try to understand the reasons behind the difference, and to come to accept these differences if we want to maintain the connections. In a way, these differences or diversity that we have with people are then instructive. They broaden us and can make us bigger people.

Or we can just walk away, and through our narrowness, lose an important connection in our life. So, where do you stand on tolerating your friends differences?

Full Participation is Messy

I am just returning from some strategic planning that we did in Nebraska.  Disability advocates came together from 3 unique agencies to explore how their collective actions can make inclusion more of a reality in that good state and I was hired to play a coordinating role.

It is important to know that NE has been an innovator in the challenge of community inclusion for folks with disabilities dating back to the late 60’s when Wolf Wolfensberger and associates initiated the early versions of “nomalization,” that is known today as “Social Role Valorization.”  Early efforts of deinstitutionalization and community involvement were pioneered in Nebraska.

The work we did at this retreat started with some exploration of recent outcomes in a comparison to the national core indicators.  These indicators showed that, although some advances have occurred in comparing Nebraska to the rest of the country, there are still wide gaps for families and individuals with disabilities that need to be addressed.  Top among these challenges are transportation issues, employment (meaningful things to do) and true relationship voids.

Using a World Cafe learning model, the participants at the retreat went to work examining things that should, could, and then will be addressed over the next year.  The Cafe model sets the table so that everyone, regardless of background, experience or station, weigh in and participate in the dialogue. 

In a way, this is messy work.  Often with planning, the leader of the group comes forward with ideas and holds their fellow colleagues accountable in carrying things out.  Most of us are used to this model, and we usually just follow someone else’s lead.

But when we practice inclusive planning, as in the World Cafe model, everyone is expected to offer thoughts and perspectives - and herein we find the messiness.  Yet, in the end, it is the best way of planning as the ownership of the direction is shared, often allowing more people to have a vested interest in the outcomes.

So the next time you are doing any planning, work hard to make it inclusive.  The challenges are greater in the beginning, but the outcomes will be so much stronger in the end.

Timeless Values

In my career as a disability advocate, I have been doing presentations and workshops at conferences since 1980.  In these 40 years, I have done thousands of keynotes and presentations all around the world.  This has been incredibly satisfying and deeply instructive, where I feel I have learned so much more that I have given.

For many of these talks, the conference planners have done evaluations and will often send these to me so I can learn from the assessments and continually improve.  I love to get these reviews and read them over thoughtfully.

So, I recently returned from a major conference in central PA where I did the keynote on social capital and macro change, and was excited to get the program evaluations a few weeks later.  Most of the responses were very positive with accolades given to both the content as well as style of my talk.  But there was one response that stated: “I have heard Dr. Condeluci present before, 6 or 7 years ago, and although his power point has changed a bit, his talk was almost exactly the same.”  I wasn’t sure how to take this feedback and initially thought it was deeply critical, as if I have been stagnant and hadn’t grown in my thesis and perspective.

But when I shared this feedback with a friend, his reaction was: “what do you expect, in spite of continued poor outcomes, services for folks with disabilities are essentially still the same.”

Certainly I don’t want to be stale, but in a way, the basic values of community and relationships, which are at the core of my thesis of community engagement and macro change, are timeless - and repetition may actually be a good thing - until things actually change.

We are Human Beings, not Human Doings

A friend of mine in Australia recently sent me an interesting article suggesting that “Right Brain” functioning begins to develop first in children - usually starting at age 3. It is not until the child is 6 or 7 that the “Left Brain” aspects begin to unfold.

Now Right/Left brain functioning has been an area of interest to psychologists and neurologists for a number of years. It is commonly accepted that the left side of our brains are very structured focusing in on language, literacy, and analytical skills. It is very calculating, logical, and statistical, accounting for most of our planning and activities that we do.

The right side of our brain, the one that scientists feels develop first, is much more intuitive and macroscopic. It is the part of the brain that houses empathy, creativity, imagination, wonder, dreaming and being.

Indeed, the great thinkers have articulated this without a whole lot of L/R research. Einstein famously said: “Logic will get you from A to B, but imagination will get you everywhere.”

I have been interested in L/R thinking for some time and often will do some short and simple exercises to help people think about their own propensities. I usually tie these into the notion of the “gatekeeper” in better understanding people who will take a bit more social risk - especially in supporting folks with disabilities in building social capital.

The article my friend sent seemed to suggest that, given the newest research maintaining that our right side develops first, might be a clue about the more important aspects of life. After all, we are referred to as “Human Beings,” not “Human Doings.” I love that inference.

A Job, a House, a Ride, and a Friend

I do a fair amount of retreats with family members who have a son/daughter, or grandchild with a disability. These retreats focus in on how human service programs can be more helpful to them.

Most of the time when I do this type of session I start by asking folks what they want for their child - what would be helpful, or what was missing from their child’s life. There are a lot of reactions to this question, but by and large, I can categorize these wishes into five categories. One is the higher order wishes such as health, happiness, safety and security.

The other are more tangible and they always include, getting a job (or having meaningful things to do), a place to live, adequate transportation, and lots of friendships. In fact, families report that their child is often lonely, and socially isolated, and this request (friendships) often gets the most votes of all.

In a way, these wishes from families who have children with disabilities, are really ones we all have for our children. All these things, safety, happiness, jobs, homes, rides and friends, are things we all want, not just for our children, but for ourselves as well. They are universal aspects of life.

And I believe, at the core of these wishes is just one variable - friendships. Social capital theory shows that most of the good things in life are tied to our relationships. So if you have some connection to human services, look at the things your agency does, and make sure that relationship building is something you offer to these families. If not, consider how you can add this to the mix.

The more people are connected, the better their lives. Think about it.

Charity versus Social Justice

I was invited to speak recently at a statewide conference in another state and prior to my introduction a state political leader came forward to give the supporting organization a proclamation of recognition. Now I have seen this happen before and in fact, have had my own organization, CLASS so recognized in the past, so this wasn’t strange

What was curious however, was that the politician who read the proclamation prefaced his remarks by quoting the bible and talking about how special we staff are to do the work we do, and how wonderful we are for committing ourselves to service to these folks with disabilities. And this kind of charitable reference happens often, both formally and informally. I still hear from friends, and especially those not in the field, how special I am for the work I do - as if we are like Mother Theresa for choosing to work with folks who have disabilities.

Now this kind of perspective clearly creates a downward image. It comes from a pity orientation and holds those of us who do disability support work as being wonderful for our commitment to these poor (and unfortunate) people. And to challenge this approach is delicate as it might make us look ungrateful.

Still, this thinking must be combated and for me, I try to shift the conversation from charity to social justice. That is, the agenda is not to feel bad for the people we serve, but to point out the social injustices generally faced by people with disabilities. In this shift we move the thinking from micro (its about the individual) to macro (its about the culture and society). The more we change the culture, the more we create parity for everyone. Think about it.

A Community of Practice

A number of years ago, some fellow advocates and I, all interested in Macro Change, banded together and launched the “Interdependence Network” as an online community of practice. As we saw it then, and even more intent now, what is necessary for a more inclusive and receptive community, is not more services to people with disabilities, but more focus on changing the attitudes and perceptions of our communities today.

That is, most programs and services for people with disabilities continue to be silo-oriented and congregate in nature. These programs gather folks with disabilities in an effort to help them get more involved in community, but get stuck in the process. The Interdependence Network was founded to offer ideas, strategies, and recommendations to service providers, families, self-advocates and any other interested advocates. And as a virtual, world wide community of practice, it is designed to solicit responses from an international audience.

More recently, the IN has launched a podcast we dubbed, “Call Me Al,” which allows me to interview folks from all around the world, to share ideas, thoughts, and recommendations on this formidable challenge.

In Macro Change, there are no easy answers; still, we are convinced that the route to inclusion is found in the building of relationships with everyday people. to this extent, understanding social capital becomes seminal to the process.

So, if any of this interests you, take a look at the IN website, and join in. More, take a listen to “Call Me Al” podcast found at our website or at iTunes. Changing community takes a concerted effort and we need you in the process.

The Spirit of Inclusion

I am working on a new book with my daughter, Gianna, and her fiance, Marc Lewis. This book is an “on the ground” look at educational inclusion and the critical variable of social capital. Both Gianna and Marc are teachers, deeply embedded in the educational inclusion agenda, and passionate about social connections for their students.

Our overall thesis is that to really achieve a greater sense of inclusion, for all children in educational venues, is directly linked to social connections, or social capital. In fact, life success for anyone, is deeply tied to social capital and community connections. We are postulating that if children with and without disabilities build social relationships in school, everyone will do better. As simple as this sounds, however, it is incredibly challenging to realize.

In our book we are looking at this and offering some solid insights, but for relationships to truly form, there must be a “spirit of inclusion” present in the school. What we mean by this is simple - if the school, and its leadership, are not committed to finding ways and means to meaningful social capital for their students, then all the creative ideas and strategies on this topic won’t be worth a hill of beans.

And this “spirit of inclusion” is really not about education, or found in an educational strategy. Rather, it must be embraced as a human rights and social justice issue. That is, it should be seen as a right, not a privileged, to have the opportunity to building relationships, and public systems, like schools, have an obligation to facilitate these opportunities. This social connection agenda should be as important as any academic format or curriculum.

We are doing some solid national and international research for this book, and think this work will add to the resource pool on inclusion. Still we know, that the “spirit of inclusion” is at the core of real social change and invite you to think more about this in your own work

New Zealand and Social Action

I know that it is a small country, tucked away in the lower South Pacific, but I have to weigh in on how taken I am with the social responsiveness, and political courage shown by the impressive country of New Zealand. Just days after the brutal slaying of 54 people in their place of worship, the country leadership stepped up to show bipartisan support for a ban on assault weapons. This happened in a country that has a similar love affair with guns as we do in the United States. I am impressed.

When the Sandy Hook massacre unfolded a couple years back, there was some banal rhetoric from our political leaders, but absolutely no action, in any way, to address the madness. There was the usual blaming of mental illness for the atrocity, and then they did nothing for mental health intervention or to consider banning weapons that have absolutely no sporting value. Pure cowardice on both sides of the aisle - and an embarrassing display of how lobbies can control our government.

Yet tiny New Zealand, days after an attack, go into action. Not only is this impressive (and instructive) but they also have a strong history of positive relationships with indigenous populations; something also lacking in the United States. The Maori tribe, the indigenous people of New Zealand, are a gentle people both warm and hospitable. I learned this first hand when I was invited to Auckland a couple years back to keynote an “Imagine Better” conference. Before the conference started we were welcomed by the local Maori tribal leaders with a traditional “Hongi” greeting. We processed to the tribal delegation and touched noses taking a deep breath. This showed we were breathing the same air and signaled that we were formally welcomed in their space.

Sometimes things that are simple are just that - simple. New Zealand is a country, and culture, we can all stand to learn from.

The Dark Side of Social Capital

I was invited to participate in a Convocation at the University of Northern Colorado in the Rehabilitation Department. They asked me to focus my remarks around ethics and while preparing I found an article that focused on the dark side of social capital. Now we know that social capital, or relationships in our lives, promote amazing positive effects among people. In fact, the ethical ramifications have been clearly documented by sociologists.

But the article I found suggested that along with the positive effects, social capital can have a dark side. Top among them is the exclusion that can happen to people not considered members of the tribe. That is, the strong bonding that can happen between like people, can also result in painful exclusion of others. This can also lead to distrust, lack of cooperation and intolerance.

In our current era where nationalism and anti-immigration policies are promoted certainly can bait the darker side of social capital. In fact, the Southern Poverty Law Center has documented the rise of hate groups, and we are seeing more and more assaults on ethnic, religious, and immigrant groups. Quite simply, the bonding nature of some things can lead to a real sense of exclusion of others.

To this end, social capital alone will not create greater ethical behaviors. Rather, the critical values that are associated with ethics are equally important in the relationship perspective. We must come to realize that social capital is so much more potent when it is coupled with strong inclusion values.

Friends and Family

Often, when we talk about social capital, the best reference point is to think about friends and family.  In fact, a common approach for people to understand the essence of social capital is to identify our friends and family within the context of community.  That is, we ask people to think about the various communities they participate in and to identify the people they are acquainted with, people they are friends with then finally, identify those that they deeply trust in that community.  This type of sociogram paints a portrait of ones social capital and is a good way to understand this human dynamic.  It creates a nice template to study or actually measure our relationships. 

In thinking about social capital it is interesting to consider friends and family.  Our friends are often freely chosen and they represent our intentional social capital; that is, these are the people that we feel fit into some frame of our lives.  Through regularity and similarity, we come to develop these connections and can even elevate some people to “best friend” status. These relationships take work , however and if we find these friends beginning to drift from the things we feel are important, the friendship often can easily decline or end.

Family relationships are more tedious.  We are thrust together with these people during family events and the key similarity is often the family blood we share.  If they begin to drift, or a rift unfolds, these relationships are harder to adjust or end.  Even if we feel distant, our overall family ties keep these folks in our orbit.  In a way, you have to work harder with family than with friends.  If a family relationship goes sour, you must work harder to right the ship.  With non-blood connections, if things go south it is fairly easy to just walk away. 

All social capital makes life more interesting.  In fact, our social capital influences our health, happiness, self confidence, achievement, and even our life expectancy.  More relationships lessen stress and help us resolve problems and issues that arise.  Yet, the maintenance and nurturing of our social capital can be very different between our family and our friends.

As the cliche goes, you can choose your friends, but can’t chose your family!

San Miguel de Allende - Hope for a Better World

I am writing this blog from from a Casa terrace in the beautiful Mexican town of San Miguel de Allende. The town is situated in the geographic center of Mexico and we are here for the nuptials of our son Santino and his fiance, Valentina. They met 10 years ago in Paris, while both in college, and fell in love. During their relationship, in the many countries they have visited, San Miguel stood out and they decided to have their wedding here.

It is my high honor to officiate their wedding and this is the first time we have gotten to meet Valentina’s beautiful family. They hail from Columbia and we have had a wonderful time getting to know them; in itself a wonderful turn of events, but this blog is really about Santino and Valentina, who are truly citizens of the world.

Often you hear horror stories about millennial’s and how they are selfish and often non-committal. Certainly this is true for some people; and in fact, can be true for people in all generations. Yet, this is not the case for Santino and Valentina. They are hard working in their respective careers, and deeply inquisitive about people and cultures. In their time together they have visited over 30 different countries around the world and have amassed a penchant for curiosity. They embrace a respect for diversity and truly see a world where people can love and respect each other.

In this conservative era of nationalism and tribalism, Santino and Valentina are models for another spirit - one of human kinship regardless of difference. As the torch gets passed to the next generation, Santino, Valentina, and their many friends that have gathered in San Miguel, will demand a more open perspective. One of brotherhood and respect, regardless of any differences people might have. In their world we won’t be divided by walls and fears, but aligned by a deep-seeded respect and appreciation for all.

This weekend has renewed my hope for a better world.

Partners in Policy-Making: An Initiative that Works

In my over 50 years as a professional disability advocate, I have been involved in more initiatives than I can count.  Many of these I either help developed and many others that were developed by other colleagues and i was invited to play a role. 

All of these initiatives have had an impact, but some were (and are) more powerful than others.  We know that parity for individuals with disabilities and their families is a long hard climb and that we still have a long way to go, but there is one initiative, that was conceived by the Governor’s Council on Developmental Disabilities in MN, that has stood the test of time and continues to make an incredible impact - and that is the Partners in Policy-Making effort, developed in 1987.

The PIP initiative has made such an impact because it has been adopted by 35 states and has spread to many international settings.  It is designed to introduce families who have children with disabilities, and self-advocates (individuals experiencing disabilities) to the myriad of programs, projects, and policies that impact the disability experience.

I have had the great pleasure to participate in the PIP programs for many years now, in many states.  In just the last 6 months I have been involved in PIP programs in TX, NM, DE, OK, FL and LA, looking at the importance of understanding community aspects, and the key ingredient of social capital (relationships) in our communities.  In all of these experiences I am so taken by the power and wisdom of the families and self-advocates that I meet.

But at the heart of the potency of this initiative, is the transition that unfolds for the Partners who attend.  Most family members and self-advocates sign up for this free program because they want things better for their son/daughter in the community - in itself a laudable goal.  But over time (the PIP program is usually over 6 to 9 weekends each month), most of these advocates broaden their perspective, and become an advocate for all devalued people.  This shift from micro (an individual perspective), to macro (a community perspective) is so satisfying to see.

Because in the end, a full and inclusive community is about us all - and this is the end lesson of Partners in Policy-making.  So if you are (or know) a family who is experiencing disability, check to see if there is a PIP program in your state.  If not, inquire with your Developmental Disability Council to see if they can develop a program.  It is a disability initiative that works.