Call Me Al Podcast - Season 2, Episode 5 - John Murphy

Al interviews John Murphy. John works at Disability Rights Nebraska, which is the designated Protection and Advocacy organization.  Disability Rights provides consultation, training and technical assistance to the boards and coordinators of the five independent Citizen Advocacy offices in Nebraska.  Citizen Advocacy is a form of advocacy that was created by Dr. Wolf Wolfensberger.  The world’s first Citizen Advocacy program was started in Lincoln in 1970.  Citizen advocacy is a relationship-based form of advocacy and protection that builds long lasting relationships between ordinary citizens, who are unpaid and independent of the human service system, and people with an intellectual or developmental disability.  Citizen advocates are asked to make a commitment to representing their partner's rights and interests as if they were their own.  A citizen advocate may assume one or more advocacy roles, some of which may last for life.  The role of the Citizen Advocacy program is to make the introduction and then support the citizen advocate in the relationship.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Call Me Al Podcast - Season 2, Episode 4 - David Isitt

Al interviews David Isitt. David Isitt is the Founder of Better Connected in Queensland, Australia.

David has witnessed too many families feeling isolated, tired and often overwhelmed while the complex needs within their family remain unmet. The traditional support system, can at times, lack the understanding and resources to support people with complex needs. This leaves families in dire situations with little control or support, not only from professional support services but often also from family and friends. Being in this disconnected situation damages wellbeing and negatively impacts the ability to move forward in positive steps towards a good life.

Better Connected was established to counteract these situations, to walk beside you, to listen and provide support and guidance.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Call Me Al Podcast - Season 2, Episode 3 - Dori Ortman

Al sits down with Dori Ortman. Currently, Dori serves as Family Faculty at LEND (Leadership Education in Neuro/Developmental Disabilities) of Pittsburgh, a program affiliated with the University of Pittsburgh and Children’s Hospital of Pittsburgh of UPMC. She is also LEND’s Family and Self-Advocacy Training Director and Clinic Coordinator. In addition to her roles at LEND, Dori is a Crisis Counselor with Crisis Trends, Inc. and the administrator of Special Needs C.A.R.E., a private online group providing Community, Advocacy, Resources, and Education to its members. Members include parents, caregivers, siblings, and other family members of children, adolescents, and young adults with special needs.

Dori's career in program management began nearly 20 years ago. After encountering a series of personal experiences related to caring for individuals with special health care needs, she began to focus on working and training specifically in the field of developmental disabilities. She has since completed countless hours of continuing education related to disability services, including an intensive, proficiency-based leadership program through the Institute on Disabilities at Temple University.  

Throughout the course of her career, Dori has developed a multitude of educational materials on topics such as inclusive recreation and education, increasing interactions between children of varying abilities, and more. These materials have been widely used in trainings and conferences, classroom settings, handbooks, and other venues imparting skills and knowledge necessary to work with and include children with disabilities in a variety of settings. 

She has also authored and received multiple local and national grants focused on her efforts to provide appropriate training and assistance to families, schools, and community organizations to maximize the potential of children with disabilities. 

Additionally, Dori regularly conducts parent workshops and networking events and serves as a consultant to families and school districts. She has been a featured speaker at conferences on the local, statewide, and national level. She provides both a professional and parental perspective on disability. 

Dori's passion is working with children with diverse abilities and their families to empower them to strive for success in all areas of life.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Call Me Al Podcast - Season 2, Episode 2 - Dr. Keenan Wellar

Al sits down with Keenan Wellar. Keenan Wellar co-founded the LiveWorkPlay organization in 1995, and has served as the Co-Leader and Director of Communications since 1997. LiveWorkPlay helps the community welcome people with intellectual disabilities to live, work, and play as valued citizens. From a startup with just two staff, LiveWorkPlay has grown to a team of 25 with over 150 volunteers and more than 200 community partners. Keenan’s calling to this work started with a happy accident, as he revealed at a 2014 conference panel of the Association for Fundraising Professionals.

Mr. Wellar has undergraduate degrees in history and education from uOttawa, is a certified Ontario teacher, and completed a Masters of Applied Linguistics and Discourse studies at Carleton University. He holds a Professional Certificate in Non-Profit Marketing from the Sprott School of Business and is a BoardSource Certified Governance Trainer. In 2018 he became a Core Gift Master Facilitator.

Keenan has authored articles in numerous journals, mainly on topics related to non-profit governance and in 2018 became a regular contributor to Nonprofit Quarterly.

In his personal life, he is an enthusiastic Ottawa RedBlacks football fan, a passion he shares with his wife Julie Kingstone, along with a love for kayaking and photography.

Keenan and Julie are also co-owners of Wellstone Leadership Services Incorporated, providing coaching and consulting services to the non-profit community.

Call Me Al Podcast - Season 2, Episode 1 - Dr. Janet Williams

Al sits down with Dr. Janet Williams. Dr. Janet Williams is the founder of Minds Matter LLC and has dedicated her life to working with individuals with brain injury since 1982. She is dedicated to finding ways for people with brain injuries to become as independent as possible. She is co-editor of Head Injury: A Family Matter (1991) and Children with Acquired Brain Injury: Educating and Supporting Families (1996). Dr. Williams has also published many journal articles and presents nationally and internationally on a variety of topics related to disability. In addition to academic work, she has traveled to 48 states in the United States, Canada, Norway, Denmark, the Netherlands, Germany, Italy and India on study visits researching rehabilitation systems for people with brain injuries. The services of Minds Matter LLC are designed from the best of what Dr. Williams has researched and witnessed. She earned her Bachelor’s Degree in Social Work from Providence College, her Master’s Degree in Social Work from Boston College and her PhD from the University of Kansas in Family Studies and Disability.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Call Me Al Podcast - Episode 6 - Loneliness

Al sits down with Jamie Curran, Community Living Mississauga and Jeff Fromknecht, Side Project Inc. to discuss the impact that loneliness and social isolation has on their own lives and the lives of those we serve. Al also discusses the findings from a recent survey looking at the social connections of families of children with disabilities. Jamie discusses CLM’s efforts at helping parents connect.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Call Me Al Podcast - Episode 5 - Joyce Steel

Al sits down with Joyce Steel Director of Family Advocacy at Starbridge Inc. supporting families in Rochester, New York. Joyce talks about her development as an advocate for inclusion that started with the birth of her son Adam. Al and Joyce talk about her work as an advocate and mother, what kinds of things are working, where are the challenges, and what new things lay ahead.

For more interviews subscribe to the Call Me Podcast on itunes: https://itunes.apple.com/us/podcast/call-me-al/id1441852995

Defining Community

Community is defined as a network of people who regularly come together for some common cause or celebration

Community is defined as “a network of people who regularly come together for some common cause or celebration (Condeluci, 2002).” A community is not necessarily geographic, although geography can define certain communities. To come to an understanding of community is to appreciate that community is based on the relationships that form, not on the space utilized. In fact, space can be an abstract notion when it comes to understanding community. Think about the global community created by the Internet. These communities are not bound by geography, but rather are relationships formed in cyberspace.

The term “community” is the blending of the prefix “com,” which means “with,” and the root word “unity,” which means togetherness and connectedness. The notion of being ‘with unity” is a good way to think about the concept of community. When people come together for the sake of a unified position of theme, you have community.

Think now about communities in your life. All of us have a number of groups that meet the definition of community. Our families, for example, are a good framework for understanding community. These are people with whom we spend a great deal of time on common themes.

To help us just a bit more in understanding community, consider another definition of community from Robert Bellah (1985): “A community is a group of people who are socially interdependent, who participate together in discussion and production, and who share certain practices that both define the community and are nurtured by it.” Both of these definitions give us a solid start in thinking about communities in our lives.

Using the definitions of community, spend some time now identifying these groups in your life. 

DOING IT THE NATURAL WAY

“People who live in isolation are more likely to die than someone who was well connected to lots of people and smoked heavily.” Darcy Elks, Melbourne 2010.

Isolation is one of the most profound problems of our lives and more often than not it falls beneath general society’s radar. We meet roughly 200 people before we click with 1, so as person who is socially disadvantaged that number of people you may need to meet could double. Makes you think how hard we all must try to help people in our lives to have proper relationships that then could lead to friendship.

We probably take making friends for granted and forget why they are so important, think about how many great relationships you have and then imagine life without ever meeting that person! Pretty tough i imagine, it certainly was for me.

Having a variety of good relationships is all part of “living a good life” and opens up all sorts of opportunities. Getting a job, for instance is a lot easier, as the old adage goes, ITS NOT WHAT YOU KNOW BUT WHO YOU KNOW.

Relationships can help people with emotional and physical safety and nurture self esteem, and as we know “people keep people safe”.

We all understand that relationships and friendships are very important to us all regardless of our abilities but what help could we be to someone who finds making new friends more difficult.

We have to understand that some approaches don’t always work, if a person has an intellectual disability does that mean that they will be friends with everyone in the day facility they find themselves in, of course not. I’m a Pom and i don’t like all Poms.

We need to bring people together naturally, find people with the same interests, beliefs and concerns. All people have gifts to offer and if you can meet people in a typical way, if then a relationship forms then it is better for all involved.

Recruitment of volunteers to be friends is not a positive approach to long term friendship or offering reward for being a “friend”. We need to identify a natural pathway and assist people to walk along it, taking the ups and downs as they come. Protecting someone who is vulnerable all the time won’t help in the long term, as we know life is sometimes hard and not ever seeing that wouldn’t make the good times seem so much better. All relationships are risky as many people know, the divorce rate speaks for itself but if you have lots of them then the ones that fall by the way side are replaced by stronger ones, we hope.

In identifying natural pathways, i feel that “One person-One place has the most promise. Being in a group as an individual may be a better avenue for nurturing natural and meaningful relationships. It will give the person more ability to shine and show off their strengths and talents. It is also an opportunity to meet others with similar interests and contribute within a valued social role.

A valued role creates a positive image and conveys to all that you have a place in society and others will see you in a positive way which can only be a good thing when trying to engage in new friendships. Having a negative role or perception only furthers other people’s beliefs, rightly or wrongly that a person who needs a little more effort to start a relationship might just fall into the too hard basket.

Encouraging people to seek out like minded others is a great way to start on building a natural relationship, but remember we are not there to invent new passions, just help the person build on what has been there all the time. Finding new interests is an added bonus on the journey and finding new people to help walk down the path is very important as long as they arrive there naturally.

Francis Bacon once wrote” THE WORST SOLITUDE IS TO BE DESTITUTE OF SINCERE FRIENDSHIP” 

 

Ian Hulse.                                                                                                                                   Mamre Association, Inc.                                                                                                     Brisbane, Australia

"He just likes to be alone...”

We’ve all heard it on our journey to promote social capital.  “He just likes to be alone.” “She pushes all her friends away.”  Promoting social capital is challenging and sometimes we get stumped.  Often, it’s those who have Autism or are dually diagnosed with a mental illness.  One diagnosis we have found particularly challenging is Borderline Personality disorder.  Relational trauma and a lack of secure attachment early in life often drive this diagnosis, so relationships can pose a threat.  That’s why I was particularly inspired by this story.

My daughter was working on a homework assignment when she found the video.  She knows I enjoy all kinds of art, and this was a medium neither of us had seen before:  light art photography. I was intrigued and captivated not only by the art, but how the video told the greater story of this man’s life.  Finding his passion had been a pivotal, defining moment for him, but even greater was finding a community of like-minded folks with whom to share his passion.  One approach the Interdependence Network has explored for building relationships is the 4-step process of 1) identifying a passion, 2) discovering where it’s celebrated in the community, 3) connecting with the gatekeeper in the group, and 4) joining the group.  The twist in this story is that the group was online.  Following a different path toward the same goal, Christopher’s art became the gatekeeper, the commonality that overrode the differences and created connection.  Of the group his says, “I posted my first pictures to Flickr and almost immediately someone from the light junkies group invited me to the group.  And I discovered this amazing community.  They nourished and encouraged and I wouldn’t be here and gotten this far without them and their support.”

As we continue to support people to grow and develop new relationships, I think this story is a great reminder of how powerfully they can impact a life.  I also think it illustrates the need for creativity.  Online communities have their risks, but in this case it met the need for connection without the challenges that face-to-face relationships can pose.  I hope you feel inspired as I did when you watch this beautiful video:  https://www.youtube.com/watch?v=irAXgWjr2Uo

The 4-Step Community Building Process: Step 2 Find the Venue

Step 2: Find the Venue or Connection Point

Once the change agent has identified the positive capacities for inclusion or incorporation, the next critical step is to find the place that the person, idea, or product will relate.  Quite simply, finding the setting where the person, idea, or product might be accepted sets the stage for inclusion and cultural shifting. 

By “venue” or “connection point,” we are referring to the viable marketplace for the person, idea, or product.  With ideas or products the change agent can think in the conventional framework of a marketplace.  That is, if you have developed a product that is best suited for accountants, your potential marketplace would be with the fiscal offices of a corporation or with an accounting firm.  These or similar marketplaces offer the best possibility that your product will be understood and, hopefully, purchased.

With people, the concepts of venue and connection point have equal importance.  If you are looking to find a framework of new friends, you have a much better chance of connection if you take a hobby, passion, or capacity and join up with others who share that same passion.  A good example is the efforts we make with our children when we attempt to broaden their horizon. 

In a more formal way, this step works with agencies that attempt to connect people back to community.  One example from our agency is the story of David.  Al first met David while working years ago at our local county home for the aged.  One of our first efforts was to help David begin to meet people and make new friends.  Using the capacity model portrayed in step 1, we identified a number of things David enjoyed or had an interest in.  One of these passions for David was oldies music.  While at the facility, David listened regularly to oldies music on the radio.  After he moved into his own apartment, we identified an oldies club not far from where he lived.  This venue offered a good starting point for David because he had a natural affinity for the same common theme, which attracted others together.

The secret to step 2 is to find the appropriate venue that matches the interest or positive points of the individual.  In many cases, this is anthropological work.  We know that people gather for all kinds of reasons, but the most powerful reason is to celebrate that which they share.  Finding the matching community for the interest is critical to meeting new friends and, possibly, changing the culture.  In David’s example, finding the oldies club was a direct match to his interest in oldies.  Often we have to look closely, but the process accelerates by asking people who might know.  In David’s situation, we called the local oldies radio station to inquire.  The resources are out there; we just have to find them.    

One powerful strategy in Step 2 is found with the website www.meetup.com.  Some of you reading this book might be familiar with this social networking website, but, if not, it offers a wonderful and easy way to find a community-based venue that matches the interest.  When you log onto meetup.com, you will first be prompted to identify what country you want to search.  As you know, the Internet has created a “global community,” and so there are meetup groups all over the world.  Once you identify the country, you are prompted to identify a postal or zip code.  This allows the meetup search engine to hone directly into your community.

Last, you then have a search bar to enter in a “keyword” that identifies your interest, passion, or affinity.  When you hit the “enter” button, the search engine will display every club, group, or association that is registered with meetup in a geographical order starting with those groups closest to your zip or postal code. If this is not enough, the listings of groups are further developed with information about the groups’ patterns and expectations, and meetup even identifies some club members and offers their email addresses so you can connect electronically.

Now, one caution about step 2 must be addressed when applying the steps of cultural shifting to people, especially newcomers who have been excluded.  The existing members of community may not see or understand the relevance for people who have been traditionally excluded.  For example, people with disabilities have been historically separated from typical populations.  Given this historic sense of congregation, the natural tendency, even for professionals in human services, is to keep these same people congregated.  That is, if we discover in a capacity exploration from step 1, that our friend David loves the oldies, a natural propensity might be to see if there are other people with disabilities who like the oldies and then put them together.  How many times do you see groups of people with disabilities doing the same thing together?  This phenomenon is evident in our stadiums or theaters that have “handicap sections” where all folks with disabilities are herded to watch the game or show.

Even when we find the appropriate natural community venue, the energy to congregate people might unfold.  An experience a few years back drove this home for us.  CLASS was assisting a friend to connect in the community.  Using step 1, we discovered that Jim had an interest in swimming.  To build on this we went to step 2 and explored Jim’s community to find a swimming venue.  We decided on the local YMCA near Jim’s home.  When Jim and Al went to the YMCA to get him a membership and find out more about the swimming options, the membership director pulled Al aside.  Using a soft voice so that Jim wouldn’t hear, he told Al that he could arrange for the agency to have the pool all to itself every other Tuesday evening.  This way we could bring all the handicapped people we like and they could swim together.  Even the YMCA membership director thought about people with disabilities in a congregative manner.

The bold fact of all these experiences is that people gather.  They gather for all kinds of reasons and interests.  For every capacity or passion there is a place that people gather to celebrate these passions.  Once we get over our habits of segregation and congregation we can come to see that these places are ones that offer a wonderful starting point to culture.  In these gathering places we can find the key to cultural shifting and the dispensing of social capital and currency.