Author: Erin Volland

Everybody Needs a Third Place

As adults, we create meaning and belonging for ourselves in a variety of ways. The first place we do that is at home, with the people we live with, our family or roommates. Our second place is at work with our colleagues and collaborators. We serve different roles in our home and work lives, but they both provide meaning and a sense of purpose. If you’re an individual with a disability who requires functional support at home and at work, you may experience your first and second place differently than others do. Your workday hours may be filled with day programs and medical appointments. Your home may not feel particularly home-like. Individuals with disabilities report feeling isolation and loneliness much more than nondisabled adults. Meaning and belonging counteract and balance out those feelings.

When we describe where people with disabilities live and work, we often use terms like setting or facility, instead of home or job. In the long-term care vernacular, settings are places where services are delivered, which means that your role in that place is a recipient of care. While that care may be necessary and essential to maintain health and safety, it can also be stigmatizing and change how you view yourself. Without regular access to an additional space, a “third place,” your whole identity revolves around being a recipient of services in your first and second places. 

A third place is an opportunity to be something more than a person who needs support. It’s a place where you meet people that have a shared interest or passion. It’s a place where you might go for self and community-care. You likely go to this place on a routine day on a regular and consistent basis. If you aren’t able to go at your usual time, someone from the third place may contact you to check on you, or reach out to say they missed you. Depending on your need for social connection, you may have many third places or you may only have one or two. The quality is far more important than the quantity. 

Examples of third places include faith communities, fitness centers, volunteer groups, sports clubs, online communities, special interest groups and more. Meaning and belonging come from a sense of connectedness in a shared activity or interest. We meet people at our third space that we don’t live or work with, and they see a different side of our personality than others do. We may be able to take on roles in a third place that we’re not able to or are comfortable with in our first and second places.

If you have a third place, try imagining how your life would feel without it. If you only went to work and came home everyday, and could only interact with the people directly around you in those environments. Now imagine that some of the people in those environments are only there because they are paid to be there, they don’t always want to be there, and there is a different person in that role multiple times a year. Imagine that you’re not given a choice of who you live or work with, and you’re expected to adapt every time there’s a new person, even if they are rude or unkind to you.

This is the life that many with disabilities are expected to live. They may be placed in a setting where their roommates are selected by someone else. They are given one option for where to go during the day, and they don’t have the choice to stay at home instead. This lack of autonomy and spaces where you can build genuine connections and explore personal interests is what leads to those feelings of isolation and loneliness, negatively impacting a person’s health and well-being. So, let’s remember that everyone needs and deserves to engage in and enjoy a third place. And let’s do what we can to help those in our lives and communities find and access that space, or spaces, where they can be their true selves, grow that vital sense of meaning and belonging, and thrive.

Lessons From Failing Forward

My brother, Jeremy, who has autism, went through a pretty difficult time in his early 20’s. He was hospitalized for several weeks after a period of real instability and difficult transitions. One of the reasons we offer the Moving On workshops at LOV Inc. is because of my real-life experience with my brother when he transitioned to living in his own apartment. His transition was not well-planned or thoughtful, and no one in my family thought about how much support he might need to successfully become independent.

My brother is a little older than me, so I was a college student while this was happening. Things came to a crisis point in August of 2004 when Jeremy landed in a hospital in Madison after his landlord called 911. I was away visiting friends in Ohio when I got the call. My dad was a long haul truck driver and was even further away. My mom lived in Arizona and couldn’t get to Wisconsin, so she asked me to hurry back to Madison and figure out what was happening.

As we pieced things together, a clearer picture formed of what had gone wrong. My parents had underestimated how much this change would destabilize Jeremy and how much support he was going to need on a day-to-day basis to make sure he was taking care of himself. All of Jeremy’s stuff was at his new apartment, but other than his computer, a lot of it was still in boxes, including basic things like towels and dishes.

I felt overwhelmed and alone, so I started contacting anyone and everyone who might be able to help us. I had just taken a class the previous school year in the social work program on developmental disabilities, so I contacted my professor, Don Anderson. Don connected me to so many resources and people who could help, and he also talked me down from thinking I had to become my brother’s guardian in order to help him. This story would have a very different ending if not for Don’s wisdom and guidance.

Jeremy and I talked a lot about his future while he was in the hospital, and how we could address the things that led him to be there. It was an emotional time for both of us, but we agreed that failing at something wasn’t the end of the world if you learned something about how to do better in the future. I called this failing forward, and it practically became our motto over the next few years.

Over 20 years later, I think we are still failing forward. There have been other hospital stays and emergencies. Bad things have happened to Jeremy, but we’ve focused on making sure the same bad thing doesn’t happen twice. Jeremy has also grown and changed in ways that I never thought possible back then. He’s still got the biggest and most forgiving heart. He’s learned from bad experiences and knows his limits and boundaries.

When I reflect back on this time in 2004, I remember a few things very clearly. First, I remember how it felt to have my friends and family show up for me and Jeremy to help us through this, even when they overstepped or pushed too hard. Secondly, I remember the unexpected support I got from the families I worked for as a respite provider. Both families I worked for showed up for me in so many ways during this time, and it was such a comfort to know that they understood the unique challenge of navigating my brother’s care needs. I had never experienced that kind of community of support before, and when LOV Inc. started a few years later, I knew we were on the right path when I saw that sense of community care developing in our group.

– Stefanie Primm, Executive Director

The Foundations of Inclusion

I read a book early in my career called “We Come Bearing Gifts” by Janet Klees. I was also lucky enough to meet Janet and many of the individuals she wrote about in her first book and its sequel “Our Presence Has Roots.” Janet is a strong advocate for community inclusion for adults with disabilities, and has a great deal of experience with organizing families of people with disabilities to dream big regarding their futures. “We Come Bearing Gifts” helped me internalize the reality that everyone has something to contribute and that a community will be stronger for mobilizing the strengths of each member. 

In the book, Janet also talks about normalization, an approach first promoted in North America by Wolf Wolfensburger in the 1970’s stating that people with disabilities should be able to experience the same sorts of life experiences and opportunities as their non-disabled peers. While this concept might seem obvious today, it was novel at the time and countered the practice where people with disabilities were congregated and segregated from the rest of the community and engaged in limited or no meaningful or productive life activities. Normalization advocated bringing folks out of these settings and into community life, housing and commerce. This concept was powerful, but also often misunderstood and oversimplified.

Wolfensburger further advanced normalization with his own concept, which he called social role valorisation. He felt that to advance normalization, individuals must also be given the opportunity to participate in society in valuable social roles. Through much of the 20th century, people with disabilities were not seen as valuable members of society, and instead were viewed as objects of pity and charity, problems to be erased or eternal children to be treated as such. Roles like neighbor, classmate, sibling, grandchild, employee or volunteer were unavailable to them. In order to make those roles available to children with disabilities, they need to have access to the same education and socialization as their non-disabled peers, and as adults they need opportunities for employment, housing and spaces (“third places”) where individuals can find a sense of belonging, like the coffee shop on Friends or the bar in Cheers.

My emotions are stirred up as I write this because I feel we are losing sight of the values of normalization and social role valorization in today’s fervor to reduce the cost of human services. We’re regressing to a time when keeping people alive (safe and healthy) was managed, but no care or attention was given to the quality of that life. When we lose access to the roles or environments that are meaningful, we take away the things that make life worth living. When we take away the meaning of life and the activities and relationships that enriched it, your whole world crashes down around you. Depression, grief, anxiety, dysregulation, self-injurious and aggressive behavior can all show up as unhealthy and potentially harmful replacements.

If done well, the outcome of inclusive policies and practices is valuable social roles for people with disabilities, and the success of human services programs should be measured by our ability to give individuals opportunities to access that. Not only because it is the ethical thing to do, but because holding valued social roles ensures the most efficient use of governmental resources. Individuals with robust lives filled with meaningful activity and relationships are far less likely to have a crisis requiring additional support and far more likely to have people to spend time with who don’t expect to be paid. I am proud of the work that the LOV Inc. Bridge Builder team does to create engaging community opportunities and the skills to access them for the individuals we support, a holistic approach that can create lasting impact more efficiently than the siloed approaches that our human services systems are currently promoting.

It’s important to note that neither of these concepts – normalization or social role valorisation – espoused curing disability or denying its impact on an individual’s life. Rather, it promotes the idea that disability is just one part of a person’s identity and should not be determinative of the opportunities and access they have in society. All of us deserve a full and enriching life that enables us to pursue our goals and interests, build genuine relationships, and be valued and contributing members of our communities.

– Stefanie Primm, Executive Director