Observations From Below: Declaration of Interdependence

I got a great response from my last blog about leadership and core values. The most provocative issue I brought up was about how I don’t think independent living is the most efficient way to look at community inclusion for people with disabilities. Bobby Silverstein, one the architects of the ADA explained that the law mandates a recognition for Independent Living as a legitimate outcome of public policy, that it provides for independent living skills development, provides necessary long-term services and supports such as assistive technology devices and personal assistance services and provides cash assistance.

I believe we should all coexist interdependently. I don’t mean to suggest that Independent Living is a bad goal. After all, independence is a prized American value espoused from the aptly named Declaration of Independence. Government officials talk about people without disabilities as though they are completely independent and do not rely on anyone else for support. If we think about it, this is not true at all. We all buy goods and services that we would not be able to provide for ourselves. We all have friends, and most of us have a family that helps provide us with support. We should not have higher expectations for people with disabilities than we have for ourselves.

Several scholars have noted a decline in the strength of America’s community. Robert Putnam wrote a book entitled “Bowling Alone” in 2000 in which he identified the disturbing decline in social and civic engagements. “Drawing on vast new (in 2000) data that reveal Americans’ changing behavior, Putnam shows how we have become increasingly disconnected from one another and how social structures—whether they be PTA, church, or political parties—have disintegrated.” The problem with this is whether we like it or not, we are social creatures. Even the most introverted of people cannot fully function by themselves without the help of some type of human interaction.

In fact, loneliness is now recognized as a health concern. Dr. Sanjay Gupta wrote an article called, “Why You Should Treat Loneliness as a Chronic Illness.” He cited studies which suggested that lonely people experience cognitive decline at a much faster rate than those who are socially active. “Studies show that loneliness increases the risk for early death by 45 percent and the chance of developing dementia in later life by 64 percent. On the other hand, people who have strong ties to family and friends are as much as 50 percent less at risk of dying over any given period of time than those with fewer social connections.”

For many reasons, people with disabilities are much more likely to be lonely. Interdependence might offer a solution to help everyone. Take me for example. I might have many friends and fans through my blogging and speeches. Therefore, I have a lot of social capital, which refers to your relationships and how they promote positive by-products in your life. As I’ve mentioned in my previous blogs, my friends have brought me a lot of opportunities such as part-time jobs and a bevy of speaking engagements. And within that community/circle of friends, I always seem to find a PCA (Personal Care Assistant). My talent in writing and speaking does not make unique. All people with disabilities can and should have the same level community engagements as I do.

I recently learned of an excellent example of a gentleman who was employed for a long at the University of Kansas by the name of Jay Turnbull. He had autism, bipolar disorder, and an intellectual disability, but that didn’t stop him from ending up as a valuable member of the community of Lawrence, KS. He had a difficulty, due to behavioral problems, of staying in group homes. His family decided to take him out the homes. Since his mother happened to work at UK as a professor, she found him a job doing menial (but essential) jobs such as basic clerical work, delivering mail and recycling. He eventually befriended a few students, who happened to fraternity members, who his mother employed as his assistant. “It was his frat brothers that ended up proposing the solution that got him a home. With the help of his parents, he moved into his own home. Several frat brothers became roommates. In exchange for free housing (and salary for his primary assistant,) they helped him with daily living issues like cooking and cleaning, setting up his budget, scheduling activities, and buying clothes. And they genuinely liked his company. Unfortunately, at the age of 41, he had a sudden heart attack and passed away. The university put out a statement extolling his profound impact on the school and the community.

Everyone can be like Jay and me, but we need a more solid infrastructure and support system. Dr. Al Condeluci offers a couple of ways that we can all improve our social capital. Find or promote aspects of similarity, find the means/means for people to engage, and understand how communities behave. You can achieve this through finding homogenous interests, hobbies, passions, skills, hopes, shared perspectives, and similar conversations. Acknowledge each other as individuals, stay curious, be interested, reduce distractions, slow down, and expect messiness. Everyone has things that they are excited or interested in. When we find those things, we not only bring out the best in that person, but we now have some ideas in helping that person find some new social capital.

We are all interdependent, as it should be.

That’s how I roll, with a little help from my friends.