Disabilities, Mattering, and Sharegiving
By Ora and Isaac Prilleltensky
In the summer of 2020, amidst the pandemic, we finally hit the “send” button and breathed a huge sigh of relief. Our latest book “How People Matter: Why it Affects Health, Happiness, Love, Work, and Society” was in our publisher’s inbox.
We wrote “How People Matter” because, as psychologists, we believed it was an important but largely neglected topic. Ora, who lives with FSH, a form of muscular dystrophy, brought a unique perspective to the topic.
We humans have an inherent need to feel that we matter, that our life has meaning. We define mattering as consisting of two core elements: feeling valued and adding value. We need to feel valued by ourselves, those in our inner circle, colleagues, and members of the community at large. When that need is thwarted, there is real suffering. Most people can recount a situation where they felt devalued, and the ensuing emotional pain. In fact, our brain responds to experiences of exclusion in the same way it responds to physical pain. In contrast, messages that convey belonging feel like chocolate to our social brain.
Feeling valued is a necessary, but insufficient condition for mattering. It is complemented by the need to add value, to contribute to other people, and to the community. Using our strengths at the service of something greater than ourselves is a powerful way of adding value. It is a way of sharegiving. Mattering is a virtuous cycle, the more we add value, the more we feel valued for our contributions.
Browsing through past issues of the “FSHD Advocate” highlights the myriad ways members of the FSHD community are adding value: creating companies; writing novels; raising money to advance research; fighting exclusion and discrimination of people with disabilities. Adding value to our family, friends, or pets, count no less. More ways of sharegiving.
The disability, however, presents unique challenges to feeling like we matter in the world. Experiences of exclusion are a painful thread in too many disability stories. While it is obvious how the progression of the disease makes life more difficult, it is no less important to recognize how our experience is shaped by our environment: From (in)accessible housing, to the (in)ability to pay for assistance, to messages we receive about ourselves. All of these shape our experience of mattering.
Many of the social gains we have achieved are due to the work of disability rights activists. The ADA, a major step in the emancipation of people with disabilities, was the result of their activism, a major form of adding value. But we must do more to remove physical, social, and attitudinal barriers that would enable more people to share their strengths, perspectives and contributions. There are barriers to sharegiving. Since all human bodies become weaker and frail as people age, everyone benefits from a society that is built for different kinds of people -- like those of us with FSH -- in mind.
Our disability should not prevent us from adding value to ourselves, our loved ones and society. This is why we coined the term sharegiving. Sharegiving is the experience of living in reciprocal relationships where we can add value in whatever way we can. We can do so at home or in the community. We can mentor another person with a disability or fight for access in the built environment. There are as many ways to add value to society as there are people with FSH. We know things many people don’t. We are resilient in ways that many people can benefit from. It is within our power to create opportunities where we can feel valued, add value, and help others do the same.
Ora and Isaac Prilleltensky are co-authors of the forthcoming book “How People Matter: Why it Affects Health, Happiness, Love, Work, and Society” to be published by Cambridge University Press. For more information, please go to www.professorisaac.com or contact us at ora@miami.edu