​Branded or Labeled?

Posted by Tim Gilmer in Life After Paralysis on June 25, 2021 # Lifestyle

Tim sitting on a tracker on the farm with his wheelchair next to himIn this age of image consciousness and branding, it is all too easy to become culturally obsessed with how we are seen more than who we are. The underlying purpose of social media, business, and just about anything in popular culture consistently tilts in favor of commercial success and popularity, which calls for creating an image, advertising and self-promotion. At times it seems like we are being driven by a continuous drumbeat of hype: Like me, like me, like my business, like my photos, like what I have to sell, like what others are saying about liking me, look at my numbers!

Are we in danger of being swallowed up by a culture of shameless self-promotion and commercialism that skews how we perceive everyday life? Are we expected to measure our own success in terms of quantity, not quality? In this competitive culture that demands constant attention, the need for peace and calm and freedom from harmful stress has never been more important than it is now — and it is as important to our success as it is to our health. It’s not all about numbers.

But those of us who must contend with complicated disabilities have a dilemma when it comes to promoting an image versus taking a vacation from ceaseless advocating.

In a culture that so often fails to take our little-understood lifestyles into consideration when making laws or policy, we must continually advocate for ourselves to be able to enjoy the same benefits and rights that others take for granted. For instance: access to appropriate medical care and diagnostic equipment; financial support to afford personal care attendant services in our everyday lives; adequate durable medical equipment for our activities of daily living; educational support to gain equal footing in the competition for life-sustaining jobs; and — something that is often overlooked and extremely important, especially now — equal voting rights.

How do we balance our needs for so many critical services and opportunities against our need to remain as free from stress as possible so we can enjoy life? It is all too easy to experience “burn-out” when everywhere we turn there is a new battle to fight. Dedicated disability advocates — who are needed now in ever-greater numbers on so many fronts — can only do so much before they wear down. They need reinforcements, and that means we need to be a unified community with a strong voice, a compelling message, and the clout to deliver it where it matters most.

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To be effective in our messaging, we need to be authentic, persuasive, and forceful, and we need to relentlessly persevere. That’s a tall order — one that we can only carry out if we have built-in habits, personally and collectively, that allow us to rest, renew, and return to the battle for equality over and over again.

To be authentic, we must be ourselves and we must be visible. Lawmakers, policy wonks, media and the mainstream population need to be better informed about not only our needs, but also our strengths and what we have to offer. Instead, our messaging and image too often come across — skewed by those who don’t really know us — as people in need, people who cry out to be supported with mainstream taxes and charity. To many, our “brand” is actually a label, and we are seen as objects of pity.

But what if we did not come across as needy but as strong, unified, and able to contribute to society in ways that deserve respect, not only as individuals, but as a community? What if we are seen as change-makers and leaders with a unique point of view that is valuable to all citizens? And what if — as voters — our considerable numbers (as the largest minority) could force those in power to regard us as a powerful voting bloc?

To take a giant step in that direction, we have available to us a ready-made, growing, and powerful theory of human potential at our disposal, if only we can employ it effectively. It is called Post-Traumatic Growth, and it is the antidote to Post-Traumatic Stress. People know about PTSD, but is the mainstream population even aware that PTG exists and is being demonstrated daily by greater and greater numbers in our community?

What if we encourage our major nonprofit advocacy groups, and by extension, the media, to run campaigns and stories based on PTG rather than the “inspirational cripple” default image? The “inspirational cripple” plays to the need for others to feel good about themselves by rewarding occasional disabled individuals as extraordinary. But PTG is a growing psychological model that embraces large groups, some disabled, some not. It is like the “universal design” of human potential — how to achieve fulfillment against long odds.

PTG was first officially recognized by psychologists in the mid-1990’s when Tedeschi and Calhoun of the University of North Carolina reported on research that established its foundation: [PTG] “is positive change experienced as a result of the struggle with a major life crisis or a traumatic event.” Its actual roots go much further back. In the New Testament, Paul’s letter to the Romans says, in part: “… we know that suffering produces perseverance; perseverance, character; and character, hope.” Early 20th Century psychiatrist-philosopher Viktor Frankl succinctly summarized it this way: “When we are no longer able to change a situation, we are challenged to change ourselves.” As a Holocaust survivor, he knew this firsthand.

And so do many of us. We have had to learn to adapt, to change, to reinvent ourselves as a result of loss that we deal with every day of our lives. We are uniquely positioned to promote ourselves as knowledgeable about PTG because our growth is what gives us hope and keeps us alive. Like combat vets, rape survivors, and increasing numbers of people who are successfully fighting cancer, we, too, our survivors. Yet we are uniquely different because we face uncommon adversity every day. When it comes to survival, we are the experts.

Our world has never needed us more than it needs us now. Not to pity or hold up as occasional inspirational models, but to include us in all facets of our culture so they can learn from our example how to adapt and survive — day by day by day.

Tim Gilmer graduated from UCLA in the late-1960’s, added an M.A. from the Southern Oregon University in 1977, taught writing classes in Portland for 12 years, then embarked on a writing career. After becoming an Oregon Literary Fellow, he went on to join New Mobility magazine in 2000 and edited the magazine for 18 years. He has published upwards of 100 articles, 200 columns, occasional movie reviews and essays. He and Sam, his wife and companion of 47 years, also own and operate an organic farm south of Portland, where they live with their daughter and son-in-law, four grandsons, and a resident barn owl.

This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.