“The BeZine” February Blog Series on Illness and Disability begins today; Why “Disabled” not “Differently Abled”

Courtesy of Tiago Moisés under CC0 Public Domain license via PublicDomainPictures.net

“My disability exists not because I use a wheelchair, but because the broader environment isn’t accessible.” Stella Young, was an Australian comedian, journalist and disability rights activist. She was born with osteogenesis imperfecta and used a wheelchair for most of her life. When she was fourteen she audited the accessibility of the main street businesses of her hometown.



Throughout the month of February 2020 The BeZine blog is featuring a range of material on illness and disability in concert with Kella Hanna-Wayne’s YOPP!, a social justice blog dedicated to civil rights education, elevating voices of marginalized people and reducing oppression. Our intention in doing this is to give voice to those with illness and disabilities, to raise awareness of the issues and outcomes, and to offer workable alternatives for those who have to manage in environments that are not conducive to inclusion.

We’ve already had some question with regard to terminology: disabled v. differently abled.  We respect each contributor’s chosen terminology, which will be reflected in their posts.

Kella and I are disabled and we both prefer that term over differently-abled. Here are my reasons:

  1. There are things I – like many others – am absolutely unable to do. Period. End of story.
  2. “Differently abled” is inherently meaningless in this context. All human beings are differently abled. Some are better at music, for example, and others are better at accounting.
  3. Almost everyone has a degree of disability, especially as aging progresses.  If you wear glasses, you are disabled and, depending on your occupation or interests, you might be unable to function without glasses.
  4. A reference to anyone as a “differently-abled” individual, is a cruel euphemism.  In my own case, for example, it diminishes the reality of my 24/7 life, which involves being on high-flow oxygen, being unable to lift anything heavy, being restricted to home, often being restricted to bed, dealing with chronic bleeding due to a rare blood cancer, and living with extreme fatigue.
  5. “Differently abled” implies a norm that does not exist. There is no one way to feel, to communicate, to educate oneself, or to ponder and create art. The implication is that anything that deviates from the fantasy norm is less than ideal, possibly even somehow wrong.
  6. “Disabled” is not a disparagement. It’s truth. It’s accurate. Implicit is an acknowledgement that there are productivity and quality-of-life challenges that have everything to do with social, political, and cultural assumptions and structures and nothing to do with any one person’s atypical body or mind.
  7. Finally, “differently-abled” is a stigmata that ignores the kinds of accommodations (including some  life-changing technologies) that could be made available to help those many with atypical bodies and minds to lead fuller, richer lives and to contribute their energy and talent to help others and their communities.

This is the short story, the down and dirty of it.  Input is welcome from readers and we hope that you will enjoy and benefit from contributors’ posts throughout the month. We are still open for submissions to the February blog-post series on illness and disability and for submissions to the March 15 issue of the Zine, themed “Waging Peace.”  Submissions should be emailed to bardogroup@gmail.com.

In the spirit of love (respect) and community
and on behalf of The Bardo Group Beguines,
Jamie Dedes
The BeZine, Managing Editor


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FEEL THE BERN

For Peace, Sustainability, Social Justice

The Poet by Day officially endorses Bernie Sanders for President.

The New New Deal

Link HERE for Bernie’s schedule of events around the country.

“Democracy is not a spectator sport.” Bernie Sanders



“Every pair of eyes facing you has probably experienced something you could not endure.”  Lucille Clifton

The Spoon Theory … or How To Continue to Be Happily Artful Despite Chronic, Catastophic and/or Life Threating Illness

This one is for all my poet, writer, artist and musician friends who continue to create in the face of sometimes dramatic  physical health issues and disabilities. Be as well as you can be. You are valued. 

There are two videos included here.  If you are reading this post from an email subscription, it’s likely that you’ll have to link through to the site to view the videos. They’re both worth the time and effort.

The Spoon Theory (see video above) is a clear and vivid way of explaining what it is like to live with any chronic, catastrophic and potentially life-threatening illness. I suspect that it also explains what life is like for those who have lived long enough to be described as “elderly.” Understanding The Spoon Theory gifts us with compassion for ourselves and patience with how long it takes to get things done … even a poem, piece of flash fiction, a blog post or visits to other bloggers.

The first step in living successfully with catastrophic illness and advanced aging is to recognize (acknowledge/understand) the ramifications in terms of everyday life and its details. The Spoon Theory helps with that.

The second step is acceptance. That’s about letting go of your story. It’s about not being defined by the circumstances of your life. It’s about living with not struggling against. This requires something much more profound than positive thinking, which tends toward the superficial.

Letting go of our stories means letting go of judgement and attachment and a sense of victimization, which are the root causes of many of our very human pathologies. The philosopher Arthur Schopenhauer wrote of this my-story mentality as “striving, disappointment, and boredom” or a life that is devoid of Spirit. Songwriters, who often make their living by stoking the “pain body” or the residue of emotional pain that stays with us [Eckhart Tolle], call this the IFD disease – idealization, frustration (the ideal cannot be achieved) and demoralization.

The third step in the journey is to adapt, a business of the heart. Adapting is not about giving up. It’s about finding our core of  joy and gratitude and no one reminds of joy and gratitude  better than the beloved Benedictine monk, Brother David Stendl-Rast (video below), who combines the wisdom of traditional Christianity with pragmatism of Buddhism.

No guilt. No judgement. Just joy. With understanding, self-compassion, patience and acceptance, we can still produce as so many of us do … and maybe, instead of beating ourselves up over what didn’t get done each day, we’ll be able to pat ourselves on the back for all we do accomplish. We cannot share The Spoon Theory with everyone. Many people will not understand our challenges. All that matters is that we do and that we support one another.

© 2017, words, Jamie Dedes (The Poet by Day), All rights reserved


“In politics being deceived is no excuse.” Leszak Kolakowski

Recommended read: On Tyranny: Twenty Lessons from the Twentieth Century by Timothy Snyder. Left, right or center – American or not – it’s a must read for our chaotic times … and not just the list of lessons but Prof. Snyder’s commentary on each. This book is a rational enlightening little gem and a powerful wake-up call.

Lesson One: “Do not obey in advance. Most of the power of authoritarianism is freely given.  In times like these, individuals think ahead about what a more repressive government will want, and then offer themselves without being asked.  A citizen who adapts in this way is teaching power what it can do.” Prof. Snyder

THE WORDPLAY SHOP: books, tools and supplies for poets, writers and readers

“The Mighty” (That would be you and me!) … and your Wednesday Writing Prompt

I am disabled. Hear me roar!

I am disabled but not unable.  Thanks to medical technology, fabulous and caring physicians, family support, social support (both online and off) and computer technology, I continue with my chosen career, my chosen causes and a life that is as full and engaging as anyone could hope.

Now, I’ve discovered The Mighty (details in the video below) thanks to my Bardo Group Beguines colleague, Lana Phillips. What a great find!

A wonderful idea, essentially an online support group for people who are dealing with chronic and catastrophic illness and sharing information and resources. The people who visit The Mighty site and/or write for it, share their stories (including stories of parenting). They are women and men who are ill or disabled themselves or who are caring for others who are ill or disabled … or, perhaps both.

We are so fortune in these days that there are support groups available. My own mother lived with cancer over and over again. First breast cancer, which kept reoccurring. Then thyroid, kidney and other cancers. Ultimately she died at 76 of breast and colon cancer.  In her day, there were no support groups,  no one in her life who could understand the complications: psychological, financial or physical. There was no adult who could observe, understand and intervene. She also suffered from mental illness and was in an almost constant state of stress and trauma.

Unlike my mom, I have the benefit of a support group at the Medical Center for people with interstitial lung diseases who are in pre-transplant (me), transplant and post transplant programs. I also belong to an off-line support group of people with “life-threatening” (read ultimately fatal) illnesses, which is run by the local Buddhist meditation center. Some are – like me – lucky enough to go on for years. I was diagnosed in 1999 with Idiopathic Pulmonary Fibrosis, which is fatal within five years of diagnosis and for which there is no cure.  I’m still here because the diagnosis was wrong. There was no way to know that until time passed and reactions to medical treatments could be observed and evaluated. These proved that the condition is actually Hypersensitivity Pneumonitis. So, as you see, I’m still hanging out. Some of the members of our Buddhist group are not. Over the last seven years we’ve lost nineteen friends. That’s the tough part.

The upside is that our offline support groups provide us safe haven to share information, to be open about our fears and frustrations, and to share our joys. So too The Mighty, where there are a rather remarkable number of conditions addressed from a personal perspective and in a manner that is informed, compassionate and uplifting. Bravo!

WRITING PROMPT

Write a poem, short story or feature article about dealing with chronic catastrophic illness or disability. Directly or indirectly, illness and disability touch all our lives. It’s just part of this package called Life!  If you write an article, you might consider submitting it to The Mighty. Submission guidelines are HERE.

© 2016, words and photograph, Jamie Dedes, All rights reserved.

Among other things, the gift of music …

Give thanks for unknown blessings already on their way.

Native American prayer

Best wishes to those who celebrate holidays at this time of year and a happy new year to everyone. I’m taking three weeks to rest, recoup and regroup and spend time with family, as I know many of you are as well. Meanwhile, there is a rich bank of posts here on poetry and poets and I have left five or so recent poems up. The Bardo Group will continue to post through the holiday season. Thank you all for reading here and for your “likes” and kind comments. I hope you enjoy this beautiful and inspiring holiday video.

See you on January 6, 2014. 

Warmest regards,

Jamie