Living … the operative word … With Disability

disabilityI have been living with a chronic potentially life-threatening illness for many years now. It’s enlightening and not just because of what I’ve learned about myself.

It’s interesting to observe reactions to physical disability, in my case that means visible life-support (oxygen). Sometimes we actually become invisible – especially if our hair is graying – and sometimes we are treated with kindness (always appreciated) or with an inappropriate solicitude (a definite no-no). You don’t need to shout at me. You don’t need to read forms to me. My lung capacity and functions are issues, not my hearing, my mental acuity or my ability to take care of myself and negotiate the world. Honestly, chronic exhaustion and needing help lifting, carrying or shopping are inconveniences, irritating and often frustrating, but not earth shattering. We learn to live with and work around such challenges. We adapt.

On the other hand, since my move into disabled-senior housing, I’m distressed to see that people with emotional and psychological disabilities – disabilities that are only evident because of inappropriate behaviors – are often relentlessly treated with disrespect, even scorn. It’s as though inner demons are a moral indictment and yet the complications of psychological and emotional disability seem to me to be more intractable and far-ranging than physical constraints. Physical disabilities in and of themselves don’t keep us from loving, finding joy and hope in life or having dreams.

Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” Fred Rogers, The World According to Mister Rogers: Important Things to Remember

Ditto that. Thank you, Mr. Rogers.

© 2016, words and photographs, Jamie Dedes, All rights reserved


The focus of "The BeZine," a publication of The Bardo Group Beguines, is on sacred space (common ground) as it is expressed through the arts. Our work covers a range of topics: spirituality, life, death, personal experience, culture, current events, history, art, and photography and film. We share work here that is representative of universal human values however differently they might be expressed in our varied religions and cultures. We feel that our art and our Internet-facilitated social connection offer a means to see one another in our simple humanity, as brothers and sisters, and not as “other.” This is a space where we hope you’ll delight in learning how much you have in common with “other” peoples. We hope that your visits here will help you to love (respect) not fear. For more see our Info/Mission Statement Page.

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