Tuesday, January 6, 2015

Living with a Disability, Part 1: Debunking Stereotypes

Patricia Lay-Dorsey 
As photographer Patricia Lay-Dorsey neared the close of her Detroit exhibit, Falling Into Place: Self Portraits, she used her gallery platform to host a public forum about living with a disability. Some disabilities are lifelong, some are due to trauma, some take over gradually and, some are invisible.

This post is the first in a series that will explore attitudes and assumptions about disability.
1. People 'on the outside' (having no disability or no visible disability) make a lot of assumptions about disabilities.
2. But people have a disability in the context of  living real lives.

Why does the Condolence Coach care about this topic?  The loss of health precipitates significant changes in life. Even persons with disabilities from birth, can experience distress with grief-like emotions. It is stressful to live in a world designed for the 'able', a world that champions strength-speed-beauty. Gaining awareness is always enriching. Instead of not talking about the elephant-in-the-room, we can learn to compassionately co-exist--and support another aspect of human diversity.

The forum organized by Lay-Dorsey was eye opening, and I have had marvelous conversations with many participants. Some things they share will surprise you!

"Disability from the Inside: Conversations with Disabled Metro Detroiters." 


Filmmakers generally depict people with disabilities as heroic or tragic.

Forum moderator Patricia Lay-Dorsey, described and debunked these stereotypes:

  1. Movies often characterize us as heroic, inspiring, brave.

"I am doing the best I can with what I've got." 

  1. Drama sells: we are scripted into the tragedy of no longer having a life.
"I did have a lot of emotional baggage to make my way through. Yes, there was a sense of loss, a process that repeated itself as new issues came up, but you deal with them. The culture can be off-putting, but I live a very full life."
Patricia Lay-Dorsey has excelled as a visual artist and instructor for nearly four decades, but only turned her creative focus to photography in 2006. The transition of art medium coincided with dexterity challenges arising from her primary progressive multiple sclerosis. 
[Source: J.P. Pacquing]
Before her 1988 diagnosis, Patricia's varied pursuits included running marathons! When she began to use a blinged-out (decorated) walker, she thought: "I can handle this; the worst possible thing would be to end up in a wheelchair."

In time, the walker failed to provide needed security and in 2000, Patricia began using a scooter. Surprise: "The scooter was freedom--this is my best friend!" (Now we know why one of the biggest electric scooter brands chose the name 'Amigo,' Spanish for 'friend.')

Her boldest project began with the idea of depicting her day to day life. "No drama, just the reality."  And though it was her routine, Patricia noted, "It was very emotional; I would cringe at some of the pictures. I didn't realize I had shame about certain aspects of my disability."  Referring to one of the project photographs that captured her in an unstaged sprawl on pavement, "I don't like to be seen when I fall. I had to get past that in this project."

Alesandro speaks next at the event, reminding us why accessibility is so important. Addressing Patricia's question about which of her portraits resonated with him, he shared, "The picture of you opening a container with your mouth-- I do that," he shared.

Like Patricia, Alexandro has MS. "From my scooter, I'm not usually in view of mirrors, so I don't often see myself. I have a computer app that makes the screen a mirror. On a good day, I'm proud of who I am. On a bad day, I'm regretful."

Views 'from the outside' of disability

Alesandro's family is with him at the forum.
His wife observes, "part of my identity is in caring for Alesandro; in some ways I wish I could do more. I have a demanding job, though, the other part of my identity, and I realize I am doing the best I can."
His father concurs with the feeling of "being on the outside looking in." 
His mother admits "I was pulled into this; I'm not always willing and able." Janice writes and speaks on the topic of Interdependence. It has been a profound influence on her journey with Alesandro. "Learning to ask for help is the basis of interdependence."  She suggests that we are fooling ourselves if we think we are lone rangers in life.

The Condolence Coach observes that one of those "different ways" is often a slower execution of tasks. Is my habit of haste (excused as competence or efficiency) intruding on an opportunity for mindfulness? I take a life cue from the next speaker...

Jody has pulled her chair up near the front row of chairs. She is striking: her pale complexion a contrast to her thick, dark, chin-length hair. Jody takes a brief turn when offered the microphone. "I've had MS for 41 years. If I did a self-portrait project I would title it:  SLOWING MY PACE."


What should you do and say if someone you know is or becomes disabled?

Patricia Lay-Dorsey shared from her experience:

"In the early days when I was simply grappling with an unknown future and a disconcerting present, the most helpful companioning I could have at that time was simply letting me share what I was ready to share and not pushing me beyond that. I mainly wanted my friends and family to recognize the enormity of this new reality I was facing. And I wanted to know that they cared."

"I did not want someone saying to me, 'So how does it feel to know that you might end up in a wheelchair?' Nor did I want someone ignoring the reality of what I was dealing with." 

"Being disabled is not my total identity but it certainly is a part of it. I like that fact to be recognized without pity or weirdness."

"The primary form of weirdness I encounter is people who say to me how brave I am to get on with my life. Especially strangers. If I were to give advice, it would be not to talk to strangers about their disability unless they bring it up themselves."

"You can certainly offer help if it looks like they need it. And the best way to do that is simply to say, 'May I give you a hand with the door?' or something else relevant to the function."

"And do not ask strangers why they are using an assistive device. To be honest, it is none of your business unless you need the information to buy such a device for yourself or others. In that case I would be happy to give any information that can be helpful."

"Simply try to be as respectful to me--and how I get around in the world--as you would want people to be to you."

Don't miss the other posts in this series on Living with a Disability including:
Living with a Disability, Part 2: Getting By or Growing Great!
Living with a Disability, Part 3: Enjoy Your Journey
Thank you for caring!

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