Jenelle’s Research Findings on Shame, Blindness, & Connection

It’s been quite awhile since we’ve added a new blog post. It’s definitely been on our minds as the days pass quickly with family, work, school, and travel. We remain passionate about sharing our journeys, and providing education, advocacy, and stories about blindness to our readers.

As many readers may know, I am in the midst of a Master of Social Work program at the University of Washington in Seattle. I recently completed the research portion of this program, and would like to share the narrative Joy and I created to illustrate the research findings.

I designed this research study using Brené Brown’s.research on shame resilience, and collected data from 5 women who have attended an Oasis Center for Hope retreat. Disclaimer: This is Masters level educational research and not intended for publication or peer review. It is my hope that future research projects with larger and diverse sampling can be pursued using similar research design and methodology. 

It was almost midnight the evening before my research presentation, and I had a major case of writer’s block. I had lots of rich qualitative data from the research respondents and no clear picture of how to put it all together in a presentation. I decided I just needed to talk through it, so I called on my “double” and we stayed up talking through ideas, and that’s how “Abby’s Story” came to life.

Abby’s Story

I’d like you to meet Abby. She was created by my friend and fellow blogger, Steph from Bold Blind Beauty. Steph graciously let me use Abby’s image for my presentation. Abby is a fictional character though she is representative of my research findings, as she is a composite of non-fiction narratives and themes representing experiences shared by research participants in my study.

Abby started out with low vision as a child and called herself “visually impaired” and later lost more vision and referred to herself as a “person with low vision”, though she also identifies with the term “blind”, as used in this narrative.

In Abby’s early years, she is an exuberant, thoughtful and caring child who makes friends easily and enjoys playing practical jokes. She never really notices she is different until first grade when she is called to the chalkboard and can’t find the piece of chalk. She moves her hand along the bottom edge of the chalkboard, trying to locate the chalk. “Use your eyes”, the teacher, who knows about her disability, tells her in a stern voice. Abby learns that she is different, and that people do not like it when she doesn’t use her eyes like everyone else. At age 10, Abby searches the ground for a coin she has dropped, using a sweeping motion to comb the ground as her low-vision specialist had taught her, “Stop feeling around like Helen Keller!” her dad scolds her.
The first layer of Shame: Ableism
Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other. Ableism is intertwined in our culture, due to many limiting beliefs about what disability does or does not mean.

 Fast forward a few years, Abby is in middle school, trying to wear the right clothes to fit in and navigate through crowded hallways. Abby does not use a cane or tell anyone about her vision loss. She distances herself from the scary word “blind”. Abby convinces herself that she is just like everyone else, only clumsier. She moves carefully through the halls, but still manages to walk right into a garbage can in the school lunchroom. “I’m such an idiot,” Abby tells herself.
The Second Layers of Shame: Internalized Ableism
Internalized Ableism occurs when Individuals with disabilities unconsciously adopt disempowering negative beliefs, stigma, and prejudices about themselves. 

Years pass, and Abby is in college. She has a nice group of supportive friends who know about her disability and are often helpful and encouraging. One day, Abby learns that her closest friend has had a birthday party and not invited Abby. “Oh, we went on a long bike ride,” her friend explains,”I figured it would be too hard for you to keep up, and didn’t want to make you uncomfortable.” Abby wonders why no efforts were made to rent a tandem bike or figure out other options to include her in the celebration.
The Third Layer of Shame: Social Exclusion
Social Exclusion is a form of ableism that excludes people with disabilities. 

Abby’s journey continues as her remaining vision slowly deteriorates, and Abby seeks help. She learns to use a long white cane, travels independently, and builds a successful career. She is walking through an airport one day, long white cane in hand, and notices that she is being followed. After several turns to see if the person is still close beside her, she pauses to see if he too will stop. “Do you need something?” she asks the gentleman hovering nearby. “I just want to make sure you know where you’re going,” he tells her in a pleasant voice. “I am fine, thank you.” Abby replies, having had similar experiences many times before. She shudders as she recalls the multiple strangers who have physically touched her, pushing or pulling to steer her, assuming she cannot navigate on her own.
The Fourth Layer of Shame: Microaggressions
A microaggression is a term used for brief and commonplace daily verbal, behavioral, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative prejudicial slights and insults toward any group.

 The layers of shame build up until Abby is engulfed in shame. Abby does not want shame to rule her life, so she discovers protective factors that allow her to peel away the layers of shame.

Abby begins to seek connection with other blind people. She attends a retreat for blind women where she learns about shame, vulnerability, and authenticity. She learns that she is not alone and that many of the women share her stories of ableism, internalized ableism, microaggressions and social exclusion.

Abby’s peers offer her empathy and non-judgmental support. She begins practicing self-compassion and recognizing disempowering thoughts and feelings that she had come to believe as facts. She unpacks the ableist roots of shame related to blindness that contribute to social exclusion and microaggressions.

Abby is not free of shame, but she is now able to recognize and speak shame. She maintains connection with the women from the retreat and grows her circle to include other people who share the characteristic of blindness, and with this community, she continues to work through shame triggers to avoid building layers of shame.

“If we can share our story with someone who responds with empathy and understanding, shame can’t survive.” – Brené Brown

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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6 thoughts on “Jenelle’s Research Findings on Shame, Blindness, & Connection

  1. Hello Joy and Janell,
    I was so excited when I found your blog— you’re back!
    Janell, I really love and appreciate the way you have described what living with blindness is like for a woman. Abby is Like a portal into this world that we inhabit. What a brilliant way to consolidate five individual stories. Thank you Janell for the work that you are doing. I think you could just change our world!

    1. Thank you Ann! It seems we are all changing the world by living our lives authentically. So grateful to you for giving us encouragement on this blog that we sometimes leave unattended for months at a time. It does feel good to post again and reconnect with readers!

  2. yes, I think you could just change the world. In fact, you already have changed our little family ‘world!’
    By educating us and giving us glimpses into your world.

  3. Thank you for sharing your research findings, Jenelle. I love that you connected your work to the amazing Brene Brown. Joy, it was so good to spend time with you recently!

  4. Jenelle,
    I love your wisdom!
    “It seems we are all changing the world by living our lives authentically.”
    Today, that is what you are doing, and so am I…one day at a time.
    Thank you for sharing your thoughtful research.
    Hugs,
    Kevin Kuhn

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