Tag: Advocacy

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Path To Passion, Purpose & Identity

Path To Passion, Purpose & Identity featured image description is in the body of the post.

Path To Passion, Purpose & Identity

“Pay attention to the things you are naturally drawn to. They are often connected to your path, passion, and purpose in life. Have the courage to follow them.”

~Ruben Chavez

Birth of an Advocate

When I was growing up I remember feeling so small, powerless and insignificant. From an early age, kindness, compassion, and more importantly, the need to do the right thing was always important to me. As a child, I wanted nothing more than to make the world a better place. Accomplishing this goal would be a challenge without a roadmap to follow.

One thing I was really good at though was making poor life choices. Bad decisions like turning down a scholarship to marrying quite young and more, became my MO. Depression, poor self-esteem and emptiness derailed me more times than I care to acknowledge. Thankfully, my negativity was balanced by my tenacity and the desire to challenge myself to become more.

At the outset, I had everything against me. I was the product of a broken home, poor, black, female and I had an unhealthy portion of self-hatred. My childhood wasn’t the best and I learned early on that life wasn’t fair and to always be on guard. From my point of view, serious changes were needed but I couldn’t make change happen–I was just a kid. Even so, being a kid I knew injustices when I saw them.

Defining Success

Knowing my personal values were key components for me in becoming an advocate. Long before I worked for one of the “Big Four” accounting firms I defined my success. For me, success was always more than a cushy job, fancy title, or social status. Being able to adapt no matter the circumstances, to me, is a success.

When my three sons were small it was tough being a single parent. It was even tougher working full-time when one son was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). Looking back now it almost seems like the struggles with my son Devon was a bad dream. Today, Devon is such a joy and he is also a great source of strength to me.

My Three Greatest Accomplishments

  • Raising three sons to adulthood with very few support systems and even less in the way of material things. Adapting by going without became our protocol and we did alright.
  • Advocating for Devon by working with daycare centers and school districts was another full-time job. This meant learning everything I possibly could about special education and spending hours on end communicating with school officials. To this day I still have the 3-inch binder filled with IEPs, transcripts, etc. This doesn’t include the back and forth email communications and phone calls almost on a daily basis.
  • My third greatest accomplishment was advocating for my disabled mother who was denied disability benefits. Her last denial spurred me to begin a massive letter writing campaign to my legislators. The outcome? My mother received disability benefits in a matter of a couple of months.

My greatest achievements have nothing to do with employment, wealth or material things. These successes have everything to do with creating positive change by challenging a system.

Challenging systems or societal norms with a laser-focus to make life a little better for others is who I am. Ultimately it’s my ability to focus, a systematic approach, combined with a thirst for learning; that propelled me into advocacy.

Coming To Terms With Who I Am

As a die-hard introvert, my most comfortable place of residence aside from being at home is inside my head. While sometimes being inside my head can be a scary place to be it’s also where the magic happens. Ideas and dreams of a world where people of all abilities embrace one another despite our differences are my passion. Having respect for other’s opinions and being open to the idea that every person has a unique walk in life has expanded my world.

For so many years I tried to figure out who I am and what my purpose is only to find I’d been living it all along. Sure I made many mistakes and I think the greatest was not listening to my gut because I wanted to fit in. Today, I’m no longer concerned with conformity and I’ve found contentment.

Terms others placed on me like a buzzkill, intense, and quirky, used to bother me but no more. I am all of these things and more and it’s okay. While I’m not sentimental I find gratitude in the smallest of things.

It’s no accident I’m an advocate, after all, I’ve tried to pattern my life after my favorite childhood quote. This quote by Ralph Waldo Emerson remains my favorite today:

Do not go where the path may lead, go instead where there is no path and leave a trail.

Never in a million years would I have imagined I’d lose my sight. Learning to navigate the world with a white cane and adjust to blindness is an ongoing process. However, my life is so much more enriched largely due to advocacy and empowering others.

Path To Passion, Purpose & Identity Featured Image Description:

I’m wearing white jeans with a gray Steeler tee with our black and gold team colors. I’m standing in grass with a tree behind me wearing tan flats and of course my color coordinated gold #WhiteCane slimline cane.

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Visual Impairment Leads To Advocacy Campaign

Visual Impairment Featured image description is in the body of the post.

My vision changes every hour, sometimes I can read a street sign, recognize a friend, or read a newspaper headline. Some days I can’t see an inch past my nose.

~Dr. Amy Kavanagh
Women On The Move 60

Visual Impairment Leads To Advocacy Campaign

Amy at BBC image description is in the body of the post.
#1 Amy at BBC

It’s taken 27 years for me to accept my visual impairment. I was born with nystagmus, limited depth perception, and almost no peripheral vision. Alongside light sensitivity and myopia, it’s a mixed bag of sight issues that my doctors continue to puzzle out. My vision changes every hour, sometimes I can read a street sign, recognize a friend or read a newspaper headline. Some days I can’t see an inch past my nose.

In a typically British approach, my parents didn’t want to make a fuss about my disability. They encouraged me to be as normal as possible and it was the best solution when no other help was offered. To this day, my mum says how much she wishes the internet had been around when I was growing up. Although I knew I was different, I didn’t really feel the impact of my visual impairment until I went to university.

I’ve always loved history and I pursued my passion all the way to a PhD! I spent nearly a decade in higher education, and over the years had some of the happiest and lowest times in my life. Working towards my PhD was exhausting and being in denial about my visual impairment added to the strain. Eventually, the work took its toll on my mental and physical health. I’m immensely proud of my accomplishment, as acquiring my PhD was a huge achievement. However, in the end, I knew I needed a change.

Actively Seeking Help Opens The Floodgates

#2 London Underground

It was only through starting a new career at a disability charity that I realised how much help I denied myself. So I started to reach out for some support. First I turned to my twitter community, I had used the social media platform for a few years, mostly for academic networking, but I soon discovered an entire online family of visually impaired people. These new friends had so much advice and guidance. They had been there; they had struggled, they had denied the difficulties, and also finally they had asked for help. It was so refreshing and such a revelation to hear so many similar stories and read about so many people living confident lives after sight loss.

I was encouraged to contact Guide Dogs UK, but I was skeptical. Part of my problem was that I just didn’t identify as “blind.” Even though I was born with a visual impairment, I didn’t think of myself as disabled. Everyone always went on about sight loss, but I’d never had it in the first place! It was my normal, but I was fast realizing I didn’t just have to put on my stiff upper lip and accept it.

Contacting Guide Dogs UK changed my life. The support, skills, and encouragement they have given me, has been incredible. Just one year later I’ve gone from suffering in silence to being a visually impaired activist! I’m now a confident long cane user and I’m waiting for a guide dog. Instead of being in denial about my disability I now advocate for the rights and equal opportunities for visually impaired people.

Advocacy Born Through Acceptance

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#3 Selfie

I’ve even started a campaign to encourage the public to offer help to disabled people. My #JustAskDontGrab message uses my experiences of positive help, and unwanted grabbing, pushing or pulling, to educate people about how to offer assistance politely and respectfully. Over the last few months it’s gone viral, and I’ve been on the radio, tv and in newspapers! It’s been a whirlwind, but such an empowering experience. Also, I’ve been overwhelmed by the number of visually impaired people who’ve contacted me to say they’ve experienced the same journey. They’ve told me, my story of accepting my visual impairment and the cane has encouraged them to do the same.

I will keep sharing my story because it’s the message I needed growing up. I want young people struggling with their disability to know that they don’t just have to cope. They don’t have to manage alone, there is help out there, and that asking for support is the first step to being themselves, rather than hiding who they really are.

Since embracing my visual impairment as part of my identity I’ve been a happier and more confident person. Using a long white cane has given me freedom and I can travel independently and safely. Most of all, I finally feel like the real me. Of course, there are still difficult days, but I’ve stopped denying my real self and now I openly love my disability.

Visual Impairment Featured Image:

Profile photo of Amy walking through a park. She is using her long cane and wearing a summer dress.

Additional Images:

  1. Head and shoulder shot. Amy is sat in front of a wall with the BBC logo on. She is wearing big headphones over her bright pink hair. She is smiling and looking at the camera.
  2. Amy is standing at a London underground station, with the classic red, blue and white sign behind her. It’s a sunny day, Amy is wearing sunglasses and holding her long cane across her body. She has a light turquoise 50s style print dress on.
  3. A selfie, it’s a sunny day, trees and blue sky in the background. Amy is smiling looking at the camera in large round sunglasses. Her hair is blond with bright pink hair fading from the top. She is wearing a black t-shirt and badge, the badge shows a pair of sunglasses and reads, medical necessity not fashion accessory.

Connecting With Amy:

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Poppi & Liz Wheeler | Blind Beauty 52

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Poppi & Liz Wheeler | Blind Beauty 52

“A guide dog has given me confidence to get out and about. When I’m feeling scared or overwhelmed Poppi is there to make me laugh or sometimes just sit with me and put her head in my lap. She is more than my eyes. She is my guardian angel and my very best friend. I’m so grateful to have her by my side.” 

~Liz Wheeler
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Image 1

All I could muster on visiting Poppi’s Instagram account was a long, drawn-out awe. Poppi is a yellow labrador who has the sweetest facial expressions. Knowing she’s given her mum the gift of independence is especially heartwarming.

Poppi’s account is pawsitively positive. She looks out for her mum, Liz, and ensures her safety whenever they are out and about. In addition to caring for her mum, Poppi tackles social issues in a solution-focused, educational and awareness-building way.

You see, Liz only has 5% of her remaining eyesight left which means her eyesight is severely impaired. As I’ve talked about many times, blindness is not a simple matter of seeing versus not seeing. Blindness is on a wide spectrum that takes into account many factors. The important thing to remember is that each of us is doing the best we can with what we have.

Poppi and Liz are advocates working to change perceptions on what it means to live with blindness. By doing so they are making this a smoother transition for those newly affected by sight loss.

Blind Beauty 52 Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Poppi and Liz are on the cover laying in the grass with Liz’s right arm draped around Poppi. Liz is wearing a navy blue sweater with jeans and Poppi is in her harness looking very serious.

Blocks of text superimposed on Liz & Poppi’s photo are: “Bold | She Keeps Pressing Onward,” “Blind | She Has Deeper Insight,” “Beautiful | She Sees To The Heart Of Others”

Image 1:

Liz is looking absolutely stunning while she poses with her bedazzled black “white cane.” She is wearing black heels, pants, leather jacket, and a white blouse accented with a long cream frilly scarf.

You can connect with Poppi on the following social media platforms:

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Marieke Davis | Blind Beauty Issue 43

Marieke Davis Blind Beauty #43 featured image description is in the body of the post.

Marieke Davis | Blind Beauty Issue 43

Marieke (mah REE kah) Davis has a two-fold overriding philosophy that guides her life:

  1. Art should be inclusive, not exclusive, and

  2. Art should have an educational purpose that facilitates human understanding.

In today’s Blind Beauty Issue 43 you will meet Artist, Marieke Davis. Marieke’s passion for changing perceptions shines brightly through her extraordinary artwork.

Sight Stealing Diagnosis

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Image 1

Diagnosed with a massive brain tumor (pilocytic astrocytoma) at age ten, Marieke underwent three surgeries and 15 months of chemotherapy in the course of ten years. Although she has been intervention-free since her last surgery in 2011, she is permanently visually impaired with hemianopsia (half her field of vision in both eyes), and so uses a white cane to compensate for her lack of right-side vision.

Her love for creating art and for telling a good story took on a therapeutic objective after her diagnosis, but soon became intertwined with her pursuit of narrative art—art that tells a story. This pursuit was further developed when she enrolled at Arizona State University, (ASU) where she first tried her hand at Pop Art and discovered that the small frames used in comics and graphic series accommodated her visual impairment very well. She graduated from ASU last year, summa cum laude, with her Art major and minors in English Literature, Women’s & Gender Studies, and Creative Writing.

In the Bachelor of Fine Arts (BFA) program, Marieke experimented with various artistic techniques and mediums—emulating classic art masterpieces, such as depicting herself in the manner of Gustav Klimt’s “Portrait of Adele” and imitating Alphonse Mucha’s Art Deco style in her “Women of the Apocalypse” series, dabbling in intermedia, as shown in her objet d’art piece, “Sight of Hand,” in which she ironically decorated her first white cane with plastic “googly eyes” and attached a decorated plaster hand at the end of the cane to illustrate to the fully sighted that the feel of a white cane enhances sight for the visually impaired/blind, and creating unique jewelry—while almost setting her bangs on fire in the process!  

Blind Beauty Issue 43 Image 2 description is in the body of the post
Image 2

Finding Artistic Expression

Ultimately, her artistic exploration led to her most comfortable means of artistic expression in graphic literature and comics. It was while she was teaching herself how to create the Prologue and first chapter for her series, Ember Black, that her ASU Disability Resources liaison revealed to her that her daughter is also a visual artist; however since she is completely blind, she has never been able to see her work. That got Marieke determined to provide an audio companion to her graphic series, in an effort to extend her visual art to the visually impaired. The audio version—complete with voice actors, sound effects, and music—along with the printed graphic version earned her the Audience Choice Award in the First Annual ASU Herberger IDEA Showcase, and she is currently working on Chapter 2 of Ember Black, thanks to a grant from the Arizona Commission on the Arts.

Image 3 Life Is Blurry description is in the body of the post
Image 3 Life Is Blurry

Concurrently, Marieke publishes “Life is Blurry,” an autobiographic, online comic strip created from the perspective of a “visually impaired visual artist”—such as she is—with the purpose of educating the able-bodied world through the most effective means she knows: humor. The strip was inspired by Alison Bechdel’s graphic autobiography, “Fun Home,” and was developed in her Women’s Studies course, “Chronicling Women’s Lives.” Excerpts from the strip earned Marieke a 2017 Kennedy Center for the Performing Arts VSA Emerging Young Artist award, and her entry is currently on a national tour. Eventually, Marieke would like to compile her comics into a complete graphic autobiography, but in the short-term, she hopes to have “Life is Blurry” become a nationally syndicated comic strip. Just as people of color strive for artistic representation, people with disabilities want to be represented in the arts, particularly in popular culture.

Image 4 Life Is Blurry description is in the body of the post
Image 4 Life Is Blurry

Past & Future Panel Presentations

Last year, Marieke presented a discussion panel, “Creating Ember Black,” at the Phoenix ComiCon, and this year she presented a panel, “The Philosophy of Rick & Morty,” and a lecture, “Introducing ‘Life is Blurry’ and Other Comics Created By and About Disabled Artists” at the Phoenix Comic Fest.  She hopes to premiere Chapter 2 of Ember Black next year at the Phoenix Fan Fusion after her grant project is completed in March 2019.

See Marieke’s artistic and literary work on her website, mariekedavis.com, “Life is Blurry” and Ember Black, Vol. I on her Facebook page, Life is Blurry by Marieke Davis, and Ember Black by Marieke Davis.

Blind Beauty Issue 43 Featured Image Description:

The image is a faux fashion magazine cover titled Blind Beauty. Marieke is on the cover looking stunning in her black wrap dress. She has long brown hair cascading over her left shoulder and her bangs frame her pretty face.

Blocks of text superimposed on the photo are: “Bold | She Keeps Pressing Onward,” “Blind | She Has Deeper Insight,” “Beautiful | She Sees To The Heart Of Others”

Additional Images:

  • Image #1: In this photo, Marieke is standing outdoors with her white cane in one hand while she rests her other hand on a wall. She is wearing a dark paisley print dress with a scoop neckline.
  • Image #2: Marieke is standing next to two of her pieces displayed on easels holding her white cane in front of her. Her red dress is sleeveless with a square neckline.
  • Image #3 Life is Blurry comic strip: Two panels, Reality vs. Stereotype, shows how society views blind people. On both panels, a woman is standing at a corner crosswalk with her white cane. In the left panel, she is polished. The right panel shows the same woman as beggar dressed in tattered clothing, with dark glasses, holding a can. Her speech bubble says “Change? Spare some change for a blind beggar?”
  • Image #4 Life is Blurry comic strip: This strip has four panels with two cosplayers talking with one another.
    The conversation:

    • Dracula cosplayer: “Wow! So, you’re blind? Are you supposed to be Daredevil?”
    • Maria: “I’m the Silk Spectre. Y’know… from Watchmen? I’m also not totally blind.”
    • Dracula cosplayer: “Still, shouldn’t you be Daredevil? You’d probably relate to that character better.”
    • Maria: “I like Daredevil, but he’s not exactly realistic… lots of people don’t get that.”
    • Maria: Blind and visually impaired people aren’t super-human. And we don’t need to be super-human to be super. I mean, I’m good at hearing cars, but that’s about it—“
    • Dracula cosplayer: “LIKE DAREDEVIL?!”
    • Maria: “I’M NOT DAREDEVIL!”

Connecting With Marieke Davis On Social Media: