Tag: Retinitis Pigmentosa

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Broken Glass From Pushing Boundaries | A Dedication

Broken Glass From Pushing Boundaries Featured image description is in the body of the post.

Broken Glass From Pushing Boundaries | A Dedication

If you happened to come across my ramblings over the weekend I excitedly announced my latest project. CAPTIVATING! a new and soon to be fully accessible digital lifestyle magazine.

In case you missed it, in my attempt to be clever I did a little Coming Soon teaser post. Then later in the day, Digital Magazine Accessibility Experiment IRL went into a little more detail. I was so proud of my accomplishment of being a “cool kid” by using the IRL acronym I didn’t realize until after publication I didn’t define the acronym. You’ve probably already known IRL is “In Real Life.” The first time I saw it I Googled it.

I’m not afraid to admit that I’m seldom in the know when it comes to pop culture, never have been. Case in point, as I was streaming some music while working on the follow-up post, one song caught my ear. It sounded so good I had to play it again and again and then looked up the lyrics. Here I’m thinking “wow, I found a new song”―wrong! I shouldn’t have been surprised that the song now at over 9 million hits came out last year such is the story of my life.

Dancing On Broken Glass

Okay to the point of this post. The song “Broken Glass” by Rachel Platten really spoke to my heart in light of what our team at CAPTIVATING! accomplished. One person in particular, Victoria Claire, made us all look good by creating our sharp logo. I had no idea she was a graphic designer in another life and when she offered to create the CAPTIVATING! logo, I accepted her offer.

#1 CAPTIVATING! Logo description is in the body of the post.
#1 CAPTIVATING! Logo

Vicky has appeared on Bold Blind Beauty several times as we’ve become great friends. The thing that gets me about this lady is her talent. I mean I don’t there’s anything she can’t do. She’s a sculptress, composer, singer, speaker, and if that weren’t enough she surfs, skateboards, and boxes. And, while I don’t like doing this, in this case, I think it bears mentioning, she does all of this partially sighted. Yes, Vicky is losing her eyesight to Retinitis Pigmentosa (RP). Like many of us who experience sight loss, she had to go through some stuff before reaching the point of acceptance. To be clear Vicky isn’t phenomenal because she does these things without seeing, she’s phenomenal because of who she is.

Generally speaking, society has a hard time understanding the capabilities of people with disabilities let alone those who are blind. Like anything else in life when the desire to learn is in place there’s almost nothing we can’t accomplish. I dedicate this song to Vicky and all of my persistent, strong-willed, resolute friends who constantly push boundaries―we are survivors!! Thank you!! Enjoy!

Broken Glass From Pushing Boundaries | A Dedication Featured Image Description:

In this photo, Vicky is sitting, leaning forward, and looking directly at the camera. Her straight blond hair parted in the middle frames her face.  Wearing minimal makeup she is stunning with pink frosted lip color and intense green eyes. She is wearing a sleeveless black dress with a keyhole neckline.

Additional Image:

  1. CAPTIVATING! logo: captivating, is written in white bold All capital letters except for the ‘V’ in the magazine name is drawn with an artistic style font in bold red and looks like a big check mark. At the end of the word, ‘captivating’ is a red bold exclamation mark. Under the text is the tagline “The power and possibilities of inclusion are limitless.”

Victoria’s Social Media Platforms:

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Second Chance After Despair & Devastation

Grabbing Second Chances With Both Hands Feature image is described in the body of the post.

Second Chance After Despair & Devastation

“When Life Gives You A Second Chance, Grab It with Both Hands”

The lovely Nasreen Bhutta, my friend and CEO of Project Starfish America, was recently featured on Bold Blind Beauty. In today’s Women On The Move article, she shares a deeply personal account of love, loss, and second chances. Enjoy!

#1 Nasreen on a porch. Image is described in the body of the post.
#1 Nasreen On A Porch

I never thought I would be a recipient of a second chance even though it’s often said that life gives them out every now and then! Despair and devastation were my constant companions after going through an unexpected divorce and developing a progressive degenerative eye disease. Because of my diagnosis of Retinitis Pigmentosa (RP), I was literally staring blindness in the face. The added stress of becoming a single parent increased my struggles. My thought of the day (really every day) had become, “Why me?”

Trust, loyalty, honesty, affection, and love―all the building blocks of a healthy relationship―seemed broken and forever meaningless. Men lost their charm and were no longer relevant in my life. I was heartbroken, and the awareness I had of my involuntary singlehood permeated my soul.

When a relationship crumbles, it leaves behind a trail of sorrow, bitterness, and emptiness. I hated all of these feelings which were very hard for me to overcome! I was done with relationships especially after everything I went through.  Good-bye, forever!

My focus shifted from my needs to my daughter’s and giving her the best I could under the circumstances. I became a Super Mom. Pouring all of my energy into skate meets, swimming tournaments, Girl Guides, and other meaningful activities to keep her engaged. 

Long Buried Emotions Breathe New Life  

#2 CN Tower at night
#2 CN Tower at night

I never thought a second chance would ever come my way. But it did, many years later, in the form of someone special during a networking opportunity. This individual had an alluring voice, a boyish charm, and a gentle but firm demeanor. He believed in me, cared for me, and respected me. I will never forget the question he asked me that kindled a spark, “Would you like to be friends?” A simple question, but for me, a beacon of hope! “Wow, I can’t believe this…” I thought.

He was persistent with his encouragement and constantly challenged me in different ways. It was not only unnerving, but empowering and thrilling. “Wow, was this really me?”

As our friendship progressed, I found myself opening up more and more. I felt I was regaining the ability to care and trust again. There was something special about him that made it seamless and easy to bond. What I found amazing was my desire to invest my time and energy into this budding new relationship. When my emotions started getting the best of me, I found it to be the most extraordinary outcome. Emotions buried so deep, I thought they would never resurface again! “What’s happening to me?”

The Undeniable Impact Of Acceptance

#3 Nasreen On A Tandem Bike image is described in the body of the post.
#3 Nasreen On A Tandem Bike

Often, the feeling of being “understood” in relationships becomes the main foundation upon which two people form their bond. “We are on the same page, and we understand each other” are the words and emotions most desired. However, in my case, “understanding” and being “understood” wasn’t always the case. At times I just didn’t “understand” him at all. Sometimes I’d just roll my eyes and think “men are so crazy” as his actions, words, and behavior was so puzzling.  

“I accept you as you are” were the words that resonated deep in my soul, the first time I heard them spoken by him! “Acceptance” is a simple word, but it had a profound impact on me. My quirks and idiosyncrasies, my zest for life and overzealousness, and the main one, my disability, were all accepted! “Wow, could this really be?”

This pivotal moment made me realize that love is acceptance and is unconditional. Disability or not, the dawning of a new day had begun. I felt as though the warm sun had shone upon me and all my senses were awakened. I felt positive, and life has purpose once again!

No matter how late in life it happens, lucky are those who get a second chance. It is finally here for me, and I’m ready. If it comes for you, go for it! Don’t think! Just grab it with both hands and never look back. Let’s raise a cup of cheer for second chances. They are priceless!

Connecting With Nasreen:

Second Chance After Despair & Devastation Featured Image:

In this image Nasreen is standing on a patio deck on the shore of a lake in India. Her shoulder length brown hair is softly blowing in the wind. She is wearing a bright orange top with blue jeans and sunglasses. The lake can be seen in the background along with trees, a table and some chairs.

Additional Images:

  1. Nasreen is standing on a partially shaded porch. She is wearing sunglasses, a black skirt with a pretty black & white print top.
  2. As a Canadian resident, Nasreen shares this pretty night shot of the CN Tower illuminated in blue light.
  3. In Nasreen’s third photo she is riding shotgun on a tandem bike statue. This statue is complete with a statue passenger on the rear seat.
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Ginger Anderson| Blind Beauty 61

Blind Beauty 61 Featured Image description is in the body of the post.

Ginger Anderson| Blind Beauty 61

“So many times I want to quit!! But TODAY is the day to begin! This song has brought me through so much these last years. We all have it in us to succeed but often we have to dig deeper than we ever thought possible.”

~Ginger Anderson
Blind Beauty 61 Ginger Anderson image description is in the body of the post.
#1 Ginger Anderson

I cannot say enough good things about the pretty lady I’m going to introduce you to today! I’ve been following Ginger Anderson’s health journey on Instagram and she’s one of the reasons I chose a healthier lifestyle.

Ginger is a wife, mom, knitter, all around powerhouse, oh, and did I mention she’s also legally blind? Earlier this year Ginger began her journey to a healthier lifestyle with a simple decision to just do it. She knew she was in a bad place and also knew she needed accountability. So the next logical step was to find a program to suit her needs. The journey hasn’t been a walk in the park and what I like about Ginger is her transparency about her challenges.

In Ginger’s Own Words

Y’all I am in tears right now!! I am legally blind and I see through a tunnel that is about the size of a quarter and in that tunnel my vision is very distorted and cloudy. I told myself that I couldn’t do the #shiftshop Shop program or #provinggrounds because of my vision and the chronic state of vertigo-like symptoms but you know what??

#2 Ginger Anderson

When @happyhealthyhumble shared Saturday morning before her speech about mindset, that little voice inside me said Ginger you CAN do this!! And I DID it!! It was hard, lost my balance quite a bit, and modified as needed. Tears of joy right now!!! Thank you Amy!!! And thank you @thechrisdowning.

The following video “Today Is Your Day” by Shania Twain is the song Ginger refers to in her first quote:

Blind Beauty 61 Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Ginger Anderson is on the cover in black and white. Her hair is styled in a fabulous asymmetrical pixie cut.

Blocks of text superimposed on Ginger’s photo are: “Bold–She Keeps Pressing Onward, Blind–She Has Deeper Insight, Beautiful–She Sees To The Heart Of Others.” “Real Beauty Transcends Barriers.” “Makeup Trends for 2019–How To Maintain A Flawless Look”

Additional Images:

  1. Selfie of Ginger with streaked brownish/blonde hair at a craft show. I neglected to mention that Ginger has one of the prettiest smiles and it can be seen in all of her photos. She’s wearing a black top and her makeup is flawless.
  2. Six-panel collage of Ginger in various stages of exercise. She’s decked out in black shorts, black sports bra and gray tank with a white headband.

Connecting With Ginger Anderson:

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Pushing Boundaries: Supporting Independence of Visually Impaired People

Featured Image Description is in the body of the post

Pushing Boundaries: Supporting Independence of Visually Impaired People

“I asked him what he envisioned for his future…“I don’t know. I think I will always be with somebody”, he said.”

~Kassy Maloney
Pushing Boundaries: Supporting Independence Image of Kassy is described in the body of the post.
Kassy Maloney

“I… I just don’t like to talk about it”, my student told me. It was our first Orientation and Mobility (O&M) class together. He was about 15 years old with the degenerative eye condition, Retinitis Pigmentosa (RP).

For people with RP, there is a significant chance that they will eventually lose most of their vision. Vision is worse at night, often resulting in night blindness before losing their peripheral fields.

As we sat facing one another in the principal’s conference room, I asked him what he envisioned for his future. His once jolly smile turned into a saddened face. He looked down and suddenly began avoiding eye contact.

“I don’t know, I think I will always be with somebody”, he said. Describing what he thought his night-time travel needs might look like in 10 years.

“Even as an adult?”, I probed.

Here I was, a stranger without a visual impairment, trying desperately to casually bring up the forbidden “C” word; CANE.

There have been many of these instances in my career. I’m a person who doesn’t have a visual impairment, and yet I am pushing boundaries. Their boundaries. The boundaries of what they think they can do; the boundaries of what their family members think they can do. Sometimes I even push the boundaries of the perceptions of what their community members think they can do.

It’s my job to push the boundaries of my students’ independence level and get them out of their comfort zone. That does not come without its own fair share of push-back.

Stradling the Fence of Independence & Pushing Boundaries

Supporting the independence of people with visual impairments when you are not blind yourself is a delicate balance. A balance between knowing when to push those boundaries, and knowing when to sit quietly. When we are new to our students we are still outsiders who have not yet earned their trust.

We know that even though we have no pity for anyone, our sympathy is not empathy. We don’t actually know what it is like to live with a visual impairment every single moment of the day.

Kassy Malone

President Roosevelt once said, “Nobody cares how much you know until they know how much you care”.

Reminders For O&M Instructors

When we aren’t blind ourselves, we must remember a few things when supporting the independence of people with visual impairments:

  • We must remember everybody goes through cycles where they’re dealing with the stages of grief. Even those who have been blind since birth. 
    • We also must remember the student and their loved ones may be on different parts of this cycle at any given time.
  • We must remember that building relationships and trust can take a long time.
    • When we only see a student once a month, this can take a lot of persistence to overcome. We are outsiders coming into their inner circle. Sometimes the pushback we receive is simply because we haven’t yet proven our worthiness.
  • Most of all, we must remember while we’re both cheerleaders and coaches to our students’ independence, we’re NOT the quarterbacks. We cannot do the work for them.
    • We can teach them the skills. We can coach them to make that big play. We can cheer them on from the sidelines. We can even get their water-filled after the game.

BUT, we cannot make the moves for them. Ultimately, this is THEIR independence; not ours.

Reminders For Students & Clients

To our students and clients reading this, there are things for you to remember, too:

  • Remember that we care.
    • Each and every O&M Specialist in this field care about each and every one of you. We may be pushy. We may be bold in our attempts. And we may step on your toes. 

But overall, it is out of a deep sense of caring for you and your independence.

For most of us, the privilege of sight is actually a burden in our careers. We know that even though we have no pity for anyone, our sympathy is not empathy. We don’t actually know what it is like to live with a visual impairment every single moment of the day.

It is our joy to help support the independence of people with visual impairments. And it’s our passion to see every person with a visual impairment live their most independent, successful, and fulfilled lives.

I hope this gives some insight into how we try to support the independence of people with visual impairments. Leave a comment and share your story.
I would love to hear your thoughts on this subject!

Pushing Boundaries Featured Image Description:

Kassy during an O&M session is walking behind her student who is learning to navigate with the white cane. Both brunettes with shoulder-length hair are casually dressed in jeans and flats. Kassy is wearing a black tank top and her student is wearing a green top. Some green foliage and city buildings can be seen in the background. It looks like they just came down a set of cement stairs.

Additional Image:

Kassy is smiling while sitting in a chair with her left arm casually propped against the chair’s back. She is wearing a black cami with a rose-colored skirt and gold medallion around her neck. 

Connecting With Kassy: