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Education Paves Way To Limitless Life

Education Paves Way To Limitless Life Featured image description is in the body of the post.

Education Paves Way To Limitless Life

Receiving a devastating diagnosis is never easy. Being a parent of a child who’s the recipient of the diagnosis is especially difficult. As parents, it’s our job to shelter and protect our children from harm. The line between protection and a life without limits becomes blurry when we are raising children with disabilities.

A key component in advocacy (even parenthood) and diminishing fear is knowledge through education. The following lightly edited article was written by the mom of 3-year-old Arthur. She shares his blindness journey and how her and Lingga Arie (Arthur’s dad) are preparing him for a life without limits.  (Here is the Indonesian version of the article)

“Arthur has the opportunity and the right to play, learn, socialize, and move like other children in general. We do not limit it even though conditions are limited. We believe that someday, the work we do for him at this time will make Arthur go beyond its limitations to infinity.”

~Ranny Aditya

Greetings From Indonesia: Arthur’s Story

#1 Arthur image description is in the body of the post
#1 Arthur

Hi, my name is Ranny. I come from Yogyakarta, Indonesia. I will share the story of my son named Arthur.

A very long and extraordinary journey when awarded a child who’s born prematurely. Nobody asked, nothing hoped to happen. But whatever power when God wills. Babies born small with low birth weight, only one of the many problems that we found.

Arthur, he is our first child and a boy who was born prematurely. Arthur was born on January 24, 2016, at 30 weeks’ gestation, birth weight was only 1500 grams. He will only be 3 years old and he will spend a lifetime being a person with disabilities because of his premature birth.

Retinopathy of Prematurity (ROP), is one of the risks of prematurity that must be borne for life because blindness is permanent. Yes, he was diagnosed blind when he was 4 months because of the ROP stage 5. In fact, if detected earlier his vision could have been saved.

Not an easy diagnosis that Arthur got. Various types of medical examinations followed. In the beginning, Arthur is suspected of retinoblastoma (cancer of the retina). This diagnosis meant his right eye would be removed and replaced with a prosthetic eye, while the left eye would be treated with chemotherapy.

Luckily, we did not immediately agree with the doctor’s advice. The next day we took Arthur to Jakarta (taking an airplane 1 hour), to get a second opinion. We visited several hospitals, and finally, we met the right doctor, who diagnosed Arthur with ROP stage 5. Arthur’s retina was totally detached―blindness was permanent because of the damage in the retina.

#2 Arthur image description is in the body of the post.
#2 Arthur

When Options Are Few

The doctor said there was no hope to save Arthur’s eyesight. And the expected outcome from surgery was very small because his retina was completely detached. At that time the doctor gave me a choice:

  • The first choice, bringing Arthur to Japan for vitrectomy surgery with very little hope, or even risk worsening his current vision.
  • The second choice is to educate Arthur to be independent and move like other children in general.

We took the second choice because our financial condition at that time did not allow bringing Arthur to Japan for eye surgery. Moreover, doctors say the results of surgery can also risk worsening his current vision. So, we better save the money for education and preparation for Arthur’s future. But we are still grateful, Arthur was “only” diagnosed with Retinopathy of Prematurity stage 5, not retinoblastoma which is life-threatening.

Drooping, angry, sad, denial, we have passed all of that. What we are doing right now is to focus on preparing and educating Arthur to be stronger in facing life against the world. Arthur has the opportunity and the right to play, learn, socialize, and move like other children in general. We do not limit it even though conditions are limited. We believe that someday, the work we do for him at this time will make Arthur go beyond its limitations to infinity.

Arthur’s presence became a lesson for us, to be more grateful and interpret this life. We believe that God is never unfair to His people.

See the ability not the disability. Because it’s a time to focus on abilities not disabilities.

#3 Arthur, Mom & Dad image description is in the body of the post.
#3 Arthur, Mom & Dad

Information Continues To Strengthen Communities

In my country Indonesia, it is still far behind other countries regarding facilities for people with disabilities.

Luckily there is a small community accompanied by observers of blind children and also educational consultants from Perkins School for the Blind. We named it the “baby community”. Its members are parents who have blind children. There we learned how to teach our children to be able to be independent and grow well.

We also often learn from other countries’ websites because the source of information in our country is very limited. It is still far behind other countries, especially on how to educate blind children who are still young. In my opinion, the most important thing is educating children at an early age, because it will be a provision in his life in the future.

I hope we can create a world that is friendly to people with disabilities with accessibility, infrastructure, education, health, and social environments. Because the role of the government alone is not enough, but social life in the community must also support the existence of persons with disabilities.

For parents who have children with special needs, whatever the conditions. never give up! Look at how your child is struggling, you must always be with him.

Following Arthur’s Story:

Education Paves Way To Limitless Life Featured Image Description:

Arthur is laughing with his mom and dad as they pose in front of a multi-colored wall. Both smiling parents are holding Arthur between them with dad stretching out his son’s arms. 

Additional Images:

  1. In this photo, Arthur is standing in front of a field of brightly colored flowers. He looks absolutely adorable in blue printed shorts, print tee-shirt, and sandals as he examines a yellow flower with his right hand.
  2. This image, a meme created for “International Day of People With Disabilities,” shows Arthur standing in front of a wood-paneled and glass wall. The phrase at the top of the meme says “Even I only see the world with my heart, I’ll show you my ability than my disability.” He is dressed in a red tee with khaki shorts and white sneakers. 
  3. Dad and mom are standing close to one another, with dad holding Arthur in his right arm. They are in front of
    the campus of Arthur’s parents, the Fisipol Universitas Gadjah Mada (Faculty of Social and Political Science).
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Charise Moore | Blind Beauty 64

Charise Moore Featured image description is in the body of the post.

The following edited piece was written by Charise Moore on an Instagram post. I was thrilled at the thought of sharing this because it’s full of wisdom and really challenges us to think about how we view people/situations. Sometimes things aren’t as they might appear. Where people are concerned, let’s check our assumptions at the door and ‘listen’ for the entire story.

Charise Moore | Blind Beauty 64

#1 Charise Moore image is described in the body of the post.
#1 Charise Moore

I can’t see puddles most of the time until I’m stepping in them. But yesterday during the flooding I couldn’t see that my street turned into a river. I wanted to SEE the water so I did what most blind and visually impaired people do I FELT it.

As I was standing there deep in thought my mom snapped this picture. It looks super creepy but I loved it. My shorts are uneven, my shirt is too big and I clearly don’t match but I love how she captured just a small moment of my everyday life with RP. So raw and vulnerable. 

I was 15 when I was diagnosed with Retinitis Pigmentosa (RP). Yes, I don’t “look” blind (whatever that means) but I am and everything I do takes more effort than you will ever know. I’m also awaiting the diagnosis of my deafness as I’m now deaf/blind. It looks like I do everything with ease because I’ve had years of practice. Years of having two different levels of vision and now I’m blind with hearing loss.

Currently, my vision is 20/300 in one eye and 20/40 in the other. And here is what I deal with on a daily basis:

  • I don’t have depth perception,
  • limited peripheral vision,
  • blotchy central vision,
  • completely blind in the dark,
  • dim lights cause eye strain,
  • flashing lights cause eye pain,
  • and I can’t see street rivers but I can still see. 

Even if I need my other senses at times to fill in the gaps, and I may miss something the first and fifth time I’m not complaining. Because with or without vision I am BLESSED.

Blind Beauty 64 Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Charise Moore’s image on the cover is black & white. Charise is standing in the street in her bare feet under an umbrella while it’s raining. 

Blocks of text superimposed on Charise’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 Image:

This photo is a close-up three-quarter profile image of Charise. Face devoid of makeup, she’s a natural beauty with a golden honey complexion. She is wearing a white tank top and has a black wristwatch on her left hand which is resting lightly against her face.

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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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Improving Humanity By Respecting Differences

Improving Humanity By Respecting Differences Featured Image is described in the body of the post.

Improving Humanity By Respecting Differences

Improving Humanity By Respecting Differences Featured image description is in the body of the post.
Me In My Favorite Color Combo

Today I saw one of the silliest Tweets I’ve seen in a while. The Tweeter has a blind relative which in turn makes them an authority on blindness. Their knowledge of blindness was so impressive I was shocked to learn I can’t do all the things I’m doing. Well fry me in butter and call me a catfish!

Please forgive my sarcasm. I actually felt a little bad for the Tweeter because the Twitterverse tore them apart. Me? It wasn’t worth my time responding

There’s actually some truth to the whole wisdom and age thing. I know this to be true because things that would have previously set me on fire just aren’t worthy of my attention. It’s not to say that this person’s opinion didn’t matter it may have had it been expressed as such. However making wild assertions that blind people aren’t capable of this, that, and the other, well, what was the point?

One of the benefits of belonging to a marginalized group is it gives you a broader perspective. I happen to belong to a few:

  • African American
  • Female
  • Over 55
  • Blind
  • Short

Even though I belong to these groups I’ve never thought of myself as marginal. This doesn’t mean that I’ve always been treated equally to others, who aren’t among these groups, but I digress.

One Of A Kind

What I have a hard time understanding is how we can’t see that each of our experiences is unique. Let’s say you and I share the same medical condition yet one of us couldn’t function like the other what does that mean? I give you a hint: nothing.

The word ‘unique‘ is defined as “existing as the only one or as the sole example.” So if each of us as individuals is one of a kind why do we continue to compare ourselves against one another? Why can’t we just embrace ourselves as who we are and be done with it?

Please correct me if I’m wrong here but I thought as a species, humans are the same on a biological level. However, the beauty of being human lies in our complexities. If siblings from the same background turn out to be polar opposites what does this mean for the rest of us? 

None of us knows everything. I think if we could slow down, listen a little more, and respect one another we’d be a little better off. One thing I’ve learned in recent years is to approach life and people with an open mind. I remind myself that no two people in the same situation are going to react the same way. And you know what? That’s okay. 

I believe now more than ever that to improve humanity we must change the way we perceive one another. 

Improving Humanity Featured Image Description:

Two transparent bluish human skeletons on a black background with anatomical features (brains, intestines, etc.) 

Additional Image:

A throwback tri-collage of me standing in front of my counter with my white cane. I’m wearing a black & white striped v-neck sweater with a black pencil skirt (with gold accents). I’ve paired the outfit with black suede knee-high boots, silver statement earrings and a pixie cut wig.