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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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Turning Fear Into Motivation For Change

Turning Fear Into Motivation For Change Featured Image description is in the body of the post.

Turning Fear Into Motivation For Change

Visual impairment and blindness is a deeply personal and individual experience. Some people are highly motivated to set goals and regain their independence immediately, while others take it one day at a time. 
Never forget, whatever stage you are in your journey, a compassionate team of vision professionals, O&Ms, and resources are always there to support and help VI people along the way.

~Amy Castleberry

Moving Forward In Spite Of Fear

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

You might think my classmates and professor were playing a vicious trick on me the day I was blindfolded. They led me around the winding corridors of my college campus until I was completely disoriented. Then they left me alone to my own devices.  In reality, it was the first lesson in my master’s degree training program as an orientation and mobility (O&M) graduate student. The first day of the rest of my life.

“I have no idea where I am,” I laughed nervously.

“You will,” my professor replied in a comforting and encouraging tone. “You have all of the tools you need. Just, use your cane.”

Did I mention two of my biggest fears are “the dark” and “getting lost”?

Fear is a funny thing we all confront at some moment in our lives. The nagging tic in the back of our brains, or the aching pit at the bottom of our stomachs. Fear can overwhelm in a flash of frustration and panic. Or, in a moment of enlightened courage, motivate us to actively change our circumstances and rise to the occasion.

#2 Salus University O&M cohort image description is in the body of the post.
#2 Salus University O&M cohort

So, what was I to do? I could stay stuck, remain literally in a corner, and give in to my fearful thoughts. Or, I could choose to move forward and continue moving until I eventually worked my way to my destination.

As I stood against the wall wracking my brain for my next move, I heard my professor’s voice: “You’ve got this. Take a deep breath, make a plan, be systematic.”

Easier said than done.

From Trainee To Trainer

About 30 minutes later I used my long white cane and worked myself out of the corner. I located the stairwell, walked up two flights of stairs, only to take a wrong turn, on the wrong floor. Trapped again, in another corner nowhere near my final destination.

“Not bad for your first time,” the professor said as I pushed away my blindfold. “We’ll have you crossing streets in downtown Philadelphia in no time.”

By the end of that month, my professor was right. I had all the tools I needed and I crossed my first street independently while blindfolded, then another, and then a whole intersection. Eventually, I worked my way through many other environments after that first intersection.

From parks with uneven terrain and dirt trails to riding public transportation in a congested center city. To taking escalators, exploring different departments in shopping malls, and my favorite lesson of all, training with guide dogs! When I wasn’t practicing cane navigation, I was learning to instruct my classmates. Lessons involved traveling systematically, safely, and independently while building their confidence and helping them achieve their goals.

Now, months later, I’m nearing the end of my fieldwork and I’ve worked with visually impaired (VI) children and adult clients. Next, I’ll be moving across the country to train at a Veteran’s Hospital with visually impaired members from our nation’s military.

Reflecting On The O&M Journey

Along the way, I’ve met incredibly diverse and unique people across the spectrum of blindness and VI. People who have welcomed me with patience, kindness, open hearts, and minds.

Thanks to Stephanae, I’ve enjoyed this opportunity to reflect on my experiences and training as an O&M graduate student, and my hope for the future.

Though I’ll never know what it’s like to live on a daily basis with a VI, I’ve learned some important things from my students and the generous VI community:

  1. VI and blindness is a deeply personal and individual experience.
  2. Some people are highly motivated to set goals and regain their independence immediately, while others take it one day at a time.
  3. The return to independence from VI is grueling, hard work. But the journey is supported by a relentless and compassionate team of: 
    • fellow VI community members,
    • vision professionals,
    • teachers,
    • technology professionals,
    • advocates, and
    • compassionate, creative, problem-solvers who are as deeply invested in helping our clients identify resources, overcome barriers to accessibility, and achieve their goals.

Life may never be the same, but quality of life can be enhanced through adaptation, creativity, and the emergence of innovative technologies.

#4 Guide Dogs image description is in the body of the post
#4 Guide Dogs

I am grateful to my classmates, professors, mentors, clients, students, and the VI community at large, for their patience and encouragement along the way. Though I know I will encounter barriers and systems that present challenges to my students and clients, I will always be a seeker and student, an advocate for equality and inclusion, and a warrior against fear in favor of love and light.

What’s Next?

In the coming year, I hope to find my place and purpose in this amazing community, and work hard to make a difference through passionate action. I look forward to serving the community in every and any way I can.

Many thanks to Bold Blind Beauty for allowing me to share my thoughts and experiences. Please reach out to me at any time, so we can connect and continue to educate, overcome barriers, fight for accessibility and independence, and continue to grow and learn as a team.

Connecting With Amy:

  • Instagram: @o.m.amy
  • Email: acastleberry.o.m@gmail.com

Featured Image Description:

This photo is a group of nine O&M students (including Amy) posing with white canes. There’s a Salus University sign on the floor that reads “Celebrating 10 Years.” A couple of students are holding the school’s mascot (Sal the Salamander) and others are holding school pennants. 

Additional Images:

  1. A closeup of Amy with a big smile and wearing dark-rimmed eyeglasses. Her blond hair parted in the center and she has on a black cold-shoulder top.
  2. Amy and five other Salus University O&M students are posed standing with white canes.
  3. Gallery of six photos:
    1. As part of her O&M training, Amy is approaching a set of escalators with her white cane as several onlookers watch. 
    2. Amy is standing on the upper level of a mall next to the railing with her white cane.
    3. This image is a couple of students doing O&M travel on the street.
    4. A photo of three people demonstrating O&M on a wooded pathway.
    5. Amy is kneeling next to a lovely dog who appears to be smiling. 
    6. A picture of Amy and four other students wearing white polos at Seeing Eye Guide Dog Training.
  4. Eight students (including Amy) are posing with three guide dogs. The three guide dogs are sitting on the floor with two students kneeling next to them while the others stand.  
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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:

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White Cane Day Celebrates B&VI People

White Cane Day Celebrates Featured Image Description is in the body of the post.

White Cane Day Celebrates B&VI People

“The white cane is more than just a mobility tool for blind and vision impaired users. It is also a badge of strength and boldness. It allows us to take back our lives, regardless of where we fall on the sight loss spectrum.”

~Bold Blind Beauty

White Cane Day celebrates the achievements of blind and visually impaired (B&VI) on October 15 every year. It also reminds people of how the white cane is an important tool in helping the B&VI live with greater independence.

We are extraordinary. We are able to see the world through a spectrum few get to experience. No matter where we fall on the blindness range we have developed skills from self-care to independent living that allow us to take full advantage of our remaining sensory systems. Among our ranks are poets, ballerinas, teachers, composers, models, pianists, writers, singers, social workers, psychologists, photographers, artists, fashion designers, lawyers, physicians, athletes, chefs, yoga instructors, astrophysicists, chefs, and the list goes on. We chose to soar and continue to thrive beyond physical limitations because we understand there is always a way.

White Cane Day Celebrates Featured Image Description:

Bold Blind Beauty template with fashion icon Abby to the left of the text. Abby is walking with her white cane in one hand and handbag in the other. The image and text are white with a black background. She wears a stylish dress and heels and is sporting her signature explosive hairstyle.