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June Men In Motion | Robert Kingett

Image is described in the body of the post.

MEN IN MOTION

Editor’s Note:

Robert Kingett, he’s Bold Blind and full of Pride. From the moment he was born, he was destined to be an overcomer and a person unafraid to be exactly who he is. In celebration of Pride Month, Bold Blind Beauty is thrilled to introduce you to Journalist and Author of Off the Grid: Living Blind Without the Internet, Robert Kingett.

Born A Miracle

I’ve always been somewhat of a miracle baby, or person, I guess you could say now. I fully embrace it, though, and yes, even the inspirational label that gets placed on me sometimes. I embrace it all because I just simply don’t have time to quibble over a slightly incorrect label.

My miracle journey started in 1989 where I was a premature baby. It’s so wild, because my birth certificate says six ounces. I was born in September. I have no idea when I was actually supposed to be born, but I came out defying all odds from the beginning.

I was born with Retinopathy of prematurity (ROP), as well as cerebral palsy. I wasn’t supposed to walk. I wasn’t supposed to talk either. My mobility was supposed to be very limited throughout my whole life. And, to a certain extent, that’s true now that I’m older, but back then, I did walk, and I did talk. I overcame so much at such a young age. I still had communication issues though. I stammered badly as a kid and still do. Which, ironically, is why I enjoy and embrace writing so feverishly.

On His Terms

I was born in New York but grew up in Saint Augustine FL. I attended the Florida School for the Deaf and the Blind and that’s how my path to adaptive technology and accessibility consulting came to be, but more on that later. I’m probably one of the very few kids that actively refused mainstream school. I rejected it firmly. I hated the thought of attending a mainstream school. I knew I was getting the adaptive technology and mobility training that would help me later on in life. I didn’t want to waste my time advocating for everything under the sun. I knew that advocacy would come later, certainly, in college, so I wanted my high school to be as painless and as inclusive to my visual impairment as humanly possible and I just didn’t see that in a mainstream school.

I knew that society saw me as another worldly being that wasn’t worth nurturing as a disabled person, so I perceived mainstream school to just be an academic hassle. It probably would have done wonders for my social life, but I didn’t care about having an active social life when I was younger. I also didn’t want to be around sighted people unless it was on my own terms because, I believed, that my academics would suffer because I’d be trying to develop social justifications. I thought my energy would be wiped because I’d have to constantly demonstrate to sighted people that I’m worthy of existing and taken seriously. At a blind school, disabilities didn’t factor into my acceptance. 

Another reason why a big part of that unwillingness to fight for a mainstream education was so strong is because I was getting a very accessible education. I also was just trying to get through the day, and to my eventual long-term goal of becoming influential. Even if it was silent influence, I wanted to actively chip away at the social barriers disabled people face on a daily basis.

From Scrapper To Success

My home life wasn’t that great. I was abused, both physically, mentally, emotionally, and otherwise. My mother, who was a single parent, didn’t know how to deal with her own daemons so she took them out on me. She was a heavy drinker and, yes, there would be beatings. I often went hungry, so I absolutely empathize with someone when they tell people they don’t know what real hunger feels like. People will never fully grasp it, I realized, so I just had to survive. Get out. Become as successful as I could possibly be and hope I make a small difference in the world, even if it’s educating someone about blindness or starts a chain reaction that makes things more accessible for many in my generation and beyond.

I developed a strong sense of advocacy in my teen years. I’ve never been good at giving a punchy media bite that goes viral or gets people talking. I knew I’d never be in the spotlight however, I knew my strength was in planning and strategic implementations. Oh, and trickle-down advocacy—chain reaction advocacy, as I call it.

I’m very career-driven, and very focused, which is probably why I’m still single. I’m very proudly gay and or queer. I use those words interchangeably to describe my sexuality. I’m definitely not bisexual though, I’m very much gay. But, often, the men I’m attracted to are sighted and have no idea how to keep up with my career drive. That’s something that will, eventually, slow down I’m sure as I get even older, but for now, I’m very focused. I find the idea of romance and love is just something that I will find when it finds me, and grabs hold of me. That’s ironic because I’m an extremely romantic person. I’m very empathetic but extremely strong, personality-wise. I guess you could say I’m a mashup of imperfections that changes people’s lives in small ways.

The Path To Journalism

My advocacy started when I created the first-ever newspaper for the blind at FSDB. That proved to me that I could give people chances and opportunities if I just kept being persistent. As a result, well, I’m very politically active now. Very progressive. Very forward-thinking. And yes, I’m a proud feminist and trans ally. I knew I had the power to change lives through journalism and fiction, so I began writing. Fiction, advocacy journeys, telling people’s stories. I find that very few people have media literacy skills today. I mean, even in my generation and younger. I read, constantly. I even read mainstream news everybody likes to rag on so much, but again, very few people just simply don’t know how the media works in general, which is why I don’t get into small fights online about mainstream media and agendas and biases and otherwise. It’s all trite ignorance and a complete waste of my time. Besides, I have a socialist revolution to start. Just kidding. Or am I?

My writing eventually created the Accessible Netflix Project, which actually got Netflix to provide audio description platform-wide wherever possible. This was a huge accomplishment, but my work isn’t over with. My real love is books. Especially diverse books, and audiobooks, and the publishing industry. I’m working to eventually make it so that seeing blindness in fiction is common while continuing to be a very strong ally to my fellow minorities.

Unicorns, Cookies & Education

I always find it really weird when someone asks me what my hobbies are. My hobbies are extremely plain and ordinary. Like, who doesn’t like listening to music and watching TV shows with audio description? I know a few people who don’t like reading, but I just imagine them as very confused unicorns and continue loving books and literature. I read, certainly. I watch very dark comedy. I listen to boy bands. I steal rainbow tinged cookies from unsuspecting glittering cats in my spare time. I’m so done with being normal. It’s overrated. 

Ironically speaking, my career path has never been regular, either. I dropped out of college, published a book, wrote for free, did accessibility consulting, became more progressive, posted accessibility rants onto the web, and, finally, became an expert witness for a law firm here in Chicago. I’d like to take this opportunity to tell all the responsible readers to stay in school, even if I loath private colleges with every fiber of my peculiar soul. Seriously. I think education is the most important facet in someone’s life. Encourage reading. Encourage creativity, because that’s what truly makes the world go round.

Image Description:

Featured image is the Beyond Sight Magazine cover. Robert’s photo is on the cover, he is wearing a black tee-shirt with the word “PR💛UD” in rainbow colors. The masthead is teal with “Beyond Sight Magazine” in black text. The dot on the ‘i’ in ‘sight’ is the eye used for our 2020 Year of Vision Campaign (described HERE). There are 2 lines of black text that say “Bold blind and full of” the third line ‘PRIDE’ is in rainbow colors. In the bottom left corner is a teal circle with an illustration of a blind man in motion with his white cane and “Men In Motion” is in yellow text under the circle.

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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).