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Embracing Disability Through Self-Expression

Embracing Disability Through Self-Expression featured image description is in the body of the post.

Embracing Disability Through Self-Expression

I’ve always loved fashion and style. So when it came to my white cane I thought why not use it beyond its intended role? Why can’t it help express my inner sense of being, much like my hair, makeup, clothes, shoes, and jewelry?

~Abby
Abby & Gold Cane

Hi Everyone, Abby here! It’s been a while since I’ve last spoken with you. The boss lady (Steph) has me going hither and yon all while working behind the scenes. Today though, I want to talk about a topic near and dear to my heart―embracing disability through self-expression.

During my business trip to the UK, I met up with my friend Vicky (Victoria Claire) to accompany her to Dublin. As an Ambassador for Retina UK, Vicky serves to help people living with sight loss understand life is not over. She shares her message of hope through the 3 A’s―acceptance, adaptability, and accessibility.

Depending on the severity, acquiring a disability at any time during our lives can be a soul-crushing experience. There are a plethora of articles about the fear of blindness and how people feel it would end their life. It’s no wonder when we find ourselves in this very situation we balk and some of us give up. Granted, working through sight loss is a deeply personal ordeal and getting through it can be an ongoing process.

When we lose our eyesight it can feel like a small part of us is dying. Our whole world shifts and like a baby learning how to walk and talk, we have to learn to adapt. Sustaining a part of ourselves that’s familiar yet tweaked to our new life circumstance becomes a lifesaver.

Customized Colored Canes At Home & Across The Pond

For me, I’ve always loved fashion and style. So when it came to my white cane I thought why not use it beyond its intended role? Why can’t it help express my inner sense of being, much like my hair, makeup, clothes, shoes, and jewelry?

While there is some debate on using customized or more specifically colored canes, my canes are an extension of me. I believe what makes blind and visually impaired people stand apart from other cane users is our technique. Our canes are used to help us navigate by probing to let us know if there is an obstacle in our path. 

So it was fabulous meeting up with Vicky, both of us with canes in hand (hers black and mine gold). Both of us noticed a significant difference in how we were received by those around in our respective countries and Dublin. 

Here in the U.S., with the explosion of mobile devices, it seems like people aren’t really attentive to their surroundings in general. According to the National Highway Traffic Safety Administration Research Note “2016 pedestrian fatality count (5,987) is the highest number since 1990.”

In the UK when we were making our way through the airport people seemed to be oblivious to us using our canes. However, when we arrived at the Dublin airport the attitude was very different. It was immediately recognized that our mobility canes were for the blind.

Freedom To Express Ourselves

The hotel we stayed at was very lovely and had good lighting in the room, along with contrasting colors in the bathroom. We visited the Jameson Distillery which was really great and we also spent a lot of time walking. The River Liffey was well paved with decking and a nice and flat walk area for us.

When we went to the NewsTalk Radio Station Studio, they couldn’t have done enough for us. The conference, held in a large and well-lit conference room was very organized. Overall we had a great time in Dublin and I for one cannot wait to return one day soon. Vicky said it best:

The world can become a much more accessible place, somewhere we are all free to express ourselves and we are not stuck in a limiting space.

While I cannot speak for Vicky, I believe she would agree with me that those who choose to use the standard white cane rock as do we!

Embracing Disability Featured Image Description:

A futuristic image of a 3-D wire-frame female body rising through clouds with arms raised above her head. In the background, a silhouette of a mountain range can be seen peeping above the clouds.


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Words: Balancing Realism, Compassion & Hope

Balancing Words Featured Image Description is in the body of the post

Words: Balancing Realism, Compassion & Hope

“Long after your final patient has gone home, somewhere somebody’s life may be falling apart due to the conversation you had with them earlier that day.” ~Fern Lulham

Editor’s Note: The following article was written by an amazing motivational speaker I recently met. When Fern Lulham was born her parents were given devastating news about their precious newborn. 

Dear Doctor Choose Your Words

Image 1 Fern Lulham description is in the body of the post.
Image 1 Fern Lulham

What is the scariest thing about an operation? Is it the pain you might experience? Is it that the procedure might go wrong?  For many people, it is the idea of putting their life into the hands of a doctor. Of course, not all operations are life-threatening.

Not all operations carry with them the risk of death. However, every single operation will involve a threat to their patient’s well-being. And this threat does not just apply to operations.

In what other contexts do you have contact with your patients? Every consultation brings this same hazard. Every appointment presents this same danger. And every single conversation you have with a patient puts their life firmly in your hands.

When we go through a medical process, doctors are legally obliged to inform us of the potential risks. And yet there is one very important risk which is not considered; something which can be just as lethal as the surgeon’s knife. It is our doctor’s choice of words.

Words, when placed into the hands of doctors can be deadly. To patients, their words equal truth, their opinions are facts. Their diagnosis is final and our future is whatever they say it will be. I want each and every one of you to know that you are incredibly powerful people. You might not always feel like it, but for most of us patients, you and your words are everything. Always remember this. You and your words are powerful.

And with that power comes great responsibility. When you are talking to a patient, what are you thinking? Are your thoughts with that one patient in that one moment? Do the words you choose tell that patient that they are not just one more name on your seemingly endless list?

Words & Trading Places 

I would like you to think for a moment. I want you to remember a time when somebody has said something which has really stayed with you. A small collection of words which days, months, even years down the line, you can still hear ringing in your ears. How do those words make you feel?

  • They may be angry words of disappointment or disgust.
  • They may be the words of a bully at school.
  • They may be the encouraging words of a friend.
  • They may be the advice of a parent.

Such words can have a huge impact on our lives and on the way we feel about ourselves. And isn’t it surprising how we can still hear them as clear as day as if they have just been said to us just a moment ago?

Image 2 Fern description is in the body of the post.
Image 2 Fern

Have you ever left a voicemail message and felt self-conscious about the way you sound? Your sudden awareness of the structure of your sentences and things not sounding the way you intended. We do not think about this until we know what we have said can be replayed and listened back to again and again.

When I am speaking to an audience, I am very conscious of the words I use and what impact they are having. Why? Because I know that people are listening. What we don’t think about is that people are always listening. They are listening particularly carefully when it is their doctor who is speaking to them. And everyone carries around a means of recording that information and playing it back at will in their minds. Everything you say is being mentally recorded and, believe me, your patients are replaying it over and over and over again.

Rewind Replay

I know this because I do it myself – for hours! Entire evenings after the hospital visit before, have been dedicated to going through these conversations with a fine tooth-comb. Long after your final patient has gone home, somewhere somebody’s life may be falling apart due to the conversation you had with them earlier that day. For them, it does not end when they leave the hospital. Words which concern them, words which terrify them, words which they don’t even understand. Words which haunt them for who knows how long…

Image 3 Fern & Mr Hamada description is in the body of the post.
Image 3 Fern & Mr. Hamada

When I was only a few weeks old and first diagnosed with a visual impairment, my parents were told: “your daughter will never see.” Can you imagine how that would make you feel as a parent being told this by a doctor? Devastation. Hopelessness. Fortunately, he was wrong and I can see – not much albeit – but I can. Even if I couldn’t though, I’m sure you can think of words of hope and encouragement which may have helped my parents then and which may have helped me hearing my story years on.

These days, I go to the Queen Victoria Hospital in East Grinstead. My parents and I have left that hospital feeling just about every emotion known to man. We’ve had good news, bad news and every kind of news in between. The reason my parents come with me, even though I could easily tell them what happened when I got home, is to hear the exact words which are spoken. We have all come to trust that from my consultant, Mr. Samer Hamada, regardless of the stark medical facts, there will always be words of confidence, compassion, understanding and, most of all, of hope.

The Power Of Hope

Image 4 Fern and Nancy description is in the body of the post.
Image 4

This is the thing we crave whenever we are told of my progress. To know that even if things are not going to plan right now, it doesn’t mean they never will be. To be assured that even when there is not an immediate solution, the potential for a solution is always there.

Mr. Hamada speaks with such passion about his work and is so enthusiastic and excited about developments being made in medical science. This is hugely infectious and makes me strongly believe that he truly wants to make things better for me, as much as I would wish it for myself. It is inspiring and encouraging and gives me a reason to keep going, even when my world is uncontrollably getting darker all around me by the day.

So to all doctors, I say, please think about the words you choose and the way they are spoken because, to your patients, words can really be the best medicine.     

Balancing Words Featured Image Description:

A representation of the medical profession, this photo includes a stethoscope, pen, and open laptop on a white background.

Additional Images:

  1. Fern is a pretty brunette with bangs and hair length just beyond her shoulders. She is wearing a white tank top with a chunky silver statement necklace.
  2. In this photo, Fern is standing at a lectern at a speaking event. She is wearing a dark-colored cold shoulder dress with a silver necklace and ankle boots.
  3. Fern is posing in this photo wearing a sparkling lacy red dress with her consultant, Mr. Samer Hamada. 
  4. Nancy (Fern’s golden lab guide dog), is so adorable as both are seated on the floor. Nancy’s paws are on Fern’s shoulders as she gives her human an affectionate kiss. They are both wearing party hats (Nancy’s is pink and Fern’s is green).

Connecting With Fern On Social Media:

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A Dedication To Advocates A.K.A. Champions

Champion Featured Image description is in the body of the post.

A Dedication To Advocates A.K.A. Champions

Courage
Honor
Attitude
Motivation
Persevere
Integrity
Optimistic
Never giving up

One of the definitions for the word champion is “a person who fights for or defends any person or cause.” I can’t tell you how awesome it feels to work with so many champions (women & men, sighted & nonsighted of all abilities) featured here on Bold Blind Beauty.

“Belle et rebelle” (beautiful and rebellious)

I recently came upon the lovely term “Belle et rebelle” from a blog post. My friends at Green Global Trek recently used the phrase in Postcards from France ~ La Rochelle. When I saw the phrase I immediately thought of this community because we are shaking things up. The following song with the lyrics (below the video) is dedicated to you. Together we are breaking down barriers!

Here’s to all the Belle et rebelle:

Helen KellerAngela WinfieldSusan & Sherri RodgersEmpish ThomasAmy Hildebrand, Libby ThawKaren RowieJule Ann LiebermanEmily DavisonSuzanne GibsonFatmatta WurieStephanie Stephens VanSue Wiygul MartinJennifer RothschildLeigh Anne FocaretaKerry KijewskiJill KhouryChelsea StarkPaul MugambiMaribel SteelMary (Mel) ScottAmy BovairdCharlotte PoetschnerAudrey DemmittDonna HillSusan KennedyHolly BonnerKimberly WhiteTosha MichelleAshley NemethJenelle LandgrafJoy ThomasArie Farnam, BlindBeaderNicole Schultz-KassMara LaurenBecky AndrewsCarla Ernst, NicoleChristie SmithSilvia SeyringerJo Elizabeth PintoMaria JohnsonTaylor PapadopoulosVirginia MazeMegan DarcyRose-Ann LyonsLynne NicholsonCasandra XavierChristina HoltzclawEileen RobinsonDiane KrekMelody GoodspeedAngie RobertsLiz OleksaJill StephensShaini SaravanamuthuBeatriz García MartínNysha CharleneChrissy AntonopoulosBrittany WinnerEmily MetautenIvana TorbicaLizzie CapenerJayd Alex, Mja StæinarrJade RamosVictoria ClaireJennifer DutrowJ RenéeHawkeyeFaith & SavannahSuzanne ClarkeMarieke DavisNasreen BhuttaKathy Keck, Kirsty MajorLisa SalingerCaitlin HernandezAshley MorganLeslie ThompsonTori ClarkMichael RobertsonSherry IngramPortia MasonPenny ParkerPeggy FleisherMatt De GruchyJessica JannengaGlenda HarrisonJennifer Barrille, Laura Sottile, Jessica Marano, and let’s not forget you, our followers and supporters without whom none of this could be possible.

The Champion (Carrie Underwood)

I’ll be the last one standing
Two hands in the air, I’m a champion
You’ll be looking up at me when it’s over
I live for the battle, I’m a soldier, yeah

I’m a fighter like Rocky
Put you flat on your back like Ali
Yeah, I’m the greatest, I’m stronger
Paid my dues, can’t lose, Imma own ya, ay

I’ve been working my whole life
And now it’s do or die

I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion
You’re gonna know my name
You can’t hurt me now
I can’t feel the pain
I was made for this, yeah, I was born to win
I am the champion

When they write my story
They’re gonna say that I did it for the glory
But don’t think that I did it for the fame, yeah
I did it for the love of the game, yeah
And this is my chance I’m taking
All them old records I’m breaking
All you people watching on the TV
You go ahead and put your bets on me, ay

I’ve been waiting my whole life
To see my name in lights

I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion
You’re gonna know my name
You can’t hurt me now
I can’t feel the pain
I was made for this, yeah, I was born to win
I am the champion, oh

Born champion, Luda
The C is for the courage I possess through the drama
H is for the hurt but it’s all for the honor
A is for my attitude working through the patience
Money comes and goes so the M is for motivation
Gotta stay consistent, the P is to persevere
The I is for integrity, innovative career
The O is optimistic, open and never shut
And the N is necessary ’cause I’m never giving up
See they ask me how I did it, I just did it from the heart
Crushing the competition, been doing it from the start
They say that every champion is all about his principles
Carrie

I am invincible, unbreakable
Unstoppable, unshakeable
They knock me down, I get up again
I am the champion
You’re gonna know my name
You can’t hurt me now
I can’t feel the pain
I was made for this, yeah, I was born to win
I am the champion

I’m the champion, yeah
Surpassed all rivals
It’s all about who wants it the most (I am the champion)

Fight for what we believe in
That’s what champions are made of

I am the champion

Songwriters: Brett James / Chris De Stefano / Christopher Brian Bridges / Carrie Underwood
The Champion lyrics © Warner/Chappell Music, Inc, Sony/ATV Music Publishing LLC

Champion Featured Image Description:

Two blue boxing gloves standing upright on a white background.

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Holly Lynn Connor Changes Viewpoints

Holly Lynn Connor Changes Viewpoints Featured Image Description is in the body of the post

Holly Lynn Connor Changes Viewpoints

It’s takes a village to raise a child.
It takes a child with autism to raise the consciousness of the village.

~Elaine Hall

Holly Lynn Connor, the young lady you are about to meet today, is mesmerizing. To give you an idea of what I’m talking about check out this YouTube video of her singing. While I’ve been following Holly on Instagram for some time, it was only recently that I learned her story. I knew she was blind, I knew she had autism, and I also knew she was extremely talented. What I didn’t know was her backstory and how she came to be who she is today. Today, Holly’s Mom, Katie, invites Bold Blind Beauty readers into her beautiful daughter’s life. Enjoy! ~Stephanae

The Diagnosis

1 Holly Lynn Conner image description is in the body of the post.
1. Holly Lynn Connor

On November 22, 2004, Holly Lynn Connor was born in Seattle, Washington with no complications. From day one, we noticed Holly never seemed to look at us and cried nonstop. We were assured by the pediatrician that her eyes were simply developing at a slower rate and not to worry. By four months Holly showed no improvement and was diagnosed with Septo Optic Dysplasia (“SOD”) and Panhypopituitarism (“Hypopit”).

A person with SOD has optic nerves that are small and poorly developed. Instead of having over 1 million nerve fibers from each eye to the brain, there are far fewer connections. Holly is rare in that she was affected in both eyes and could see little to nothing at birth. When Holly was diagnosed, there were minimal online resources and support groups. I felt alone in the world with no answers. To date, there are still no explanations as to what causes SOD.

Besides being blind, at an early age Holly displayed signs of autism (obsessive-compulsive behaviors, single words language, etc.). The combination of being blind and autistic really made for a difficult time, particularly the first 4 years. Until she was three-years-old, she:

  • wouldn’t walk outside,
  • eat solid foods,
  • go anywhere with fluorescent lighting,
  • sleep through the night,
  • wear shoes or any clothing below the knees or elbows.
  • And she cried pretty much nonstop.

Improvements Achieved Through Treatments

When she was four-years-old, we took her to China for seven weeks to receive stem cell treatments. The effect was miraculous. While the treatment was geared towards her vision, we saw a nearly 50% improvement in her autism almost immediately. Roughly two years later, her vision improvements also became apparent. Her vision increased from an inch or two to seeing contrast and movement up to 10 feet away.

Due to Holly’s successful treatment in China, we booked another round of stem cell treatment when she was twelve. This time it was to Panama. The trip to Panama was slightly more abbreviated at only 7 days. Since that visit, she has seen additional autism reductions. In addition, her vision, while still being blind, picks up contrast and movement up to 30 feet.

Two clear-cut examples of autism reduction are the reduction in Holly’s anxiety levels and the willingness to expand her diet. Pre-Panama her anxiety levels were nearly debilitating at times. As is common with most kids with autism, Holly would only eat about 5 things prior to Panama. Though she always objects at least once to a new food, now she eats nearly everything we give her.

Holly Playing Piano With Hands & Feet image description is in the body of the post.
2. Holly Playing Piano With Hands & Feet

Holly’s Musical Prowess

What makes Holly so unique and special is her musical talent, something we discovered at a very young age. When she was only a month old we played a Winnie The Pooh tape and she immediately stopped crying. After that, our house was filled with music 24 hours a day. It seemed to be the only thing that calmed her.

  • When Holly was 6 months old, she began playing the piano keys with her hands and her feet.
  • At age 1, she could count to 100, sing the alphabet backwards, and play simple notes on the piano. It was at this point where we realized she has instant memory.
  • By Age 2, Holly could play any song by ear on the piano.
  • At 3, we discovered she had perfect pitch, vibrato, and she could tell identify keys of songs on the radio.
  • When she was 4 we started piano lessons with a teacher specifically trained for kids with Autism.
  • By age 7, she could recognize and play complex chords on the piano. Holly also memorized and played songs on the piano after hearing them just once.
  • When she was 8, Holly picked up the harmonica and recorder. This was also around the time she started being ok in public. So we attended live theater and kids’ performances every weekend.
3. Standing at Piano image description is in the body of the post.
3. Standing at Piano

A Naturally Born Performer

Holly joined her first choir at her elementary school when she was 9 years old. She also began working with a vocal coach and attended her first vocal/piano classes. The facility worked specifically with kids with disabilities and paired them with typical kids. This year marked her first performance at a summer camp in which they highlighted her singing. The seed was planted for enrolling Holly in musical theater.

When Holly was 10, she had her first piano recital and first vocal competition. She sang opera and musical theater pieces and took 1st place for her age group. Shortly after, we moved to St. Louis for my husband’s job.

Holly started playing the cello in the school’s 5th-grade orchestra program and joined her first formal choir (STL Children’s Choirs). She also was in her first musical, Space Pirates. Being a new endeavor for everyone involved, she did her scenes sitting in a chair..

The following year, age 11, Holly started taking voice and musical theater classes. She was also cast in her second ever show, Seussical. This time she was doing limited choreography and even had a speaking line.

At age 12, Holly was cast in 8 consecutive shows with 3 named roles. The roles included Glinda in Wizard of Oz, Fairy Godmother in Cinderella, and Mama Ogre in Shrek. We also started her in ballet lessons.

Singing, Dancing & Acting

By the time Holly turned 13, it was an even busier year. She:

  • was cast in 10 consecutive shows with 4 named roles:
    • including Queen Victoria in a Little Princess,
    • Mrs. Darling in Peter Pan,
    • Bird Woman in Mary Poppins,
    • and Cinderella’s Mother in Into the Woods.
  • started taking tap lessons,
  • joined the school jazz band playing piano,
  • joined another choir, and
  • wrote her first original song.

That brings us to the present. At age 14, Holly is immersed in the arts 7 days a week when not in school. She is in 3 choirs, 2 jazz bands, acting and dance classes, private lessons for acting, ballet, tap, and piano.

Holly works out every morning on her spin bike. In addition, she also trains weekly with a personal trainer to help with low muscle tone. She is part of a tandem biking club half the year. At any given time she is in 2-3 musical theatre productions. Right now, she’s excited to be playing Medda Larkin in Newsies and Madame Aubert in Titanic.

Holly Continues Blossoming

The last few years of Holly’s development have been life-changing for Holly and for those around her. St. Louis musical theater community has been extremely accepting and inclusive. The directors have all been accommodating and understanding of both her visual and autistic needs. More than that though, the kids she performs with are more accepting than I could have ever imagined. They are always looking out for her and we never worry about her being in a safe space.

Now that she is fully immersed in the arts community in St. Louis and working with such a large number of kids, Holly seems to have friends everywhere she goes. For the first time ever, Holly found a best friend who’s become a huge part of her life. They talk every day, eat lunch together at school, and are in choirs and musicals together regularly. Her friend, Abby, has an effect on Holly which is hard to quantify. Through her friendship with Abby, Holly is learning more of what it means to be a typical teenager. She’s learning how to interact with others on a social level, and how to have empathy. Empathy is very difficult for someone with autism.

Being The Change

On January 1st, 2019 I began an Instagram awareness project, @365withhollyconnor, where I post Holly answering a daily question. Using the book, “Q&A a Day for Kids” by Betsy Franco, followers can learn about Holly’s life. They can also learn how she navigates the world being both blind and autistic.)

Recently, a girl from the local high school approached me. She told me that her twin brother has autism and Holly changed his life.  Peers began befriending him as a direct result of Holly’s involvement at school and her social media presence. Holly is showing it’s okay to:

  • talk to someone who is blind and autistic
  • be friends with someone who is blind and autistic
  • be unique and different

Holly is extraordinarily talented and we continuously keep her engaged with the world around her. Remaining involved in musical endeavors will position her for a greater opportunity for future success in life. Through the many ways she interacts with the world, Holly continues to influence and change how people see her. Hopefully, this will translate into how they see, interact with, and accept people with all abilities.

Holly Lynn Connor Changes Viewpoints Featured Image Description:

In the featured photo Holly is outside under a white event tent playing a baby grand piano. She is wearing a light print dress and her long hair is draped down her back. Her white cane is propped up in front of the piano.

Additional Image Descriptions:

  1. Professional headshot of Holly with long wavy red hair framing her pretty face. She is wearing an emerald green top.
  2. Black & white photo of Holly as a toddler sitting on a piano bench with her hands and feet on the piano keys.
  3. In this photo, little Holly is standing in front of the piano with her arms reaching up to play the keys. She is wearing a tan jumper paired with a white polo shirt and red (with white trim) Mary Jane shoes. Her blond hair is in pigtails.
  4. A photo grid with two photos. The first one is of a theatrical performance with Holly and a number of her peers in costume on stage. Holly and two characters on either side of her are wearing southern belle type gowns. In the second photo, Holly is singing solo holding a microphone. Outdoor photo of Holly casually dressed in a black jacket, jeans, and a white graphic tee. Her hair is pulled back and she has bangs and is also wearing sunglasses.
  5. This photo grid also contains two photos. In the first one, Holly and four friends are standing while posing for the camera. All five girls dressed for dance practice with black leotards and loose tops. Holly is in the center. The second photo is Holly with her best friend Abby. They are sitting on a pile of gym mats and Abby has her left arm around Holly’s shoulder.

Connecting With Holly: