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Featuring Casandra Xavier

Casandra Xavier sits at a table with a microphone at Perkins School for the Blind, was in the middle of asking a question. She wears polarized aviators. In the background are two people glancing attentively at her while she asks her question. In this photo, her dreadlocks are draped down her back with a heavy, natural brownish-red color. Around her neck is a phone loop for her hearing aids, she wears a crisp white button down shirt with her braille display strap exposed. She was fully aware of Perkins photographer.

“I identify as deaf-blind and was born with blindness and deafness.” ~Casandra Xavier

Casandra Xavier stands in front of the Massachusetts State house side entrance with her long Iowa cane in right hand with her braille display slung at her right side. She has a tent of green and blue dreadloacks carefully turned into a Bantu-knot Mohawk. Her hearing aid matches the color of her hair. Her eyes are shaded with frameless sunglasses. She wears a crisp white button down shirt with a Swedish grey vest and deep grey slacks. In the background is the side entrance of the house of reps in Boston displaying an awesome ancient structure. She posed for state house news reporter.
Photo credit: Sam Doran from statehouse news

When Casandra Xavier crossed my radar on January 3, I wanted to learn more about her. I saw her in a Blind New World article and needed to share her Woman on the Move story. A quick Google search took me to her amazing address to the Massachusetts legislature video. To see advocacy in action, check out Casandra’s video at the end of the post. You won’t regret it! 

My name is Casandra and I go by the ghostwriter name, “CaspHer.” I am originally from Miami, FL but I grew up in Boston, Massachusetts.

I identify as deaf-blind and was born with blindness and deafness. The conditions I have are both separate and just happen to be with me simultaneously from birth. Those conditions are Anophthalmos and Microtia Atresia.

During my academic career, I did not attend Perkins School for the Blind even though I lived one town over. I also live near the Carroll Center for the Blind and was never introduced to either establishment until I was twenty-four.

Currently, at twenty-eight years old I lived twenty-three years of my life trying to pass as sighted and hearing. I hadn’t begun to learn American Sign Language (ASL) until I was almost twenty-six. Since then I’ve developed enough skill to establish a comfortable working experience with an ASL interpreter.

A Course Redirect Changes Casandra’s Life

I studied visual arts and English literature in college. My plan was to remain in the art world since art was all I knew from a very early age. Looking beyond my world of writing fiction stories, digital photography, and tactile art was no-go. That is until I attended the Carroll Center for the Blind in Newton, Massachusetts.

While attending the Carroll Center, I realized I could potentially become a great instructor for the blind or deaf-blind. I learned Braille with ease and quickly absorbed my other blindness courses. I wanted to learn more blindness related practices.

After training at the Carroll Center, I attended Blind Inc. in Minnesota to fine-tune my blindness skills. This helped to reassure me that I would be okay. On completing my Blind Inc. training I learned I was not your typical blind person. I was indeed a proud deaf-blind woman straight out of the depths of Massachusetts!

During training in Minnesota, I lost more hearing! Most people would have fled the scene but I’m not most people. I’m Casandra. I dug my heels in further and rode it out until the wheels fell off with extreme but minor modifications to my training.

Satisfied with what I accomplished in Minnesota and teaching at a center for the blind; I flew back to Massachusetts and dove hands-first into ASL class at Perkins (2015-16). During my first ASL class, I excelled and was ready for the next level. I outdid myself at all other levels as well! I used a pro-tactile ASL interpreter to access information in an extremely visual class. Deaf-blind students use pro-tactile ASL interpreters to gather classroom information. The pro-tactile ASL interpreters use a technique to sign into the students’ hands.

The Student Becomes The Teacher

As I submerged myself into the deaf and hard of hearing (HOH) community, I was presented an opportunity to become an assistive technology trainer. For the longest time, I was totally stunned that something so great would happen to me.

I worked diligently with my students and ensured everyone learned something. While doing all of these awesome things, I was still working on my signing skills which were coming along very well.  I felt it was totally fine to feel proud of myself since I worked and struggled so hard to get where I was at the time.

Though I missed out on learning deaf-blind skills when I was young, I have become an advocate for the disabled and the LGBTQ community. In the past year, I filed some legislation on disability awareness training starting in Massachusetts with intentions of it becoming federal law.

While there are many pieces of similar legislation, mine will stand out because people within the disability community can observe and offer constructive commentary. This will ensure a positive experience for everyone.

I enjoyed the wonderful opportunity working with the Massachusetts State House while bringing this legislation to life. During this encounter last summer, I got to see the inner working of the House of Representatives.

At college, I learned a technique called, “application of knowledge” and I’ve carried it with me until today. I have decided that I would take all of what I’ve learned from the Massachusetts State House and apply it to my work as an advocate in the community. Not only did I use this method while advocating, I’ve also used it as an assistive technology trainer for the blind and deaf-blind as well.

Freedom Of Being Heard

Letting my voice be heard after many years of being left in the dark and forgotten was the best and most encouraging experience ever. The power of exposing my strength was far too good to let go of, so I held onto that exposure and gave myself the title, “Disability Advocate.” I feel I have earned this title and it’s exactly how I want to be recognized. In the past few months, I have been invited to speak at schools in Boston and online podcasts to talk about my story and what I am doing. For a majority of my presentations around the city, I will use an interpreter.

These days, I am still an assistive technology trainer in Massachusetts and still learning additional ASL skills. I am very involved with advocating for and with the constituents of Boston.

Whether I am presenting or not, I always enjoy wearing a fedora hat with or without a necktie from Men’s Wearhouse and crisp white button down. A lot of my friends tell me I look like I am about to perform a music video whenever I dress up. Speaking of music, I enjoy shredding on the electric guitar and occasional karaoke sessions. I’ll be honest, outside of the extreme seriousness, I enjoy going out to gay clubs and having a blast with the drag queens and some friends in downtown Minneapolis.

I hope you enjoyed this trip down story lane.

Thank you.

Casandra Xavier’s Featured Photo Description: 

Casandra sits at a table with a microphone at Perkins School for the Blind, was in the middle of asking a question. She wears polarized aviators. In the background are two people glancing attentively at her while she asks her question. Casandra’s dreadlocks drape down her back with a heavy, natural brownish-red color. Around her neck is a phone loop for her hearing aids, she wears a crisp white button-down shirt with her braille display strap exposed. She was fully aware of Perkins photographer.

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Lynne Nicholson

Lynne Nicholson's image description is in the body of the post. The quote on the image is

“Looking back over my life I realise my challenges have strengthened me even when they overwhelmed me.” ~Lynne Nicholson

Lynne Nicholson, like many of the women, featured here on Bold Blind Beauty made a few comments, followed the blog, and we developed a friendship. Even though myopia or nearsightedness is very common I’ve not met too many people who share this diagnosis and who’ve also lost eyesight. While Lynne and I are fellow myopes we lost our eyesight to two different conditions tied to our myopia.

I learned self-reliance; to trust in my decisions and to know none were final. Finances meant becoming inventive. Sometimes mired in depression, I felt there was no way up and out….. but there was always HOPE.

At one low point during a church discussion on mansions in heaven I whispered to a friend “I’d happily take fewer life challenges and a leaky tent”. I’ve been myopic from childhood – the world in soft focus without specs was normality. June 2016 my optician saw an anomaly. My hospital appointment was for almost four months later. My new specs didn’t improve my vision, a continual soft focus was my new normal.

An Answer In The Form Of A Diagnosis

My immune system already attacked my platelets and at the end of September 2016, I was diagnosed with Punctate Inner Choroidopathy (PIC) also immunity related—injections could slow down sightloss—but eye doctor wanted to check with blood doctor that blood medication wouldn’t be an issue for the treatment, an appointment would follow—urgency wasn’t implied. However, my current blood doctor left that day and it was two months before I saw the new one. Christmas was coming and it wasn’t until the January I chased up the eye appointment as my eyes definitely seemed to be worse. Two phone calls two weeks apart resulted in an emergency appointment (4 months after diagnosis) in which I learn my left eye is beyond treatment. Five weeks later I registered as sight impaired (9 months after anomaly seen).

I struggled to wait for the official help entitled to me nine months exactly after diagnosis I met my ROVI (rehabilitation officer vision impairment). By this time I’d worked out the “in-home” stuff (cooking, lighting, using my smartphone camera to see my surroundings). However, I lacked confidence when out and about since my “dognav” (my pet dog, Tippy) crossed the rainbow bridge. If I got disoriented I panicked without her. I only went out when necessary.

Restoration Of Independence

Then Wanda Power came into my life. She is my wand of power (white cane) with her I have regained my confidence and much of my independence.

I was finally registered Severely Sight Impaired (Blind) 13 months after diagnosis.

Of course, there are times I need help after all my clearest vision is four inches in front of my nose. At arm’s length, the blur is such I cannot recognise my daughter if we meet on the street. If I’m going shopping (clothes, household goods or main food shop) I appreciate the help. If I only have a few items to get (to tide me over to the next major shop) Wanda and I go to my local shops. The hardest thing I find is crossing roads but I learn routes that take me to the safest spots to cross even if it means I am not taking the most direct route.

What I have learned (for myself) through my life experiences is:

  • Going blind doesn’t make my top ten worst things in my life.
  • Life can knock me down but I always get back up.
  • If I really want to do something I’ll find a way.
  • Asking for help isn’t a weakness”

Everything from Looking back over my life to asking for help isn’t a weakness is my submission.

Lynne Nicholson’s Featured Image Description:

Selfie of Lynne Nicholson. She is wearing a red and black tartan type check top. In her own words, she is “looking pretty serious as if the camera is at the right distance for a selfie I can’t see if I’m clicking the button.”

The photo is in boldblindbeauty.com’s WOTM template. Three-quarters of the template contains the photo and in the bottom portion is Lynne’s quote in teal text.

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Rose-Ann Lyons

What am I Doing Now? How is my Life? It takes Courage!!

After losing my Peripheral Vision in a Boating Accident on July 1st, 2008, it has been a long journey. Nine years later, this is “NoW” What I am doing?

I am learning to Curl! I have joined the Kelowna Curling Team for the Blind and I am being Coached by Dan Martel at the Kelowna Curling Rink. I am providing pictures of what my Coach has created in me with one month of coaching in February; then the season ended, and of coaching that started up on October 8th; the season beginning. I have a whole truckload of thank yous’ to my Coach. He has helped me and inspired me; resulting in me developing a “NeW” passion: Curling! I love to throw the Rocks! I love the ride!   

I have previously provided an Article as a Guest for Bold Blind Beauty.  With this subsequent Article, I am elaborating on What am I Doing “NoW”?

It began when I was approached at Christmas, 2016, and was asked to attend at the Kelowna Curling Rink to Curl with the Curling Team for the Blind. It was February 2017, and I had not yet attended at the Curling Rink. What was stopping me? What was I afraid of? I got upset with myself. I decided that I was going to the Curling Rink. It was the 1st Sunday in February 2017, my Guide Dog in Harness, my husband driving and I was heading to the Kelowna Curling Rink. I had been informed that the practice started at 10:00 a.m.on Sundays. It was 10:45 a.m.; Sunday morning, I’m late! but I was on my way.  

I was tempted to ask my husband all along the way to turn around; take me home. Entering the parking lot, I was still thinking about turning around; take me home. “THeN” the truck stopped at the doors. I inhaled a deep breath! I got out! I “NoW” knew there was no turning back! I walked in and was approached and welcomed by such warm, kind, people. I relaxed! No more panic! The “fun,” the “joy,” the “excitement” began!! When I arrived, I was asked what I wanted to do. I have never curled before so I said I was there to learn to Curl with the Curling Team for the Blind. There was one month left before the Curling season was ending. I began learning to Curl! Coach Dan Martell gave me lessons and with his coaching skills and inspiration, I developed a new passion. “Curling!”

It was a huge step for me to take A N D I am now part of something that gives me great “joy.” New team! New friends! An outing in the winter months! I love the game! I am starting in a Ladies League; with one percent vision, in the second week of November; that being twice a week. I love it so much that I will Curl in the Ladies’ League and continue to Curl with the Team for the Blind. Love the game!! Love to Curl!!

 

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Megan Darcy

A 5K Blindy Moment

Photo of Megan looking very happy with herself immediately after aforementioned fabulous 5km. She is smiling for the camera wearing a black ball cap and tank in multiple shades of blue.
Here is Megan looking very happy immediately after her fabulous 5K

It may have cost me a pajama day on the lounge, and some serious toddler treat negotiations with Little (Emily) so I’d have to actually parent. But the cognitive overload and exhaustion was oh so worth it.

Guess who challenged her bad arse self to a solo park run with nothing but a sketchy mental map, a trail cane, a buzzy thing, and a Running Rope on her hip in case she made a friend along the way? Oh God but no sunglasses. Why oh why didn’t I retrieve them from the kitchen bench?

Okay, so technically I wasn’t alone, as my sister and husband were on the course, along with a gaggle of walkers, runners, and volunteers. Which was probably just as well given how inaccurate the construct of my narrative was regarding the route. I had only done the course once before early in the year.

I spent much of my run having no idea where I was, confused about what I didn’t know, relying on the shadowy shapes of the world, whispering of the wind, the footsteps of others, and faith in my madness and mobility skills to guide my path, which meant that passing the blue shirt in front was a risk, because what if I missed the next turn? Which of course I totally did on almost every occasion.

So thank you to all who provided directions when I inevitably needed them. Every stride was fraught with dilemma, and was a fight against evolution. What if I fell? What if I went the wrong way? What if I ran into someone?

But just keep going, because I was having too much fun. My cane in one hand bounced awkwardly in front of me, hampering my form. While the buzzy thing which vibrates when it detects obstacles within a particular range proved useless. I wanted to ditch them both, because they were slowing me down, but how would people know to give me a little more room, or more understanding.

The Charles Bonnet* hallucinations didn’t kick in until about 1500 m, and that is when things got interesting. But still I kept putting one foot in front of the other, and wondered why it felt so hard and heavy, when in my head i see myself as moving with grace, lightness, fluidity, and sweet, sweet synergistic freedom.

Should I stop? Nah because that would suck!

Breathe in, breathe out… Surely the turnaround point is somewhere.

I don’t remember this part. This is more complicated than I thought. Everything looks the same. Where am I? Bla bla bla.

I was pulled from the white noise of my mind when my trusty cane failed at the 3500m mark. I was just considering whether to fold it up and run without it, or… umm… actually there was no or. I mean how hard could it possibly be right? Sure I had no idea where the finishing line was, or in fact where I was in relation to my ambition. But I had this. And this was awesome!

And that is when it happened. That is when I finally made a friend. That is when Charles stopped to ask if I needed any help, and if we could run together. And the rest is beautiful history.

An avid runner, Megan is also a wife, mom, fashionista, and author of Blind Mama. If that weren’t enough, when Meg puts on her entrepreneurial hat, she runs Taylored Thinking, maker of creative fashionable accessories and athletic gear for people who are blind or visually impaired. 

*Charles Bonnet Syndrome (CBS) is a common condition among people who’ve lost their sight. It causes people who’ve lost a lot of vision to see things that aren’t really there – medically known as having a hallucination.