Leave the Acting to Hollywood: Embracing the Authentic Self and Blindness

Image of yellow post it note with red push pin with
the words "OUT SICK" and a sad face.

Once again, I must apologize for the lapse in writing...  You guys, living in Minnesota right now is like living in a petri dish full of the flora and fauna that make up nightmares scarier than any monsters under the bed.  The Toddler spent the vast majority of the month of February sick.  She missed three WEEKS of preschool, I had to pass my volunteer commitments off to someone else for the month, and I cancelled every Braille class I had planned to attend.  I made it through the Toddler's three weeks of Sick unscathed and then, as she returned to preschool, BAM, it was my turn!  I can't complain though, the forecast for today shows a high of FIFTY-FOUR degrees, in February, in MINNESOTA, and my sniffling, sneezing, coughing, stuffy-nose, watery-eyes self WILL be outside!

That all has nothing to do with today's post, other than to apologize for my status incommunicado.  This week while I've been feeling under the weather, I've had some seriously amazing opportunities to "meet" new people.  A friend began blogging her adventures as a new mama with a disability, which you can follow here, and I couldn't be more thrilled!  She's a super-cool chick, a strong woman, and mommyhood looks so perfectly beautiful on her!  Yep, she has a disability, and her perspective and experiences will be a great addition and insight for others to learn and grow from, and to contribute to the world of advocacy, ability, and parenting.  While I was busy sniffling and sneezing, some really cool things happened!

Me, Picassa (my retired guide dog), and one of the
Blue Men in Las Vegas.  Few can remind you that we're all
meant to be unique and impact this world in our own way
than the BMG.

Meeting new people and growing new friendships has a way of reminding me of where I've been, how I've gotten where I am today, and the long and sometimes painful road it took to get here.  Throughout my childhood and adolescence, I was a far different version of myself.  When I was really little, I didn't give much thought to my differences in appearance, or whether I was sighted or blind.  In elementary school, I didn't make friends very easily, I was shy, and while I didn't have the self-awareness to know it then, I lacked self-confidence.  When I began as a new student in second grade, I didn't step out and try to make friends.  I sat alone on the playground, and as fate, and the kindness of one incredible kid would have it, one of the most amazingly confident, beautiful people I would ever meet came up to me and asked me to play.  It is amazing to me to look back now, as a strong, confident, bold woman, and remember how little of that was present in me, and how much of that was present in her, all that time ago.  I don't know if she ever realized how much her role in my life impacted me--as we were growing up, over all those years, I remember looking up to her, admiring her confidence and leadership, coveting it even (We went to parochial school, I never heard "Thou shall not covet thy best friend's confidence!").  As much as I admired her, I had to take my own path to find those things for myself, and it took many years, and so many experiences, for me to find that.

As a child and teenager, most people didn't know I was blind.  Sure, they knew I was "different", the white hair kind of gives that away.  But, my blindness, nope.  They may have known I couldn't see as well as they could.  But, I didn't use a white cane, I hadn't been introduced to assistive technology or the alternative techniques and skills of blindness, and past the point of early elementary school, access to large print became less and less available, so I did more and more of my work at home, where I could lean as close to my books as I needed to and squint my eyes as much as the smaller and smaller print demanded.  I participated in everything I needed and wanted to, acting like I wasn't nervous when visual tasks were involved, trying not to worry about being hit in the head with a ball, pretending I wasn't afraid that I would miss my spot in a gymnasium or performance and embarrass myself in front of a huge group of people.  I was scared to cross the street until I was in my early 20s and attended Adjustment to Blindness Training (ATB), which means that when I went for walks around our neighborhood with my kid brother and sister, THEY were the confident ones, and when they said, "No cars!" I hoped and prayed they were right!

I was one hell of an actress.
I was one very scared actress.
I was one very lonely actress.

The amazing group of friends I had in high school in Illinois.
My family moved to Minnesota when I was a junior in high school.
The childhood BFF is the furthest left in this photo--she's stayed just
as awesome and has only become more beautiful over time!

The thing about being an actress, instead of being your own, perfect, different, authentic self, is that it's a ridiculous amount of effort and an awful lot of work, and fear, and worry.  And the longer I acted, the more I believed the lie that my differences, my abilities, my blindness, and myself with all of these things as part of who I am, weren't perfectly and wonderfully made.  Further, I had built a community of friends, family, and acquaintances who, when they learned I was taking several months away from "normal life" to attend ATB training were..... Confused.  Years later when I chose to work with a guide dog, and would encounter and reconnect with a friend from my childhood or high school years, they would ask if my sight had worsened.  But, those several months, surrounded by other blind people, learning that I could do everything I needed and wanted to do, gave me the confidence I needed to explain these things, to answer their questions, and to realize that it was my exceptional acting skills (hah!) that had resulted in their confusion and curiosity in the first place.

I didn't attend a full ATB training program, rather, I spent a summer between college semesters learning how to navigate and travel independently with a white cane, cook and manage household and independent living tasks without my vision, utilize computers and technology with assistive technology, access books in audio and electronic formats, and I began learning Braille.  I lived in an apartment in a busy and lively part of Minneapolis, and  That time in my life was instrumental.  It was necessary.  Though I didn't know it, that time in my life would be the beginning of me becoming "me"...  Confident, strong, happy, ready to take on and experience the world and all that was to come, "me".  The "me" who knew that my albinism and my blindness are just pieces of me, just like my silly sense of humor, my quirky and kind of sick love of crafting, cleaning, and organizing, my constant love of learning...  Embracing my authentic self has been so much better than acting ever was.

Embracing my authentic self led to embracing life and love.
Nothing could be better.

Hello, My Name Is...

Pink and white "Hello my name is" label

I realized the other day that in the time since I began this blog, I've shared a few craft ideas and projects, some information regarding blindness and my opinions around advocacy and "inspiration", but I have not shared much about myself, my cause of blindness, or my story.  Some of that will be shared over time and made evident through related posts, but I wanted to take a minute to share a little bit about myself and my story, especially with a number of new people following the blog.  I don't know if I will end up reaching more readers over time or not, and I'm perfectly fine with that.  My hope is that I may reach even one person in a similar situation, or one parent raising a blind child, who my story may resonate with.  It is only through sharing our strengths and our struggles that we may gain strength from one another.

I hold many roles in life.  I am a wife, mother, daughter, sister, friend, and advocate.  I love reading, writing, singing, the arts, crafting, and creativity.  By profession, I am a vocational rehabilitation counselor and have worked with the general population (people with all disabilities) and the blind population (solely serving blind, visually impaired, and Deaf-Blind individuals).  Currently, I work within our home as a stay at home parent.  I am sensitive, hard-working, compassionate, determined, and fiercely independent.  I am forever in search of growth, development, and learning--striving always to become the very best "me" I can.  I am also blind.

My guide dog Megan and I while attending a gala fundraiser
for a local blindness skills training center, Vision Loss Resources.
I am wearing a formal black dress and pearl necklace and Megan
is seated next to me in harness and wearing a pearl necklace.

So, here's the medical low down:

My blindness is due to a genetic condition called "Oculocutaneous Albinism".  In common culture and media, you may have heard of a person with albinism, or you may have heard someone being referred to as an "albino" (more on that later, but I highly suggest not using that term to refer to people).  Hi there friend, that's me!  If you break it down, this means that my skin, hair, and eyes are affected by a lack of pigmentation.  As a result, my skin is very fair, my eyes are a light blue/gray, and my hair is very light blonde.  Contrary to the suggestion of popular media, people with albinism have neither red eyes nor magical powers (too bad really, it would be beyond awesome if I could snap my fingers and have my kitchen clean itself!).

Photo of my parents and me when I was very young.   You can see
that my parents both have normal pigmentation.  I am the only
person in our family line with albinism as far as we know.

There are different types of albinism, something research has only shown over the course of the last 10-20 years, so there is a great deal of variety in both physical presentation (hair, eyes, and skin shades) as well as a large spectrum of visual impairment.  There are individuals who have only Ocular Albinism, in which case the lack of pigment is only present in the eyes--otherwise they have normal pigmentation of the hair and skin.  The spectrum of visual impairment with albinism is incredible to me.  I have friends who have very little visual impairment and are able to drive and safely function as a sighted person.  On the other end of the spectrum, I have friends who have only light perception and some shape recognition, while this is very rare, it does happen.  My visual acuity falls between 20/200 and 20/400.  I am "legally blind", a term originated by the Social Security Administration defined as:

1.  Reduced central visual acuity of 20/200 or less in your better eye with use of the best eyeglass lens to correct your eyesight; or
2.  Limitation of your field of view such that the widest diameter of the visual field in your better eye subtends an angle no greater than 20 degrees.

Definitions are great and all, but most people ask me what "legally blind" means, their question of course referring to "how" I see, and how my residual vision functions.  I would caution you that visual impairment and blindness have so many causes and interactive factors that the answer to this question is entirely individual, and it is very difficult to explain.  I have never seen out of eyes that function correctly, so I have no period of time of perfect eyesight with which to compare my eyesight.  With the medical description in mind, they say that what someone with 20/20 vision can see from 200 or 400 feet away, I would need to be 20 feet away in order to see.  That seems an inadequate description though as well because even 20 feet away I suspect what I see is blurry and very non-descript compared to someone with 20/20 eyesight.  I have substantial photophobia, to the point that, if I am outside on a sunny day or I am walking through a store with fluorescent lights, I typically cannot keep my eyes open, sometimes even with sunglasses on.  My vision is also very poor in darkness with periodic lights (an example would be night time in a residential neighborhood with street lamps and outdoor house lights).  In those conditions, my residual sight is rendered useless.  When conditions are such that I can see, what I see is typically lacking detail, and I suspect blurry in comparison to what someone with 20/20 vision would see.  My functional vision also declines as the day goes on and my eyes become fatigued.  Those who are close to me say that my nystagmus (repetitive, uncontrolled movements of the eyes) is a tell-tale sign when I'm becoming more tired as my eyes move more as I get more tired.

Me, dressed up and ready to go to a fundraiser
for our local library with a theme based on
Mad Men.  Hair, makeup, and my blue rockabilly
dress were all chosen to compliment the theme.

While I've been blind since birth, I didn't learn most of the alternative techniques and skills of blindness until I was in my late teens and early twenties.  The phrase "times change" is so true--when I was a child, kids with albinism were given large print, seated in the front of the classroom, and otherwise taught to function as a sighted person.  There are many problems with this, not least of which is that it was difficult and dangerous.  Difficult in that it took me substantially more time to complete homework assignments because I was straining to use my vision.  Difficult in that I frequently had terrible headaches and neck pain due to poor posture while trying to read and the strain on my eyes and body while trying to use my vision.  Dangerous in that I have no idea how many times I fell or ran into something because I didn't see it.  Dangerous because my eyesight is unreliable and there I was relying on it for things like crossing the street.  Dangerous because this expectation of passing as a sighted person set me up for many years of faking it, pretending I could see better than I could, hoping I was crossing when it was safe instead of knowing it was, low confidence, and shame around the fact that I was blind, shame that kept me from using the tools of blindness regularly even when I was given them.  I don't want this to be misunderstood--my parents and educators did what they thought was best for me.  The access to information, community, and advocacy that parents today have was not present when I was a kid.  My parents did the absolute best they could with the information and professional guidance they had at the time.  If I had been born ten years ago, it is very likely that my parents would have been encouraged to teach me the tools and techniques of blindness, simultaneously offering me access to large print and visual materials.

As it was, my parents never allowed my blindness to result in low expectations.  They expected inclusion and full participation, responsibility, proficiency, and high academic performance.  They expected me to strive for my highest potential.  By maintaining high expectations of me from day one, my parents set the stage for success in all areas of my life--including as a blind person.

So, welcome to my world!  I realize this is by no means a thorough introduction, but I will continue to share over the course of the next few weeks!

Until Next Time,

Vertical rainbow striped background with white letters spelling "Nicole"

Meggie Miyagi: Guide Dog Lessons Beyond Wax On, Wax Off

Female black lab, Megan, sits in harness looking at the camera
with a focused, serious expression on her face.

My Guide Dog, Megan, is a tiny pocket puppy filled with power.  In our five months together, it has become clear we are quite similar--she is me, on four paws. She is sassy, spunky, playful, and curious. She loves to explore, travel, and experience new things.  She's very smart, thinks things through, takes her work very seriously, and once in a while, she gets really anxious and scared.

As a new team, you are working to build a relationship. This beautiful, expertly trained, furry ball of energy enters your life, and you begin to get to know one another--not just who you were--the dog and the girl--but who you are, two together, the team.  Every day, each route, and every new experience you share together helps you become a team.  Unlike getting to know a new friend, you don't have words--you learn from one another and about one another through the leash, harness, touch, movement, and body language. You begin to recognize and sense how your guide is feeling--happy, excited, serious, focused, anxious, concerned, even afraid.  If you are lucky, you get to observe and experience your guide developing relationships with others as well:  other dogs (pets and guides), friends and family (including their puppy raisers), and their trainers and others who have cared for them. And if you really pay attention you realize that our dogs can teach us so much more than we think. Everyday I learn from them, but these are a few things they've tried to teach me...

1. Your success doesn't impede my success--don't hold one another back, help one another move forward. Help one another grow.

Megan and her best guide dog friend, Samurai, sitting in harness
on a break during a route together.  Both look lovingly up at the camera.

2. It's ok to be afraid sometimes. We are ALL afraid of something.

3. Good friends make all the difference. Let them in. Let them know you. Let them see your fears.

4. When life feels just a little too big and scary, a friend by your side is the best medicine.  Watch out for each other.

Megan, Picassa, and the Toddler watching with great anticipation
as the Tween gets home from school.

5. Play!  Have fun!  Romp around with your friends. Cuddle with the ones who love you. Give hugs.

Sammy (left) and Megan (right) laying on the floor out of harness after
romping around playing together for the first time.

6. Be a little naughty. (Just a little.)  An occasional jump up to hug your person when you're in harness. An occasional sniff of the pee-mail along the sidewalk as you're guiding your human. Inching toward your best friend when you're both working to say hello, I love you, I'm thinking of you. It's ok to be a little naughty. Life is better when it's lived out loud.

7. Be grateful. Tell them you appreciate them. Tell them you love them. Tell them how they make your life different, better. Tell them they make YOU better.

Megan (left) snuggling in blankets with her sister, retired guide dog, Picassa (right)

Our dogs, they may not communicate verbally, but if we pay attention, if we show up, we have so much to learn from one another.

Much love,

Rainbow image with white letters "Nicole"

My Sightless Vision for Sweet Tooth Satiation

I have a friend who makes ahhhh-maaaaay-ziiiiiing cookies!  We're talking, knock your socks off, insanely adorable, so cute you don't want to eat them but so yummy you're practically yelling, "GET IN MAH BELLY!" as soon as you see the FedEx guy has dropped them off by your door--THAT kind of amazing!  She made and decorated ladybug sugar cookies for the Toddler's first birthday--they were red and black polka dot perfection!  Last Halloween, she sent me a dozen of her Halloween cookies, and I shamelessly ate 2/3 of them.  They're just THAT good!

After consuming my eight very Halloweeny cookies, I chatted with this friend and said, "You should make guide dog cookies!  Wait, NO, you should make BRAILLE cookies!".  I figured I would submit an order for such scrumptious tactile cookies in the near future....  

And then, somehow, sometime, the crazy crafty side of me decided it would be a good idea to try it myself!  Why NOT, I thought!  It'll be FUN, I thought!  Nevermind that when the Tween turned 6 and wanted one of those Barbie cakes with the "real" Barbie in it where the "dress" is the cake--I had to do some serious dress patching and repair through the use of heaps of icing so big I thought we would ALL be zooming through the house like the Flash after Happy Birthday was sung and the cake was cut and consumed.

But, I did some reading, and I decided, "No fear, Nicole....  It's a cookie...  Worst case scenario, you get to eat some really ugly sugar cookies.  I gave it a shot!  I made a batch of cookies as gift for the retirement of a guide dog training supervisor I respect a great deal.  I figured if they didn't turn out, no harm was done, he didn't know about them anyway--SURPRISE!  But, they turned out pretty well, especially for my first attempt with making and decorating sugar cookies with anything other than a store-bought tub of icing (true story).  My apologies for the lack of fancy setup for these photos, but I was really focused on the task and trying to do just a little better with each and every one.  But here they are, my first-ever attempt at guide pup cookies.  This batch included guide dogs in harness, guide dog puppies in training, dog bones, and hearts (some with the letters "GDB" and others with paw prints).

First-ever attempt at guide pup cookies:  yellow, chocolate, and black labrador guide dogs in harness and puppies in training (wearing green GDB puppy coats, green frosted hearts with "GDB" and paw prints in white, and dog bones in brown and white.

I felt really good about this attempt!  They weren't perfect by any means, but I felt like I had done pretty well for my first try, and certainly, I felt I had done far better than the days of my Barbie cake aka mountain of icing.

I asked for open and honest feedback--and several people gave me their feedback.  I am a guide dog handler but I am not a puppy raiser, so some of their feedback simply had to do with the details on the puppies in training.  They also hoped that I might be able to figure out a yellow icing that would work for the yellow labradors.  In retrospect, they do seem pretty boring with the sugar cookie as their yellow color and the icing of their harness or puppy coat as their only icing.

I realized I really, REALLY enjoyed doing this!  And, I figured that as with everything, I would get better with practice.  I had a friend ask if I would make these for her dear daughter for Valentine's Day--so I said of course and it was time for round two of Project Super Sweet Guide Pup Cookies!  I figured out a lot of things between Super Sweet Guide Pup Cookie 1.0 and 2.0.  I'll post an actual blind chick tutorial soon, but for now I'll just say that even with learning a lot so far, there is still MUCH to learn, but I rarely back down from a challenge and I see perfecting these cuties as a fun and creative challenge right now.  Also, in decorating the cookies, there are definitely some non-sighted techniques that I've been employing, and these techniques often differ from the methods of the sighted decorators I've been learning from.  With creativity and patience, we can find ways to almost anything as a blind person--just doing it a little bit differently.

In addition to the guide pup cookies, I also prepared to work on some Valentine's cookies for my daughters' teachers--I decided I would like to send them heart shaped cookies with red or pink royal icing and I wanted the words on the cookies to be in Braille.  The smaller cookies would simply say, "love" in Braille, and the larger ones will say "love is blind" in Braille.  I've only done a couple of the Braille cookies, but even in their simplicity, they are my absolute favorite cookies so far!!

Top row:  guide dog puppy in training cookies (black, yellow, and chocolate labradors.  Middle row:  guide dogs in harness (yellow, chocolate, and black labradors).  Bottom row:  two heart shaped cookies covered in green royal icing with two white paw prints on each.

Heart-shaped cookie iced in red royal icing with Braille spelling "love".  The Braille dots are made with dark pink and light pink edible pearls.  

I'm hoping the special people these cookies are going to will enjoy them as much as I've enjoyed making and decorating them!  Here's to a very happy and super sweet Valentine's Day ahead!

Until Next Time,

Vertical rainbow strips with white handwritten text spelling "Nicole".

I'll Be Right Here

The only sounds outside of the hum of the refrigerator are those of Evelyn breathing and the occasional jingle of the dogs' tags as they adjust position. In this moment, all are quiet, and, all but me, asleep.

To my left sits a pile of folded laundry so tall I would have to stand up to see over it. There are dirty dishes in the sink, because the dishwasher is full and running. There are toys on the floor, coloring sheets and crayons covering every inch of the coffee table, and as Evelyn lies here snuggled up on the couch, I know that the to-do list won't change much today.  Whatever was to be done today will be left to do tomorrow.

Because when your baby girl is sick and she looks at you with tousled, sweaty hair, weary eyes, and rosy cheeks, and says in a hushed tone, "Mommy, will you lay here and sleep with me?", you let go of  the pesky expectation that your house should be just so.  You let the folded laundry sit; it can be put away later. You leave the crayons and the paper and the toys all out; maybe you'll play alongside her when she's feeling better.

When that precious little one says, "Mommy, will you lay here and sleep with me?", you set everything else aside, lay down, and respond, "Yes, baby, I'll be right here."

When Being Inspiration Porn is Self-Inflicted

Inspiration Porn....  Any of us who live with a disability or who work in the field of disability have heard this term.  I've been struggling, and I mean STRUGGLING, with how I feel about this for quite some time.  We all have different opinions, and I may lose friends for mine.

How can we (those of us with disabilities) change the face of ableism and discrimination in our culture and society, how can we discourage discrimination in work and life if we're encouraging people to think that our everyday, mundane, basic life activities are amazing??  They're not!  Nor should they be!!!

I go to the store, with shopping assistance or without, not amazing. I clean my house, not amazing. I take my kids to school, not amazing. I work as a lawyer, counselor, author, teacher....  I may be a brilliant blind person, but I'm NOT amazing, courageous, or inspiring for being or doing any of these things!  I'm just a blind chick living life.

My guide dog--she's amazing. It's cool if you want to be inspired by her.
My blind friends who hike all over the world and climb mountains?  They're amazing--but ANYONE doing those kinds of treks is inspiring--not many of us can or would do that!
My paralympian friends...  They're inspiring. Everyday they break down barriers and push the limits of their physical and mental abilities to win the race and demonstrate the abilities others may question.

How can we expect equal opportunities in employment, education, or ANY AREA, if we allow and ENCOURAGE people to think that going to Target is courageous, amazing, and inspirational?!  How can we expect an employer to walk into an interview without low expectations of blind people if we post videos of us vacuuming our homes (as if it's any different than how every other sighted person vacuums their home!)!

Stop it. Please. Just, stop it!

Non-disabled friends--please--I beg of you--DON'T fall into the trap of being awe-inspired by what should be a day to day expectation for any of us. These are not amazing feats.  They are not inspirational. They just, ARE. They are things we all need and want to do in our day to day lives. They are things we do so that we don't run out of toilet paper, or so we can wake up and brew a pot of coffee in the morning.

And blind friends, friends with disabilities. Please, stop. Think about the larger, sweeping, massive ramifications of allowing someone to think your day to day is amazing, inspirational, courageous. Think about the fact that you're not just allowing it, you're encouraging it by creating and posting videos or articles that evoke EXACTLY that response.

I know this is controversial. I know I may lose friends for saying it. I'm sorry--I just can't sit idly by and say nothing when what we all say we want (equally, opportunity, freedom, changing what it means to be blind) is not only hampered by completely downtrodden by what "we" collectively post or create. What you do, say, and post affects any other blind person or person with a disability those you've reached encounter.

What picture do you really want people to see???