Thursday, March 3, 2011

A Little History

It occurs to me that perhaps more of a personal introduction is necessary.  While many of you have known me since childhood and know the history of my blindness, many of my old school friends hardly knew I had a disability at the time.  I hid it well.  Or, at least I tried to.  Whether or not I was terribly successful is up for debate, I suppose.

I was born to parents who are both blind.  My mother’s blindness is not hereditary, caused by oxygen administered when she was born that should not have been given to her.  My father is to blame for my blindness.  Okay, not really, but it is his genetic contribution that caused my retinas to be weaker than most.  For the first decade or so of my life, my left eye was much stronger than my right.  Around the age of 9 or 10, though, the retina in my left eye decintigrated, and my right eye strengthened to compensate.  Doctors attempted to repair the retina in my left eye, but were unsuccessful.  For the next several years, my vision was relatively stable, hovering around the legal blindness cutoff point of 20/200 acuity.  What this means is that what someone with perfect vision can see at a distance of 200 feet, I could not see until it was 20 feet in front of me. 

High school days arrived, and, as is the case for every incoming freshman known to man, adjusting to the hierarchy of popularity was a nightmare.  I was never part of the in crowd, but had my little circle of friends who accepted me.  As much as I appreciated that, though, I never trusted any of them enough to admit that I was blind, or had any sort of disability.  Most of them knew I had vision issues, that much was pretty obvious, even to the most unobservant teenager at my school.  I did poorly academically my freshman year, barely scraping by with passing grades.  I blamed this on depression at the time.  I still believe it was a contributing factor, but the depression stemmed, I now believe, from the fact that I couldn’t see as well as my friends could.  Even growing up with blind parents, I wanted so badly to fit in with everyone else that I denied there was a problem.  As a result, I refused to ask for help when I needed it, and regret that to this day.  My saving grace the first year of my high school career was a young woman by the name of Tracie Smith.  She was a brand new member of the Franklin High School faculty, fresh out of school herself.  She was my biology teacher, and I adored her.  She was the only teacher who really took the time to know me, and she subsequently got me involved in mentoring incoming freshmen the following summer.  She also took me on as a teacher’s assistant for first period, as motivation to get me to school in the first place.  I truly believe she is the reason I managed to pass my freshman year.

Fast forward a couple more years, I jumped from school to school, finally dropping out in my junior year.  I was 17 years old.  My dad remarried, and moved across the country from Oregon to Wisconsin.  Since I was living with him, I was uprooted and moved across the country as well.  I left my friends, what few I had left, my familiar city, everything.  I remember sitting on the couch in front of the windows, reading the fifth installment in the Harry Potter series, and realizing that I had to take off my glasses and get my nose right up to the page to read the book.  From that time on, my vision steadily, albeit slowly, deteriorated.  I fought it, moving back to Portland after only a month in Wisconsin.  I refused to use a cane, until finally I relented and started carrying it with me.  I only used it at night though.  I could still see just fine during the day.  I was right, everyone else was wrong.  I was 18, healthy, and didn’t have a problem.  I thought I could hide my cane if I used it at night.

Fast forward another 3 years.  On my 21st birthday, I went to a state convention of the National Federation of the Blind of Wisconsin, of which my dad was president at the time.  I met the savior of my 20’s, Pam Allen, and her husband Roland.  Pam was, and remains, the executive director of the Louisiana Center for the Blind, and Roland is one of the cane travel instructors.  That meeting was in November of 2006, and, by the end of January 2007 I was making my way southeast on a Greyhound bus to Ruston, Louisiana.  After an 18 hour delay in a disgusting bus depot in Amarillo, Texas, I finally made it to Ruston.  Except that I made it there minus one of my suitcases.  Naturally, it was the one with all my clean clothes.  Three days on a bus did not leave me feeling particularly clean and sparkly.  Eventually I did get my bag back, and I started the journey to confidence, independence, and adjustment to my blindness.  I learned how to use a cane properly.  I learned to use adaptive technology.  I took, and passed with flying colors, the test to obtain my GED.  I improved my Braille skills exponentially.  I learned home ec skills.  I took a wood working class.  I completed a final project in shop, designing and building a coffee table that still sits in my house as we speak.  I met the man I would marry.  I travelled to Baltimore, Maryland to mentor blind teenagers in a week long camp focusing on science, technology, engineering and mathematics.  And I did most of this under sleep shades, so as to learn to do everything non-visually.  The end of August arrived, and I did not finish the program.  I left a mere month before I would have graduated.  I felt, and still feel, that I had gotten everything out of the program that I needed, and I was starting to burn out in a serious way.  To this day, nearly four years later, I do not regret my decision to leave early.  Some people ridicule my decision, but, as the saying goes, those who mind don’t matter, and those who matter don’t mind.

So now, here we are, years after, and I’m a married woman of 25, expecting my first little hellion.  There is a possibility that she will be blind, and she will likely face many of the same challenges that I did growing up.  But hopefully, she will be smarter than her stubborn mom, and realize that the first step to succeeding in life is accepting her challenges, and meeting them head on.

Wednesday, March 2, 2011

An Introduction of Sorts

Well, since you all know me already, I guess a self introduction isn’t really necessary.  For those who don’t know, though, my husband Robert and I are expecting our first child, a girl, in July of this year.  We are extremely excited about this, though the classic first time parent fears bubble just below the surface.  Will we be good parents?  Will we screw our daughter up beyond repair?  What if she hates us?  However, these are not the things that worry us the most.  Our biggest struggle will undoubtedly be our blindness.  Not that this will inhibit our ability to care for our daughter, and any future children we may have.  The struggle I speak of is the societal one.  The general public are severely under-educated when it comes to disabilities, and blindness is at the top of that list.  People fear blindness above terminal illnesses.  They can’t imagine getting out of bed and successfully dressing themselves without sight, let alone raise a child.  We will undoubtedly be faced with challenges ranging from the question of how do we change a diaper? To a social worker showing up at our door responding to a concerned citizen who saw us out walking with our daughter either in her stroller or in a carrier of some sort, assuming that because we’re blind, we should not be out and about independently, especially with a child in tow.

So, I created this blog to discuss the challenges that present themselves to us on a daily basis, both in the privacy of our home and out in the public eye.  Raising a child is never easy, but tack a disability on top of the every day chaos of child rearing, and you’ve got yourself a full plate.  It’s unlikely that I’ll update here much in the coming four months or so, until Miss Haylie Elizabeth makes her arrival.  I may make posts regarding prenatal appointments and such, but those are pretty routine and don’t deal much with blindness as an obstacle.  The goal of this blog is to educate everyone, sighted or blind, about how blind people raise children.  Everyone makes mistakes, and I’m sure we’ll make our fair share of them ourselves. 

In closing, I’d like to make the statement that there are no stupid questions.  If you wonder how we do something as blind people, ask.  It’s much better to ask and be educated than to keep your questions locked up and assume, possibly incorrectly.  I promise I won’t get offended.

And now, it’s time for this Mama to be to get her tooshie in bed.  Good night.