Tuesday, March 13, 2018

Out of the Dark





Lately I’ve been thinking deep thoughts about something that will concern my son in the years to come. Ableism. Ableism, in a nutshell, is discrimination in favor of able bodied people.  However unlike all of the other -isms, Ableism is a little bit tricky to define.  

For example, if I were to say that all white people are lazy and bad at math that would be racism. 
If I said that men can never find things around the house (even when said thing is, quite literally, 2 inches from their heads) that would be sexism.

However, if I said that my blind son will never be a heart surgeon – is that Ableism or is it realism? 

As far as I can see it, the other –isms exist to support groups of people who have been oppressed in some way.  They serve to remind us that we are all equal. Black – white – man –woman… despite variations in our skin tones and private pink bits we are all deserve to be treated exactly the same.  It’s only fair, right?

Now we have my son. He has never had any useful sight. A long, long time ago he had enough light perception to tell a window from a wall but now his eyes are made of plastic.

What the fuck is fair about that?

And as far as equal goes, aside from the fact that he can’t see, my son is superior to me in every possible way.  Until you’ve hung out with a blind person you really can’t grasp the extent of the ‘spidey senses’ the sightless posses.  My Little Dude hears variations in music and accents that I don’t hear at all.  His memory is a thing of beauty.  Television doesn’t entertain him much so he teaches himself Korean in his spare time. That's on top of the 4 other languages he speaks. 

I could go on, but you get the point.  My son's lack of sight gives him unique qualities - he is not my equal – he is very different from me.  He’s got such a bright future ahead of him; however there are realistic limits to what he will be able (and legally allowed) to do in this life.

My son's automobile obsession is legend in some parts of the world.  The most heartbreaking conversation I’ve had in my whole life went like this, with my 5 year old son, as he was riding a Tonka Truck down a hallway in a hotel in Cali, Columbia. It was in the week leading up to his first surgical procedure – the one where they took his left eye.

Gabriel (speeding down the hall*): Mom! Look at me!  I’m going to be a race car driver one day!!
Me (massaging my heart but in a sing-song tone):  No you ain’t!  No one’s gonna hire a blind guy to drive their car, you silly old thing!
Gabriel (in a 5 year old moment of reckoning): What do you mean, Mommy?
Me (headed for the minibar in the room):  Well, baby. You know your eyes are broken.  And in a couple of days they’re going to take that one that hurts you all the time and replace it with a special lens.  You are never going to see and blind people aren’t allowed to drive cars because it’s dangerous to drive when you can’t see the road.

Gabriel had stopped driving his car by then and was very quiet for a long while.  I was uncharacteristically solemn.  I didn’t crack a joke, or try and get a giggle out of him.  It was a very heavy moment.  It almost killed me but it was the best thing I’ve ever done.  I can honestly say that I have never given my child one shred of false hope.  Years from now - when he’s cruising around in his Google car or looking’ around with his iEyes - I’ll be laughing with delight while I talk about how wrong I always was.  I will joyfully eat every single one of my ableistic words.  If those things don't happen for him, well...it ain't no big thang.

As you can imagine, people with disabilities might take against my opinion on this matter.  I’m ok with that. My opinions have inspired some lively debates from some of the blind members of the Parents of V.I. Kids support groups.  In one such debate, a blind individual brought up the fact that it’s unfair to tell blind children about the things that they can’t do, because some parents let their sighted children have wild, unrealistic fantasies.  I believe the example was of a blind child was told that he couldn’t be a soldier while that child’s sighted brother was supported in his desire to peruse a career as a Christmas elf.  Whaaaat?  I guess I’m just too realistic for such whimsical parenting.

I don’t want my son to spend one unnecessary moment wishing for things he can never have.  If he had low intelligence, I wouldn’t encourage him to be a rocket scientist. If he was fugly I wouldn't encourage him to be an underwear model.  You gotta play to your strengths.

I started this blog while Gabriel and I were flying home from Cali after that first surgery.  Not only did he lose an eye, he lost a little of his innocence.  He experienced physical pain I can’t even imagine and he also began to realize that being blind is kind of a big deal.  I’d always told him that his eyes were broken and almost everyone else could see, but he didn’t have a clear concept that that would affect his life until I crushed his race car driving dreams.  It was very sad but I’d do it again in a heartbeat. #NoRegrets

On the flip side of that coin - let’s be honest - there definite perks to being blind.  Gabriel gets way more attention than his sighted peers.  He got to play drums with a band onstage at his 7th birthday party and then they invited him back anytime he wanted to play.  Was it because he’s that good? Little bit.  Was it also because people throw serious coin in the tip jar when a little blind kid is rocking the sticks?  Come on’ son!

And you know what??  I want that for him and so much more.

I refuse to treat my son like a blind person but I secretly hope that every other person he encounters in his life will be extra nice to him – just because he’s blind.  I hope he’ll be offered bus seats and friendly hands to help him when he needs it.  I actually hope that in the future he lives in a world where he has the luxury of getting annoyed because too many nice people try to help him.  I want him to skip to the head of the line and get extra ice cream and get to meet Stevie Wonder just because they’re both blind dudes.  I want those things for him because it seems like that cosmically balances how much it must suck to be 5 years old and realize that the law will not allow you to drive a standard car.  I don’t tell my boy that, though. I am trying to teach him to be as fiercely independent as he can be.  I do remind him how strong he is though. In my humble opinion, thriving with a disability is not for the faint of heart.

Speaking of fainting hearts, be still yours my beloved, loyal readers.  I am about to do something that I swore I’d never do, I'm going to invite you to step out of the dark.  Not-so-Little Dude and I have decided to take our tricks to the interwebs.  I’ve recently received some very kind messages from my fellow parents.  Someone out there thinks I’m inspirational. Another person likes my style and last (but certainly not least) I received a lovely message from a mother who just learned her 6 month old infant will never see his first birthday cake.  She found my blog and I got to tell her that it’s going to be ok and helped her feel a little bit better.  That’s all I’ve ever wanted. Until now... 

The adoration of (not two but) three people has filled me with the heady intoxication of being an internet sensation and I want more.  Come and find Gabriel and I on Instagram. Just follow this link: https://www.instagram.com/lend_me_your_eye/ 

That’s a figurative account name so don’t be sending us your prosthetic lenses in the mail – my little dude has his own baby blues.  And now you can see them for yourself. 

All arguments about ableism aside, I might not be able to change the way our kids see the world, but I will do my very best to change the way the world sees our children.
 



Thursday, February 15, 2018

Eleven


Gabriel Maduro
The first bedroom on the right
Noord, Aruba

Dear Mr. Maduro,

I regretfully inform you that you have not been accepted to Hogwarts School of Witchcraft and Wizardry for one reason alone; Hogwarts does not exist because there is no such thing as the magic that JK Rowlings writes about. By now you know that there are no spells that will turn your boogers into bats or shrink your front two teeth.  You can’t regrow bones overnight, go back in time or cheat death by having the most powerful wand in the world. 

However, if there were a Hogwarts your name would have been written down the day you were born.  Your entire existence is magical to me.  You are the child that I thought I’d never get to have.  You are the boy who lived through the night when the doctors didn’t think you would.  Helping you ‘see’ has changed my view of the world for the better, just like being your mother has changed me for the better. 

I know things aren’t always easy for you.  I know how you struggle to do things that come easily to others, that you sometimes feel left out, that other kids can sometimes be so mean.  I know it’s hard and frustrating and that you secretly wish that there was a magic spell that could fix your eyes but - my darling boy - I also know how very special you are.

I can never tell where blindness ends and my boy begins because being blind is more than a physical characteristic it’s part of who you are.  Maybe if you could see you wouldn’t have an absolute ear for music, maybe you wouldn’t be able to fluently speak 4 languages, maybe you’d be more interested in running around than having meaningful conversations with people, maybe you wouldn’t be you and I love you more that I could ever say.

On this, your 11th birthday, there is no letter coming from Albus Dumbledore but if there was it would tell you that you are a smart, funny, charming fellow and that life has magical things in store for you.  Stay the course, be brave and never forget that you have a small army of people who absolutely adore you and will be cheering you on. You are so very loved and that’s the best magic there is.

 Love, your Mostly Muggle Mom





Friday, October 13, 2017

Seeing Clearly



I read an article called ‘Seeing Hope’ today.  It opens with a teaser of what life is like for three adolescents; Caroline, Cole and Christian who received an experimental gene therapy called Luxturna, which has been able to correct a specific kind of inherited blindness called LCA - Leber Congenital Amaurosis.   Caroline saw her Mother’s face for the first time, her brother Cole marveled when he first glimpsed the stars over Little Rock and Christian saw the judges faces as he knocked their socks off on America’s Got Talent.  They are incredible stories and I was so happy imagining how those kids and their parents must feel.  I can imagine those feelings all too well, because I spent the first two years of my son’s life dreaming one singular dream for him – that one day he would be able to see.

My son was diagnosed with ROP – Retinopathy of Prematurity the day he turned 5 months old.  The doctor who told me that my son would eventually go blind had tears in her eyes and hugged me when she saw the tears spilling out of mine.  In this blog, I chronicle the voyage I had to take to get beyond the darkness.  However, by the time my son was two years old, I had educated myself enough to see the light that manifested itself in my incredible little boy. That light is the only thing my son has ever known because I realized early on that my child was going to be just fine in a world he’s never seen.  My son had shattered every preconceived notion I had about disabled people before he even realized he was different.

From the moment my boy could understand the words that were coming out of my mouth, he has known that his eyes are broken.  He understands that he lacks ‘a primal sense’ that most other people posses.   You know what?  He’s ok with it.  Better than ok actually, he gets better grades than most of his sighted 5th grade peers, has a memory like a steel trap (more for video game cheat codes than when his homework assignments are due) and what they call an ‘absolute ear’ for music.  I look at my son and I feel such ridiculous pride over all his accomplishments.  My heart leaps when I look at how well he’s doing compared to what I thought his life would be like the day I got his diagnosis.  He doesn’t really know that though because, for him, he’s not living a life of disability...he’s just living a life that he can’t see with his eyes.

It has been a long time since I wished for sight for my son.  His eyes are broken beyond the help of any gene therapy.  He was born with a trifecta of eye issues and now wears prosthetic lenses in both eyes so my interest in the article wasn’t personal; like every other parent in my online support group I’ve become an armchair ophthalmologist, so I keep up with the news.

The thrill I felt for the children with C names ‘Seeing Hope’ introduced me to was quickly replaced with another feeling.  Disappointment that began to smolder into indignation and finally burned into anger because of the disparaging way the author portrays the life of blind people.  It seems to me that she thinks the blind can’t be mainstreamed in school, find gainful employment or stand a chance of leading rich, independent lives.  She might not say it directly but that sentiment oozes through ever word and my first thought was: what would my son think should he ever stumble upon those careless words. 

I’d like to think that the child I’m raising would laugh about it and that his only comment would be; ‘How did that kid make it to 13 years old and not realize that rain falls from the sky?’ but I hope he never reads it.  In the world I’ve forged for my son it doesn’t matter that he’s blind and I’d hate for him to be slapped in the face with the harsh realization that there are people in the world who view his life with such hopeless expectations.

Lucy Sirianni is an advocate for people with disabilities.  She’s an amazing young woman, who happens to be blind herself.  She’s an inspiration to so many other people - not because she does what she does while blind, mind you - but because she does what she does with wisdom, grace and poise.  Here is her response to ‘Seeing Blind’:

On Sunday as I was headed to grab a latte from my favorite neighborhood coffee shop, enjoying the crisp fall air and the brief break from work, a young woman ran up behind me and asked me breathlessly if she could "pray for my eyes." 

On Tuesday as I sat in the back of a Lyft thinking over a particularly challenging moment in the dissertation chapter I'm writing, my driver asked abruptly, "isn't there some sort of surgery--for your eyes? 


Today, the FDA is considering approving a new treatment for which some people with my eye condition would be eligible. This is not a bad thing in itself, but it has spawned a host of appallingly ableist postings and articles--articles with nauseating headlines about "seeing hope" that only get worse from there, suggesting that those of us who are blind lack independence, are unlikely to succeed in mainstream school or employment, and (direct quote) "have nothing." 


Blindness certainly comes with its challenges, but it's not something I view as a problem. Being viewed as broken, less-than, limited? Not being allowed to go out in public or scroll through my Facebook newsfeed without being reminded that this is how most others see me, and constantly feeling forced to put my life on hold to assert my worth and abilities? That's where the problem lies. Please: stop doing this. Stop assuming those of us who are blind view ourselves as broken and want to be fixed. Stop assuming our lives are Bleak and tragic. Stop sharing articles that perpetuate these harmful misconceptions; the content may be interesting, but the presentation is intensely damaging in countless tangible ways. 

If you really want to support us, understand that ableism exists. Acknowledge that it's pervasive and insidious and that (like most "isms" in our society) it's something that's instilled into all of us and that we have to work consciously against in others and even in ourselves. Then start doing that work. Some blind people would seek out a change in their eyesight if given the chance; some, myself included, have no interest. Some will be eligible for any treatments that become available; others won't. In short, gene therapy is a fine thing, and I'm happy that my friends who would like to pursue this option will likely have the choice to do so in the not-too-distant future, but genetic treatments will benefit only a relatively small number of blind people. Creating a less ableist, more informed and accepting world will benefit us all.

~Lucy Sirianni

I’m quoting Lucy because she managed to eloquently convey thoughts that I probably couldn’t have expressed without dropping several f-bombs and possibly taking a cheap shot at the author’s writing style, and that would have cheapened the overall quality of this response.  

I will say one thing with unconfirmed certainty, ‘Seeing Hope’ was not written by someone who has any practical experience with blind people.  She seems to be sadly deluded, feeling sorry for people with disabilities and probably imagines blind people living sad little lives, quietly cashing their disability checks and wishing with all their hearts for eyes that can see.  Perhaps there are some blind folks out there that live like that, but none that I know.  If there are and they've been blind since childhood,* I imagine that they were raised by parents who spent their lives wishing for a cure for blindness and lamenting their fate instead of taking blindness as nothing more than a stumbling block along the way.

We live in a world that’s dramatically changing every day.  The technological resources that are available for people with disabilities are equalizing game changers; as are the advances being made in medicine on the genetic level.   If this treatment had been a viable choice for my son the day I received his diagnosis all those years ago, I’ll be the first to admit that I would have sold my soul for it because I, like the author of ‘Seeing Hope’, had been so programmed by society to misunderstand the definition of the word disabled.  I thought it meant unable. I assumed it defined a life as opposed to being one aspect of it.  Though my son might have gained some vision, I would have denied myself my greatest joy in life, being mother of this amazing child who, frankly, wouldn't be the person he is if he could see.  

Here’s my sincere hope that the authors of articles like ‘Seeing Hope’ will take a little more care with their words in the future.  My son’s blindness is not a disease that needs a cure; the ignorance that leads people to believe it is – that’s the problem.



*Being blinded as an adult is quite different from having vision loss since birth and much more difficult to manage.  My statement was not designed to disparage anyone who might be struggling with their condition, please reach out for help if you need it.

Friday, August 18, 2017

A Beginners Guide to interacting with the Blind



A beginner’s Guide to Interacting with the Blind.

Hello, my friends.  Welcome back to my dark pages.

I’ve recently decided to dive headfirst into the dicey practice of cultural appropriation.  No, no…calm down.  I have not taken up Tibetan throat singing, given myself ridiculous white girl dreadlocks* or dyed my entire smurf blue.  What I’ve been doing is immersing myself in the world of the blind.  How have I been doing that?  I’m so glad you asked.  I’ve become a creeper on the interwebs. Yes, people.  I have become a creepy internet lurker…   

Dun-dun-DUN!

I belong to several groups of Facebook (most notably one called Nerds with Vaginas) but also a few other groups that are blind specific.  I have two favorites.  One is called BlindPenPals, which is a wonderful, well organized group where blind people all over the world can meet and the other is Parents of Blind and VI Children – where parents, like myself, support each other.  They are both wonderful groups and I’m grateful for both their existence and to be a part of them.  My inclusion in the blind community is relatively recent and I’ve found it to be an experience that’s moved me to words.

What specifically motivated me to write for you today is a theme I see spread far and wide across all my blind based social media: There are a lot of times that blind people feel left out and lonely.  Obviously, blindness is a disorder that keeps people in the dark.  Unfortunately that statement cannot be taken only literally and the figurative darkness that blind people experience is often not their fault.  It’s on you.  Back before my heart was stolen by a tiny, blind guy, it was on me too. 

I used to be kind of a jerk to disabled people.  Not with deliberate actions of course, but with uneducated indifference which can be just as bad (if not worse).

I have a very clear memory from childhood.  I was about 6 or 7 and my mother and I were in a grocery store.  A woman walked past us wearing leg braces and those metal crutches that fit around the upper arm.  I was staring at her and my mother nudged me and hissed, ‘Don’t be rude’ out of the corner of her mouth.  Once the woman was passed, she explained that that woman was born with birth defects that didn’t allow her legs to grow properly.  She mused about how hard it must for that ‘poor thing’ and reminded me to count my blessings.  I attribute much of my compassionate nature to my mother’s influence but after my own son was born with birth defects, I realized in this particular case her teachings were wrong.  

She called that woman a ‘poor thing’ when she could have called her strong.  Instead of simply telling me to count my lucky stars she could have asked me to imagine my life if I was the one with faulty legs.  Instead of telling me to look away she had a chance to encourage me to smile at that woman with a smile of her own.

Years went by and my intimate life was devoid of people with physical disabilities.  It was ripe with people with mental disorders… but those are stories for a different blog.  In social situations, when I saw a disabled person, I’d stick to the script I was taught as a child: look away, thank God it isn’t me.  I’d feel very uncomfortable and nervous around the disabled.  I never knew how to act or what to say - terrified of unwittingly saying something offensive…so I’d just avoid interaction as much as possible.

Obviously, that has changed for me by now, but I remember how I used to feel and I’m not about to pretend that I’ve always been the advocate for inclusion and acceptance that I am today.  I’m going to use my intimate knowledge of being on both sides of the disability divide and I’m going to try and build a bridge of understanding.   I’m going to focus on the bridge between the blind and seeing people; who will hereafter be referred to as ‘the Sightocentric’.

****

The first thing to remember is that every blind person is well…a person.  At first you’ll get lost in blindness.  This is to be expected, and it’s ok.  Blind people are a little different, I get that.  They get that, too.  The most important thing to remember is that blindness is one aspect of who they are, it does not define them.  Behind every pair of dark glasses, white cane or guide dog there is an actual human being with feelings as real as your own.  And, just like all of the other people in your life, blind people come in various colors, religions, ethnicities, degrees of education and levels of douchebaggery.  Some are funny, some are sad. They can be mad, or glad or bad.

As a sightocentric person it might be awkward to you at first - having interactions with someone who tends look above your head, over your shoulder or at your left breast as you speak to them.  Humans have come to value eye contact as a way of connecting with one another. We’ve come read each other by looking at each other, judge people’s honesty by their ability to hold a steady gaze and realize when people are joking by a certain twinkle in their eye.  Good luck doing any of that with my son.  He eyes are made of plastic and I didn’t spring for the swanky embedded Swarovski crystal lenses that throw off rainbow prisms in the light.**

However, under those plastic lenses is the smartest little boy I know.  He’s sweet and stubborn and funny as hell.  He speaks four languages remembers any video game cheat code he’s ever learned out of his head and plays the piano by ear.  You can’t tell he’s joking by the glint in his eye, but you can hear it in his voice if you know him well.  But if you ever want to get to know him well, you’ll have to get past the fact that he’s blind.

I’m going to help you do that in 4 easy steps.  Just send 20 dollars (US) to my paypal account and I’ll send you my revolutionary new e-book: 

A Beginners Guide to Interacting with the Blind. 

I kid, I kid…here we go.

Step 1 –Respect the stick/ Don’t spoil the dog

If you see a blind person with a service dog there is just one thing you need to remember: That is not your dog.  Say it again, not your dog! 

One of my friends gets irate because a man in her building sneaks treats to her service dog, Trixie.  When my friend confronted him about it, he denied giving the dog a treat but my friend could smell Milkbone dog biscuits on Trixie’s breath.  Here you have a man sneaking treats to a service dog and then lying about it when he should have simply remembered: That is not my dog.  Guide dogs have trained extensively to be Thomas the Train level useful but that training can be easily undone. You don't need to stress yourself with the training process just remember these simple words: not your dog. 

Also, there is a difference between a guide dog and a companion dog.  A dear friend of mine was brutally attacked by a man once a while ago.  She's fine now, thanks for asking, but emotional scars can run deep.  She has a little pocketbook poodle who had the attitude of a Pitt Bull when it comes to defending her mistress.  She has permission to take her dog into all sorts of places dogs don't usually go, like a guide dog, but that where the similarities end.  Magnolia (the Pitt Poodle) has received no special training, and does not behave with the decorum of a guide dog so my friend knows better than to ever expose an actual guide dog to her hyperactive ankle biter.  Make a note of that, should it ever apply.

White sticks have been the primary mode of ambulatory independence blind people have enjoyed since it came into vogue in France in 1931.  If you ever see a person crossing the street with a white stick held horizontally in front of them while you’re driving your car, you must stop. That is a universal law, that no one ever seems to know – but I’m telling you now.  Make a note of it.  Many blind people come to think of their sticks as extensions of themselves.  They depend on them.  Don’t move them without permission and definitely don’t pick them up and have a pretend sword fight.  If you happen to be lucky enough to befriend a blind person you may get the opportunity to fold a white stick up if you ask nicely.  It’s surprisingly fun. Put it on your bucket list.    

White sticks are very useful but imperfect.  They miss tree branches, low hanging street signs and excitable Poodles.  If you ever see a blind person walking with a cane headed for one of the aforementioned hazards; give them a little heads up.  Just yell, “Hey! Mr. Blind Guy! There is a low hanging branch with a street sign on it that says ‘Beware of Pitt Poodles’ in front of you.  You should move to your left!  Have a nice day!’

I’m being flippant, of course but if you’re ever in a situation where you see a blind person headed for trouble definitely try to warn them.  That being said, we’ve arrived at…

Step 2 – Don’t ever assume a blind person needs your help.

Imagine yourself in your house, late at night.  There’s only the faintest ambient light in the background, you can’t really see but you know the way to the kitchen by heart.  Suddenly, with no warning, someone grabs you by the arm and asks you if you need help.  How do you react?

Blind people are a lot more independent than most people give them credit for being.  If you see a blind person rolling solo, out for a stroll in the park or on the street; the absolute worst thing you can ever do is go up to them and grab them.  Can you imagine that?  You’re walking along, enjoying the breeze and then suddenly someone you don’t know - that you never saw coming, has their hands of you.  As you’re reading these words it may seem obvious, but you’d be amazed at how many blind people are being randomly accosted and frightened by Good Samaritan wannabes every day. 

It comes from a good place, I know it does but it’s not necessary.  If you see a blind person on the street chances are good that they know exactly what they are doing, where they’re going and don’t need help.  Chances are equally good that if a blind person does get confused, they will stop and ask for help.  The following is an example of how that situation might go down:

Blind Person on the street to no one in particular:  Excuse me? I seem to be lost.  Can anyone help me get my bearings?
You (without making physical contact): Hi! Can I help you?
Blind person: Yes, please.  I’m trying to get to 5th Avenue. Which way do I go?
You (without pointing): You need to continue walking down this street for two blocks and then make a left.  That’s 5th Ave.
Blind Person: Thank you!
You: Do you need help getting there?
Blind Person: I’m ok now, but if you’re walking that way we can walk together.
You:  I’d love that.  Hey, will you be my new blind BFF and let me fold up your stick one day?
Blind Person:  Ummm….no.  You just kinda creeped me out and I have to go now.  Thanks for the help. Have a nice day.
You:  Wow.  I never knew blind people could run so fast.  Oh, good.  He turned left onto 5th.

It is very difficult to be blind.  I can say that with more authority than most sightocentrics can muster because I watch my son struggle to do things that come so easily to other people.  The struggle is real, but don’t think for one second that ‘disabled’ means the same thing as ‘unable’.  Helping people is a wonderful thing, when it’s needed.

I’ll be leaving off here for now, but please stay tuned for the exciting conclusion to this post which I will finish writing as soon as you all send your 20 dollars or when I wrap up another project I’m working on, whichever comes first.

Keep it classy, People.


*Ok, there was one time in the mid 90’s that I had ridiculous white girl dreadlocks, but in my defense: Alanis Morrisette

** As far as I know Swarovski crystal prosthetic lenses do not exist but if they did I would totally spring for them in a heartbeat.