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 7^th 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.