Review: The 33: Pramantha, Part 1 of 4

The 33 Episode 1 CoverHave you been wondering what J. C. Hutchins has been up to since the Seventh Son trilogy came out?

Oh wait. You don’t know who he is, or what that is? Well, that maybe is for another time. I’ll link to it later. Work with me here, OK?

j.C. hasn’t been idle, no sir. He’s been working on interesting things, including a publicity campaign for the recent Fox series “Almost Human”, among other things. He seems to be Mr. Transmedia. That’s a fancy $50 word for things that transcend different kinds of media, like books and games and Internet, audio, and goodness, people who are a lot smarter than I am should probably explain it. Besides that though, he’s been hatching this idea that he brought up way back when he was still updating the Seventh Son trilogy. Now, he’s unleashing it on an unsuspecting public with the first installment, Pramantha, Part 1. This is a four-part story, set in a universe that will have lots more stories, some multipart, some standalone, and, if this first one is any indication, stories that will grab you right away and won’t let go. Kind of like a teleport across the world, except without the puking, but I’m a bit ahead of myself.

Here’s how Hutch introduced the story to me:


The 33 is my new episodic fiction project, which debuts this Friday (Jan. 31). It’s a sci-fi/supernatural thriller series about a group of 33 misfits tasked with thwarting a cabal of baddies keen to jumpstart the apocalypse. It’s The A-Team meets The X-Files, with a dash of Hellboy and Global Frequency added for apocalyptic spice.

Whew!

So how was it? In short, go get it immediately. While it’s a bit of a mystery why it begins the way it does, we don’t start with anyone’s idea of a slow buildup of action or background. We jump in with both feet. This must be a Hutch thing. It’s sort of like starting the first book of Seventh Son: Descent with “The President of the United States is dead. He was murdered in the morning sunlight by a four-year-old boy.” Pramantha begins in similarly dramatic fashion. I was left at the end of the story wondering how the beginning connected, but I’m sure all will be revealed in due course.

This part of the story introduces us to the 33, (or at least, a few of them), just as one of its newest members learns about this secret anti-apocalyptic organization. They don’t deal with things as mundane as religious fanatics and airplane hijackings. Their stakes are higher. A more mismatched group of misfits would be harder to find. With such varied backgrounds and appearances, it’s hard to see how these people are going to interact, much less work together to foil whatever plot they’re assigned to foil, but that’s just the beginning of what I’m sure will unfold in the coming months. For instance, what are their secrets? What was the deal they made with their mysterious…boss? Benefactor? Blackmailer? Clearly, this series has, and will have, lots of layers. Kind of like ogres, except maybe not so nice as the PixR type ogres.

While this first installment is self-contained, as in “Things happen, and there’s a good stopping point”, remember that this is the first part of a four-part story, which will be released a month at a time. You’re not going to get resolution at the end of this installment. There isn’t even a whole bunch of action yet. But this story lays the groundwork and gives us a small glimpse of what lies ahead, should we follow these five maybe odd characters. And what lies ahead promises to be very, very interesting.

You can find out more about the series and buy your own copy of the story in either Ebook or audio format by visiting this page, And if you really did miss the Seventh Son books (really, it was a total of five), along with other original fiction, on this page.

I gotta pay how much to use Facebook?!

Today, GW Micro announced a new product called SocialEyes. This is a piece of software that is meant to give blind Windows users a more accessible, consistent interface to Facebook and all of its features. As you can imagine, discussion of this new offering on the GW-Info Email list was quite heated, both for and against. Some people said that it was ridiculous to charge for access to Facebook, and it would be well to just include better Web support in Window-Eyes to begin with, while others said that those guys should be grateful for the work that GW is doing and quit their gritching. This is a somewhat simplified accounting of the discussion, but it’s the usual sort of thing. Find below my contribution to the discussion.

Hi,

My comments about product naming aside, I guess for better or worse, I’m weighing in, too.

OK, GW Micro asks what people want to see better access to. Consumers (you and me, except I didn’t) respond. GW listens. This is excellent, actually, since GW Micro listened to the needs and wants of their users and put something together to accommodate.

But it’s too expensive! Sighted people don’t have to pay $50 to use Facebook.

Neither do you. What you do have the option to pay for is something to make using Facebook more convenient. You can choose to have that convenience, or not. Yes, convenience. You know those little stores on the corner? Like 7-11, Circle K, Diamond Scamrock, places like that? They’re called “Convenience stores”, and their prices are generally higher than similar or identical goods in a big box store or grocery store. Why? You’re paying for the convenience of not having to go all the way to a grocery store, search the shelves, and get what you want. You’re paying for the convenience of a short drive and a quick nip into the store for a gallon of bread and a loaf of milk. In similar fashion, subscribing to this app, or the Socializer in SAMNet, or GW Connect, can be viewed in a similar way.

Beyond that though, full disclosure. It’s no secret that I work for another AT company, I’m fairly sure that most people probably know which one. Even so, I’m a Window-Eyes user. I’m also an NVDA user. And, of course, a System Access user. And a Mac user. And an iPhone user. And to a limited extent, a Chromebook user. Yep. Fingers in lots of pies. Anyway, all that to say, I have some idea of what goes into making some of this stuff go, especially as concerns things like keeping up with the ever-changing landscape of things like Facebook, things that change on seemingly nothing more than a whim. Keepin up with that takes people. People gotta eat. In our current system of doing things, this means money, and that’s got to come from somewhere. If this was a do once and forget it kind of deal, that would be fantastic, but it’s not. Anyone who’s ever looked at the Facebook site from month to month, even week to week, knows that. So if the product is needed, and enough people see the value in it, it will get bought and maintained and succeed. If not, it will fail, and the developers will go off and do something else for a while. Pretty simple. TANSTAAFL and all that.

Someone, or someones, mentioned NVDA. NVDA is fantastic. It’s well done, it’s matured nicely, it does lots of great things, and it’s free. Let’s be clear though, NVDA is free software in the GNU definition of free. This means that you have the freedom to redistribute it, to modify it, to share your modifications. It also happens to be no cost, or “free as in beer”, but it doesn’t have to be in order to be “free software”. But I digress somewhat.

You’ll note that development of NVDA, even though it’s free, takes money as well. Some of this money is had through grants from big companies. These grants, to some extent, likely also drive the direction it goes (i.e. it will have better support for Adobe Reader because Adobe threw money at them). Some of this money comes from you, the end user, which is why you are asked to donate every time you update. You can choose to, or not, but understand that someone, somewhere, has to pay something. Even if no on pays anything, the developers pay in cost of their time, which could be spent doing something that did pay them. TANSTAAFL, again.

Would I like everything to be free and work for us without any extra effort? Damn skippy I would. In my ideal world, we wouldn’t need companies like GW Micro, Serotek, Freedom Giantific, and the rest, because access would be built in, would not be an afterthought, and would work 100% of the time for all populations who need it. Unfortunately, this isn’t the reality, and it likely will never be the reality. Sure, it’s a lot better now. The fact that we’re even entertaining this discussion, that we can even think about expecting such access, would have been unheard of five years ago. It will likely get even better in the future, and a day when universal access is the norm rather than the exception seems likely to me. (This will present its own set of problems, but this post is long enough already.) And anyway, that day isn’t here yet.

So, yeah. Buy it if it’s useful and convenient for you. Don’t if it isn’t. It’s really pretty simple. Even though I have the Socializer, and even though I use lots of other things, it is likely that I’ll buy it myself, if for no other reason than to have another option, because it’s convenient.

Words That Sound Alike But aren’t

Just posted the below to a blindness-related buy/sell/trade list. People were asking to see it, so here it is…

 

Hi,

Sorry, this is bugging me a little, and I’d really like for people to put their best foot forward. Like it or not, people judge you by the words you use, so it’s probably a good idea to use the right ones, so people don’t misjudge you.

If you’re selling something, that item is “for sale”. That’s s-a-l-e. You may have something to sell, that’s s-e-l-l, and the item you’d like to sell is for sale, that’s s-a-l-e. Of course, you can have a boat for s-a-i-l (well,OK, s-a-i-l-i-n-g, but only if it doesn’t have a motor).

So, I’d like to sail my boat, which I’d like to sell, and I’ll have it for sale at the end of its sailing voyage, but the sail is not included in the sale, sorry. This should make its selling price lower than if I included the sail in the sale. Confused yet? Isn’t English wonderful?

A Note of Thanks to Amazon

I just sent the following note to Amazon, and hopefully it goes to the right place. Last time I sent a note to them about Kindle, it was a lot less happy than this one.

You can send your own feedback to kindle-feedback@amazon.com . Please do, actually. Here’s mine.

Hi,

It’s been a week, and I’ve been remiss.

I’ve been remiss in expressing my sincere thanks for the accessibility improvements for blind readers that have been made in the latest version of the Kindle app for iOS. I’m sure that you’ve seen the excitement surrounding this, and I hope you’ve gotten many notes of appreciation and thanks.

Since I connected to the Internet for the first time 22 years ago (yes, really), I have seen that the Internet could,and would, afford more access to more information to people with print disabilities than we’ve ever had. This has been true, in spite of many artificial barriers that we’ve had to conquer from time to time. But even with as much access to information, not to mention pleasure reading, that we’ve had due to having open and ubiquitous access to the Internet, we knew that there was still much that was off limits to us. Now, with ebooks surpassing print books in popularity, this is a new world. The Amazon Kindle app becoming usable for print disabled iPhone users, it is safe to say without any danger of hyperbole, truly is the beginning of our information age. This is to us a bit like Gutenberg’s printing press, where we have books available to us on a scale that was absolutely unheard of two weeks ago. Even better, it is technologically possible for us to have these books in braille or synthesized speech or large print, as our needs dictate. (The high cost of braille displays is another matter that needs addressed, but I won’t address that here.)

It’s true that we want, and need, access to hardware Kindle devices, not to mention Kindle on other supported platforms, for the field to be truly level. With this recent release, I feel confident that Amazon will indeed deliver on this need. Had you asked me two weeks ago, I wouldn’t have been so confident, but I’m glad that you guys took the time to do it right, instead of hurrying to do it right now. Here’s hoping for more in this vein, although hopefully in a shorter time. I, for one, would love to whip out a Kindle full of books, although, I must admit, I’m very content with a phone full of Kindle.

If you’d like to read my thoughts on the NFB press release about the release (obviously, I have some, and they don’t seem to agree with it by much), you can do so here:

Amazon Kindle Accessibility: What?!

Amazon Kindle Accessibility: What?!

This week, the blind and visually impaired community got a surprise, one that we’ve been waiting for for a long time, and one that, it’s safe to say, most of us weren’t expecting. (This would be why it was a surprise, right?) Amazon announced that its Kindle app for iOS now had new accessibility features, thus making the app usable by blind and visually impaired iPhone users. They also promise improvements to accessibility on their other platforms. You can read about it at this link. I downloaded the app, with a great deal of excitement and anticipation I might add, and it appears to be everything they say it is, with access to not only the reading of books, but also highlighting, Emailing excerpts, notes, looking up words in the dictionary, and searches. In short, this app seems to have done it right, rather than doing it fast.

The day after Amazon’s announcement, I got an Email from this press release. I thought I was responding to an Email list–it was early still, and I was still waking up, but I instead seem to have Emailed instead to either the NFB’s other PR person or to the guy that runs iBooks and the Nook reader from Barnes and Noble. I think, though haven’t looked in a while, that it may well be better than KNFB’s own Blio, which should probably embarrass somebody. So, specifically, what improvements would we suggest?

In this Email, I neglected to mention Kobo or Google Play books, both of which have at least some access features, or at least, work to some extent with commending of a far inferior implementation in 2009, this current press release almost sounds angry that Amazon did anything about the problem.

I’ve played a bit with this newly accessible Kindle app, and it’s good. It was done right. Where’s the acknowledgement of that? Why commend a half-baked effort that is unsuitable for more than the most casual reading on one hand, but practically spit at a stellar example of what can be done on the other? Could it be because Amazon did it without asking for the NFB’s blessing or input first? In fact, it looks like they may not have asked for anyone’s input, as this came as a real bombshell of an announcement with no leaks.

Really, those of y’all in the national office, would a “Good work, guys, thanks” and virtual pat on the back really be that difficult? Would it hurt you so much? It would certainly do a lot to raise your PR standing in the community. Absolutely do not back away from the stance that access to Kindle on other platforms is necessary, even vital. Please don’t. Such access is critical, and we should not rest until we have it. I have no quarrel with that. But would some recognition of a good effort in which you did not have a hand really be so bad?

By way of full disclosure, I am an active member of the National Federation of the Blind. I have been one for over 20 years. Until a more effective membership organization that mirrors my own philosophy of blindness comes along, I expect to continue to be thus affiliated. That said, I fully expect that this post will not make me very popular among the leadership.

Update: The NFB’s technology center has published a review of the Kindle app, which you can read on the center’s blog. I think that the justifications for grading are fair, and I also believe the criticisms are equally fair. As I haven’t tested all these features myself, I have no reason to argue with their findings. I may well have weighted things differently, and I might have been a bit more forgiving for this being their first run at it. I may not, too. At any rate, I have no quarrel with the review, and if Amazon endeavors to improve the accessibility features they’ve implemented, we’ll all be better for it. Watch this space, I guess.

Even so, I stand by my opinion that the tone of the press release could have been more positive and supportive of these initial efforts on the iOS platform, long time in coming though they are.

Update #2: 05/07/2013:

Here’s a link to a different take on how Amazon did with implementing accessibility features. This review is much more positive, and it doesn’t seem to have run into the same problems that the NFB technology center did in their review. While some might say I’m waffling, I also have no quarrel with this review, think its points are also valid, and believe that it was conducted in good faith and as objectively as possible, excitement over access to over a million titles notwithstanding. It’s certainly possible that the reading experience differs between iPad and iPhone, where bugs may exist in one and not the other, and there may also be problems with braille display driver implementations or conflicts. I think all of us will be interested to see how more hardware combinations do with the new Kindle app.

An Annoying Encounter: Be Careful Out There

The more I think about this, the more annoyed I get.

About an hour ago, I had an encounter with someone who came to my door as I was making my lunch. Melanie’s nurse answered the door (interestingly, Fiona didn’t bark, and only Alena heard the knock), and told me that there was this guy who wanted to talk to me about my alarm system.

As we are giving serious thought to replacing our alarm system, I was intrigued. Of course, I was also intrigued that some guy would be asking about this, especially as our alarm system monitoring contract is coming up soon for renewal. It’s one of the reasons we’re looking at a switch, we want a cheaper alternative. We’ve been looking at SimpliSae because monitoring is less expensive and there’s no contract. The disadvantage would be having to replace, not just the alarm panel, but also all the sensors. Still, we’re annoyed enoughwithcontracts and inaccessible touch screen panels that I’m OK with that.

So I go to the door, and there’s this guy. And he says he’s with GE, who manufactures my security system, and starts asking about it. I tell him, yes, my contract is nearly up, and we were looking at a change. After one thing and another, he says he can get me a security camera, as well as cut my monitoring per month by $5, and would I like to replace the touch panel keypad with one that has buttons? He can get us that and the camera for free if I sign up today. Well, of course, after getting pressured into other sign up today or it’ll be gone tomorrow things, I asked him for his card, I’d like to talk it over with my wife and get back with him. He said he was only seeing a couple of houses today, and what’s there to think about anyway? Immediate red flags. I told him, again, if he didn’t have a card for me to get in touch with him, because I wanted to give it some thought, there wasn’t much more to discuss. He said he had one, but he didn’t seem all that eager that i should have it. Eventually, I just said, “I think we’re done here”, wished him a good day, and closed the door.

Matt, melanie’s nurse, told me that he was wearing an APX hat. APX was the company we’d initially got set up with on our contract. Trouble is, they haven’t been APX for a couple years. And he told me he was with GE, not APX or Vivint, the current name for APX. Him telling me that didn’t set right with me in the first place.

So what can I take away from this?

1) Don’t get pressured into anything. If you can’t sleep on it, or if the guy at the door isn’t willing to give you his card or some way to get in touch with him later, that makes your decision for you.

2) OK, even if he says “this deal might not be available tomorrow”, he should still be willing to give you some contact info. But anyway, I’d find anything that’s “sign up right now, I’ll do this and this and that” a little suspect, especially since he didn’t disclose the length of any new contract.

3) Go with your gut. Something felt wrong about the guy.

4) The alarm contract is not in my name, but he called me by name. True, it’s my legal name and not Buddy. He would have maybe gotten this from the real estate records or somewhere? Of course, I sort of noticed that at the time, but didn’t analyze until later.

Anyway, be careful, guys. I think this guy might have had me pegged for an idiot.

A Profound Lesson I Learned With My First Guide Dog

This afternoon on one of the far too many Email discussion lists I’m on, someone posted to remind people getting new dogs that, no, your dog really doesn’t like you yet, and this takes time. He also mentioned where to stick your dog in the car while traveling, but I don’t really want to talk about that. i mention it only for reference purposes, as I bring it up in the below Email that I posted to the list.

—–Email begins—–

While I won’t comment on dog placement in vehicles, after all, we all do the best we can–I mean, leaving the house is a dangerous proposition, as is staying home–I do want to echo what Mike says about our dogs liking us, or not, when we meet them.

I learned what is, I believe, one of the most valuable things I’ve ever heard from my first guide dog class, at another school, lo these 17 years ago. During the lecture preceding our getting new dogs, when we were being told what to expect and everyone found out what everyone was getting, yeah they do it differently there, our instructor, Dan, said the following. This was so profound to me, and so valuable, I think I have it memorized verbatim:

If someone were to ask your dog, he would say that he has no interest in meeting you, much less in becoming your lifelong partner and companion.

Dan went on to say that, because of this fact, it is incumbent upon us, and entirely our responsibility, to make friends.

This is so at odds with the popular literature, all those feel-good books and stories where the dog is looking forward to his life’s work, where he just lives and waits for you, that special person, to enter his life. To learn, in such blunt terms, that this is not, in fact, the case, was a real revelation, even though, looking at it from the dog’s point of view, it made sense pretty quickly.

This, much more than the mechanics of guide work, is what is most important about class, I think. Learning proper commands, foot placement and hand signals, and all the rest, is really pretty easy. The tricky bit is adapting those lessons to a very unique other being, and gaining that other being’s trust and confidence, as both of you get to know each other and learn to, at first, work together, and eventually, love each other. Both hearts are willing in their own fashion, I think, but not in the way that all the fairy tales would have it.

The amazing thing is that this stuff works at all.

Have fun out there, guys.

—-End—–

This bit of wisdom has stood me in good stead through all three dogs. The romanticized thing that we always see, in the kids’ books about guide dogs, even from guide ddog users who write about the guide dog match (sometimes from the dog’s supposed point of view), even in guide dog school literature, is a nice, feel good thing. Sure, we all want to think that our dogs are just waiting their whole lives to meet us. The story we tell each other is they know they have this special purpose, that they know that they’re destined for some greater, selfless life. This is so at odds with reality though, no matter how good it makes us feel to tell each other the story. I’m not sure it serves any useful purpose though; certainly it doesn’t give the prospective guide dog user a real picture of what’s involved. Maybe it makes donors feel good, although I think that how things really work is pretty darned amazing even without the fairy tale. The real story, though not as rosy and full of destiny and misplaced anthropomorphism, really is as interesting, as exciting, and ultimately, as heartwarming, as the fairy tale.

These dogs are specially bred for a particular purpose, it’s true. All the guide dog schools have had breeding programs for decades, where they keep track of health problems, temperament, suitability to the work, soundness of mind and body, all sorts of things. I’m sure that they’ve got charts and graphs and family trees and dogs rated on this or that characteristic. In fact, Jack Humphrey, one of the guys that was instrumental in the Seeing Eye’s earliest days, compiled such a list and published a book with a study on the desirability of certain traits in working dogs. I understand that much of Jack’s initial training and selection work is still the backbone of the Seeing Eye’s work today, some 75 or so years after he finished putting it all together. I’m sure the other schools have similar records and procedures, and I know there’s a certain amount of knowledge shared between programs.

True as this is, however, the dogs don’t know any of it. THink of the transitions they go through in just a couple of short years. At eight weeks or so old, they’re taken away from their mother and go to live with a family. This family raises them and loves them, and new puppy loves the family. This is his world. He forms an attachment to these people, and he learns lots of useful things, like how to sit, lie down, ignore tempting things, stay off furniture, how to behave in public, react calmly to noise and unusual situations. Then, he’s taken way from his family and “goes to college”, except that he doesn’t know that’s what he’s doing. He just knows he’s getting taken from his family. And he eventually gets to know the trainer(s) and kennel staff. And he learns new things. Interesting new things. Interesting new things that he becomes happy to do for these new people. He has no idea that he’s going to meet some blind person and have this greater purpose, he just does these things because it pleases his new pack leader to do them. That he can learn to walk in a straight line, stop for things that aren’t at all natural for him to stop at, learn his left from his right (which, by the way, lots of humans don’t know), avoid traffic and guide a human around obstacles and not go under things that he can but a human can’t, all of that is pretty amazing, don’t you think so?

He may have to get used to new people a couple times before he meets his new partner. He has no idea that he’s going to do these things for this new person, he’s perfectly content doing them for the old person. But eventually, his loyalties do change, and two very different beings learn to work together and act as one. Like I said, it’s amazing that this stuff works at all. Even without the fairy tales.

One might suppose I’m a killjoy. After all, what’s the harm in a bit of poetic license? Far from it, I think these are amazing, amazing animals, and I think it’s important that we celebrate them for what they are, not to mention all of the wonderful and selfless people that mold them into the confident, poised, competent, and just plain amazing guides that they are. As I say, the story is amazing enough without adding in things that just aren’t so.

Of course, the debate rages: do they know that we’re blind, or are they just playing a game, the same game they learned to play with their instructors? I happen to believe they know. Dogs are very perceptive. Some are extremely perceptive and empathic. They all know, though. There are even scientific studies that prove that dogs think they can get away with things if they believe the humans can’t see them. Regardless, I think that once they start working with us, as opposed to the sighted trainers, they do know that we’re blind. Whether they connect this fact with their job, I don’t know. I do know that sometimes a dog that works great for a trainer decides it really doesn’t want to do it “for real”, so maybe they do make the connection.

Regardless, it’s truly amazing stuff. And I, for one, am glad that Leno does what he does, no matter why he does it.

The Budcast: Chromebook Accessibility

I haven’t done one of these in a while, so I figured it was about time.

In this episode of the Budcast, which is un-numbered because I can’t count that high, we look at the initial setup of the Chromebook and the state of its accessibility. Google has asked several people in the blind/VI community to assist with accessibility testing, and I was lucky enough to be one of those.

While there are a couple rough edges, and a show stopper or two (which we don’t get to in this episode), Google has a great start on making the Chromebook accessible. We do see a couple of those “rough edges” in this podcast, and I’m sure we’ll find more. Hopefully though, as time goes on and more of us have our hands on this stuff, things will improve.

As ever, you can contact me via Email or Twitter with any comments or questions.

Enjoy!

So, who’s going to be that someone who does something?

I just posted the following on Facebook:

We are very sad. We found out Andre, the boy we wanted to adopt, still hasn’t been adopted. We still would love to find a family to adopt this 11 YO Ukrainian blind child; we still grieve that we can’t.

Two people liked my status.

I’m not sure what that means. The Facebook “like” button is strange. It could mean “I like this”, or it could mean “This is interesting”, or it could mean “Yeah, I agree”, or “I want to see this later”. Putting that aside for the moment though, it puts me in mind of something, maybe a challenge. Maybe a challenge for everyone, including me.

All the time, whenever we see something awful, or heart wrenching, or unjust, someone is bound to say, “Someone should do something about that.” It might be, “There ought to be a law”, or “How sad, why doesn’t someone step in”, or words to that effect, but it boils down to “Someone should do something about that”.

In our case, it’s adoption. Don’t get me started. Well, except this is my space, and I’ll get started if I damn well please. Generally speaking, when someone or some couple wants to adopt, and I’ve seen this time and time and time again, they want to adopt healthy babies. The younger and healthier, the better. In the case of international adoptions, Ukraine in particular since that’s where my experience is, people want kids as close to 18 month old as possible (because Ukraine doesn’t adopt them out any younger), and with “minor, correctable conditions”. “Minor correctable” basically means that they don’t want the kids with any sort of significant disability, so the kids with missing limbs, CP, kids who need wheelchairs or have seizures, no one wants those. Kids that are older, no one wants those either. Kids who are older and have some sort of disability? Forget about it.

But those kids need families, too. Moreover, they need families because once they age out of the system, they will not have the opportunities that the “healthy” kids have. You think it’s bad for people with disabilities here? We’ve got it pretty good.

Our adoption facilitator told us once that he didn’t like it when adopting parents talked about going over to “save” some child. He said, “They aren’t saving that child at all.” And, in the main, he may have a point. But the kids that most people don’t want really would be saved if they could just find homes with loving families. Our Alena, for instance, would, we were told, be dead by now had we not adopted her. She would be dead because the orphanages couldn’t keep her meds up. This is what they said before they knew of her seizure disorder, while they had her on prednazone from the age of two months old. Yeah, if they dropped her off that cold turkey, between that and the seizures, she probably would be dead. A world without Alena hardly bears thinking about.

There’s a place, a terrible, awful place, where kids that are severely disabled, are sent. Conditions there are described as being very like a concentration camp, with beds only 18 inches apart, where non-ambulatory children and young adults are left to sit (or lie) in their own waste. And that’s just the start. See a video (in Russian) here and see photos here.

These are, of course, the worst examples. We are fortunate that Alena was in a great facility when she was a toddler, and the one she got transferred to was also good, if a bit grim in atmosphere. Andre was in the same baby home as Alena, and he apparently is now at some school for blind and visually impaired children, although we aren’t sure what that really means.

All that to say this. Whenever we mention these kids to people, it’s of course the whole “Someone should do something” deal. Yet, when people look at adoption, they don’t give any thought to the kids with disabilities, or the older kids; “someone” is, apparently, “someone else”. Nope, not my family, not in my house, but someone really should do something.

So, who is someone, and what is something?

Sure, we’d love to find a home for Andre in particular, and in Buddy’s ideal world, all kids, no matter how old and with what disabilities, would have loving homes and families. I get that we don’t live in Buddy’s ideal world. Some people really can’t adopt these kids, because they’ve raised families already, or don’t have room for kids, or they’ve got a whole passle of kids already (or have all they can handle, anyway). Some people don’t think they can handle kids, or won’t have the patience or wherewithal or time or skill or resources to handle any sort of disability. Some people don’t want to take on the emotional baggage or damage that comes with an older kid. Yeah, I’ve heard horror stories, too, and I’m not saying that these aren’t real issues, because they are.

So if you can’t adopt, what can you do to make a difference? What thing can you, being someone, do?

Check places like His Kids, Too and other charitable organizations. His Kids has several aid programs that they administer, not just for kids in orphanages, but feeding the elderly, Bible camp in the summer, and so on. The director travels several times a year to distribute medical supplies, clothing, food, and other necessities. Anyway, check them out. There are no doubt other such organizations, but teresa and her crew are the ones who helped us through our adoption.

So, will you be someone who does something? Could be about this, could be about some other thing. But next time you say, “Someone should do something”, why not give some thought to how you can be someone?

Who would I be if I wasn’t blind?

Below, slightly edited, is a response to a post on a listserv for Seeing Eye graduates. The discussion started in relation to an article, written by the sighted wife of a blind university professor. Some said the article was an accurate representation of what blindness is really like. Others said the article was more a reflection of the sighted person’s view of blindness and didn’t accurately reflect blindness at all, but rather was more a statement on common misconceptions, issues taken to their extremes, and so forth. Some felt the author had some resentment, while others said she was fair and accurately portrayed the issues that our sighted friends and family face surrounding our blindness. Eventually, someone asked what her life would look like, and what sort of person would she be, what would she do, were she sighted and not blind. Again, some people had some opinion on that; here’s mine.

First, in regard to the previous discussion on how, or even if, blindness has an impact on those around us, whether we spill things more often, generally require extra care and handling, and so on, I only have this to say.

Perception is reality.

Here’s a case in point.

A couple years ago, a bunch of us were out and having lunch. Three of us were blind, two had guide dogs, and we had a sighted guy along. Token sighted guy? I dunno, doesn’t matter. Anyway, this one guy, the other guide dog user as it happens, spilled his glass of water. He said something to the effect that this was to be expected, that being blind, he spilled things regularly, and it wasn’t a big deal, just part of his life.

From his point of view, this was part and parcel of being blind. From my perspective as someone who rarely spills things, and even more rarely does so in public, it was not, and I really felt that he was really selling himself, and the rest of us, short by attributing his clumsiness merely to his blindness.

I observe that many of the problems I face, and many of the challenges I need to overcome, have far less to do with my actual blindness than they have to do with what I, and those around me, think and believe about that blindness. What I think about blindness and feel about it in my innermost being is certainly not immune from the perceptions of others, and it would be a lie to say that such views held by society at large don’t shape my own views, even in some small measure. It is, therefore, an active and conscious effort that I need to sometimes make to remind myself that my blindness isn’t the problem, and that my limitations are not solely determined by it. Many of those limitations are down to a lack of creativity in finding better solutions to problems that I encounter, or to doubts others have about my capabilities, my own doubts about my capabilities, all manner of things, but rarely are these problems caused by the actual blindness.

Moreover, I’d say that all of us, whether sighted or blind, have to accommodate other people in some way or another, and I see blindness, and my guide dog, as no different. Someone who drives a Suburban will necessarily have a harder time finding a parking spot than someone driving a Corvette. Likewise, someone driving a Corvette will have a harder time moving a sofa. So, sometimes other people have to take into account that I have a guide dog. I have to take into account that my dear friend Melanie, who is different from my wife Melanie, doesn’t like seafood if we decide to have dinner somewhere. We always, and all of us, make accommodations for other people’s needs, none of us being an island. How others perceive such a need when it comes to my blindness, I think, says much more about them than it does about me or my blindness.

Now as to the question in the subject. Who would i be if i weren’t blind? This is a null question, IMO. For one thing, I am blind. I’m not sighted, and in my case, “what if”s are a fairly useless exercise. FOr one thing, the “what if” is not. For another, how do I know? Blindness has been a part of my life for my whole life. Not having another experience, I don’t have any valid data to make such a determination with any degree of accuracy.

Besides, the bigger question is, “Why is blindness stopping you?”

OK, you can’t be a race car driver or a commercial airline pilot. Not yet, anyway. But in most cases, I maintain that our only limitation is ourselves and the attitudes of others who won’t let us give it a go. Also our own attitudes. An, in most cases, it isn’t the blindness so much as our lack of techniques or creativity or what have you.

I already know some will say I’m delusional, and that’s OK. My delusional world is full of possibilities. And please don’t misunderstand. I have days where I’m as pissed off as anyone. I have times when I have my doubts and think it would be better not to be blind. Undoubtedly, there are advantages to having sight. There are also advantages to being tall, but I am neither sighted nor tall. I am who I am, and I’m not only content, I am fulfilled.

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