Science, Skepticism and Disability

Over the past few years, I have become increasingly interested in the science and skepticism movement. For those unfamiliar with these positions, we try to promote real scientific inquiry and shine light on bogus, pseudo-science. I believe this world view is essential for people with disabilities for a number of reasons, most especially, it is important that we illustrate the completely bunk set of cures for otherwise incurable diseases and disorders that may cause disabilities. Recently, I have started working with some friends from within this movement on a web site dedicated to illustrating which claims of possible remedies for various disabilities are in fact just scams and to dispel various myths regarding disabilities. As with many projects of this sort, it may never actually get off of the ground but we do already have a small but growing crew of people who want to be involved and we seem to be building up some steam on this project. If you find this post interesting and would like to get involved, please write to me offline, I'm especially interested in hearing from people who have disabilities other than vision impairment.

My blindness was caused by retinitis pigmantosa (RP), a disease with no known cure. There has been real, science based medical research on this and related retinal diseases and there have been some promising results in the laboratories of great centers of study around the world. The world of science based medicine, though, is making no claims of actual cures yet and the procedures involving stem cell based retinal transplants are not yet available to the general public.

In preparation for this article, I googled "cure retinitis pigmantosa" and was presented with the phrase, "about 264,000 results" and found a number of advertisements above the actual search results. The first ad was titled,, "Retinitis Studies," and was a link to a very sketchy looking group that claimed to be doing some research on something not entirely related to RP, their site is also partially inaccessible so I doubt if they are looking for anyone who actually knows much about the world of actual blindness. The second ad had something to do with acne so was a false positive but the third ad was titled, "Retinitis Pigmantosa Treatment," I found this title interesting enough to go to the site which is owned by a group that calls itself, RightHealth which seems to be a healthcare search site which found both real and pseudo-scientific items and did nothing to distinguish between the two.

Some of the search results were to legitimate scientific sources that stated that there was no cure for the disease but discussed both retinal transplants and various experimental gene therapies. These show promising results and offer hope for the future if research into these areas continue to provide what appear to be positive results, the rest, however, offered nothing more than pseudo-science and false hope.

When and if we launch our web site, I will do a more in-depth study of the scam artists. For now, though, let it suffice to say that the web sites that promise actual cures do so with the same flawed claims as most of the world of bogus "alternative" medicine. Acupuncture, homeopathy, , energy healing or any of the panoply of supposed "cures" I found are all entirely without basis in reality. None of these so-called treatments do anything beyond providing a placebo effect for any sort of malady, including RP. Some people will ask, "What's the harm and I answer, people who have a degenerative disorder, especially one that will result in blindness or some other major disability, are often desperate. People, like me when I was in my twenties (roughly 25 years ago), are often willing to try anything and spend every dollar they can get hold of to avoid blindness. The harm is that these scam artists trade dollars for false hope and, as we all seem to acknowledge, people with disabilities can often not afford expensive medical procedures that do work and these purveyors of junk science victimize individuals who are willing to try almost anything to avoid the dreaded possibility of having to live with blindness.

Please do not waste your time sending me claims that alternative medicine does actually work unless your comment is accompanied by a pointer to an article in a well respected peer reviewed journal. No, "Yoga Journal" or other publications that promote pseudo-science and publish neither peer reviewed studies nor the methods used to research a claim will not convince me. The only thing that "alternative" medicine offers is an alternative to actual efficacy.

I am not an expert in medicine or alternative medicine. I will take my lead from blogs like Steve Novella's "Science Based Medicine" and Rebecca Watson's "Crap Based Medicine." These two cornerstones of the movement are on the popular podcast, "Skeptics Guide to the Universe" (SGU) and Rebecca is the leader of Skepchicks, a women in skepticism group. Along with these two people, I will draw from real scientific publications that discuss alt-med and will try to find as much information on both sides of this debate. If anyone claims that alt-med doesn't have the money to do research, I will point out that the sales of alt-med products is well into the billions of dollars per year and I believe that they can and should be required to spend a few hundred million per year proving their positions. Alternative Medicine is big business and should be required to work the same way as legitimate science and medicine. I also believe that such substances and procedures offered by practitioners of alt-med should be subject to the same approval processes as real, evidence based medicine and that people selling false hope should be charged with practicing medicine without a license as there is no legitimate governing body to regulate these procedures as, to do so, would be endorsing a scam.

I can be convinced to change my position on various types of alternative medicine if the aforementioned articles can be provided. I am opposed to con men taking money from people who feel that they have no real alternatives. I am not opposed to any specific practice if it can be demonstrated to have a real positive effect in a double blind, controlled study. I am not religiously against alternative medicine, I've just been shown zero credible evidence that it does anything beyond a placebo and I believe that I can say with absolute confidence that sugar pills and plain old water will not cure RP or any other disease that leads to a major disability.

-- End
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",

Model T Syndrome Continued

This morning, I read and published a comment by an Android user who took offense at being labeled a puppy yapping for a biscuit. The anonymous post stated that this user was a member of the "Eyes Free" mailing list, a group to which I also belong and correctly stated that some of the people on the mailing list were critical of various things regarding Android accessibility. This person also correctly stated that GPS navigation apps designed for people with vision impairment are superior and less costly on Android phones than on any other types of handsets.

Then, the user writes that it is good that Android supports some of the most minimal features like answering and placing calls and entirely dives into symptoms of Model T Syndrome by stating that there is an expectation that Android will get better. The anonymous Com enter then states that it is only due to Android accessibility that a person with vision impairment can use Sprint as a carrier. Sprint, if we forget, is bound by Section 255 of the Telecommunications Act to provide accessible handsets and that it hasn't before should be the basis of an FCC investigation and not a celebration of Android's half assed accessibility.

My point is that it is absolutely unacceptable for any company to release access technology that is too far from the state-of-the-art. On handsets, this means that the AT is competitive with VoiceOver on the iPhone and not a handful of really excellent features like pedestrian GPS and few of the basics like out-of-the-box web browsing.

Let's explore how Android as a whole compares to Android accessibility. How many mainstream users would buy an Android phone if it wasn't competitive with the iPhone? What if such users had no web browsing, could not read descriptions in the Android Market (a problem fixed in 2.3 but not available to any blink with an Android 2.2 based handset), could only "see" some buttons with meaningless information on them in order to do things like installing new software, could not use more than half of the standard apps, could not use the on-screen keyboard, could not use the built-in email client, could not use any of the handsets without a built-in hardware keyboard, could not turn it on without assistance and could not do a panoply of other fundamental smart phone activities? The answer, plain and simply, is that a phone with all of these problems would have been the laughing stock of the telecommunications biz. But, our anonymous comment-or seems to say that we should be grateful and that such failings are acceptable for we blinks.

I'm not suggesting that people with disabilities should have an experience substantially better than that of our mainstream friends but, rather, I'm saying that anything less than parity out-of-the-box is unacceptable. this is entirely the Model T Syndrome and an entirely discriminatory approach to software development on behalf of the technology giants that make such incredibly flawed solutions like we must endure on Android. Google has billions and billions of dollars in its arsenal but cannot make a screen reader superior to that built by a really smart and really terrific 22 year old hacker in his spare time. This would be the equal of Chevy building a new car based not on state-of-the-art electric engine technology but, rather, on the Model T, a vehicle that was pretty wonderful a century or so ago.

Google is not alone in this problem. Microsoft released Windows Phone 7 with no accessibility solution and no way for third parties to create an accessible solution. Symbian seems to have lost its accessibility in more recent releases, Blackberry seems to have broken its accessibility and Palm never had accessibility in the first place. None of the failings of other OS, though, is an excuse for Android to provide such a substandard solution. We have state-of-the-art accessibility from Apple and all comers should provide something quite similar and do so immediately.

-- End.

The "Model T" Syndrome

A number of years ago, I published some articles in this blog that were very critical of Apple and the early versions of its VoiceOver screen reader. Specifically, I compared it to the high powered Windows screen readers like JAWS, System Access, Window-Eyes and NVDA. For these articles, I was blasted by friends like Gabe Vega and by my harshest critics as well. These people agreed on one thing: VoiceOver was in its early stages of development and should not, therefore, be compared to software that has had the luxury of many years of development and testing. I call this failed logic, "The Model T Syndrome."

The source of the term "Model T Syndrome" is, of course, the automobile industry and we need to look to it as an example of new product introductions. In 2009, General Motors went into bankruptcy and was bailed out by the US Federal government with taxpayer dollars. In 2010, GM had recovered profoundly and went public again making a terrific profit for our government and its underwriters.

How did GM go from a corporate baskets to a shining IPO? They started building automobiles and trucks with exciting new designs and state of the art technology. The Chevy Volt electric car is perhaps the finest example of the new General Motors engineering successes.

The Chevy Volt, advertised as "more car than electric," is the most interesting entry into the mass market electric car space. The Volt is not a hybrid but the first major entry into the purely electric car space. The Volt is 100% state-of-the-art technology and is an unapologetic bit of serious innovation.

What would have happened if General Motors, instead of building new, interesting and exciting vehicles instead built several new designs that were immediate derivatives of Henry Ford's legendary Model T? While this question sounds completely absurd, it is, nonetheless, the statement made by many people with vision impairment every time a shitty new screen reader that at best, limps along providing support hardly better than JFW or Window-Eyes 1.0.

Recently, this discussion has been most frequently focussed on Android accessibility and its TalkBack screen reader. TalkBack was less than useful on Android 2.1, it got worse on 2.2 and, as some things were fixed in 2.3, other general accessibility issues were broken. Perhaps its most glaring shortfall is that it still does not support web browsing on Android handsets. that's right folks, a screen reader that does not support web controls being developed and distributed by a huge major corporation with insanely great levels of resources in 2011.
Might I say that this is the equal to of building a Model T based automobile in the second decade of the 21st century? Sure, the Model T was a great car a century ago and JAWS 1.0 was a great program in 1995 but trying to sell either today is absolutely absurd.

To further emphasize the ridiculous nature of Android accessibility we should take a look at Spiel, an Android based screen reader written outside of Google by our friend Nolan, a really sharp free software hacker. Nolan has a full time day job where he does not work on Spiel, a screen reader that performs equally well to TalkBack in all areas that TalkBack does work and also adds a powerful scripting facility not present in TalkBack. Spiel is more useful than TalkBack and was written entirely using the resources of a young blind hacker in his spare time. Like talkBack, Spiel has some serious limitations resulting from severe failures in the Android accessibility stack. Nolan cannot fix this and the people at Google apparently choose to ignore the needs of users with disabilities and make absolutely no improvements to their fundamental accessibility support. In screen reading, Google, one of technology's biggest players, has been outperformed by Nolan, a lone hacker working in his spare time. Google builds a Model T and acts like we should be awed by their software and be grateful that a multi-billion dollar company does anything that may even be of marginal value to our community.

Why then does our community so often jump for joy like puppies being offered a Milk Bone when everyone else is eating steak? Frankly, I do not know. When VoiceOver sucked, I was slammed for saying so and I'll bet that there are people out there who will blast me for saying such things about Android accessibility as well. They will say that TalkBack is still just a version 1.x and shouldn't be compared by the now excellent VoiceOver. These people will give Google a free pass and like the puppies yap happily for a portion of a biscuit while our sighted friends enjoy the rich experience of a full Android system.

It is true that Apple has improved VoiceOver into a very credible competitor on Macintosh and the absolute leader on portable devices but this does not excuse the miserable performance of the early VoiceOver releases. If Google improves Android accessibility and builds a screen reader as usable as VoiceOver, they should be celebrated but, for now, releasing a tremendously flawed "Model T" release that actually does less than JAWS For Windows did in 1995 is inexcusable. Google, Microsoft, RIMM, Palm and all other OS vendors that do not have a native screen reader built into their platform that is at least as useful as the current version of VoiceOver should be shunned by our community until they start building accessibility that is state-of-the-art.

If we look at Spiel and NVDA on Windows we can observe that tiny to small teams with little or no money can build outstanding accessibility products, we must ask the question, "Why can't Google, Microsoft, Ubuntu, Palm, RIMM, Nokia and others build a credible AT stack and a screen reader that can compete with VoiceOver, JAWS, NVDA and other high performance solutions?" and "When will our community stop giving a free pass to companies and organizations that continue to build the Model T?" If we compare Google's annual income to that of our friend Nolan, I'm willing to bet that the ratio would be close to an infinitely greater level of resources, why then aren't we seeing at least a far greater level of commitment to accessibility than can be put forth by a really smart young man in his spare time?

-- End

Airport Follies

By Gonz Blinko

"Gonz Blinko, blind journalist and social critic was found dead from an apparent heart attack in his Florida home. Blinko, the controversial fifty-two year old writer was oft quoted as saying, 'If you are going to have a live fast, die young lifestyle, do not mess up the second part,' suffered from numerous physical and mental illnesses and was thought to have been hiding for much of the last year of his life," wrote Captain Capcha, Blind Jackass Journal, while eating a burrito somewhere in Marriposa County, Arizona.

***

Sitting in SFO,, I typed, "Reports of my death are, for the most part, untrue," and waited for my flight to Tampa to board. "I have taken some time off to spend with Krysta Cryptic, a mostly wonderful human being."

I felt a hand move across my shoulders and start rubbing on my left side. The hand and arm came from my right side where a woman had just sat down. "Please don't touch me" I said quietly and politely.

"But I love you and your dog," came a response so thick in alcohol fumes that, if I had lit a match, the terminal would have exploded into flames.

"Sure," I mumbled, "Just please do not touch me," I said in a voice that was about as non-thretening as possible. While I like the occasional explosive moment, I didn't want to be on the business end of a flammable drunk at an airport gate. I then felt a pair of hands grab my right forearm and start kneeding the muscles.

"I just love you so much," said the sloppy woman. "Your dog is so beautiful," she slurred sounding like she had a mouthful of marbles.

"Please stop touching me," I said as I cautiously removed my right arm from her grip.

"Don't touch the man's dog," I heard an adult male say.

"Shut up!" barked my drunk from the floor in front of the X-Dog.

"Please Donna," I heard the voice that I would come to recognize as the drunk's husband plead.

"Go away!" she yelled.

"Maam," asked a Jet Blue employee, "Please leave the man and his dog alone."

"You all shut up and go away!"

I sighed and the Jet Blue personnel and the woman's poor suffering codependent husband continue to plead with my assailant. I added another, "Please don't touch my dog," and heard a "Screw you, you can all go away. All of you, shut up!"

Then, I heard the Jet Blue people ask the drunk and her husband for their boarding passes, "You won't be flying together Mr. Robinson, we can't let her on the plane."

"You see that Donna, we have to go home now, they won't let us fly"

"Shut up!" she yelled again.

As the security people walked off with Donna the drunk and her spouse the Jet Blue people came to me and appologized frofusely. "Mr. Blinko, we are so sorry..."

"There's nothing you could have done," I replied. "You can't be held responsible for the behavior of passengers who were drunk when they arrived at the gate.

"It's just good that no one lit a match," I concluded with a smile.

***

Five minutes later, I heard another woman's voice, this one sounding pretty sober. "Are those two dogs going to be allowed in the cabin?"

"Of course maam, it's the law." I heard my Jet Blue buddy say regarding me and, for the first time since I have had the X-Dog, another guide dog on the same plane.

"Well you cannot allow that," I heard the whining woman say.

"Maam, it is the law, we must let them fly," I heard and thought that he should have continued with, "and those dogs are much more pleasant than a bitch like you," but was satisfied that the airline people were at least sticking up for my rights.

"But I won't fly with dogs in the plane," said the increasingly obnoxious woman.

"That's your choice," said the Jet Blue person.

"Well, what can I do?"

"We can try to find you a seat on a later plane."

"That's not acceptable, get me your manager."

"Maam, it is the law that they be allowed to fly with their handlers, my manager can't change anything."

"Well, I'm leaving," shouted the annoying human as she grabbed her carry on and carried on as she stormed toward the terminal exit.

"Mr. Blinko," I heard the Jet Blue person say," I am so sorry..."

"It's ok," I said, "you can't be held accountale for the stupidity of some of your passengers," I said and laughed while shaking my head.

Finally, we boarded the plane and left for the skies all the way to Florida.

***

I wrote this while waiting for a plane from Tampa to an undisclosed location in South Florida where I will hang with El Negro for a long weekend.

-- End
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Comment

Someone sent an anonymous but very good comment to BC yesterday. The author hadn't read BC until yesterday and saw lots of old posts with a Windows bias.

As I now work for Free Software Foundation, I tend to promote Orca and other free software AT. I also agree that Macintosh has come pretty far.

Names

Last week, things on my MacBook Pro 13 started getting weird. Suddenly, it didn't recognize passwords that were in my Keychain and, when I typed in a password into the box that comes up in Apple Mail, it would work if I didn't check the "save in my keychain" checkbox. Something was clearly wrong and other programs regarding passwords (Syrinx for instance) all started acting quite queer.

On Saturday, I spent about three hours on the phone with an Apple Care representative who finally suggested we do an entire system restoration using Time Machine from my Apple Time Capsule. The restoration took more than 17 hours so I didn't see the results until the next morning. The screen said, "Restoration Successful, Click to Restart." So, being an obedient sort of computer user, I clicked "restart" and then the fun really started. My MacBook Pro 13 did reboot but all that came up was a plain white screen with a colored pinwheel spinning (according to my sighted wife). This wasn't exactly what I had expected. So, we called AppleCare for more help (I could have done this on my own had Apple not insisted in making Time Machine restorations completely inaccessible). After trying all kinds of other things and getting no better results, we erased the MacBook Pro 13 hard disk, reformatted and reinstalled the OS and Applications. Then, one folder at a time, we restored various essentials and, except that I'm missing a password or two and have had to ask that they be reset, things look pretty good.

At the end of our marathon session with the third AppleCare guy (he assumed that VMWare Fusion was the culprit as it loaded things before the login prompt) he gave me his personal Apple email address as he became really interested in accessibility on the Macintosh and I'm writing a book about it.

When he said that his last name was, "Stoner," my wife chuckled. He jumped in with, "It's not funny!" and, in all honesty, he didn't get to pick his name but perhaps he'd have chosen a career like surf or ski bum instead of technical support where we tend to expect sober helpers.

This got me thinking about various odd names I've encountered over the years.

In high school, we were often seated alphabetically. This meant that I would sit behind a woman named, Linda Head and directly in front of another named Laurie Hooker. Caught between hooker and head generated high school hormone driven fantasies that I'm sure you, my loyal readers, could figure out on your own. If you can't conjure such, get serious help.

In college, at NYU, I had a friend over in the film school named Richard Payne. It cannot be easy going through life named Dick Pain.

I have a friend named Roger Long. He promised that if he ever had a son, he would name the boy, Richard Brendan Long or Dick B. Long for short. I haven't talked to Roger in quite a few years and don't know if he and his wife have any children at all. Maybe I'll look for him on Face Book or twitter.

One of the kids I went to elementary school with was named Mark and had a large, dark birthmark on one of his cheeks. This was not lost on the schoolyard bullies.

On Lake George, NY, probably in the town of Bolton Landing, there is a sign advertising, "Walter J. Law, Attorney." What other profession could he have considered?

Calvo means bald in Spanish. I know a few Calvos and they all have hair.

I sign my emails with my initials, "cdh." Our pet dog, Charlie, takes prescription medicine that we buy at Walgreens. The pharmacy requires all three name fields be filled in so we have prescription bottles that read, "Charles Dog Hofstader." Can he sign emails "cdh" as well? I doubt we'll be confused but I was the first cdh in this house and lay claim to the signature.

In Digby, Nova Scotia, a sign hangs reading, Edward Outhouse, Attorney at Law," possibly the most honest name for one in that field.

Many years ago, I knew an opthemologist in Tyrone, Pennsylvania named Dr. Dollar. His son was named Bill Dollar and always wore a denim jacket with a dollar bill patch on the back. Bill Dollar, Dollar Bill, no matter how you put it was a first class dork.

Some academics did a study on how names could effect one's career trajectory. They took a set of identical resumes and only changed the name, address and phone numbers on them. If I remember correctly, women with South Asian names, Lakshmi, Suman, Meeta, etc. were the most likely to get calls for an interview, very white protestant names, Robert Ambruster Woolridge Brauns, came in second, other white but ethnic names came in tied with East Asians for third, latinos came in fourth and in a distant last place were people with names like Rahim, Tyrone, Shantell and others that could be assumed to be African Americans. So much for equal opportunities when a resume that claims one graduated from Princeton with honors will land the Indian chick a gig and the black person won't even get called for an interview. I heard of this study second hand so one might search scholar.google.com or elsewhere to get some of the details.

I always wished that the former major league baseball player, Darrell Boston had played for the Red Sox. Of course, when Troy O'Leary played for the Sox, I assumed that, like much of Boston's residence, he was Irish. I was actually very surprised when he turned out to be a black guy.

So, inspired by Mr. Stoner, I thought of these name stories while walking with my dog this morning and came home and wrote them down. I hope you find them a little amusing.

Afterward

While walking the X-Dog this morning, I remembered exactly why I live in Florida during the "ugly" months up north. The sunshine on my face and the cool breeze off of the bay was perfect and X-Celerator liked it too.

-- End.

Walking Home From Harvard Square

Like many quirky urban centers, Harvard Square has its own collection of screwballs, nuts, junkies, hustlers and weirdoes, I wouldn't feel at home with out such people around me. Today, while walking home from Harvard Square, I had the following conversation:

"Are you totally blind?" I heard in a woman's voice from over my left shoulder.

Yes." I mumbled as she pulled in and walked beside X-Celerator.

"That's amazing!" she said a little too jovially.

"Uh huh," I muttered.

"How long have you been blind?"

"Totally? About fifteen years," I replied, "How long has it been since your last ECT appointment?" I asked as, indeed, she seemed highly qualified for shock treatments.

"What?" She asked.

"Oh, sorry, I must have been mistaken," I muttered, wishing she had picked up on my rebuff regarding her mental health but not at all in the mood to suggest that I thought she probably was batshit crazy.

"You've got a great dog," she continued.

"Yeah, I know," I said.

"You know, the Bible teaches us that dogs help bring us to God," she stated with a tone of authority.

"Really?"

"Don't you read the Bible?"

I tried to Think quickly of the most obscure religion I could muster , I replied, "No, I'm a Zoroastrian."

"What's that?

"It's an ancient Persian religion, there aren't too many of us left. You should look it up in the library."

"What's your name," asked the nut who wouldn't go away.

"Chris."

"I'm Reggie, good to meet you."

"Likewise," I added with as little enthusiasm as possible.

"Chris, do you know I am psychic?"

"If you're psychic, why did you need to ask my name?

"I didn't want to invade your privacy," she stated with certainty. "I think most blind people are psychic too."

"She didn't want to invade my privacy but felt entirely comfortable walking up to a complete stranger on the street and asking about his disability. This one is a true winner," I thought. Shit, if all of us blinks were psychic, I'd have moved to Vegas and become a professional poker player years ago.

"I'm sure you are psychic," she continued.

"Ok."

"Well, it's been nice chatting with you," said Reggie, "I'm off," she said and then was gone.

The only useful thing this particular person said that made sense was her final words, "I'm off." No shit, she was off, way off.

-- End