A Day in the Life of a Person with a Disability

Richard,

Before I forget, Dell needs to check out the current Tekzilla ASAP. I kid you not. A “Roddy” doing the backstroke while running! I think an investigation is in order. This stuff could be valuable if it doesn’t screw up cooling.

Scott

I attended the Texas Assistive Technology Network '08 a few weeks ago, and I promised to write about a couple of people I met there. Unfortunately, life has intervened with a number of minor emergencies that required my attention, including a couple of computer crashes. Another reason why I’m reluctant to start discussing my experience at TATN is because I recognize that my comments will probably be considered as incendiary, although that's absolutely not my intention. One lady in particular could, and should, be a mutual benefit to herself and me as she's leading an effort to set up a clearinghouse in the Austin area for information and technology useful in independent living. This clearinghouse is to include examples of assistive technology, such as AAC products. Her name is Kate May, and she is a fellow AAC user as well as having a degree in Special Ed. Yet, her comments, both at the conference and in email, raise serious questions in my mind regarding her ability to be impartial.

There, I said it, although I sure didn’t want to.

To clarify, Kate uses a Minspeak, an older dedicated AAC device by Prentke Romich. It’s menu-driven, based on PRC’s Semantic Compaction technology. The voice quality is roughly equal to DECTalk, which I first saw in 1983. DECTalk wasn’t bad for the time. Indeed, it was the first artificial voice to gain any traction with my managers at Shell. The release of Windows 95, however, spawned technologies that quickly retired DECTalk’s venerable hardware. We literally gave it to a school. Yet, Kate’s quite comfortable with her Minspeak, although a friend (who I’ll tell you about in a moment) was quick to point that better voices are available. Of course, Kate’s reluctance to change AAC products is entirely understandable. It’s just an example of a general phenomenon I mentioned in my TATN presentation; most people aren’t in love with technology, and they find re-learning how to do a task stressful enough to be avoided. What Kate has told me says that the environment around her, and her own verbal capabilities, do not generate much demand for a better artificial voice.

Kate’s fondness for her Minspeak is certainly her right, and nominally only her business if it wasn’t for a couple of emailed statements. She told me that she intends to be the primary advisor for people coming to TERA, her clearinghouse, looking for AAC options. Ok, but then she said that she was “not proficient” in text-to-speech programs similar to Xpress-It. Hmm. Although I genuinely don’t mean to pick, that seems to be a significant disconnect to me. Saying that different people need different AAC solutions should be a given. Still, anyone intending to advise others would be well to develop proficiency in the major types. I did earn my chops ten years ago. After all, I didn’t write Xpress-It for fun. As much as such an arrangement ought to be mutually beneficial, I can’t see how I can afford to work with Kate. Sending her a copy of Xpress-It wouldn’t help her without an appropriate computer. And, I can’t afford to keep someone nearby to represent me, so I guess we can’t do business unless something changes.

It is tempting to say that it’s no surprise that Kate’s friend was a PRC employee, but that’s disingenuous in the extreme. Yes, Carla is paid by PRC, as a SLP in a consulting capacity. She was quick to observe that her paycheck wasn’t tied to PRC sales, at least not directly. What was more impressive, though, was her behavior. While Kate didn’t appear interested in Xpress-It, asking only one question that I’m aware of, Carla was all eyes and ears, very quickly grasping why PRC products were inappropriate for me once she knew a bit about the private sector environment that I operated in. Rarely do the SLPs I encounter show much understanding of life in the Private Sector, but Carla seemed to. About the only part that she couldn’t quite get her brain around was why hospital SLPs would shun products like Xpress-It in favor of more comprehensive solutions. I know the official explanation about SLP workloads, but Carla is probably right in suspecting that the deep pockets of the larger vendors have something to do with it also. PRC historically doesn’t do much business with hospitals either because their products are more tuned for the education sector. In any case, Carla was a joy to meet, having a uncommon degree of what I call ”snap” despite her protestations of being a “techno-phobe” (yeah right, Carla). Of course, she earned a few points by being easy to look at, and by immediately going ga-ga over Lilly. That showed fine taste.

Long-time readers of my blog know that I tend to favor Private Sector solutions whenever possible. Not that the Private Sector gets everything right by a long shot, but, as long as there’s healthy competition, it will weed out the mistakes. The Public Sector, on the gripping hand, operates under a different set of rules that I find rather bizarre sometimes. There has been such a push in the last three decades to include everyone that various acceptance standards have been lowered right into mediocrity. Hardly an evening goes by that my ham friends and I don’t meet on-air to bemoan the decline of the “American Way.” Naturally, I know people have sung that lament since at least 1770. However, as I communicated with Kate, I began to realize a likely link between the Public Sector’s willingness to accept mediocre performance and the almost glacial rate of progress in AAC.

I do not know that much about Kate’s history. I do know that her degree is in Special Education, and she is affiliated with the Austin ISD. I don’t know if she has ever worked in the Private Sector. I also am aware that disabled people who do seek employment tend to aim for the Public Sector directly or through allied companies. That practice does make some sense, because competition to find and keep those jobs is less intense than for Private Sector equivalents. Even so, some sources put unemployment among the Disabled as high as 80%, and I daresay Kate would agree that the only way to put a dent in that figure is by enlisting the Private Sector much more effectively than it is now. That means that people who need AAC solutions can’t afford to settle for “good enough,” because employers won’t. I talked about this in my TATN talk; “good enough” needs to disappear from the Public Sector lexicon.

This blog entry is waaay longer than I would like. I would’ve preferred to break it up into easily-digestible chunks, but I realized that I had a natural train of thought that I needed to follow through before opening up to comment. Obviously, Kate is not going to be pleased by my viewpoint, and that’s her constitutional right. At least my viewpoint is now on the record in its entirety for everyone interested to weigh for themselves. My greatest concern is the outcome of what Kate is trying to do with her TERA project. I’m frequently told that I’m a de facto role-model, and I wonder if Kate truly realizes the fallout of being one. She is certainly setting herself up as another role-model while using very old AAC, thereby sending a strong unspoken message that contradicts anything good she says about the newer technology. In effect, I believe Kate is supporting the status quo—albeit unwillingly, and I think a serious reality check is called for.

Richard,

Let me update you on the situation below. Arlowe Guffrey's "Dead Skunk in the Middle of the Road" has been playing in my head all weekend, if that tells you anything. I was already pretty certain that the problem was a hard-drive failure when I wrote the text below,  but Spinrite very quickly confirmed the diagnosis.

Google Spinrite, if you're not familiar with it. It’s not much to look at because it's based on DOS, but that's exactly why it works so well. Spinrite is the only utility for salvaging data from a damaged hard-drive automatically. You simply boot into Spinrite, and tell it which hard-drive or partition needs help. It then starts a painstaking process of extracting data from damaged sectors, a process that can take months in extreme cases. Spinrite is really intended to be run semi-regularly because the way it operates gives the SMART firmware that's already built into all modern hard-drives a better chance to notice and lock out weak sectors preemptively.  Yet, Spinrite also has a well-earned reputation for salvaging drives at least temporarily. In fact, Spinrite would've already told me if Roddy's hard-drive was hopeless because of how closely it monitors the SMART subsystem.  There’s no need to despair, slow progress is being made, but Spinrite is having to salvage data literally bit-by-bit from a heavily damaged portion of the disk. There’s no predicting how long that will take, as it depends on how large the damaged area is.

Anyway, the plan is to let Spinrite cook on. I already know the drive is bootable, it was causing a blue screen after running several minutes. That tells me that either the pagefile or a DLL was damaged. I have a three-week old image of the drive. The hope is to get the system back going long enough to refresh the image, and then you can dispatch a replacement drive. Roger?

Meanwhile, the M1710 is once more proving as steadfast as its namesake, Lilly.

Scott

Richard,

I love Roddy (the dog), I truly do, but she just innocently clawed the heck out of her namesake’s keyboard. She was just being affectionate, but she got to my face by walking on the open laptop’s keyboard. Ouch! Scratch the = key mechanism. The numb is still there, obviously, but that’s not going to last. Hopefully, it will last until you can dispatch another keyboard. Sigh. M1530 keyboards have to get more durable.

Scott

Yes, I’m home from Texas Assistive Technology Network '08, and I know that there are family members eager for a report.  TATN isn't where you go to make fast sales or quickly change minds. As the name indicates, it's really an opportunity to network and exchange ideas. The discussions can also be a hoot.

For the uninitiated, this is a blog entry. I blog about my experiences, and TATN was one of them. My blog is at http://adayinthelifeofaperson.spaces.live.com/.

Remember, the presentation is at http://www.conchbbs.com/filestore/TATN '08_0001.wmv. It’s 60 megabytes so don’t try viewing it over dialup.

In a day or two, I’ll talk about a couple of characters I met at TATN. They were the hoot, and pretty interesting to talk with. J

Ok, I admit it. Podcasts like this renew my hope for humanity. Microsoft could and should take Darth Jobs to task. J

A podcast worth the time: www.twit.tv/ww61

Maybe, but remember that I’m speaking to these people more as a former client than a slick-haired, forked-tongue vendor. I consciously keep a low gloss on the presentation in order to be easier for them to sympathize with. The audience will mainly be educators, and a grizzled ex-student may be heard better than a smooth outsider with no budget. Although Xpress-It is currently still on the site, it won’t be next week. I meant what I said about changes coming, but I also don’t want to appear disingenuous. I want to cause the rehab community to seriously rethink what it’s doing even if I never sell a copy of Xpress-It.

Besides, the presentation was finished and deep into transcoding by the time I saw your comment. Windows Movie Maker had absolutely no problem doing what I had in mind. (Screw Apple, HARD!) The presentation is available here for all to critique. Even Apple boxes can view it, but I warn you, it’s not for skinny pipes! If you’re on DSL, you’ll be downloading a while. That’s because it’s meant for a large screen.

No, I don’t mean the iPhone. Once again, Apple twisted reality to suit them. You can do a slideshow to sound, IF you are willing to have your slides change at one fixed rate (that you can set). That’s probably good for slideshows, but it’s an anathema to presentations.

About the only way that I know of to do what I need is with video. I seem to vaguely recall that several video authoring tools will set stills to a soundtrack. Maybe even Windows Movie Maker will. In any case, I will have to rethink my slides just a week before my debut. Fun.

Here is a draft of the presentation I’m to give at the Texas Assistive Technology Network ’08 conference on the 24^th. I’m not really happy with it, because I think it wanders too much. However, I was trying to say something important and use up a reasonable amount of time without giving yet another boring product demo. What do you think?

I still have to make the overhead slides. I want to use an Apple file format called Enhanced MP3, which will display slides synchronized to the audio. But, I’m having trouble finding software to create the file.

Indeed.

I don’t think my laptops count as secondary presenters, but I will share this with them.

You’re Dell, don’t you know better? I seriously doubt the D610 has a user-replaceable CPU. J

Dell has a real image problem, as you well know. I was on the radio the other day with a ham who had a new HP something-or-other. He needed to reload the software for his do-everything printer, and was trying to communicate with HP. Of course it was the classic tale of trying to chat with India. He couldn’t believe Dell could be any better.

Dell, I know the economic arguments for outsourcing support to India, Panama, etc, but it’s a false economy. Americans want to speak to someone who actually does understand.

Angela, that’s a very kind offer. When do you need my decision? You’re right, an hour slot is easier to manage in terms of logistics, and I think I do have some relevant things to say. I would be more credible, though, if I had a copy of Xpress-It to give away. Anyone can criticize the status quo, but it’s much better to have a real alternative in hand.

The real reason why I hesitate is because I haven’t written the presentation yet. I have a pretty good idea of what needs to be said, but it’s in my head. The Ironkeys did arrive today, and I’d love to have one ready. There just isn’t time with the other stuff I’d need to complete. If I am going to still present, that preparation would have to get the highest priority. (I haven’t done a presentation in eight years so I know I’m rusty.)

Ok, let me get Xpress-It cleaned back up first.

Affirmative. Release my spot.

Other AAC companies have seen Xpress-It,  and their general reaction is much the same as the rehab field. They have trouble imagining a use for an AAC solution that doesn’t try to manage the entire user interaction. You may dimly recall my account of encountering the Words+ rep at TATN ’07. She couldn’t believe EZKeys miserably failed to meet Shell’s expectations. Her mantra seemed to be “you just needed my training.” Only on the second day did the rep admit that Words+ was working to address compatibility issues with non-AAC software.

I’ll contact Dave. Do you think an email of introduction would be appropriate? I can’t get USAAC.ORG to even acknowledge my existence.

I appreciate the timely reminder. Regretfully, it looks very unlikely that I will be attending TATN ’08 in any capacity. The chief reason is frankly a lack of caregiver talent capable of supporting me through a multi-day event. Even my own mother wouldn’t credit all the minutiae involved in creating a creditable presence. Showing up doesn’t really count as a start. The image you project must both set you apart and render you eminently believable. Let’s face reality, yours is a especially tough crowd because educational resources are notoriously overstressed and overwhelmed. Following the path of least resistance is apparently irresistible until it is no longer viable. Challenging that thinking is tough enough without also worrying whether or not my caregivers are being helpful.

There is a second reason. IronKey still hasn’t delivered any samples of their product yet. As you may recall, IronKey is potentially the system I’ll use to deliver and secure Xpress-It. However, if keys arrived tomorrow, it is unlikely that I have time to integrate their offering into Xpress-It, test, and perfect the presentation too by June 23^rd. While there is no law saying the two are inseparable, it goes to delivery rather than more promises like those made by other vendors. Credibility seems to really hold sway in the AT field.

I’m starting to wonder if I’m the only one Xpress-It will ever have an opportunity to help. I know it still has cost/benefit advantages, but that doesn’t mean much if nobody in a position to cause purchases seriously looks at the program. The situation is circular. Sales are what create most of the resources necessary to do further development, which in turn supposedly leads to more sales. There are a number of recent development in the PC world that could be very helpful to disabled people, but I don’t know how much longer I can keep Xpress-It relevant working as an one-man band. If no one notices when someone takes a more strategic approach to enabling people, I think that says something sad about when the Disabled can hope to really be welcomed at the table of life. Meanwhile, all I can say is, “maybe next year.”