Disability « Disability in America

Believe

February 20, 2010

I don’t normally watch National Geographic TV’s "The Dog Whisperer" with Caesar Millan, because the segments are just variations on one theme: the problems are with the owners, not the dogs. However, I happened across a recent episode last night while waiting for sleep to come, and what made it noteworthy was a segment entitled "Believe." This segment featured a partial quadriplegic named Anita and her service dog, a chocolate Labrador named Beau. It quickly became apparent in the segment that Anita could easily be the poster woman for what usually happens to disabled people.

Caesar quickly traced Anita’s problems with Beau back to problems she was having in general and her overall outlook on life. For example, Beau had apparently developed a fear of riding on the county-provided public transit busses for the Disabled. The truth turned out to be that Anita had some very negative feelings about the public transit service due to on-going scheduling and reliability issues. Her dog was simply picking up on her negativity and wanted to get away from the problem. Once Caesar talked Anita into not focusing on negative things, Beau immediately followed suit. One of the almost magical properties of dogs is their ability to sense the mood of their person. Unfortunately, it’s much harder for them to understand the underlying cause.

The reason why I say that Anita could be the poster woman for disabled people has to do with how her emotional state is affected by her disability. Anita admits that her self-esteem has always been low, and that’s not unusual for women. But, she has a slowly progressing disability that she has allowed to isolate her. As Anita puts it, she has become a virtual hermit because she feels that people look over her in her wheelchair. My experience has been that such passive thinking is extremely common among disabled people. Life is wearing, yes, and life with a severe disability is far more so. I can sympathize with Anita, as even I am less pugnacious than I used to be. I no longer spend time trying to convince society that I am a worthy participant. Instead, I spend my remaining time doing whatever I enjoy and can afford. Yet, I still know that a disabled person cannot afford to be passive, as that leaves you totally vulnerable to be abused by others. The world is regretfully not populated by guardian angels; you have to be able to advocate for yourself because you can’t assume others will do it for you. Sadly, I don’t think that most disabled people, including Anita, realize they matter enough to have a say. They seem to basically give up and sit there. To me, that’s just a huge waste of resources any way you view it.

Like Beau, Lilly serves in multiple roles. She certainly isn’t as multi-tasking as he is, but both know their jobs well. Both have roles as companions and social icebreakers. One of the differences in the handler/dog relationships is that Beau has to be more assertive to counter Anita’s passive nature. That’s neither intentional nor desirable, but, to paraphrase Caesar, "if you don’t lead, the dog will." Thankfully, Lilly is low-key to start with, and I’m pretty assertive. Thus, we usually agree on who’s in charge! Technically, I do have a high-powered trainer consulting, Malinda Julien of US Tactical K9s in Abilene. In practice, though, Lilly really trained herself by following me around and observing my routine. Only once or twice have I needed to check with Malinda about tweaking Lilly’s behavior. Great dog.

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Posted by Royall

On Loneliness

December 13, 2008

I haven’t been posting much lately because I don’t have a lot to add. Almost seven years have elapsed since Shell laid me off, and my struggle to even win interviews has already been documented here. I hate boring people with the same old thing. And, on the Xpress It front, the situation is that any further development will probably be solely personal, because I can find no real interest in the rehab community where it would have to exist as a product. There’s a saying that perception is reality, and the AAC community clearly perceives that the current offerings are “good enough.” My own experience says otherwise, but they don’t see it that way. Unfortunately, I simply don’t have the finances to campaign to change that perception.

So I have to admit that there are days when finding a reason to get out of bed is a challenge. I’ve been out of the IT industry long enough that I can’t even do volunteer work if I wanted to. Yes, I could knock the rust off, but no employer would wait for that to happen. A former friend warned me that I’d be lost without a job, and she was right. Not that I’m the type to do volunteer work; I believe that career-related skills warrant some compensation, but that can come in many forms.

In any event, what I want to talk about today is the loneliness that comes with a “severe” disability. I could get annoyingly extenstential and observe that loneliness is a part of the human condition. True, but having a severe disability, especially one that compromises communication, will make loneliness just about a constant. Curiously, I have been contacted by several women seeking better AAC for their disabled sons. During the ensuing conversations, it came out that these moms were really trying to decide if it was better to prepare their sons for reality or try to somehow provide for the future so the child never needs to face the world. I dodge the question somewhat if I’m asked for an opinion, because I can’t fault these mothers for wanting to protect their children. However, the truth is that even the most basic care is so expensive over a lifetime that a huge pile of money would be needed to give the person any independence without them earning any income. The sad fact is that most severely disabled live in so-called “group homes” under the supervision of caregivers. That’s not living in my opinion, only existence.

I don’t know how a verbally-impaired person with at least minimal mental function could get through life without battling loneliness. I held a salaried position in a major corporation outside the medical/rehab field for 14 years, and have been married twice. That says you can at least get that far, but going further, especially in intimate relations, is quite difficult. The other person in the relationship is forced to come to terms with all the ramifications of the disability. This is what basically killed my first marriage, and I still miss my first wife. Inside, I am a normal guy with all the usual needs, but I have come to realize in the past few years that I don’t have enough to offer to a woman—for example—to offset the hassles of my disability.

Having said that, I would still have to tell the mothers I mentioned earlier that they really can’t protect their children from the struggles of life. There was a recent episode of Law & Order that dealt with a twist in one family’s efforts to manage the future of their disabled daughter. They basically wanted to preserve her as “our little angel” by removing her sex organs and any other body parts related to maturation. Now, I didn’t get much detail on the extent of the 9-year-old’s disability, but it stands to reason that, if she had enough mental function to respond to her parents, she would still be extremely lonely if she outlived them. In other words, you really can’t shield children from everything. It is probably a better idea to equip them as well as possible to deal with life’s challenges. Yes, that might include having Xpress It.

Now, I just heard that astronomers are needing volunteer help in processing some data. Let me see what that’s about.

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Posted by Royall

Why?

September 4, 2008

Ok, I admit it. I don’t get it. I don’t really understand why people with severe speech impairments aren’t clamoring for better AAC products. The technology is there, and I don’t just mean Xpress-It. there are other products that do a decent job, but almost no users are willing to try it. They are comfortable with what they currently have no matter how well it actually works.

I feel like most people who need AAC products have such low expectations for their overall lives in general that the AAC doesn’t really matter to them. I’m reluctant to say this, but being severely disabled in this world is a daily struggle. There’s no getting around that reality. I suppose that most people simply cannot withstand the rigors of that struggle, and eventually withdraw into a very small space. I guess that’s just human nature, and I acknowledge that I am in something like that mode now. I mean, it’s difficult to see a point in continuing to develop Xpress-It when nobody else seems to want it. It already meets all of my own needs so why bother to keep working on it?

Alas, I don’t know of any inspirational response that I can offer with sincerity. I think it comes down to a choice between just existence and actual living. To me, the latter means wringing every ounce of enjoyment from this life that you can regardless of what you believe comes afterwards. Yes, there is no shortage of crap to deal with, but that is true to varying degrees for everyone. The difference between existence and living is whether or not you draw any enjoyment from it. Note that that means more than just having fun; it actually means doing things that give you satisfaction. That’s a very real difference.

I suppose that perspective necessarily means I’ll continue to partake in activities that I can draw satisfaction from. Whether or not I will continue to work on Xpress-It is sadly doubtful, but not out of the realm of possibility. Several considerations will go into deciding that question. One factor will be the evolution of technology; there are several platforms under development or coming out that could make Xpress-It even more portable than it is. Another factor has to be the future of disabled people in general. If they, in effect, come out of hiding and start participating in society to a greater extent than now, they are going to need more effective AAC.

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Posted by Royall

The Sociology of Disability

March 15, 2007

Ok ok, this one well earns its spot on the "response required" pile.

—–Original Message—–
From: Alecea Standlee
Sent: Thursday, March 15, 2007 3:57 PM
To: Scott Royall
Subject: RE: FW: Xpress-it

Scott,

As always a pleasure. You are without a doubt one of

the most interesting people I have had the opportunity

to discuss. Feel free to post this email on the blog.

First off, ah technology, the PC/Mac debate is as much

fun (and as solveable) as the Pepsi/Coke debate.

Ultimatly, I must probably conceed the field to you.

Despite my time at Dell, when it comes right down to

it, I am more interested in people than technology. I

can’t argue that Jobs and co. haven’t maintained a

near stranglehold on apple products from hardware to

accessories. On the other hand, there are some things

that Mac’s just do better. And I must confess, after

spending several hours trying to get my Mac to run a

number of Sociology statistical programs, there are

some things PC’s just do better. Vista is to me an

untouched venue. Perhaps i’ll check it out.

With regard to your comments on sociology and

inequality studies. You have a number of valid points.

I took Sociology classes as an undergrad myself, and

generally hated them. I couldn’t stand the surface

discussion of issues that frankly pissed me off. Here

i was, the illegitamate daughter of a teenaged hotel

maid, raised in "middle of nowhere" Idaho on few

hundred dollars a month. I grew up alternating between

homelessness and a 30 foot trailer for gods sake…And

these privledge middle class teachers where talking

about social inequality and systems of power! What the

hell did they know… I could toss out a story about

living in a tent for a few months and how I overcame

my cirucumstances to get to college and get an A on

sympathy. I suppose i could defend sociology, point

out the ways in which it has shaped and expanded

understanding of human behavior. I could also point

out, that despite its flaws, and its occasional

half-arsed practitioners it has produced some

extrodinary insights into social strucutes. I might

also mention that for good or ill, sociological

research guides public and social policy. As thats the

case, I have every intention of making sure that the

sociology I produce, and that my students produce is

not superficial or inane.

But… for me there is more…I wanted to understand

society, I ached to understand humanity. Why do we do

what we do… is it nature like you are suggesting. Do

we respond to one another based on age old biological

imperatives that want us to eat, sleep an of course

mate? It reproduction why we are jittery around the

disabled, unable to get attracted to the obsese, and

plain pissed off about homosexuality?

Or is it culture. Are we raised to believe that is

group or that is superior? Do we exist in a

socio-culture space that brainwashes us on a daily

basis, tells us what to eat, where to sleep, who to

have sex with? the nature vs culture debate is a big

one. Sociology and anthropolgy vs biology its a

battle royal!

Seriously, I admitt that biology and nature have some

impact on a behaivor. But to suggest that our behavior

is somehow dictated by our lizard hindbrain is in my

opinion a total cop out. ‘oh, the devil made me do

it!’ I’m not buying it. We live in a society that

shapes us, I have no doubt of that, but we in turn

shape it. Who we are, what we do, is guided but

culture and its a powerful force, don’t mistake it.

Millions of people have died for culture, for beliefs,

for what they are taught. Its not easy to change

attitudes, to change culture, but it is possible. its

not hardwired. As a society we no longer lock up our

disabled, enslave based on color, or kill based on

sexual orientation. IF those things were part of inate

biology, we would not be able to change them.

If that the case and we can change them, that leads to

your final question…should we change them. Should it

be survival of the fittest? Is that what is best for

our species? Would you let your child be born if you

knew he or she would experience your level of

disability? Would I let a a child be born if I knew he

or she was going to be raised in grinding povety and

physical abuse like I was? I don’t have clear answer

for you here.

I "overcame" my circumstances, I am the living

embodyment of every anti-welfare, bootstrap theory

privledged republican who preaches if you only work

hard enought you can get out of proverty, racism,

sexism, hetrosexism fill in the blank. Was my life

shaped by culture…absolutly.

But my mother works for minimum wage at a job she

hates in order to rent a room in a dingy bording

house. My sister ignores drunks who smack her on the

but and insult her while she carries drinks in a smoky

casino. And my baby brother will spends his life

counting the days he has been clean and out of prison

and has done so since he was 19 years old. Are there

lives shaped by culture? Damn staight.

I will understand how the forces that raised and

shaped us could have produced such different people.

Because when it comes down to it, society is not

simple. Its not as easy as nature vs. nurture. Biology

vs society. Is an equal society possible? Honestly,

probably not. Is it desirable…I think so. Is it best

for humanity? Well I think that depends on how we

define equality. It depends on what kind of society we

shape, and how in turn that society shapes us. Is

allowing everyone to procreate indescrimatly best for

humanity? Probably not. Is allowing only the

privledged to procreate, wealthy, white, western,

perfectly healthy, equality? No. Nor is it best for

humanity, after all survival depends on genetic

variety. Finding the line between social justice and

survival is what good sociology is about. How can we

make society work better for everyone. How can we

create a society that meets the needs of the

indivdiual and the species? That what sociology and

social justice and inequality studies is supposed to

be about.

i love your emails…they make me think!

Alecea

— Scott Royall <royall@conchbbs.com> wrote:

> You see, I didn’t forget.

> If you like "pretty shiny," Vista should be right up

> your alley. It is

> definitely that. Vista, at least on a M1710, is also

> surprisingly resilient.

> Macs achieve similar stability through the Josef

> Stalin methods, they

> control the entire market vertically. The sole

> difference is that, instead

> of the Red Army, NKVD, and KGB, Jobs employs legions

> of lawyers marching in

> tight phalanx. Microsoft is a hippy commune by

> comparison!

> And what, pray tell, does the Zune have to do with

> the PC? Precious little,

> of course. You worked for a large corporation long

> enough to know that they

> are as multi-faceted and imperfect as the people who

> run them. None do

> everything right. Do I really need to remind you of

> the Newton and iMac? The

> Mac needed to co-op Unix to escape obscurity. The

> one thing about the Zune

> that may yet save it is its upgradability. With the

> iPod (and likely the

> iPhone), the only upgrade path is tithing large

> portions of your income for

> future models. Emperor Jobs has pranced around naked

> much too long.

> The study of inequality, and indeed Sociology in

> general, makes my teeth

> itch. Admittedly, my personal exposure to Sociology

> was limited to the

> undergraduate level during the early ’80′s. By no

> means do I consider myself

> as any sort of expert on the topic. Yet, one of the

> aspects that stuck in my

> mind was how superficial Sociology seemed to be. I

> wasn’t forgetting that I

> was just working with undergrad concepts, but

> everything seemed so naïve. I

> would write papers that would leave my professors

> wet with joy even while I

> fully realized I was laying heavy smoke! I recall

> one course that included a

> post mortem of Great Society initiatives, and I

> figuratively spent much of

> that semester in amazement that educated people

> could ever propose such

> obviously (to me anyway) flawed programs. Ah, the

> "wisdom" of youth, eh?

> A logical conclusion of something I wrote the other

> day is our urge to

> achieve complete equality in society is not always

> in the best interest of

> Humanity. We tell ourselves that disabled people

> should have full equality,

> but I’m not convinced that it could–or even

> should–happen. Everyone feels

> some discomfort in the presence of obviously

> disabled people, and I’m sold

> on the idea that that discomfort is rooted in the

> same instincts that make

> certain body types universally preferred for mating.

> Though humans see

> ourselves as largely rational creatures, far more of

> our routine activities

> are driven by very primitive instincts. That’s

> hidden by our brains being

> hard-coded to rationalize everything. Unfortunately,

> I don’t think we can

> really consider re-engineering society successfully

> until we come to terms

> better with our base nature.

> While I was married twice, both marriages were

> doomed before they begun by

> the limitations and unfavorable comparisons imposed

> by society as an

> intentional or accidental response to my disability.

> For instance, my wives

> struggled to define their own self-image partly

> because they felt obliged to

> be my primary caregiver. Perceiving themselves as

> equal partners was quite

> difficult. Therefore, I don’t accept the

> mind-numbing mantra of "all life is

> precious." The truth is, we can create life at the

> drop of a hat (or other

> item of apparel). The basic opportunity is the

> result of a mechanical urge

> only tenuously related to rationality (whether

> there’s papal approval or

> not). Indeed, it is much like tossing a die in that

> it simply initiates the

> process. Whether or not a life is produced is

> hopefully the rational link in

> the equation. Factors such as the parents’ ability

> to provide for a child,

> and what that child’s life is likely to be like must

> be weighed. To not do

> that essentially reduces us to our animal instincts,

> literally breeding like

> rabbits. Knowing what I do now, I can’t say that I’d

> be eager to bring a

> child into the world if I knew he or she had my

> level of disability. To be

> sure, my life has had some nice moments, and the

> final verdict is still out.

> Yet, I don’t think anyone can accurately imagine how

> lonely my life has

> been. I’m to a point where I don’t see any

> possibility of future

> relationships, but I certainly wouldn’t mind a few

> more romps in the hay

> while I’m here!

> Getting back to Sociology, I think sociologists need

> to realize that

> tweaking a society is a lot like flying a supersonic

> jet with

> overly-sensitive flight controls! If you’re a

> ham-fisted Democrat, you can

> barrel-roll the country into the ground right

> quickly!

> Do you mind if I add this email to my blog. It

> touches on topics I think

> should be touched on.

> —–Original Message—–

> From: Alecea Standlee

> Sent: Tuesday, March 06, 2007 3:49 PM

> To: Scott Royall

> Subject: Re: FW: Xpress-it

> Scott,

> Wow, legendary huh! I can’t says I was expecting

> that.

> I have to admit your critiques of Mac makes me grin.

> I

> love a good Mac vs. PC argument. I might point out

> PC’s attempts to replicate the sucess of iPod, ‘nuf

> said there. As well as the infrastructue and GUI on

> the last releases of Windows have been a bit

> familiar… But as one of my pal’s says, Apple has

> spent their last few years as a free product

> development department for Microsoft. Don’t know

> what

> that says about Apple!

> I don’t consider myself a fan-boy (or fan girl for

> that matter) I am more of a mixed medium person in

> practice. I like pretty shiny at home (hence the

> Mac)

> and my department uses pc’s, Dell’s actually, at

> school.

> With regard to social inequality studies, thats my

> area of study and research. I have historically

> focused on gender and social class inequalities

> primarily, thats where I have done the most

> research

> and have personal experience. Though, I have done

> some

> work in disability, age, race and sexual

> orientation.

> I know what your mean about the complexity of

> inequality. I recently spent some time working with

> a

> friend of mine Liat Ben-Moshe as she finished her

> recent book "Building Pedegogical Curb Cuts:

> Incorporating Disability in the University Classroom

> and Curriculum." Which addresses disability issues

> in

> class design and teaching. It’s an excellent book

> dealing with institutional resistence to adaptations

> for disabled students and teachers. Liat has been

> struggling with getting an instructorship in her

> post-doc career because she is also in a wheelchair.

> So despite its so-called progressiveness academia

> still has a ways to go.

> I am currently working on a couple of projects, one

> examing the impact of Black Masculinity on

> educational

> attainment in inner city schools. Another is on

> community building and communication via cyberspace

> amoung minority groups…thats in the early stages

> now. I have some good research on sexual orientation

> support, gendered groups and ethnic cultural

> preservation groups. I am looking to incorprate a

> disabilty support or information dissemination

> cybercommunity. Feel free to suggest any other

> pieces

> I am missing.

> After you contacted me, I checked out your blog. I

> see

> what you mean about being a busy guy! on that note,

> I

=== message truncated ===

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Posted by Royall

Disability in Society

March 11, 2007

To: Clarice Nelson, SLP

Clarice,

The cliché is “better late than never,” and clichés are generally born of almost universal truisms. I don’t exactly know what to say about the lack of response. Acquaintances in the Speech Pathology field tell me how busy they are, and I don’t doubt them for a second. Yet, I also sense a certain reticence to accept that someone outside the established AAC community could come up with a more useful solution. It’s some of the “not invented here” syndrome in play I think.

Having said that, I must add that the non-response appears to stem mainly from a lack of pressing demand for better AAC solutions reaching the SLPs. That may be another product of what I have also had to contend with personally. Our society seems particularly ambivalent about disability and equality. We remind each other that equal opportunity for disabled people is the right thing to do, but we feel discomfort when we must deal with it on a personal level. Moreover, the discomfort seems proportional to how evident someone’s disability is. Women often say that they select mates for non-physical characteristics like personality and a good sense of humor. Perhaps, but I think it’s more a situation of using those criteria in addition to the physical benchmarks rather than instead of. If you are unfortunate enough to have a disability that heavily affects what you can do, maintaining romantic relationships becomes quite problematic. The discomfort of being around the “severely disabled” appears to originate in virtually Darwinist instinct, creating the awkward ambivalence that’s part of our culture. The Iraq war may finally compel a re-examination of the role assigned to the disabled in our society, but I may not be able to hang on long enough to see it happen.

That ambivalence effectively prevents many disabled people from even attempting to enter society. If you cannot or do not make that attempt, you really don’t have any urgent need or yearning for better ways to communicate. I suppose that explains why the AAC market has been largely stagnant for 15 years.

Scott

From: Clarice Nelson
Sent: Wednesday, March 07, 2007 9:53 AM
To: Scott Royall
Subject: RE: E-Introduction Scott Meet Clarice

Hello, Scott
Sorry it has taken me so long to respond. I forwarded your information on to several of my colleagues. I take it no one has responded.
I am a graduate of Lamar University in Beaumont, Texas. I forwarded your information to my contact and former professor Jeri Sullivan. If you’d like you may contact her as well her address is … Lamar runs a private clinic which accepts various patient in Beaumont and it surrounding towns…I was positive they might be able to use you will the returning soldiers from Iraq and the numerous increase in brain injury patients now.
Also I am a member of an organization here in Houston called the Houston Association of Communication Disorders…each month we have a meeting discussing new ideas and techniques in the field of Speech Pathology and Audiology…the contact who set up all our meeting is Kenyetta Boiling her contact information is … This organization is made up of many women with small successful private practices….
Unfortunately, as I told Dan when we spoke my students would not be able to use your device because of their significantly low cognitive functioning. Most of their IQ’s are 40 and below. I work at a facility that educates students with severe and profound mental retardation and autism.
It’s tough but very rewarding,
Please contact me if you need any additional information…
Clarice

From: royall@conchbbs.com
To: djsloan25a26@yahoo.com; claricen@hotmail.com
Subject: RE: E-Introduction Scott Meet Clarice
Date: Tue, 28 Nov 2006 15:42:41 -0600

Dan, thanks for the introduction. Now, we find out how interested Clarice is.

Clarice, I am pleased to “meet” you. It’s too bad the SLPs I’ve met or talked to are too harried by their daily routines to show much interest in new ideas. There’s also the complication that SLPs aren’t taught anything in technical fields such computer programming so they have no idea of what is actually possible. They have no way to know, for example, that the very design of Windows makes properly written programs quite modular. That means it isn’t difficult to string multiple programs together like train cars. SLPs look at Xpress-It and agree that it works well for me, but that other potential users might not be able to type well enough to use the program. SLPs have a lot of difficulty understanding that Xpress-It is totally apathetic about how it receives its input. Thus, Xpress-It can easily be combined with other specialized input software or hardware.

The most frustrating part of my experience is trying to educate people on just how critical speech quality is to functioning in society. The current performance standard is the high-dollar Dynavox product line. Ironically, I recently attended a conference hosted by Dynavox, and I was both pleased and saddened to hear Xpress-It kick the very best Dynavox has to offer up and down the street. A Dynavox sales VP was obviously unhappy about that as well. Clearly, what I developed is quite powerful and significant, if only the AAC-purchasing establishment would notice.

I also run a blog at http://adayinthelifeofaperson.spaces.live.com/.

From: DJSloan [mailto:djsloan25a26@yahoo.com]
Sent: Monday, November 27, 2006 2:08 PM
To: Scott Royall; Ms Clarice Nelson MS CCC SLP
Subject: E-Introduction Scott Meet Clarice

E-Introduction
Ms. Nelson, may I present Mr. D. Scott Royall
Scott, please allow me to present Ms. Clarice Nelson
Scott, I met Ms. Nelson, MS CCC/SLP of CAN Communicate Therapeutic Services, a Speech Language Pathologist currently practicing as an independent consultant for speech/language therapy with Houston Independent School District [tel.(713)408-3680, fax.(713)738-6953, claricen@hotmail.com] this past Saturday. I briefed her on my experience with you and the software you’ve built, about which she was curious.
Clarice, more precisely than I said Saturday, I met Scott in late 1990 or early 1991 when I joined the Engineering and Scientific Programming Department at Shell Oil, where he worked as a Senior Software Developer. Scott is a graduate of the University of Houston with a BS in Computer Science. On his web-site at http://www.conchbbs.com/who_am_i.htm , Scott explains, "I’m physically disabled with Cerebral Palsy. I use a customized electric wheelchair to get around, but am unable to talk. That’s what prompted me to develop Xpress-It!. With Xpress-It!, a standard laptop computer, an automotive-type audio amplifier and speakers (all powered by my wheelchair), I can talk to anyone." In his resume (online at http://www.conchbbs.com/Docs/Final_Presentation_Resume.rtf), Scott explains that Express-It! is a real-time text-to-speech system with adaptive word prediction, based on VC++ and OBDC technology to enable persons with speech impairments to communicate clearly. Scott can be reached most easily by e-mail at royall@conchbbs.com
My hope knowing Scott for all these years and speaking with Ms. Nelson briefly is that the two of you can pick up this conversation in the interests of Ms. Nelson’s patients and Scott’s invention.
Best wishes, DJSloan
Best Regards
=========
DJSloan / Houston, Texas USA
djsloan@sbcglobal.net

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Posted by Royall

Atlantropa

February 21, 2007

"Atlantropa was a gigantic engineering and colonization project devised by the German architect Herman Sörgel in the 1920s and propagated by him until his death in 1952. Its central feature was a hydroelectric dam to be built across the Strait of Gibraltar, and the lowering of the surface of the Mediterranean Sea by as much as 200 metres.

The ultimate, Utopian goal of the project was to solve all the major problems of European civilization by the creation of a new continent, "Atlantropa", consisting of Europe and Africa and to be inhabited by Europeans. Sörgel was convinced that to remain competitive with the Americas and an emerging, Oriental "Pan-Asia", Europe must become self-sufficient, and this meant possessing territories in all climate zones – hence colonizing Africa was necessary. The lowering of the Mediterranean would enable the production of immense amounts of electric power, guaranteeing the growth of industry. Vast tracts of land would be freed for agriculture – including the Sahara desert, which was to be irrigated with the help of three sea-sized man made lakes throughout Africa. The massive public works, envisioned to go on for more than a century, would relieve unemployment and the acquisition of new land would ease the pressure of overpopulation, which Sörgel thought were the fundamental causes of political unrest in Europe. Sörgel also believed the project’s effect on the climate could only be beneficial. The Middle East, under the control of a consolidated Atlantropa, would be an additional energy source and a bulwark against the Yellow peril.

The publicity materials produced for Atlantropa by Sörgel and his supporters contain plans, maps, and scale models of several dams and new ports on the Mediterranean, views of the Gibraltar dam crowned by a 400-metre tower designed by Peter Behrens, projections of the growth of agricultural production, sketches for a pan-Atlantropan power grid, and even provisions for the protection of Venice as a cultural landmark. Concerns about climate change, earthquakes, attacks, and the fate of African culture are often ignored as being unimportant.

The project never gained substantial support despite its fantastic scale and eurocentric expansionism. Under the Nazi regime the plan was ridiculed as it was against the idea of a Eurasian German Empire. The Italians never supported the idea, as their cities were so dependent on the coastlines. After the Second World War interest was peaked as the allies sought to create closer bonds with Africa and combat communism, but the invention of nuclear power, the cost of rebuilding, and the end of colonialism left Atlantropa technologically and politically unnecessary, although the Atlantropa Institute remained in existence until 1960."

Quoted from wikipedia.org.

Clearly, Sörgel was misguided and naive on several accounts. He nonetheless devoted his entire adult life to promoting Atlantropa. It is reported that Sörgel finally realized his foolishness on his death-bed, remarking sadly that he had lived for nothing.

I recently saw a Science Channel program on Atlantropa, and the futility of Sörgel’s efforts stood out to me. I have to wonder if I am another Sörgel in regards to Xpress-It and wanting disabled people to truly be accepted in society. After all, how often do you see disabled people rioting in the streets for equality? Do they really want equality? I can certainly understand why some previously diplomatic advocates like Bob Kafka have become radicalized. There’s a huge ground-swell of frustration behind that. Yet, freedom goes hand-in-hand with responsibility, and many seem to try to avoid the latter. I suppose it’s tempting to let others make decisions for you, but then you will never be more than a child.

To be an adult, you have to be able to speak your mind, if you have one. That requires the ability to go well beyond clicking an icon to utter a canned phrase. You must be able to arbitrarily string words together into phrases that reflect your thoughts. Of course, Xpress-It doesn’t understand what I’m actually saying, it doesn’t need to. The current version understands how to pronounce things according to English language rules, the rest is left up to the user. That’s a real-world example of how freedom and responsibility fit together.

Do disabled people, as a group, want greater freedom? I really can’t tell. What I can tell is that there isn’t much demand for better AAC. Maybe most people still don’t understand what computers can do. Still, SLPs are only going to recommend products that provide what people demand. That’s just human nature. If you want to be treated as an adult, you have to insist on it and the tools that enable you to be an adult. Am I wasting my time trying to offer such tools?

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Posted by Royall

RE: Texas Assistive Technology Regional Conference, Houston, TX June 25-27, 2007

February 6, 2007

Angela,

It is really nice to “meet” a SLP willing to listen. Well, that’s not quite true. The SLPs who have experienced Xpress-It do appreciate its audio clarity, but they always ask where the iconic interface is. As one MD Anderson SLP put it, SLPs have so little time that they tend to select solutions which cover the broadest spectrum of clients possible. The department head went further and said she really preferred a single solution. That’s fine for the SLPs, but it plays to the lowest common denominator among the clients. How is a disabled person with speech impairment ever supposed to be independent? You can’t really do that with icons, because your vocabulary has to be unlimited.

For the record, the very way the Xpress-It software is written makes it naturally able to be combined with other things. Technically, you could even use a Dynavox to control a computer running Xpress-It. Getting the message of Xpress-It’s versatility across to the AAC community has been the real challenge.

The reason why I’m going to TATRC is because the education system is where the bulk of clients are mated to an AAC solution. The local technical director of the former TRC warned me that few clients ever upgrade to better AAC solutions. That means schools are the critical battleground where a student’s future ability to communicate is decided. Somehow, I need to get educators to notice the way Xpress-it works makes it also a natural tool for teaching the connection between words and sounds. (Yep, by default, Xpress-It uses all of those arcane English pronunciation rules we had to learn—with a healthy dose of common sense thrown in.)

Scott

From: Angela
Sent: Tuesday, February 06, 2007 9:46 AM
To: Scott Royall
Subject: RE: Texas Assistive Technology Regional Conference, Houston, TX June 25-27, 2007

Scott-

Thank you for your prompt registration. You get a star for being the 1^st vendor on record

I noticed from the video demo on your site that it is text based system. That is great as I don’t think any of the AAC vendors with similar programs are coming (good for you too I guess).

Just and FYI our facility is trying to improve it’s accessibility with the upcoming reservations but I am not sure how far along they will be in June. Please let any Conference staff know if you have any additional needs while you are here. I look forward to meeting you.

Angela Standridge
Region 4 Education Service Center

From: Scott Royall [mailto:royall@conchbbs.com]
Sent: Monday, February 05, 2007 5:54 PM
To: Angela Standridge
Subject: Texas Assistive Technology Regional Conference, Houston, TX June 25-27, 2007

Dear Angela,

Yes, I have dutifully registered for TATRC and forked over the required $75 for a booth. However, I decided to forward something I recently had to write for another new contact. While that contact was an apparent spammer, my response still serves as a good, no-bull 60-second thumbnail of who I am and what I’m about. As it actually mentions, I am mindful of your hellish workload as a SLP. Still, I hope you will read on. What you’ll read is interesting, and hopefully worthwhile to you.

Scott

From: Scott Royall [mailto:royall@conchbbs.com]
Sent: Thursday, February 01, 2007 3:37 PM
To: ‘chris.glavin@k12academics.com’
Cc: Tao Ju
Subject: FW: Cerebral Palsy (fwd)

Chris,

I am curious as to what prompted you to contact Tao, my associate. He and his wife have been assisting me in attempting to market an AAC solution I created named Xpress-It. Unfortunately, my efforts have not met with any financial success yet.

I should introduce myself. My name is Scott Royall, and I have CP. I also have a Computer Science degree, and worked for Shell Oil for 14 years. Since I couldn’t talk, and none of the currently-available AAC packages met my management’s expectations for intelligible speech, I was compelled to write my own high-fidelity solution. If some hubris will be forgiven, it is literally true that, at a recent impromptu meeting with Dynavox reps and users, the reps were left to explain why their expensive device couldn’t match the audio quality of my all-software Xpress-It.

I was furloughed almost five years ago when Shell decided to start transferring their IT work to Malaysia. Since I can’t get anyone to even grant a job interview to me, I have focused my efforts on trying to make a living on my one remaining marketable asset, Xpress-It. The nature of the AAC market has somewhat surprised me with its resilience to new approaches. There are no real villains involved; the resistance is mostly a product of the vetting process used. New products have to be reviewed and recommended, usually by recognized speech/language pathologists. SLPs have notoriously heavy workloads filled with many tasks, and few have the awareness of what computers are actually capable of. I guess it’s understandable that people stick with recommending what they are comfortable with, even if it is 15 years obsolete. The AAC community as a whole seems to not realize the voice quality required for someone to hold a job.

To be honest, I’m not entirely sure how I can best assist you in your endeavor. Xpress-It is available on my website, my blog is at http://adayinthelifeofaperson.spaces.live.com/. You might possibly convince me to write a few articles, but be aware that I tend to “call things as I see them.” I am not always sympathetic to my fellow disabled person, as I often find them surrounded by an air of defeatism. Life is pretty brutal and uncompromising, but it is also intrinsically filled with possibilities. As long as someone has options, he should be flogging them hard to improve his life.

Scott

—–Original Message—–
From: Tao Ju [mailto:taoju@cs.wustl.edu]
Sent: Thursday, February 01, 2007 11:00 AM
To: Scott Royall
Subject: Cerebral Palsy (fwd)

Scott,

See the forwarded message below.

Maybe this is helpful

Tao

———- Forwarded message ———-

Date: Thu, 01 Feb 2007 11:51:48 -0500

From: Chris Glavin <chris.glavin@k12academics.com>

To: taoju@cs.wustl.edu

Subject: Cerebral Palsy

Hi,

My name is Chris Glavin. I run a website devoted to providing resourceful

information for a number of topics in education and disabilities and

disorders. I have created an information page on Cerebral Palsy including

History, Cause, Incidence and Prevalence, Types, Signs & Symptoms, Imaging

Findings, Prognosis, Treatment, Spastic, Support Services, Special Education

Schools, Camps, Books, Videos, Magazines & a Community Discussion Group with

members from all over the U.S. Please take a moment out of your day to visit

the page. If you would like to help in any way please do not hesitate to

contact me. I am always looking for individuals interested in providing

articles, resources or have any services for individuals with Cerebral

Palsy.

http://www.k12academics.com/cerebralpalsy.htm

Thanks!

Chris Glavin

K12academics.com

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Posted by Royall

Texas Assistive Technology Regional Conference, Houston, TX June 25-27, 2007

February 5, 2007