InterText v9n5: The Door Behind It by Michael Sato

The Door Behind It
Michael Sato
He deserves the best care possible. But what that means depends on your perspective.

freedom and equality
since 1982
1/5/96
Mr. Matthew Bottacci:
It's been a while since we've been in contact and I wanted to remind you that your brother Galen's first annual funding review is coming up soon, at the end of next month. Believe me, I know how desks get crowded and things get put aside. If you'll recall, I included in my last letter to you--which I sent in November--a form for you to look over and sign, which indicates your support for Galen's present living situation and your willingness to see that the funding for Galen's program be renewed.
Because you are Galen's conservator, it is very important that Harbor Vocational and Residential Services be able to present this document to the board on the day of Galen's review. In case you have misplaced it, I am enclosing an additional form with this letter, along with a prepaid envelope so that all you have to do is sign it and drop it in the mail--preferably by the end of the month, as I will be on vacation from February 1 to February 15.
I hope this will not be too much trouble.
Sincerely,
Lance Cameron
Community Support Facilitator
Harbor Vocational and Residential Services.

freedom and equality
since 1982
1/11/96

Mr. Bottacci:
Thank you for your letter. I appreciate your frankness. Since Friends of the Mentally Retarded was formed in 1994 it has been surprisingly aggressive in promoting its ideology, but I did not know it had taken an interest in Galen's case. I would caution you, respectfully, that Friends is a highly politicized entity whose agenda opposes any interest that works to remove the anachronistic and unnecessary barriers between mentally challenged individuals and mainstream society. The claims they make--that our programs are unsafe or mismanaged--are based entirely on rumor and anecdote, and not at all applicable to Galen's living environment.
It is true that Galen is very special to us. He is one of our most important customers, potentially crucial to the future of the program and to the lives of any number of similarly challenged individuals. This does not mean that we are using him. The Residential Support branch of HVRS was founded on the belief that there exists no reason that the natural right to learn personal responsibility, to appreciate the value of risk, and most of all, to express freedom of choice within the framework of a mainstreamed living environment should be denied anyone because he or she is mentally or physically challenged. That is to say, we believe these rights to be transcendental, inclusive, universal. Despite what Friends or any other voice may suggest, it is for this reason and no other that we decided one year ago to become the first residential support service of its kind to review the applications of those who are situated outside of the relatively small circle of so-called "high-functioning" candidates that are considered by other similar agencies. When we accepted Galen's file, Galen became the first individual in any residential support service in this state on whom no criteria whatever regarding his functionality were imposed.
I see no basis for the charge that by this we are invoking mere abstractions in order to validate neglect or to allow consumers to, as you say, "stagnate." On the contrary, we have from the beginning been supplementing the provision of freedom vigorously with programs designed to ensure that Galen's progress in the mainstreaming process continue. To cite one concrete example, just this week our behaviorist Linda Weber observed Galen at his home and is this moment working to obtain the loan of a speaking device that, through cutting-edge technology, should allow Galen to express his desires even more easily than he is presently able. Galen's housemate, Andrew, has already agreed to take primary responsibility for whatever training is requisite to the effective use of this device.
About the matter of the backyard, I must ask once again for your understanding and patience, and trust that I am as concerned as you about the procuring of lawn maintenance equipment, or rather, our failure to do so. Please be assured that this unusual situation is an aberration, caused by a budgeting oversight that was singular and will not be repeated. I sympathize completely with your observation that the very reason we chose this house for Galen was that it has a large backyard that would serve to allow Galen to go outside at will. It is unfortunate that, over the course of the year, we have been unable to find the means to landscape the yard to make it a safe area for Galen. We are certainly continuing, in earnest, our search for the requisite funds.
Matt, please bear in mind that there are interests that would prefer that specially challenged people remain separated from society, and that the true motives of these interests are not altruistic. Galen's home is one of the most promising and exciting steps forward in the history of care provision to challenged individuals, and posterity will be grateful for our good faith and endurance.
If there is any matter which you would like to discuss in more depth, please call me at the office until seven or eight, and later than that, call me at home. And again, as much as I regret the inconvenience, I will not be available between February 1 and February 15. Had I the choice I would not take the time off now, but HVRS's mandatory vacation policy has finally, after five years, caught up with me. At this writing my fiancée, Gwen, proclaims her interest in going to Hawaii. I have not yet decided where I want to spend my two weeks of freedom, but the very utterance of the word Hawaii makes me certain that it is not there. Hopefully Gwen and I can reach an agreement soon. Well, you know how it is.
Thank you again for your patience and support.
Sincerely,
Lance Cameron
Community Support Facilitator
Harbor Vocational and Residential Services

compassion, vigilance
1/13/96
Mr. Matthew Bottacci,
Thank you for contacting friends of the Mentally Retarded. Friends of the Mentally Retarded is comprised of volunteers who share the common belief that there are issues specific to mentally retarded individuals living apart from their families which are not adequately addressed by any other extant organization. As such, HVRS's rather aggressive mainstreaming program falls squarely into our field of interest. As chairperson for the Harbor-Easton chapter of Friends of the Mentally Retarded, I did know of your brother's "independent living" situation, but regrettably did not avail myself of the substance and details of his living environment prior to your inquiry. I am, frankly, ashamed to admit this since Galen's living situation seems to be quite unique, perhaps unprecedented, and therefore of considerable implication. After spending several hours researching Galen's background and observing him in his home, that I believe your concerns regarding Galen are extremely warranted and require urgent action.
I do not mean to sound hostile. Contrary to what is often believed, it is not the aim of Friends of the Mentally Retarded to raise opposition categorically to the work of HVRS and other new "mainstreaming" residential programs like it. In principle, we support HVRS's stated mission of providing its customers with opportunities to exercise freedom of choice and personal responsibility. Furthermore, I personally would never intentionally interfere with any program, whatever its ideology, that made a positive contribution to Galen's overall well-being and happiness. Neither would I question the basically good intentions of any employee of HVRS.
It must be remembered, however, that HVRS is a private interest, and therefore operates within, and is subject to many of the pressures incumbent to, the private sector. It would be irresponsible to deny the possibility that such an awkwardly situated agency might be tempted to extend an attractively phrased, if sometimes useful, ideology past the breadth of its real resources in order to widen its client base.
Friends of the Mentally Retarded holds as primary an individual's right to basic health and safety. One of our long-standing contentions with HVRS comes from their reluctance to staff homes with people who are properly trained in their field, that is, the provision of care to people with disabilities. As a case in point, Galen's live-in care giver, Andrew Lee, is still an undergraduate in college who applied for the job because he needed extra income to finish a degree in an unrelated field. Not that this in itself is to be held against him--he seems sincere in his concern for Galen--still, he himself admits to having, prior to this job, almost no contact with any developmentally disabled or otherwise handicapped person, and no working experience at all in the field of care provision. HVRS claims it is part of the "mainstreaming" process to deliberately hire staff who have had no experience with, and thus have "no prejudices" toward those with disabilities. We think this is a provocative and precarious position, and it is surely unreasonable to argue that there is no connection between it and the fact that since Galen moved into his home one year ago, he has been taken to the emergency room, by ambulance, no less than five times: once, when he stopped breathing during a seizure; two times for choking on non-comestible objects (a peach pit, a plastic fork); and two times for injuries suffered from falling. Both of the latter injuries were to the face and head, and probably would not have occurred had Galen been wearing his helmet. When I queried Galen's community support facilitator, Lance Cameron, as to why Galen did not wear his helmet, Mr. Cameron answered to the effect that the helmet had been discarded because it is "socially stigmatizing" and therefore obstructs the process of "mainstreaming" Galen into his community.
In the five years Galen spent at the state facility in Easton, Galen required hospitalization only one time.
HVRS responds to this alarming statistic by propounding the "value of risk," an idea wherein there is always inherent in freedom a certain amount of danger, but that this danger is outweighed by the larger benefits derived from personal independence. We have very serious doubts about the plausibility of this line; for us the right to basic physical safety is paramount and ought not be compromised by abstractions which, however noble sounding, may amount to something less in fact and deed.
When I visited Galen's home I asked Andrew about the nature of the choices that Galen was making and how he was using his freedom to choose and realize his desires. Andrew's response to me was so circuitous and vague I had to suppose he did not understand my question. I therefore asked Andrew if he could demonstrate for me what he does by way of supporting Galen's desires. Andrew proceeded to proffer to Galen a number of verbal prompts regarding daily-life choices (Would you like to listen to music? Would you like spaghetti for dinner?), to which Galen seemed to be completely uninterested, if not uncomprehending. When I asked Andrew if I had caught Galen on a bad day, Andrew answered flatly that he did not expect Galen to respond to any of his prompts, and that in fact Galen has in the past year never once responded, verbally or otherwise, to any of the prompts that Andrew has on a daily basis given to him. Further inquiry was to reveal to me that so far as Andrew knew, Galen has not uttered a single intelligible word since moving into the home.
I was so surprised to learn this, especially since you told me that as a child Galen could produce short sentences, that I consulted Galen's former doctor at the state facility. Evidently Galen's file does show that when in school he possessed a vocabulary of some two hundred words, but that by the time he left the state home he had already been growing increasingly silent for the previous several years. The doctor believes that since finishing school it is likely that Galen has forgotten the words he then knew, or the mental effort required to produce utterances has increased so much as to be prohibitive. In the doctor's view, it is very unlikely that without a regimented and sustained program of education Galen would again be able to mark gains in this area of his functionality.
I think, Mr. Bottacci, that Galen's silence combined with the danger connate to his environment raise a near conclusive argument against the efficacy, if not the basic humanity, of HVRS's mainstreaming program. That said, I must include a note about Galen's backyard, if only because the backyard was to me the most disturbing feature of Galen's home. Galen's preoccupation with his backyard is very intense, and this preoccupation is the only exception I saw to his otherwise complete passivity and disinterest in his surroundings.
Ironically enough, it is finally with the backyard that HVRS takes up the issue of safety. Not that I would contest; the yard is a veritable wilderness by now. According to Andrew, the backyard has not been so much as mowed since the day they moved into the home. There are numerous large objects, mostly junk, strewn amongst the weeds, and in the center of the yard a large hole, perhaps four by four feet, half-filled with mud, that the previous tenants for some reason dug but failed to fill up again.
According to Andrew, Galen's daily activity consists largely of spending hours gazing at this backyard through the dining room window, and this is in fact what he did through most of my visit. He knows where the back door is, and frequently goes there to try to open it. Regrettably, the back door remains locked, and therefore the one thing that Galen shows an active interest in, he is forbade. When I queried Mr. Cameron about this situation, he told me that under the conditions of the lease HVRS accepted the responsibility to landscape the yard to meet its safety standards. There had been an oversight in budgeting, and was therefore no means at all either to rent or purchase yard maintenance equipment or to hire a professional landscaping service. Mr. Cameron was glib, but I'm afraid I don't find the oversight as excusable as he.
I hope this letter proves to be of use to you. In my view, that the safety standards of Galen's independent living arrangement are lower than those at the state facility in Easton seems likely; however, that Galen has benefited commensurately from his "freedom" is, at best, doubtful. Unless matters change by February's end, my recommendation to you will have to be that you seriously consider allowing Galen to return to his home in Easton, where he can be cared for by trained and experienced personnel, and the yard is always well kept.
Thank you again, Mr. Bottacci, for contacting Friends of the Mentally Retarded.
Sincerely,
Ann Pearson
Chairperson, Friends of the Mentally Retarded

Sent: Jan 20 1996 2:10 PM
From: Andrewl@aol.com
Re: Galen
Hey Matt, it's Dre. Sorry it took so long to get back to you. I got a bitch of a term paper to write that's already late, and if I don't pull a B or better I have to take the whole class over again. Not a nice thought for someone whose already been in college for five fucking years. And it doesn't help when your boss is having anxiety conniptions. The backyard, the woman from that mentally retarded group--and he was already cracking up over this vacation of his. A couple days ago he came in here with a pile of brochures from the travel agency and made me look at them because he can't make up his own mind where he wants to go. "I know there's somewhere," he says, "but I just can't think of the name of the place."
"How about France?"
"No, no. Not France."
"Why don't you go to Mexico?"
"Where I want to go," he says, getting all heated again, "is the one place in the world where no one will say to me, `Why don't you go to Mexico?'"
"Then Mexico it is."
"Why don't you go to Mexico? Why don't you go to Spain? Why don't you go to China, for God's sake? This is my first vacation, my first freedom, in five long years, and I want to go where I want to go. If everyone would just give me a little bit of space to figure it out."
All the brochures looked the same to me, too. Beaches, pretty buildings, some white people kissing. I wouldn't be going to any of those places either, but on the other hand, how do you know a place before you see the brochure? It's like the pictures on Galen's new speaking machine--that's what you asked about, right? Lance calls it a "want-board." It looks like the latest contraption from NASA, but actually it's not that big a deal, nothing more than a kind of tape recorder in the shape of a big board with some blank squares on it. What you do is put your own pictures of things into the squares, and then record a different sentence into the machine for each of the different pictures. Then, if you put your finger on a picture of a Coke, say, a recording inside the board says something like, "I'd like a Coke."
Lance said we should keep it simple at first, so for now, there's only two pictures on the board, one of a Coke and one of a 7-Up. "With this machine," he says, "Galen will be able to talk." I'm supposed to try fifteen times a day to get Galen to learn how to use the thing. So far, after three days and forty-five tries, he doesn't get it. I'll tell you the truth, Matt: I dislike the board. Galen's never going to be able to use the thing--not in three more days or three more years. They brought in the board because they think the reason Galen doesn't say what he wants is because physically he can't speak. They're wrong. Galen's got a tongue and a throat and a voice just like anyone else. What Galen doesn't have, that a guy needs to speak, is words. The board's not going to make any difference for Galen, because if you've got no words--words in your head--then how can you have pictures? To Galen a picture of a Coke means exactly what the word "Coke" means: nothing. And you can't want anything without a picture of it; a want is a picture. Without pictures you can't want anything at all except, maybe, for what's already there.
I gotta go.

freedom and equality
since 1982
1/24/96

Mr. Bottacci:
Thank you for keeping me apprised.
According to my understanding of the conclusions you reached from the recommendations of Ms. Pearson, you will not be supporting the renewal of funding at the end February unless the following conditions are before that time met:
1) Galen demonstrate, unambiguously, both the willingness and ability to express his will in some matter affecting the course of his daily life.
2) The issue of the backyard be resolved.
I would like to urge you, Matt, not to stand by these conditions. It may be very difficult to meet these conditions by the end of February.
Let me remind you that if Galen's funding is not renewed, he will in all likelihood be transferred back to the state facility in Easton. Please take a moment to remember the quality of life at the state facility that compelled you a year ago to seek an alternative for Galen. The lives of the residents of such facilities, however secure, are so thoroughly regimented in every aspect, so inexorably regulated and colorless, the residents themselves having virtually no opportunity to realize or even express their own individually conceived desires, that the lives become nothing more than imposed routines, lives without change, without plot--without the things that distinguish the lives of humans. Residents in the state-run facilities have no choice at all in matters such as when and what they will eat, where at the dinner table they will sit, when the meal is over, when they will go to bed, when they will wake up, when they will shower, when they will watch TV, what they will watch, or what they will wear. And it is hardly a secret that, in spite of its illegality, residents of these facilities are physically forced to comply to this regime. Residents therefore have no freedom at all, eventually, even in their own minds. The system in which they participate is therefore completely dehumanizing, and for a resident of this system there is no way out.
Remember, Matt, that Galen lived in the state facility for five years. That's five years of what amounts to a kind of incarceration. It is to be expected that it would take anyone--even someone who was not challenged in any other way--some time to adjust to a life in which he or she was free and allowed to make choices. I believe that there is inside of everyone a desire to make choices, and that it is this desire more than anything else that makes life a fulfilling and meaningful experience. If you believe this too, then I implore you to relax your conditions, and give your brother Galen a little more time and one more chance.
Very sincerely,
Lance Cameron
Community Support Facilitator
Harbor Vocational and Residential Services
P.S. I checked Galen's file. Ms. Pearson is correct. During Galen's stay at the state facility, he was taken to the emergency room only once. It seems one of the staff at the Easton facility broke two of Galen's fingers with a broomstick on a morning that Galen was slow to wake up for breakfast.

1/24/96
Mr. Matthew Bottacci:
I am writing to you in regard to your brother Galen Bottacci, at the request of the Community Support Facilitator at Harbor Vocational and Residential Services, Lance Cameron. My name is Linda Weber. I am a behavioral psychologist and I specialize in communication enhancement strategies for physically and mentally challenged individuals. After observing Galen, I was able to conclude within an acceptable level of probability that Galen does not communicate verbally to any recognizable effect. I therefore recommended that Galen's current program be supplemented with a Level One Portable Speaking Device. The device successfully enhances the communicative competence of about eighty-three percent of those to whom the devise is prescribed. There appears to be, however, a correlation between the length of time required to succeed in operating the device and the operator's measured level of intelligence. Mr. Cameron asked me to emphasize this point especially.
Sincerely,
Linda Weber

Sent: Jan 24 1996 10:46 PM
From: Andrewl@aol.com
To: Matthew Bottacci
I can't do that want-board with Galen anymore. I told Lance today. Damn, he was pissed.
Dre

freedom and equality
since 1982
1/29/96
Mr. Bottacci,
I'm sorry that I could not convince you to withdraw the conditions you set regarding Galen's home and his upcoming funding review. I know that what we all want is what's best for Galen, and that sometimes these decisions are difficult to make. Lance has been with us for five years and he is one of the most dedicated and able community support facilitators at HVRS. He will do everything he can in what time remains to see that your conditions are met.
In the meanwhile, I am enclosing the documents requisite to beginning the smooth and timely transfer of Galen's sponsorship from HVRS to the Easton state facility. I'm happy to respond to any questions you might have regarding these forms.
Sincerely,
Barbara Elfman
President
Harbor Vocational and Residential Services

Sent: Feb 5 1996 3:35 PM
From: Andrewl@aol.com
Re: Galen
Hey Matt, it's Dre again. There are three things that I have to tell you. One, I was wrong about Galen and the want-board. Two, I got a C on my paper. Three, I've had it with college and this job, and I need to move on. The whole situation here gives me the jeebs.
Hold on. Someone at the door.

freedom and equality
since 1982
2/2/96
Mr. Bottacci,
I'm happy to inform you that the matter of the backyard has been resolved, and also that Galen has begun to express his desires in a clear and unequivocal manner. As you requested, I have already contacted Ms. Pearson, and she will be visiting your brother's home this afternoon in order to observe him. She will be in touch with you shortly.
Yours,
Lance Cameron
Community Support Facilitator
Harbor Vocational and Residential Services.

Sent: Feb 2 1996 7:13 PM
From: Andrewl@aol.com
Re: Galen
Sorry there. That was the lady from the mentally retarded group that came over a while back. She wanted to see Galen do the want-board. No problem. He does it, and he does it all by himself. Think that's great? Don't thank me. After I told Lance I didn't want any part of the want-board we argued like dogs, but then instead of firing me he just took up the slack himself. Spent a lot of time--most of the past week--here with Galen and the want-board, trying to get Galen to learn the thing before vacation (even though he still didn't know where he wanted to go) because after vacation, he said, it would be too late. Let me tell you, that man has patience. He tried everything you can think of. He begged Galen to pay attention. But Galen never did anything but stare out the back window at that old backyard.
At the end of it I didn't know who I felt more sorry for, Galen or Lance. I came in that last day to find them sitting together in the darkening living room, quiet and gazing out the back window, the want-board abandoned on the table. All that time wasted, I thought. A real shame.
"Hey man, did your best," I said, because I hated seeing the two of them sit there that way.
"Andrew, do you still have the key to the back door?" Lance said.
"Yes."
"Go and get it."
I didn't like the sound of it, but I did what he said. It took me a few minutes to find it; it's never been used. When I came back out into the living room Lance pointed me over to the door. He said, "When I count to three, unlock it."
He counted to three. I swear Galen must have been counting along, because the instant I put that key in the lock and lock went `click' he popped from his chair and sped right across the room as fast as I have ever seen him run, grinning and laughing and waving his arms all over. But Lance popped up from his chair too, and he moved just a little bit faster. He slipped himself right between Galen and the little hallway in front of the door, and stuck that black board up under Galen's face.
I said, "That's not so cool."
"Just leave the door open until I tell you to close it." Lance nudged the board against Galen's chest, and Galen looked down at it, surprised, as if after all this time he'd never seen the thing before. Lance made a gesture toward the two big pictures of the Coke and the 7-Up, then lifted the machine, pretending to allow Galen to go through, then right away put the board back in front of him again. Galen looked over Lance's shoulder, at the open door, and then he looked hard at the machine for a long time, maybe two or three minutes. His whole face creased up with hard thought, struggling, painful thought, and then--I couldn't believe it--he lifted his hand to the board, and he pressed a button. The machine said, "I'd like a Coke." Lance put the can of soda to Galen's lips--not for long though, just long enough for Galen to get a taste--and then he pulled the can away. Then, Lance took one step back toward the door, so that Galen could move one step closer to the outside. When Galen figured out he couldn't go any farther, he put his hand to the board and pressed the button again. The board said, "I'd like a Coke," and Lance gave Galen another sip, just enough to get the taste, and took one more step back. Galen stepped forward, and pressed the button again, "I'd like a Coke," and Lance gave him another sip.
Lance said, "Close the door." And so I did.
Galen pressed the button again. "I'd like a Coke." And Lance gave him another sip.
We tricked your brother into wanting Coke.

vigilance, compassion
2/3/96
Mr Matthew Bottacci:
Yesterday I visited Galen's home in order to verify claims made by Mr. Cameron regarding improvements made to Galen's living conditions. I will say at the outset that I was very surprised, and impressed, by the appearance of the backyard. The hole was filled up, the ground cleared of hazardous objects, the weeds and brush mowed down. In the driveway was a pickup truck filled with rolls of sod, and Mr. Cameron was himself spreading one of them across an edge of the yard. While he did not say so, I was to learn from Andrew that the material and equipment had all been purchased by Mr. Cameron with his own means, and that Mr. Cameron was single-handedly landscaping the yard with donated vacation time. The work is not yet finished, but I expect the yard will be quite safe for Galen within several days.
At the time of my visit Galen was using his speaking device with some enthusiasm. There were six pictures on the board, all representations of drink or food items. Evidently Galen uses the board so continuously that he has gained weight, and he did seem healthy compared to how he looked the last time I visited. He has even, it seemed, forgotten about the backyard. It may be that with its appearance so changed, the backyard no longer holds whatever meaning it held for him previously.
Now, unlike before, Galen is able to acquire some of the things he wants. Should Galen continue to use the board, we should hope that Galen's staff over time increase the number of pictures so that Galen can enjoy an increasingly widening range of choices.
In light of these changes, I am no longer able to advise you to remove Galen from his current home. Galen will need a new live-in, of course, by the end of the month, since Andrew has resigned. I don't suppose HVRS will have a problem finding someone.
Sincerely,
Ann Pearson
Chairperson, Friends of the Mentally Retarded

Sent: Feb 5 1996 6:42 AM
To: Matthew Bottacci
From: Andrewl@aol.com
Re: outahere
Just wanted to say bye. College was a mistake, cost me five long years and a pile of money--I'll be in debt till I'm forty. But now it's behind me, and fit to be forgotten. I guess you heard about the backyard. It's finished now, and Lance has been trying to get Galen to go outside and enjoy the sun and breeze. Galen won't have anything to do with it. His world is that want-board, now. There's nothing else.
People ask me what I want to do next, when I leave here. I know there's something. But everything, when I say it, sounds wrong.
Dre

Michael Sato (michael661@msn.com) spent most of his life in the San Francisco Bay Area, but now lives in a factory town in Japan, where he teaches English, dabbles in translation, and waits for the dollar to weaken so that he can change his money and return to the U.S. His stories have appeared on the Internet in Eclectica and AfterNoon.
InterText stories written by Michael Sato: "Gidding" (v8n2), "The Door Behind It" (v9n5).

InterText Copyright © 1991-1999 Jason Snell. This story may only be distributed as part of the collected whole of Volume 9, Number 5 of InterText. This story Copyright © 1999 Michael Sato.