Yesterday I sat in on an all-day city-sponsored workshop ...
(charrette) on the Ford Peninsula development. It got its name from the amazing Ford Plant that is presently being restored and reconfigured to serve new purposes. It also sits smack in the middle of the new Rosie the Riveter Memorial National Park (of which I'm now a staffmember).
The event brought together in council chambers real estate developers, councilpersons, city staff, redevelopment agency staff, the Port Authority, environmentalists, and various industrial interests that are currently located in the target area. Judy Hart, the director of the park, was to make a presentation. The park is a major factor in the development of the proposed shoreline development. I was there to begin to absorb and gain a better understanding of the NPS' public position on related projects and potential areas of conflict.
It seemed quite clear to me that the proposed new developments (lots of residential) was not taking into account the fact that there is an existing community with its own unique culture and history into which new development must blend. At least that was true at the table where I was an observer during the breakout periods. They were busily putting ideas to paper (with transparencies) of what exists and what can be imagined. I asked at one point whether -- with all of the new residential properties being proposed -- would it not be smart to set aside a school site? Foolish me. A young staffer from Redevelopment told me that this would be housing for "empty nesters." Right. That would pretty well describe my condo complex, and most of the residential construction that I'm looking at both deep in the city and presently being erected at the outskirts. They look like rabbit warrens; more warehousing than housing. Hadn't thought much about that before, but it set off a train of thought that persists, even now... .
I've lived through a time when we've gone from senior neglect to what may well be an over-abundance of senior housing and services. It's been the easiest kind of construction to find funding for. HUD is there and ready to serve. We may need to re-think that approach. I'm sure that such an idea is unpopular and that voicing the thought might be unwise, but this is MY blog, and I get to say whatever pleases me.
While I surely appreciate all the added attention paid to my generation, it's also true that we are receiving more and contributing less to the whole than any other segment of the population. By that I mean that I'm way past the time of acquisition. I'm no longer feeding the consumer economy since I buy almost nothing these days. Am far past the need for home appliances. Have been the same clothing size for many years so buy almost no clothing. Last (used) car I purchased was 8 years old. Have received every kitchen gadget on the market as birthday or Christmas gifts over the years. I can access affordable senior housing when I decide to, or, can do a reverse mortgage in order to remain in my condo -- if that be my choice. Senior's lives are set in many ways. Would that my sons and the young families of their generation had the same advantages.
Along with many others, my greatest expense is using my financial resources to support the lives of my kids when necessary -- and at the end of life. They're the forgotten generation. Yet, they are the feeders of this consumer economy since it is those young families that buy those appliances, purchase homes and cars and toys and camping gear and gym memberships and all the rest that my generation is rarely in need of.
Empty Nesters as a class provide for the developers a fast turnaround on their investment. Take a look at Emeryville, just off the Interstate. Residential developers and the commercial developers of shopping centers have become the de facto city planners. Those who are young and childless seem more like transients, who will live among us until they become parents, then its off to the burbs to where the best schools are. Many live lives that are not necessarily rooted in the community since there is little need for civic involvement. At the end of the day they see the entire Bay Area as their playground and are more apt to spend their leisure dollars in nearby San Francisco, or the Napa or Monterey Valleys. There are exceptions, of course, since many of the city staff and officials live in Marina Bay, and continue to serve. But I'm speaking of those who will inhabit the hundreds of proposed new housing, and who will choose to live here because of the affordability and the scenic values while working and spending time and money elsewhere in the region.
Unless there is some attention paid to the need for blending family features into the new shoreline development, I see a invisible wall of separation evolving between the new and the old. Segregation based upon class may simply replace segregation based upon racial and ethnic differences. I see a red flag that needs to be noticed, but I have no idea how to deal with it; at least not yet.
I'm still struggling with identifying the differences between segregation and affinity groupings. I see as appropriate people gathering together and even choosing to live in close proximity to others like themselves. I've surely attended a lifetime of all-black social events, though in this period in my life there are fewer of them. Have also often been the exception in an all-white gathering, and that seemed okay, too. There are surely cultural differences -- and I find those fascinating. Just as there are cultural differences between fencers and bowlers, they are only that; cultural differences within the context of a common humanity.
Perhaps this can best be explained in this way:
I was once an active fan and occasional emcee for the Oakland Interfaith Gospel Choir. At its inception it was composed of primarily white singers who loved to sing black gospel music. The group had its beginnings at Jazz Camp one summer. The conductor was a brilliant young African American whose father was a noted jazz pianist whom I greatly admired, Ed Kelly. Over the years the choir attracted more and more black singers, though it remained primarily white. The music became more and more authentically "black." I remember having a conversation with one of the board members (I was a member of Rhythmic Concepts that was the choir's sponsoring body) that the experience really required an "affirmative action" audience in order for the music to become fully authentic. I knew that hearing the same music by the same choir was dramatically different depending upon whether it was being sung before black or white audiences.
I watched over the years, and -- in time -- more and more African Americans became devoted fans and the choir's voice became more and more real. When the time came that the audience held a critical mass of black folks, the "call and response" that is so much a part of the black gospel experience, came to life, and the experience was now -- not politely "white," but lustily "black!" Conductor, Terence Kelly, prodded that call and response into being by instructing the audience, but it eventually took root without prompting.
I'm not precisely sure what I'm trying to get at here, but I'll keep trying until I understand it better myself. I understand it in the context of music, but have difficulty getting to the gist of it beyond that. It's something about the fact that -- in the context of a white worship service -- the music is but one element in the liturgy. In the black church, the music IS the act of worship. Worshippers (read that audiences) respond, individually, and not collectively, to the pulpit(performance) Maybe you can help ... .
Something vital is lost when the cultural differences are not honored and/or appreciated for what they are.
There's something here about the importance I feel of the need to use arts and culture as the glue -- the binding -- in the blending of this community. And in using the Convention Center as the new image builder through what happens there. There's so much in this city to build upon. The important work was imposed upon the city in the WWII years. We're here now after much struggle, with that experience plus the Civil Rights years to inform our next period of social evolution. Embracing those differences may be the key to whatever comes next. In the witnessing of a kind of dizzying re-birth, we have the opportunity to do some marvelous things -- given the heart to not be led by the nose by those who have brought us the cookie-cutter homogeneity we're seeing all around us. Would that we could retain some of the unique diverse cultural environment that not nearly enough of us see as worth preserving.
Maybe working with the NPS will help me to re-live and pass along some of that history. Maybe I'll meet others of my generation who can help in that effort. Just maybe -- I'm precisely where I ought to be at this point in my personal journey. We'll see.
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Saturday, July 24, 2004
Settled in at last ...
This week brought some finalty to the state of indecision that has plagued me for several months. I've accepted the NPS position, as an emergency hire for the next 60 days, then we'll see. By that time I will either have bombed totally, or, they will find me especially suited to the work and will ask me to stay on.
Budget considerations prevents Mayor Anderson from replacing the Aides position until January. That would have been the better choice since it would have fulfilled my retirement requirements, but I really do need to be earning my living and the NPS offers new areas of learning and some financial security, though I will surely not find myself in the Fortune 500 on this salary.
My duties will mostly involve outreach to the city, the partners, our congressional rep, and state (Loni Hancock), plus some duties involving the creation and maintenance of an NPS library of studies, documents, and other materials that will support the work of this National Park and its staff. Do I know anything about setting up libraries? Nope. Can I learn? Most assuredly. Besides, there's a young Ranger (woman) who serves as the staff technie and who has an aunt and mother who were library specialists. You got it. I work for a while at Elizabeth's elbow and absorb by osmosis enough to do the job. Will spend the next sixty days developing the "pegs" in my head upon which I will begin to hang new knowledge.
The outreach and public relations portion of the job will be transferrable from past work history. Got lots of "pegs" to take care of that, and much of that history and experience was acquired over the past five years right here in this county -- so should serve me well.
So much to write about. So little time ... .
Here in Richmond, as in a growing number of cities, city council meetings are televised on the cable access channel. Tuesday night viewing has become a ritual. This was the way I kept up with the city's concerns and struggles over the years for the purpose of keeping abreast for my work. The county, school board, state assembly and senate, plus the CSPAN coverage of federal goings-on make for an informed electorate. I took advantage of every chance to hold my (virtual) seats in every one of these chambers over the years, and have found the opportunity invaluable. Having a chance to be a fly on the wall of congressional hearings that come to us without comment is the greatest gift to the democracy that one can imagine. I often wonder how many citizens take full advantage of this window into the machinations of law-making?
That is a prelude to something presented this past week before council that more than peaked my interest:
There is a program for the developmentally disabled that has been maintained by the city to the tune of $150,000/annually. Along with many other programs under the recreation department's supervision, it is facing termination in another month or so. The parents have been petitioning the council for several weeks, coming to the podium with their disabled youngsters in tow to speak haltingly on the mike and to the unseen public as well. It has been heart-rending to see.
This is a population that was one of my areas of responsibility when I worked for Loni. I attended many a meeting with the developmentally disabled community, the professionals who work with clients and families, and know them to be some of the most dedicated people on the planet. They work with a fierce dedication that is almost unequalled. I know because I'm one of them.
The director of NIAD (National Institute for Artists with Disabilities) was there at the mike presenting one possible answer to the city's dilemma. It was clear that there was not the heart to cut this program if any possibility remained to save it. Pat was proposing that the participants in the city's program be folded into NIAD, but what she would need would be that the city provide a van or bus for transportation, and enough subsidy to make their inclusion financially practical to NIAD. It was a generous offer.
Over the course of the evening's discussion, however, I learned that the city's program involved only 10 clients at the cost of $10,000/annually each. And, that many of those being served were not residents of the city. Plus, that there is a waiting list of 45 who cannot be served for lack of resources and space.
Thought about Dorian. And about NIAD. Something was amiss here... .
Dorrie's 5 hours-a-day 5 days-a-week NIAD involvement costs me not a cent. Her education and training that has involved several years at The Cedars in Marin County, later with 5 years at St. Vincents in Santa Barbara, and all of the years since with supportive living services at Clausen House in Oakland have come from her Lanterman Act entitlements. The State of California through Lanterman assumed financial responsibility for her as an individual since childhood. She has always been in preparation for life without me, and, my role has been to be her initial referral source -- always to guide her toward some external resource to satisfy her needs. It may be rough, but she'll survive without me one day. Her world has been made up of social workers, case managers, psychologists, job coaches, athletic coaches, and now painters and sculptors and textile workers and weavers, and her vocabulary has grown to accommodate all of it.
What was the difference?
I watched the worried parents on the screen -- knowing how desparately they needed the respite from caretaking. Saw the genuine concern on the faces of the city elected officials behind those desks -- finding it so difficult to hold to their budgetary restrictions (perhaps a deficit of $38,000,000)in the face of this human tragedy. Most of the community centers and afterschool programs serving "normal" kids have been closed. The library has seen unprecedented cutbacks in services and staff. Yes, they voted to find $75,000 "somewhere" to keep this program afloat until at least the first of the year. "We'll have to take the money from other programs, but we'll find it somewhere." So sad. (And again I find myself hating presidential policy that has caused so much death and destruction to so many lives and that continue to rob cities of the revenues needed to survive.)
Then I started to wonder why all of those being served by the city's program were not clients of the Regional Centers? Did those parents know of those entitlements? Could it be? Was the city providing services that were redundant? Did they realize that NIAD is a nonprofit that is supported by a clientele that is fully supported by the Lanterman Act through the Regional Centers?
It was at this point that I realized that I've had a life-long attitude that it was I who was helping the state to take care of my daughter, not the other way around. The state was not helping ME to take care of her. She had a citizen's rights as one hopelessly disabled. Devoting my efforts to teaching her how to exercise those rights was my role -- as I saw it. She has received Social Security and MediCal since childhood, as a disabled person. That's a huge liability lifted from the family. She is still developmentally disabled, but she has been maximized in every way possible, I believe.
Do I assume that other parents know about the Lanterman Act? Do the city officials? I dropped an email to Councilman Gary Bell the next morning, telling him to research that Act and the web site of the Regional Center of the East Bay. I sometimes feel reticent to nudge people this way, I really don't know the councilpersons all that well, personally, but in this case it felt like the right thing to do. There are two others I probably should approach before the discussion goes too much further, Councilpersons Tom Butt and Mindell Penn, that may take care of it.
I offered through Bell to meet with the parent group from the city program. The council voted to turn down the NIAD offer, by the way, in favor of continuing the status quo. I'd love to check to see if families are fully aware of the available state resources. I may be being foolish. They may be as aware as I am, but have chosen another way to deal with their situations. But it couldn't hurt to check it out, right?
Cuddn' hoit, right?
This week brought some finalty to the state of indecision that has plagued me for several months. I've accepted the NPS position, as an emergency hire for the next 60 days, then we'll see. By that time I will either have bombed totally, or, they will find me especially suited to the work and will ask me to stay on.
Budget considerations prevents Mayor Anderson from replacing the Aides position until January. That would have been the better choice since it would have fulfilled my retirement requirements, but I really do need to be earning my living and the NPS offers new areas of learning and some financial security, though I will surely not find myself in the Fortune 500 on this salary.
My duties will mostly involve outreach to the city, the partners, our congressional rep, and state (Loni Hancock), plus some duties involving the creation and maintenance of an NPS library of studies, documents, and other materials that will support the work of this National Park and its staff. Do I know anything about setting up libraries? Nope. Can I learn? Most assuredly. Besides, there's a young Ranger (woman) who serves as the staff technie and who has an aunt and mother who were library specialists. You got it. I work for a while at Elizabeth's elbow and absorb by osmosis enough to do the job. Will spend the next sixty days developing the "pegs" in my head upon which I will begin to hang new knowledge.
The outreach and public relations portion of the job will be transferrable from past work history. Got lots of "pegs" to take care of that, and much of that history and experience was acquired over the past five years right here in this county -- so should serve me well.
So much to write about. So little time ... .
Here in Richmond, as in a growing number of cities, city council meetings are televised on the cable access channel. Tuesday night viewing has become a ritual. This was the way I kept up with the city's concerns and struggles over the years for the purpose of keeping abreast for my work. The county, school board, state assembly and senate, plus the CSPAN coverage of federal goings-on make for an informed electorate. I took advantage of every chance to hold my (virtual) seats in every one of these chambers over the years, and have found the opportunity invaluable. Having a chance to be a fly on the wall of congressional hearings that come to us without comment is the greatest gift to the democracy that one can imagine. I often wonder how many citizens take full advantage of this window into the machinations of law-making?
That is a prelude to something presented this past week before council that more than peaked my interest:
There is a program for the developmentally disabled that has been maintained by the city to the tune of $150,000/annually. Along with many other programs under the recreation department's supervision, it is facing termination in another month or so. The parents have been petitioning the council for several weeks, coming to the podium with their disabled youngsters in tow to speak haltingly on the mike and to the unseen public as well. It has been heart-rending to see.
This is a population that was one of my areas of responsibility when I worked for Loni. I attended many a meeting with the developmentally disabled community, the professionals who work with clients and families, and know them to be some of the most dedicated people on the planet. They work with a fierce dedication that is almost unequalled. I know because I'm one of them.
The director of NIAD (National Institute for Artists with Disabilities) was there at the mike presenting one possible answer to the city's dilemma. It was clear that there was not the heart to cut this program if any possibility remained to save it. Pat was proposing that the participants in the city's program be folded into NIAD, but what she would need would be that the city provide a van or bus for transportation, and enough subsidy to make their inclusion financially practical to NIAD. It was a generous offer.
Over the course of the evening's discussion, however, I learned that the city's program involved only 10 clients at the cost of $10,000/annually each. And, that many of those being served were not residents of the city. Plus, that there is a waiting list of 45 who cannot be served for lack of resources and space.
Thought about Dorian. And about NIAD. Something was amiss here... .
Dorrie's 5 hours-a-day 5 days-a-week NIAD involvement costs me not a cent. Her education and training that has involved several years at The Cedars in Marin County, later with 5 years at St. Vincents in Santa Barbara, and all of the years since with supportive living services at Clausen House in Oakland have come from her Lanterman Act entitlements. The State of California through Lanterman assumed financial responsibility for her as an individual since childhood. She has always been in preparation for life without me, and, my role has been to be her initial referral source -- always to guide her toward some external resource to satisfy her needs. It may be rough, but she'll survive without me one day. Her world has been made up of social workers, case managers, psychologists, job coaches, athletic coaches, and now painters and sculptors and textile workers and weavers, and her vocabulary has grown to accommodate all of it.
What was the difference?
I watched the worried parents on the screen -- knowing how desparately they needed the respite from caretaking. Saw the genuine concern on the faces of the city elected officials behind those desks -- finding it so difficult to hold to their budgetary restrictions (perhaps a deficit of $38,000,000)in the face of this human tragedy. Most of the community centers and afterschool programs serving "normal" kids have been closed. The library has seen unprecedented cutbacks in services and staff. Yes, they voted to find $75,000 "somewhere" to keep this program afloat until at least the first of the year. "We'll have to take the money from other programs, but we'll find it somewhere." So sad. (And again I find myself hating presidential policy that has caused so much death and destruction to so many lives and that continue to rob cities of the revenues needed to survive.)
Then I started to wonder why all of those being served by the city's program were not clients of the Regional Centers? Did those parents know of those entitlements? Could it be? Was the city providing services that were redundant? Did they realize that NIAD is a nonprofit that is supported by a clientele that is fully supported by the Lanterman Act through the Regional Centers?
It was at this point that I realized that I've had a life-long attitude that it was I who was helping the state to take care of my daughter, not the other way around. The state was not helping ME to take care of her. She had a citizen's rights as one hopelessly disabled. Devoting my efforts to teaching her how to exercise those rights was my role -- as I saw it. She has received Social Security and MediCal since childhood, as a disabled person. That's a huge liability lifted from the family. She is still developmentally disabled, but she has been maximized in every way possible, I believe.
Do I assume that other parents know about the Lanterman Act? Do the city officials? I dropped an email to Councilman Gary Bell the next morning, telling him to research that Act and the web site of the Regional Center of the East Bay. I sometimes feel reticent to nudge people this way, I really don't know the councilpersons all that well, personally, but in this case it felt like the right thing to do. There are two others I probably should approach before the discussion goes too much further, Councilpersons Tom Butt and Mindell Penn, that may take care of it.
I offered through Bell to meet with the parent group from the city program. The council voted to turn down the NIAD offer, by the way, in favor of continuing the status quo. I'd love to check to see if families are fully aware of the available state resources. I may be being foolish. They may be as aware as I am, but have chosen another way to deal with their situations. But it couldn't hurt to check it out, right?
Cuddn' hoit, right?
Sunday, July 18, 2004
Summer's back,
meaning long cold mornings, sun-filled warm afternoons, and cool as February evenings. This is June in the S.F. Bay Area. I love such days, though I sometimes miss the heat of the valley. On such days this time of year, there can be a 20 degree difference within a 15 mile radius. If we really want "summer" it's just a short trip away by car. Micro-climates are a feature of our area -- year round. In winter, we drive to the snow. Three hours and we're up to our bellies in the white stuff. "Going to the snow" is much like "going to Disneyland." We ski and loll around the hearth sipping cocoa for a day in a rented time-share then leave it all to return to what passes as winter for us with no streets to plow nor pipes to burst. Nature has treated us quite sensibly, I think. For that, a little June morning and evening fog is a reasonable trade-off. As my late Uncle Louis remarked on one of his two trips from New Orleans, "...(laughing crazily!) who ever heard of vendors selling hot soup at a baseball game!" He'd gone with friends to Candlestick Park to see the Giants play -- that was in June as I recall.
Dorian just called from the Mall. We're entertaining one of her friends from Clausen House this weekend. He is Chris Moore, a stocky 5'5" who is also mentally retarded, but who is literate. He is easily identified by his coke-bottle eyeglasses and protective white bicycle helmet -- worn at all times as a defense against the unpredictable seizures he suffers. He has a shunt in his head that drains off fluids that collect and effects his ability to function.
I sometimes forget how much harder life could be. Chris's mother died when he was just a baby. His father remarried but lives many miles away in a small town on the Mendecino Coast. Chris lives a lonely life in a small apartment shared with a blind roommate in an Oakland Lakeside District near to where Dorian lived. He is another client of Clausen House and the Regional Center of the East Bay. For a while they shared case managers.
Dorian and Chris have an interesting friendship. She is bossy and very maternal and here's a guy who needs mothering desparately. She has imagination and a flair for the dramatic, but has no way to record any of that since her brain damage lies mainly in the visual perceptual areas making her illiterate. You might describe her as Dyslexis-Extremis (if there were such a word). She is highly verbal with a surprisingly large vocabulary. Chris is almost mute with various grunts, but can express himself adequately when the need arises. He reads well, and has worked in the mailroom of Kaiser for many years despite serious narcolepsy. Their accommodation to their deficits? Dorian dictates her journal in a lovely cloth-covered binder while Chris faithfully records every word for her. It's a wonder to watch.
Every six weeks or so, Chris spends the weekend with us here. He's an easy guest since there's nothing more interesting to him than wandering through Hilltop Mall -- just a block or so away from our condo.
Yesterday was eventful.
First mistake: Not wanting to drive in to pick him up at his apartment in Oakland, we carefully gave him directions that would bring him to Richmond on the BART train. He makes an occasional 150 mile trip by bus to Willits (in Mendecino County to the north), to visit his father, so it didn't seem too outrageous. He called us as instructed as he was leaving home to walk to BART. We figured about 45 minutes for the walk (at his slow pace) and the boarding of the train and trip to our station. We left home at 3 o'clock in plenty of time to meet him. We waited until 9 trains has come and gone. No Chris. We asked several times for the booth attendant to page the other stations so that we could find out where he'd mistakenly landed. She became impatient and finally told us to move on. Could he have had a seizure?
We left the station and drove to two others, and found him not. Finally, at around 5:30 we returned home to find a phone message that he was "at the station and waiting for us." No station named. The answering machine timed the call at 4:11. Frustration!
After much driving around, again, we returned home (it's now after six) and he called again. This time he told me that he was standing near Walgreens, Burger King, and one other building that I could identify as an intersection near the Richmond BART station. "Walk to the corner of Marina Way and Macdonald Avenue (this was it!), Chris, and we'll pick you up in about ten minutes." Back into the car, to the center of old Richmond, no one standing at the intersection. Dorian happened to look at the front of Walgreen's in the nearby strip mall and there was Chris. His bicycle helmet, crammed backpack, and as always -- ski jacket making him easily identifiable among the people and cars. He'd not heard the pages since he'd left the BART station immediately upon arrival. We'd told him to stand at the ticket booth until Dorian arrived to claim him.
That was yesterday.
Today the two of them walked to the nearby Hilltop Mall. Not long after they'd left, Dorian called to say that Chris was lost again. He'd wandered away soon after they'd arrived at Sears and she couldn't find him. We spent the next two hours standing at the railing of the upstairs -- scanning the Sunday crowd for a sign of that damned bicycle helmet! When found (and it was Dorrie, again, who picked him out of the crowd), he was emerging from a cellular phone store with a new phone. It was all quite logical. He was aware that he was lost, couldn't find a phone anyway, and therefore went into the cellphone store and made a $252 contract deal for a way to find us.
Remembered then the irony that yesterday he'd found himself lost, but lacked the ability to know that calling Dorian on her cell would have reached us while leaving messages on the home phone would not (since we were out looking for him).
This is life with the retarded.
Upon reaching home, Dorian and I immediately helped Chris to pack his overstuffed backpack for the drive back to Oakland. He'd (we'd) spent the entire weekend being lost. That this was not extraordinary for him was obvious by the fact that at no time did he exhibit either fear or frustration. Being lost in the world was simply a part of "being." He'd tried to enlist the help of one of the security people at the Mall, because he was carrying our address and phone numbers. He couldn't make himself understood, obviously, so the purchase of the phone.
Being "lost in the world" is also common to most of us at some time or another, I suppose. It may simply be that we have the sophistication to mask such feelings. For poor Chris, it's a constant factor. He's learned to live with it. I do wish "the world" would deal with these fragile souls with more compassion, though. So much effort has to be expended into simply dealing with time and space ... .
meaning long cold mornings, sun-filled warm afternoons, and cool as February evenings. This is June in the S.F. Bay Area. I love such days, though I sometimes miss the heat of the valley. On such days this time of year, there can be a 20 degree difference within a 15 mile radius. If we really want "summer" it's just a short trip away by car. Micro-climates are a feature of our area -- year round. In winter, we drive to the snow. Three hours and we're up to our bellies in the white stuff. "Going to the snow" is much like "going to Disneyland." We ski and loll around the hearth sipping cocoa for a day in a rented time-share then leave it all to return to what passes as winter for us with no streets to plow nor pipes to burst. Nature has treated us quite sensibly, I think. For that, a little June morning and evening fog is a reasonable trade-off. As my late Uncle Louis remarked on one of his two trips from New Orleans, "...(laughing crazily!) who ever heard of vendors selling hot soup at a baseball game!" He'd gone with friends to Candlestick Park to see the Giants play -- that was in June as I recall.
Dorian just called from the Mall. We're entertaining one of her friends from Clausen House this weekend. He is Chris Moore, a stocky 5'5" who is also mentally retarded, but who is literate. He is easily identified by his coke-bottle eyeglasses and protective white bicycle helmet -- worn at all times as a defense against the unpredictable seizures he suffers. He has a shunt in his head that drains off fluids that collect and effects his ability to function.
I sometimes forget how much harder life could be. Chris's mother died when he was just a baby. His father remarried but lives many miles away in a small town on the Mendecino Coast. Chris lives a lonely life in a small apartment shared with a blind roommate in an Oakland Lakeside District near to where Dorian lived. He is another client of Clausen House and the Regional Center of the East Bay. For a while they shared case managers.
Dorian and Chris have an interesting friendship. She is bossy and very maternal and here's a guy who needs mothering desparately. She has imagination and a flair for the dramatic, but has no way to record any of that since her brain damage lies mainly in the visual perceptual areas making her illiterate. You might describe her as Dyslexis-Extremis (if there were such a word). She is highly verbal with a surprisingly large vocabulary. Chris is almost mute with various grunts, but can express himself adequately when the need arises. He reads well, and has worked in the mailroom of Kaiser for many years despite serious narcolepsy. Their accommodation to their deficits? Dorian dictates her journal in a lovely cloth-covered binder while Chris faithfully records every word for her. It's a wonder to watch.
Every six weeks or so, Chris spends the weekend with us here. He's an easy guest since there's nothing more interesting to him than wandering through Hilltop Mall -- just a block or so away from our condo.
Yesterday was eventful.
First mistake: Not wanting to drive in to pick him up at his apartment in Oakland, we carefully gave him directions that would bring him to Richmond on the BART train. He makes an occasional 150 mile trip by bus to Willits (in Mendecino County to the north), to visit his father, so it didn't seem too outrageous. He called us as instructed as he was leaving home to walk to BART. We figured about 45 minutes for the walk (at his slow pace) and the boarding of the train and trip to our station. We left home at 3 o'clock in plenty of time to meet him. We waited until 9 trains has come and gone. No Chris. We asked several times for the booth attendant to page the other stations so that we could find out where he'd mistakenly landed. She became impatient and finally told us to move on. Could he have had a seizure?
We left the station and drove to two others, and found him not. Finally, at around 5:30 we returned home to find a phone message that he was "at the station and waiting for us." No station named. The answering machine timed the call at 4:11. Frustration!
After much driving around, again, we returned home (it's now after six) and he called again. This time he told me that he was standing near Walgreens, Burger King, and one other building that I could identify as an intersection near the Richmond BART station. "Walk to the corner of Marina Way and Macdonald Avenue (this was it!), Chris, and we'll pick you up in about ten minutes." Back into the car, to the center of old Richmond, no one standing at the intersection. Dorian happened to look at the front of Walgreen's in the nearby strip mall and there was Chris. His bicycle helmet, crammed backpack, and as always -- ski jacket making him easily identifiable among the people and cars. He'd not heard the pages since he'd left the BART station immediately upon arrival. We'd told him to stand at the ticket booth until Dorian arrived to claim him.
That was yesterday.
Today the two of them walked to the nearby Hilltop Mall. Not long after they'd left, Dorian called to say that Chris was lost again. He'd wandered away soon after they'd arrived at Sears and she couldn't find him. We spent the next two hours standing at the railing of the upstairs -- scanning the Sunday crowd for a sign of that damned bicycle helmet! When found (and it was Dorrie, again, who picked him out of the crowd), he was emerging from a cellular phone store with a new phone. It was all quite logical. He was aware that he was lost, couldn't find a phone anyway, and therefore went into the cellphone store and made a $252 contract deal for a way to find us.
Remembered then the irony that yesterday he'd found himself lost, but lacked the ability to know that calling Dorian on her cell would have reached us while leaving messages on the home phone would not (since we were out looking for him).
This is life with the retarded.
Upon reaching home, Dorian and I immediately helped Chris to pack his overstuffed backpack for the drive back to Oakland. He'd (we'd) spent the entire weekend being lost. That this was not extraordinary for him was obvious by the fact that at no time did he exhibit either fear or frustration. Being lost in the world was simply a part of "being." He'd tried to enlist the help of one of the security people at the Mall, because he was carrying our address and phone numbers. He couldn't make himself understood, obviously, so the purchase of the phone.
Being "lost in the world" is also common to most of us at some time or another, I suppose. It may simply be that we have the sophistication to mask such feelings. For poor Chris, it's a constant factor. He's learned to live with it. I do wish "the world" would deal with these fragile souls with more compassion, though. So much effort has to be expended into simply dealing with time and space ... .