Where is the Family?

In response to a harrowing article on the front page of the Sunday New York Times, about three weeks ago, I wrote the following op-ed to the Times. It wasn't printed, or you can be sure you all would have heard! Funny, though, I didn't notice any op-eds in reponse to this very disturbing article (Abuse and Impunity at New York Group Homes, March 13, 2011). And although it was described as the first in a multi-part series, no other articles on the subject have appeared. Somebody on the editorial staff it seems has been doing a lot of "killing" of reportage. I wonder why. Anyway, below, to the small audience of my blog, you'll find what I had written.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * my (unprinted) Op-Ed

When we would pull up to the grounds of Letchworth Village, one of the large state-run institutions for the developmentally disabled in NY State that in its heyday housed up to 5,000 developmentally disabled men, women boys and girls, we felt like guests at another planet. We were there to pick up my brother and take him out for a drive, but as we signed our names in a large black ledger, no one gave us more than a nod, and we weren’t allowed into the day room, from which the strangest howls and moans emanated, nor the back room where Alan, my brother, slept. Alan would be led by the hand out to the waiting room, usually fitted out in a natty checked suit. (I’ve learned since then those nice clothes were kept aside for visits. Inside the day room, Alan’s worn and generic clothing was frequently covered in feces). But, oddly, we were all dismayed when we learned that Letchworth Village was closing.

My brother, who is now 60, is what they then called profoundly retarded and autistic. He has never spoken a word. When he’s upset he’ll raise his arms and flap his hands wildly.

My parents knew about the abuses. Rivera’s reports on network TV in the early 70’s included Letchworth Village along with Willowbrook. But they, along with the vast majority of parents, objected strenuously to the institutions’ closing, in large part because they feared that there would be poor oversight out in the community.

We were far luckier than the consumers described in the Times article (Abuse and Impunity at New York Group Homes). Alan’s IRA is an airy, light filled home, with a highly competent staff. Alan resides for most of the evening in a large soft armchair, waiting for a hearty home cooked meal. He has learned to smile.

But one line in the piece stood ut for me. “In many cases, the developmentally disabled do not have families actively involved in their lives.”

There are complicated reasons for a parent or sibling to not visit their family member. But one of the less discussed realities is that there’s an uncomfortable relationship between the family member and the staff in these State run group homes. You do a sort of “dance,” as a fellow sibling described it. And this is actually a very large problem, affecting the welfare of our disabled family members.

The one thing that stayed the same was that we still tiptoed around the staff that cared for my brother. We gauged what they wanted from us was – nothing. We were not expected to intervene in any significant way with our family member’s care. My parents accepted this without question. It was only after my father died, and I became Alan’s Legal Guardian that I began to question the status quo.

The issue that ultimately forced me to upend my learned acquiescence felt like a holdover from the institution – namely the persistent use of psychotropic drugs. Without any evidence of a behavior problem, other than a loud vocal “tic,” or involuntary repetitive sound, Alan was on at least three of these, some of them so strong they’re used typically on people with schizophrenia. And, indeed, Alan’s diagnosis was rewritten to include mental illness, so that the drugs could be prescribed. I would sometimes show up to take Alan out for a drive and, indeed, found him excessively groggy.

I swiftly learned it was not easy to budge the meds. I spoke to everyone -- the team leader, the team psychologist, the head psychiatrist of the DDSO, and the director of the DDSO, only to have my request for a trial reduction flatly denied. The reason I was given was that Alan would become too loud. (When I wrote Albany, I was promised an investigation, but soon they stopped returning my calls.)

Finally, a no-nonsense administrator told me that, as Legal Guardian, I had the authority to refuse permission for these types of medications. In other words, I could terminate them just for the asking. Every last drug was eliminated over time, without any negative effect on Alan’s behavior. Even his team now agrees that Alan is a calmer and happier individual.

However, as I write this, I’m experiencing a bit of those old, inherited anxieties -- will speaking out incite staff members to “take it out” on Alan? I know better of course. I now have a reasonably good relationship with Alan’s team. They’ll read this and groan and then we’ll move on.

But for more than two years I stopped attending the yearly review meetings, and no one seemed concerned. I know now that the team should have been worried. Having a family member present at meetings and in their family member’s life is essential.

If people are now wondering what some of the answers are, I suggest that State IRAs actively encourage family members to engage in their child’s or sibling’s life. Family should be made to understand what’s at stake, and that, indeed, they have a precious responsibility. The laws which govern guardianship should be understood by everyone and spelled out clearly for staff and family alike. Perhaps, as they do in non-State run facilities, relatives of all the residents of a house can have the opportunity to meet one another. I think longingly of the private group homes that routinely facilitate family barbecues and parties. These aren’t feel good luxuries. These gatherings are essential to bringing into play the critical, and keenly observant eyes of a family member. Only when you have that kind of oversight, will abuses of all kinds end. Firing the largest abusers is only the beginning of the solution.

For more information on my brother, Alan, and his history, you can see some pictures and clips from the film, Without Apology, a documentary I made about him. www.withoutapology.com

missed appointment

So now – after Donna played the recorder for my brother, and he clearly was delighted by it -- I can still see Alan swaying like a drunken sailor in this posh restaurant in downtown Nyack, where we went to celebrate his 60^th Bday -- I”m looking for a music therapist for him. I have no doubt that music therapy is what he must have. The first new thing I've learned about Alan, aside from his insane love of eating out, is that he loves music.

The compilation CD I had going in the car as we headed down to Nyack to meet up with a candidate for the music therapist job includes this very torchy song and -- great surprise to me – Alan grinned when this young singer from the bayous, Amanda Shaw, growled this come hither motif. Alan grinned. Was it possible that he caught the sexual innuendo of the music?. I should have pulled the car onto the shoulder. I don’t think I could have been more surprised than I was right at that moment, sitting next to my 60 year old brother, who's never spoken a word, and who seems supremely a-sexual.

Anyway, the other thing going on, while I was getting over the notion of Alan, my wild and wooly brother, having a universal response, was that I had “invited” my mother to this meeting with the music therapist, taking care to carefully go through the few items of hers that I’ve kept. And I had selected a shiny black bangle with a gold clasp. It’s understated and classy, and completely incompatible with the corduroy jeans and boots I was wearing. It would go more with a black cocktail dress. But I was, I realized, with a … jolt, dressing for my mother! She liked it when I dressed up (it’s not in my nature) and put on makeup. So there we were -- Alan next to me in the front seat, grooving to Amanda Shaw, and me, with a turtle neck that wasn’t stretched out, mascara, her dressy black bangle around my wrist.

And that makes me wonder – was I in some way doing this entire thing as much for my mother as for Alan? Was I trying to make it up to her somehow, help heal the wound that never would heal? And – also, endlessly endlessly, even after her death, working to find my way into her heart?

We stood for half an hour in a small off- the- street foyer that led into an apartment building, every so often, trolling the block looking for someone who looked as though he were looking for someone, and calling his number, to learn that he was nowhere. But I knew immediately that the music therapist had forgotten our appointment.

So Alan and I went and had pizza and then went to a café and shared a dessert. On a side street, I found a thrift shop, and while Alan sat in a wooden chair, far more patiently than Al, my husband, ever would have done, I browsed through a huge pile of stuff. (I would never even suggest to Al going into a thrift store after lunch.) But Alan, I’m pretty sure would have sat in that wooden chair for hours, gazing at the hundreds of cups and saucers and sweaters that surrounded him. Again, I had this sense of Alan as this mature person, and at that moment, a charming and endearing person as well.

lost in translation

While studying Spanish at the Mariposa Spanish school I was a good student and I did in fact learn a little Spanish. I showed up with my notebook and pen every morning and dutifully copied down new vocabulary words and tense structures until I"d filled pages and at night before turning out my light I'd peer at the new words and examples and recite them in one quick attempt to commit them to memory.

But after I've long since forgotten how to conjugate irregular past tense verbs, I won't have forgotten (don't begin to name the tense that just flew by!) one of my conversation teachers, who -- like all my instructors there -- easily bridged the distance between us, getting down to real stuff pretty quickly and easily.

On day two, Raul, let's call him, asked what the last present that my husband gave me was. How that came up, dunno. I thought back. Was it my birthday present -- a top from my favorite catalog, presented in its original mail order wrapping? It was beautiful. Don't get me wrong! But I didn't mention the top for some reason, and said something about how travelling to Nicaragua was a joint present to one another. Raul smiled. And what about you I asked? "I give her grapes sometimes, or apples." I think I said "oh." And Raul looked a little embarrassed suddenly, saying "we don't have a lot of money." My "oh" wasn't, of course, about the modesty of his gift. I didn't know how to express how beautiful I thought a gift of grapes was. How sensual to buy a piece of fruit for your wife. How flattered she must have felt! But though we were both speaking English (this would have taxed the limits of my Spanish) I couldn't express it without then sounding like I was making a big deal out of it, which would make it seem like I didn't really mean it. So I said nothing. And that little missed bit of communication was probably the one regret I had during our trip.

apprender espanol

I get a little distracted while I'm learning Spanish. Interesting things are happening all around us. As I mentioned in the last post, there's lots of animal life, and I can get lost watching a chicken settle into a small self-made trough in the dirt to lay an egg. There are also ducks waddling about, a half dozen dogs, white-faced monkeys, humming birds everywhere, large yellow birds high in the trees called Grees, squawking parrots and men working, doing stuff I can't quite identify. I'm like a six year old. What are they doing, Davixia? Que estan haciendo? (Yeah! Took me more than a year to be able to write that)

Under the thatched palapa roof that covers our small outdoor classroom, for five mornings this week, Davixia, my conversation instructor, and I go about discussing -- whatever. Like two friends, we have no structure to our conversation, although that is mostly my doing. I'm a recalcitrant student. I want to know about an odd, unrelated assortment of things. But one morning I agree to look at the book she's brought -- of old sepia photographs of Nicaragua ca. 1900. Men with puffed out chests, probably medals pinned to them, and large mustaches who I try to place. Only two possibilities I assume. With the Americanos, or fighting them. Nicaragua I believe, after skimming a few books on the subject, has fought against invading Americanos more than any other country in the world. (I ran this by Al, my resident historian (and husband). Nicaragua must have been invaded more than anywhere? He says 'no' Mexico takes the honor. I ask the table of lunch diners who've become my dear friends by now, and one of them counters, no not Nicaragua. Haiti takes the role of the most invaded-by-U.S. country. Someone else mutters -- Cuba)

I don't really care who the mustachioed man is. But drawing from late night reading -- Salman Rushdie's The Jaguar Smile (a fascinating, meandering writer's travelogue which I pulled off a shelf in the very well stocked library) I suddenly want to know about how land was reapportioned after the Sandinistas' victory (1979) I was in my 20's at that time, and remember how my hometown, Brooklyn, became a sister city to a small city in Nicaragua near the coast whose name I don't remember. We'd send stuff down (What on earth did we send? I think it was whatever we got the word was needed) via a member of our small group, who was perfectly bilingual, and very strong, as he needed to be for this mission of riding in trucks and unloading dozens of boxes, and who would describe his trip when he returned home. I remember him saying how beautiful Nicaragua is. I think, condescendingly I'm sure, that the younger people (kids in their 20s and 30s) staying here at La Mariposa Spanish School don't have a clue! We were campesinos! Revolutionarios! Rushdie writes about farmers who came down to offer help -- tractors, help repairing tractors, seeds, and not least, solidaridad. Nicaragua holds the romance of a country that stood up to the bully, magnificently, with guns, song, bravado, and as I learned through Rushdie, with reams of poetry. I may have known, but by now I've forgotten, that Ortega and half the founding council were poets.

I ask Davixia, who's not yet 20, about this history. What happened to the land, I want to know. On a trip up to Managua, we see people toiling in the fields. I hope that it's their land. I fear the worst, that they're tenant farmers and earn meager wages. Davixia tells me that some of the poor campesinos did receive land, which was taken from los ricos (the rich landowners). Rushdie says no. No land was seized. Land was abandoned, though, as the Contratistas fled the country for Miami. I ask my young teacher, who had signed on to teach me English, not history, I realized. I am being unfair. But I ask anyway, in broken Spanish -- Did they work the land collectively? Were there re-education campaigns? Was there an ideology? D seems unsure, and I sense underneath, a little uncomfortable.

Davixia is only 20 and she seems not only vague about her country's history, but far more interested in talking about things much more close at hand. And to her gratitude, I'm sure, we move on to another topic. She asks, will I continue to study Spanish when I'm home? I ask - What is she studying at la universidad (English) And I tell her about my neighbor -- who's from Puerto Rico - whose bright pink lipstick somehow distracts me from speaking Spanish to her in the hallways. Que colore? The same color as your bright pink shoes! Como tus zapatas! We both giggle helplessly.

So, it seems I'm by myself on the subject, but I want to know -- what has happened not only with land reform (the answer to my queries regarding collectives still are answered only partially.) but the whole Sandinista -- thing. I learn from an afternoon's lecture on Post-revolutionary Nica history that the first thing that the elected-with-CIA-assistance President Violette Chamorro did upon assuming office was pave some new roads and sell and rip up the railroad system, and, oh, buy up all the guns. Not a railroad car in the country now. I'm sure that any support for the small, stuggling but very idealistic communal farms up in the north was pretty well squelched by the Chamorro team.

photo (left): Paulette after a new delivery of laying hens.

The question that lingers after all these questions on this tragic past is - what kind of high school history instruction did Davixia receive? Is the Sandinista movement and its victory told? Do they still sing their songs? What about the role of Reagan and the illegal arms deals? (Let alone the drugs for cash deals.) Under another palapa roof, monkeys hopping around in the background, Paulette fills us in on these not quite forgotten transactions.

Equally importantly, how much of this history are the kids in the US in high school classes today being taught?

On our sightseeing trip to Managua, our guide, Berman (photo at right), also the Spanish instruction coordinator, a licensed veterinarian who can dance La Salsa like nobody's business, who'd fought with the Sandinistas, sticks a CD in the audio console of our camionette, and out pours an hour of vintage Sandinista revolutionary songs. Some of it sounds generic, but the a capella songs are heart stoppingly forceful and plaintive. (I found and bought the CDs in the Managua airport) Berman drives us past the modest street in downtown Managua where ( the re-elected) President Ortega lives, informing us, "he chooses not to live in the President's palace." Berman wears this proud, somewhat mischevious grin.

monkey feet

Learning a language. Al and I have set off for Nicaragua for the second year running to attempt to improve our Spanish, and I confess, to get away from the New York winter. We're in the same place as last year -- La Mariposa Spanish school. Great place! Paulette Goudge conceived of it, and built the eco-compatible building and grounds. What I hadn't realized last year was that our shower water somehow finds its way into large cisterns in the lush grounds which in turn are are used to water the plants. She asks that we use environmentally friendly shampoo and soap. So we're nicely entwined w/ our plant friends. I pored over the label on my beloved hair conditioner. Paulette has rescued all of the animals that live here, including a large cage of white faced monkeys. (They were bound for the U.S. on some nefarious mission. They're not released into the wild for their own safety, not being native to this region.) As I was standing by them this morning, chatting with some other guests, one of them -- the monkeys that is -- put its foot in my cup of mint tea and then sucked it dry, looking avidly at what was left in my cup. Of course I obliged, and this wiley monkey managed to drink it down completely using a combination of hands, feet and tail. Proceeds from the school and inn go to support many worthy projects in the community, which is very very poor. Paulette informs us that some of our neighbors live on less than $2/ day.

I haven't gotten down to convey what it feels like to study Spanish here. I can't seem to do it, really talk about what it feels like in my case to learn Spanish, not till I describe the afternoon I spent last week at a local afterschool program. I'd collected toys, games and stuffed animals from friends and neighbors (who were incredibly generous. More teddy bears than I'd thought existed in Brooklyn) to bring down to the small school that serves toddlers in the a.m. and older kids in the afternoon.

We arrived at the afterschool program at around two. One of the interns, Allison, who had signed up to spend six months here, was my guide and companion. (Allison, reading, in photo)

It's completely voluntary. The kids come if and when they feel like it. The school is simple, white-washed with these amazing cartoon characters painted on the outside walls -- I snapped a picture of a fox who looks like he's about to sell you land in Florida as well a wolf perched on a roof top. The interior is strung with paper decorations, and all kinds of things. The place in its entirety looks as though it's ready for a party.

But no one was there. Then, as if a gang of children were staking us out, they suddenly appeared. From out of nowhere, our small room filled with about a dozen boys and girls -- from mabye 5 - 13. And they took these tiny brightly painted chairs and sat down and began to read, some on their own (the boys). Girls clustered around to hear Cenicienta. Not what I, the feminist from New York, thought I would have chosen. But for some reason I had chosen it. Perusing a shelf of Spanish language books in Barnes and Noble, I'd bought it because of its beautiful illustrations and also because it had an English translation at the bottom of each page. I should have realized that the young girls of the village of Santiago (not a paved road, not a car in sight. chickens and goats in the front yard) were intimate with the story. They nodded and smiled shyly as I began and went all the way to the Prince finding the girl who'd worn the 'cristal' slipper to the ball.

I've been informed that all State funding for Santiago's after-school program has dried up and since then, Paulette has directed some of the profits from La Mariposa Spanish School towards the one teacher's salary.

Luba

It's been cold lately in Brooklyn. And in the 100 year old creaking apartment building I live in that's means the start up of a "difficult" steam heat system. Which means moments of sauna like blasts from the pipes, alternating with cool, and withholding radiators. All of us who live here are in a constant state of negotiations -- with these radiators, the windows, our fellow apartment dwellers, the super (poor Nick!) and building manager, who is always on vacation. And lately, I've added my medicine cabinet, in an attempt to quell all the cold symptoms I've developed.

The best advice I've received for this tiresome cold -- which everyone it seems has just come through or informs me that "yeah, it's going around" -- comes from Luba, a new friend, of sorts. I met Luba, while walking my dogs -- Violet and Princess Jo -- in Prospect Park the other day. I'm pretty sure that Luba comes from some part of the former Soviet Union because of the exercises she was performing when I saw her which reminded me of old films I"ve seen about Communist Youth Movement. (Luba could have been a child during the 50's) They're very energetic, what we used to call calisthenics and seem to require a lot of grunting, audible breathing, and occasionally spitting. Luba's style conflicted with my t'ai chi and on this first day we were together, sharing one of the park's rustic wooden platforms (which overlooks the most private, even exotic section of the 'lull water,' a stream engineered by the Olmstead crew a hundred fifty + years ago) I wasn't sure I ever wanted to be in the same vicinity as this heaving, stretching, bending woman again.

But on another day, a few weeks later, when approaching this same platform, there she was (I groaned to myself) doing toe touches -- 95 or so a minute -- and as I came near, she beamed. I coughed. My Russian friend frowned and without any of the social niceties of "hello" or anything, offered advice, and I have to confess, it was the most charming advice I've yet received for this problem. It involved mashing a large quantity of garlic. Her English is still a work in progress. I had to interpret. "You take the garlic and oil. Then you jump (mix?) with the oil. And then you compress, she said haltingly -- on your chest, and sleep. Sleep the whole night." Luba nodded. "You breathe it in (she demonstrated, sniffing deeply while grimacing and smiling simultaneously) and in the morning, you see, you feel great."

Luba also advises breathing in warm salt water through one nostril and expelling it through the other. "Start with water the same temperature as your body and then the next time, use cooler, room temperature."

I'm positive that both of these would keep me "innoculated" against these regular, dry heat colds. As soon as I get the courage to test them.

And then Luba returned to twisting from the waist, elbows held high, leaning over the railing occasionally to spit. I settled into my slow, far less strenuous I Chuan exercises. I think Luba inwardly was wondering why I bother.

And for all of this, I love Prospect Park, and can't see living anywhere that wouldn't let me get to it in less than a ten minute walk.

Alan's Birthday Party

This past Sunday we celebrated Alan's birthday (as you may know if you read the post from the previous week) And an interesting time was had by all.

Just the facts ma'am. Al and I picked Alan up at his group home in Rockland County 11 ish Sunday morning. It had been a while, I'm chagrined to say, since I'd visited my brother, and a very long time since I"d come by on a Sunday morning. For whatever reason, I didn't recognize a single staff member. I was guessing turnover, though. Turnover is high at every level. I'm pretty sure that the hourly wage barely tops the minimum. The service-providing organizations have long lobbied the state for pay increases, and I've signed many a letter. Now that the State is cutting back ruthlessly on every front, there's no hope that working at a group home for the developmentally disabled will provide a living wage. Even Alan's service coordinator, who oversees more than 300 cases, works a second job. So, the folks on duty didn't know who I was, and opened the door a bit reluctantly.

This was going to be a short one and I'm off on a tirade about the pay scale for direct care staff. I will master the blogger's haiku one of these days. But not tonight...We asked that Alan be dressed for the cool weather we were about to take him out into. Another peeve. How they dress my brother. They dress him as though he were a child, or an invalid. On this point, I'm all in favor of treating him like the 60 year old man that he had just become! He knows how to put his arms in the coat sleeves, and if given instructions, can probably zip himself up. Never happens. They coddle him, bundling him into his winter jacket, taking one arm and inserting it into the sleeve, then the other, then zipping up the front, straightening the coat for five minutes, and finally pulling his wool cap over his ears. I can't bear it.

But I'm his sister, not his parent, and I reminded myself of that when I brought him to the car (not by the hand!) And once in, as promised, I got the CD player powered up. We had time only for Thelonoius, a beautiful old album that I've listened to, without complaint, on and off for months. No, for over a year now. I can't take it out of the player. Alan, who doesn't speak, or rather only speaks in his own private language of sounds, grunts, squeals, and occasionally alarming shouts and bellows grew silent. He frowned a bit, and sucked his cheeks in, as Sweet and Lovely gave way to Crepescule with Nellie. What was he concentrating on, I wondered and I think I began to frown a bit, wondering.

We reached our destination, The Hudson House, a wonderful eatery on Main Street in Nyack (Henry Hudson, no kidding, is the proprietor), and an extra two thumbs up because they didn't bat an eye at the awkward man whose head angles off in a direction opposite to his body and his feet at another angle still, pulling me into the dining room with a very firm grasp. They seated us at a corner table that was very nicely tucked away.

And then, Alan's noises grew in volume and increased in frequency and I thought sure that heads would start to turn. And it crossed my mind that we should eat and run, or maybe just run. But they didn't turn -- the heads. Alan's service coordinator was there, completely cool, and my cousin and his wife arrived and sat down and took stock each in their own way, but very quietly. Cousin Stanley I think was working to ignore the noisy man in our midst, chatting Al up about work. Donna, Stan's wife, smiled quietly and started to ask questions.

Donna, who has worked over the years with kids with all kinds of developmental and emotional problems was thinking that there had to be a solution. While I was getting myself into a bit of a dither, she was thinking hard. It seemed to all click for her when I mentioned what a nice drive we'd had coming over, listening to Monk on the CD player and how calm Alan seemed. She said, as though she'd had a week to think it over, that she would play the recorder for him. And she was apologetic about not having an alto recorder, but only a soprano, and before I could question her on any of it, she's pulls her coat on and is out the door. Five minutes later, D is sitting across the table, playing some delightful Renaissance melody (Donna is part of an amateur renaissance musical group)

Alan began to sway with a huge motion in time to this incredibly sweet music and most gratifyingly, his noises becamse single deep notes punctuating the concert, few and far between.

I realize that after writing last week about Wolfgang Fasser, this saintly music therapist in Italy, who was profiled lovingly in the film, In the Garden of Sounds, that life did imitate life. Donna had picked up the idea that music can reach and communicate with people who don't have speech, people like Alan. We had (by we, my family and even to some extent his current caregivers) written my brother off. 'You can't communicate with him' was and really still is the message. But D showed the same wisdom as Wolfgang Fasser. Donna was heroic at the Hudson House that Sunday morning, for which I feel so much ----- awe. And gratitude.

We all joked a bit. Was the dining room delighted with the concert? It was both old and very avant garde, I mused, not really caring too much what they thought, and watching as Alan, swaying, sounding off occasionally polished off a plate of chicken salad in record time, tossing a good portion down his shirt. And the Tellemann played on.

(tanleyS inormed me that one of the people dining that morning came over to our table to thank us for the music)

p.s. If you'd like to learn more about Alan's story, you can check out the website about the film I made about him, and us. www.withoutapology.com