Tag Archives: disability

The Lodge, Part V: Figuring it Out

‘I really love it. It’s crazy. I’m here with people from all over the world, we work around the clock and we get one day off per 13. It’s perfect.’ I said. I meant it.

‘Joey, I’m so happy for you. I’m so excited.’

‘Thanks. It’s just a lot, but I think I really like it.’

This was my first call home after the guests had arrived. After the week long, 9AM-9PM trainings we were all ready to get to it, whatever it was. Even with that much time spent learning, with that many people who’d done it before there was no amount of preparation that was going to give me so much as a clue as to what that first day would entail.

‘I got picked to be on the bus that went into the city to pick up the guests. It was crazy. Unbelievable how much could happen in so short a time.’

This is not the staff picture from my 1st year. 3rd year, maybe?

About half of us staff were selected to ride the bus down to the city that first day. It really was a good omen, even if I didn’t know it yet. I’d be prepping the busses and coordinating the drop offs and pick ups within a couple of years and would continue to do them for many years after. You really had to trust the people on that crew. Any number of issues could arise, between the guests and their anxiety or separation or some other totally unexpected thing having to do with their diagnosis to random cars breaking down in front of you in the Lincoln Tunnel, car accidents, staff walking off never to be seen again (this happened more than once, place could drive you mad), incidents between guests on the bus, anxious, angry or just plain mean parents (as a rule they were ALL lovely. As a rule. Rules are ocassionally broken), mixed up medication, short fuses, insane heat, torrential rain. Whatever we ran into, whatever ran into us, we were there to check in 60 or so individuals with intellectual and developmental disabilities, process their personal effects and account for them, ensure they were fully stocked with meds, check in money get them on the bus and start to entertain them and continue to do so, and to be entertained by them for two weeks, sun up to well past sundown. It really was the most amazing thing I’ll ever do. Having and raising kids will mean more, but we can relate to so many others who’ve done it. But this, this was a singular experience.

‘Guests?’

‘Oh, yeah. Thing is they aren’t campers really. They’re grown ups and face it, grown ups don’t go to camps. They go on vacation. So they aren’t campers, they’re guests.’

‘That’s interesting.’ Mom said.

‘Yeah. Not so much, it’s just what it is. You forget about the word after a day of using it. Not even when you hear it so much during training. Truth is I was ready to see some guests by Sunday. They got here, Sunday.’

I was already spewing my person first language, practicing my committment to treating people respectfully and in line with their life experience and not the way I had before those trainings, which would have still been sensitive, but wouldn’t have been mindful of age appropriate language. In real terms I have learned a hand full of things in the 22 years since that week of training, some real valuable things, but none of it will ever come close to what I learned in those two weeks. Two because the training really didn’t end until after the first week that you were putting it into practice with the guys.

The training wea almost all centered around the arts and crafts room that was off the kitchen, the dining hall and the administrative/infirmary hallway. It was painted grey cement floors with knee to ceiling roller windows lining the walls to either side of our rows of chairs we lugged back and forth to and from the dining hall between meals to reset our classroom all day every day. I was given basic, sanctioned safety trainings, by the book and repeated yearly or near yearly since. I was given first hand trainings on what it meant to work in a field that was still populated with residents and former workers at Willowbrook State School. I met some of those who transformed our entire service system, from the inside, from one fraught and underfunded, filled with systemic abuse into one that was so truly person centered that we busted our asses to ensure that every person was given every ability to choose every single activity on their own and we would modify everything to ensure they could do it regardless of ability. I learned what it was like to be a sibling or a parent of a person with a disability from one of those parents. I met some of the heroic figures who said no to Doctors in the fifties who told them to put their child with a disability in the institutions and forget them. I met many of those children who found their way, through decades of darkness, both literally and in every other way and emerged on the other side heroic and still in touch with their tender and delicate humanity which had been so forsaken. They taught me. And I soaked it up. I loved it.

img_0191And I wasn’t alone. There was a core of us who made it through and reaped endless rewards because of it. There were at root about 30 or so of us who worked in cabins, lived with the guys. We were on call all through the night and working every waking minute (save the one hour break you lived for in order to shower and make a ten minute call to whoever to say how amazing the whole thing was or to cry because it was breaking you). Of those thirty about 16 or so made it through the summer. My cabin started with the full allotment of 6 staff. We lost Ausberto and Jim the Marine and I can’t remember who else, but one more. We made it through 3, two week sessions with just me, Mike and Tony. A suburban, an urban and a comrade. We cared for and loved 16 guys in that cabin every day. Two in wheelchairs? No problem, everyone will have what they need cause anyone of us would push ourselves miles past our limits to make sure of it. Truth is we did it to gut busting laughter much of the time. There were moments of discord and hot tempers, but they were over fast. Still love those guys and dozens more and would have the time of my life sitting around a fire all night reminiscing on those days. I can say confidently we all would. I met real family there.

‘Joey. I’m really proud of you.’

It’s still the most important thing I ever hear them say. Whenever they do I just eat it up.

‘Thanks mom. I think you would love it here more than anyone.’

And I’m sure I was right. It was a utopian society experimentation lab built on the ideals I learned from her. Love, compassion, understanding, committment, service and tireless giving that results in you getting so much after giving all of yourself.

The Lodge Part One; Getting There

Amongst the clearest and most treasured memories of my youth are the handful of roadtrips that I took with my dad, just the two of us.One that sticks out for me as particularly enjoyable was a trip to Pennsylvania where I needed to be on campus early for basketball camp check in the next day.

The day started at the Morgan Manning house for the 4th of July town picnic and fair. Its the kind of tradition I had no idea I’d come to love about the town of Brockport, NY where I grew up. After hot dogs (Zweigel’s, the only proper hot dog)  and my little brother doing the cakewalk and the barbershop quartet of high school teachers we went home, loaded the minivan and got on the road.

On this trip we were in the right mood. We were just relaxed and comfortable and conversation flowed and we talked about life and family, everything and nothing. I don’t remember the details and they weren’t important. We were relaxed, comfortable and alone. It was nice. It’s counter to my normal level of anxiety. Once when I was 5 or so I was in the bathroom while he was shaving. There were at least 8 of us, often more. As George Sr. said, watch out for hop-ons, you’re gonna have hop-ons.  With two bathrooms overcrowding was not at all unusual. Anyway after a moment of observation he looked over at me, face half covered in thick white foam and half smoothly shaven and said. ‘Are you breathing.’ I wasn’t. He said, ‘it’s okay. Breathe.’ So I did. I’ve always been self-conscious, still am.

We stayed in a hotel that night near the camp. It remains the one and only night I’ve ever eaten at an Arthur Treacher’s. I imagine this was true for him as well. Then we went to a movie. The only thing that lined up with our schedule that was agreeable to both of us was ‘Soapdish’. For a couple of hours we howled with laughter. A reserved 40-something dad and his jock 15 year old son cracking up at the antics of a cast of eccentrics populating the set of a daytime soap opera. It was downright hysterical, silly and perfect. It was one of the best days of my childhood. It shouldn’t surprise me that the most meaningful and metaphorical journey of my life was a road trip with my dad in a minivan across the state when I was 20.

Side note about my dad; He’s funny. Very funny. It’s a dry sense of humor, not needy, rarely reaching out, but often reactive and precise. I often feel manic in my need to get in a funny line at every opportunity, even inventing the opportunities, or just sticking a laugh line in as a non sequitur just to get the attention. It comes from a funnier place for my dad. He’s okay letting tons of good enough but not perfect pitches fly past, and then boom, HYSTERICAL. I’ve tried to learn from this, and to some degree I’ve calmed down. He’s such a good editor and knows when funny is funniest. My papa was that way as well.

Fast forward to what can either be referred to as my first Junior year at college or my second sophomore year. I prefer the former, but whatever your druthers.

I, remarkably, was in a night class. I say remarkably because my academic history is littered with classes that I never intended to attend and rarely did. But this was a 3 hour, 1 credit class and I showed up. It was part of a series of single credit, single night classes that were offered in the Human Services curriculum. I’d kind of backed and failed my way into the major, but it was in line with my personal ethics of being helpful to those less fortunate, at least in theory so I went with it. These single night credits were community based professionals in the field of service. This night happened to be the Executive Director of the Chemung County ARC. He was a nice if distracted guy who gave us a good history of the movement, the state of the field and the needs going forward. It was interesting and I wanted to get involved.

In the course of the evening Jodi, a less then friendly and somewhat overconfident young woman by my estimation (which was informed by little if any evidence, but firmly believed. Ah… youth) spoke of her experience the previous summer at a camp for adults with developmental disabilities. It was a camp run by AHRC of NYC, the chapter that was the progenitor of the entire ARC movement. I decided to approach her at the break. Turned out that being male, a decent fellow and willing made me qualified for a position there! Besides, Jodi would be there and I’d at least know one face. Might even get to see another side of her. So the dye was cast and my life turned at that moment and in many ways has never turned back.

After a week or so home from school I was off to the Catskills with my dad. It was a 6 hour drive, one that I’d make several more times over the years. The ride was long and disorienting. I’d never noticed the glorious mountains that buttress and soar over the New York State Thruway as you make your way east across the state. They existed there without my notice for the many trips I’d taken across the state over the years. But when we got off and went onto the local roads it took only a few miles until we realized we were heading to a place neither of us had known to well. Other than some summer vacations when my dad was a kid even he had never really experienced the vast mountainous region of New York that stretched from the area city-dwellers called upstate and the northerners thought of as downstate all the way up to the top of the world in the up at the Canadian border. It was the spine of the state and we lived in the panhandle out west. He was from the New York Metropolitan area, so this vast middle, encompassing the Catskill Mts. and the Adirondacks had managed to be avoided.The long looping curves of the valley roads gave way in an instant to roads that seemed to have majestically green, steep,  natural walls. It was like the mountains and there fauna were cradling the pavement that now wove a twisting and turning road that revealed which travelers were local as they bore down on the vast amount of out-of-towners there to feed the economy and reconvene with nature. Finally, out of the hairpin at the Kaaterskill Falls trail head the roads started to stretch back to long and looping as we arrived in the higher valley on this side of the mountain into town. Tannnersville is a small, humble and charming mountain town that would become my nearest ‘civilaization’ for the years ahead. But the directions took us right through and up the mountain that hovered over it, all the way to the picturesque stone church at its peak and back down the other side. Right at the General Store/Post Office onto a beautiful, meandering river of a small residential road that ended at Colgate Lake. Rather, it didn’t end it turned to dirt and we continued through a tunnel carved through the forest, looking at each other partly worried and partly as Doc Brown looked at Marty at the end of Back to the future… Where we’re going we don’t need roads!

I can’t honestly tell you what conversations were had on this journey save one. I remember saying it and my dad has remembered it too. I told him that I had no idea what to expect. I told him that I was a little nervous but that I was thinking of it as 90 days and I can endure anything for 90 days. I’ve heard my dad proudly retell of hearing me saying that and he always follows it up by pointing out that after he left me that day he knew a change was coming for me. He was right.

While these have the stench of ‘famous last words’ they turned out to be true, I could most certainly endure what lay ahead. I had no idea that it was the start of a journey with as much learning and growing and failing and succeeding as I could stand bottled up in 5 two week sessions of sleep deprived sleep-away camp that would change my worldview, broaden my understanding of humanity, enhance my ability, grow my confidence, open my eyes to a world that was rich and vibrant and dynamic and revolutionary and introduce me to an instant community of friends and acquaintances who would create and sustain magic on a daily basis, all with the aim of righting a societal wrong and providing people with the opportunity to have the time of their lives. It would keep my otherwise antsy and unsteady and frankly dangerous life of excess in check as I discovered that when you are fully engaged in a thing, 20 hours a day is not enough. It was enough to get the work done, at least usually, just not enough of the experience. I was enjoying all of it, the joy and the pain, the wins and the losses, the new experiences and the vulnerability you were discovering in yourself and the world and you didn’t want it to ever end. We’d drink and sing and dance and swear and smoke and hookup and breakup. During the day we’d bring people that would never have the chance otherwise to the top of the mountain, whatever that meant for them. If we couldn’t we’d not hesitate in getting to work building them their mountain, to spec, because we were delighted to be given the opportunity. We fought and created cliques, then we broke them and cross pollinated.  We created a utopian society their and we thought we were the first ones to do it. I’m still convinced we were the best who ever did. But on that car ride, a ride that was both familiar and different it turned out that dad was dropping me off at the end of a dirt road in a beautifully landscaped world that was designed to make the world a better place and it certainly did that for me. The home that would take it’s place next to the big blue/gray house on Clark St. as my spiritual and literal home. When I’d leave I’d yearn to be back. When I was there, even in the cold, dark, lonely and depressing winters, I never wanted to be anywhere else. I loved her even more then. Even when it was emptied of all the people that made it what it was. It was even more beautiful to me as it sat stoically dark waiting patiently to be enlivened once again. After the departures, after the work, after our irreversibly changed lives, after the love and the struggle and the ultimate experience, the  walls were my companions for months on end and I loved them as I had learned their potential. I loved everything about that place and I still do. The Lodge was where I was able to make mistakes and miracles and to witness transformations, including my own. Where I learned to push myself and accept who I was. It was the greatest experience of my life to that point and would inform all the other wonders that were to come.