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Building an Inclusive Jewish Community

My friend Rabbi Micah Streiffer provides two resources on Jewish Inclusion

Rabbi Micah Streiffer

Both as a rabbi and as a parent, it is important to me that Judaism be inclusive of people with special needs. Today, more and more, young people who have Autism, Aspergers, Down’s Syndrome, and other similar challenges are being encouraged to participate to their full potential in Jewish life!

Purely by coincidence, I’ve had the privilege twice in the last 2 months to speak on this topic – first at the annual convention of the Central Conference of American Rabbis, and then as part of a local Toronto panel organized by DANI. Both times, the topic was on the traditional Jewish law surrounding inclusion and on how to build the most inclusive Jewish community possible today.

For those who may be interested, here are the videos from those two events:

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Disability

You Make That Look Easy: The Immense Effort behind Effortlessness

I recently took one of the endless string of Facebook quizzes that are circulating these days, analyzing the type of person that I must have been in high school.  I took the quiz, and up popped a picture of Mark-Paul Gosselaar, in his iconic role as Zack Morris on Saved by the Bell, as the quiz labeled me “preppie” and told me that I appeared “effortlessly put together” but in fact spent significant time and my appearance.

I will leave to wiser souls the question of how “put together” I do or do not appear, but the effortless got me to thinking.  Not only do I put substantial effort into my appearance, but the end result is often completely out of my control. 

I control my hiring, and the instruction of my assistants.  Certainly, I choose my stylist and my manicurist, luxuries I find necessary to maintain a professional affect, but at the end of the day, the amount of effort that a particular individual is willing to put into brushing my hair, or tying my tie, or even tucking my shirt, is outside of my daily control.  I can fire a consistent non-performer, and I can instruct someone who doesn’t appear to know what they are doing, but, on any given day, my appearance may be completely beyond my control.

Nor does this lack of control extend merely to my personal appearance.  As I have written about elsewhere, this spring I had the unique joy of hosting a group in the Hebrew College Eser program.  Because I had very competent care at the time, I am pleased to say that I was able to have the house swept and the bathroom cleaned before each of the 10 Thursdays.  On any day though, had I experienced a problem with my morning care, it is possible, or even likely, that I would’ve been hosting 16 people in a dirty apartment.

Now, I take steps to prepare for these issues.  When I found that my New York morning staff simply was not able to help me achieve the proper look, I found colleagues at my law firm who could help me tie my tie.  When other dressing deficiencies created actual discomfort, I found friends and colleagues willing to almost completely rearrange my clothes in the firm bathroom if needed.  (My immense gratitude to my Kramer Levin friends, you will never know quite how much that meant.)  This Spring, I had my weekend care attendant, who doesn’t work until the evenings during the week, standing by for an emergency call to clean if there was a problem on a Thursday. 

But this is not a note about preparation, for the greenest person with a disability knows of the need to prepare, and the most savvy may sometimes fall short.  My point here is different.  I wrote a few weeks ago about the importance of understanding the struggle of people with disabilities, and I offer you two windows here.

Firstly, on the rare occasion that something with a friend or colleague with a disability seems a little off, you might not rush to assume that they are sloppy.  This is not to give a pass to the obligation of professionals with disabilities to appear professional, but to open up the world of possibilities a little bit.  Maybe you assume they just need a little help straightening something out, and, if you have the right relationship, maybe you tactfully offer.  ONLY IF YOU CAN DO IT TACTFULLY.

More importantly, however, for the thousands of times that you interact with someone like me, and the house is pretty good for the home of a single guy in his 30s, or I appear “effortlessly put together,” it might not her to reflect on the effort, the teamwork, and the sheer energy that goes into those simple things.  As I said in the previous post on the subject, we don’t want your pity, but a little cognizance of the struggle never hurt.

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Disability, Judaism

Preparing to Launch: How My Wonderful Camp Family Reached Out, Raised Me Up, and Prepared Me to Fly.

“Summer wasn’t complete without hearing his laugh coming over the hill.”  – My friend Meredith, referring to me in a re-post of my “My Launch Pad” blog post.

The above flattering quote typifies the overwhelming and soul enriching response to my post about the launch pad provided to me by my inclusion that summer camp.  I was moved by the reaction of my beloved fellow alumni.

More than that, I remembered anew that inclusion is a function of people more than places, attitudes as much as actions, and feelings as much as realities.  Conversely, exclusion can result from perceiving oneself as unworthy of affection, respect, and inclusion.  I can’t speak of the inclusion of camp, and of how it nurtured my soul, developing me and preparing me to launch, without a discussion of the people.

Camps themselves are just rolling pieces of beautiful land, and camp programs so many ideas on paper, without the people that make it real.  It was in hundreds of thousands of interactions with my fellow campers and staff, the way we engaged, and the way they treated me, and laughed with me, played with me, and occasionally argued with me, that I truly felt myself brought within the community.  Collectively, and individually, each one of them was somebody without whom, to paraphrase Meredith, “summer would not be complete.”

My fellow alumni, my camp friends and family, (of which I was privileged to have my biological family be a part), the thousands of wonderful people that actually reached out to help me become the man that I am today, they are the true architects of inclusion.  If camp was my launch pad, they were my ground crew, my engineers, my fellow astronauts and mission control.

Indulge me, so that I may share a little bit about my interactions with them, and how it would help me to challenge my self-perception, and to make sure that I never excluded myself.  Individually, you will find no greater human beings.  Collectively, you will find no greater group of exemplars of the inclusion that we all want to practice.

An aside: I will only be using first names in these stories.  I have chosen to share my experiences that some might enjoy and others might learn, but, a similar decision would be for each of them to make.  Also, had I a book and not a blog, and a memory like a computer, I would still have trouble recounting all of the wonderful people in my camp life.  This is not even an attempt to do that, but rather to use a few select people to illustrate the incredible collective role of these wonderful human beings in my inclusion experience.  (Special mention to David Friedman and Eve Rudin Kleinman, the individuals at Eisner and Kutz respectively who had overall responsibility for my inclusion.)

The first camp person I remember is Ilana.  We were both camp babies at Eisner camp, and, being similar in age, we were childhood playmates in the days when we were too young for formal programming.  As I look back at my life, she must have been my first able-bodied playmate (my only segregated educational experience was my nursery school, a delightful program for its time at United Cerebral Palsy in Connecticut.)

Three decades, disparate lives, and in her case marriage to another treasured friend of mine, Danny, and children, have long ago pushed our paths apart, and these days I learn about her life from Facebook status updates.  Still, I haven’t forgotten the powerful memory of that first friend, and I haven’t forgotten that, even as an adult, on the rare occasions when we encounter each other, I’m touched by the powerful familiarity that comes with a friendship of such long-standing.  I’m also aware of how rare it was for a person with my level of disability in my generation to have that kind of friendship within able-bodied child, long before the world was beating the drum of inclusion.

Also in those early years, the warm and open camp family helped me to find my voice as a public speaker.  Various official biographical sketches will tell you that I began public speaking at age 4, and it makes for a good publicity point.  The human element that is missing from that discussion is that, in order to give a four-year-old such a platform, to envelop him in comfort, and empower him to share, requires a panoply of special people.  Here, I don’t exactly know who was involved in arranging my opportunity to speak to the whole camp at age 4, apart from my wonderful parents,but I know that, to do it, they had to instill a self confidence that remains to this day.

What’s more, quite apart from those presumably staff decision makers, there were the hundreds of Eisner campers who listened patiently to a piping four-year-old, who asked questions, whose warm interest I remember even now.  One of them, in fact, my friend Jen, still reminds me to this day of the impact of that my words had on her life.  There can be no greater affirmation than that.

As I grew through childhood, other warm campers would add to that sense of affirmation.  While I was still in day camp, (then the program for faculty children not yet of camp age) a group of girls in the youngest unit became my swim buddies.  The long passage of time has dulled my memory of all of the names, but I do remember Courtney and Stephanie among them.

On the one hand, eight-year-old girls everywhere enjoy six-year-olds, sort of like a human doll. Yet, one could easily imagine an experience where I, as the six-year-old it was a little different, was rejected or shunned.  Instead I was embraced (figuratively and literally) and, while I may have developed a bit of an ego problem, I certainly never needed to ponder if I was wanted or loved.

This lesson, learned at camp, became something of a subconscious self-affirmation.  As hard as it is, before you can really push for your own inclusion, it helps to be convinced that people want you there and may be don’t know what they’re missing yet.  This lesson, I learned from my camp family.  (My biological family is also very loving, but it’s hard to translate those lessons into dealing with the wider world.)

This lesson would continue to be reinforced by dozens of fantastic bunkmates throughout the years.  Since I cannot name them all, and I have no meaningful way to choose, I have chosen to name none of them.  Just know that you are all in my heart.

Many such lessons would be learned at the pool.  At the pool was where I would flirt for the first time, lacking some of the physical distance that my wheelchair put between me and others on land.  I won’t name names here, but I am grateful to a long list of young women whose good-natured flirtation made me feel lovable in another way, before I would fall prey in my late teens to the deep insecurities that almost all of us with disabilities have when it comes to body image, an issue about which I have written before.  Here, even the power of camp’s inclusion could not spare me the scourge of self exclusion, but I like to think that it planted seeds as I fight to break free even now.

Also at the pool, I would learn to respect my body as the only one I had, and something for which I needed to care.  I think many of us with physical disabilities tend to think of our bodies as useless at best and liabilities at worst.  We eschew exercise not out of laziness, but because it seems pointless.  I’m grateful then to Wendy. who began to teach me to use my body to swim in the pool, and to Doug, who, over my vociferous objections, made me swim every safe pool day for all of my years at camp, because he knew that my health depended on it.  I’m grateful to Jacob, to Asher, and to Stephanie, who would allow me to continue this important habit when I moved from Eisner to Kutz, with Asher and Jacob even creating an achievement award.  I have all the bad habits of a middle-aged man, but I never lost the appreciation that my body was important and that I could maintain it if I put in the effort.  I was included in being healthy.

I learned at camp that I could be included in anything if it was important enough to me.  I am grateful to Animal, and to Jen, who tried tirelessly, if in vain, to find a way that I could play the guitar when I was young, and to Andy, and Robbie, and Rosalie, each of whom would help me to realize my dreams of leading a song session, even though a guitar would always elude my grasp.  I learned that I could be included in anything, if I was willing to accept that that inclusion might look different than the way that I first envisioned.  The day that I sat next to Andy on the elevated stage in Eisner’s old Chadar Ochel (dining hall) is still one of my happiest memories.

I learned that even my needs could be a source of inclusion, rather than exclusion.  I learned it as my friendships with Eric (now Winter) and Josh deep end as they helped to meet my physical needs at Kutz when my Camp America staffers proved on equal to the task.  I learned it when Billy and Jeff and Franklin and Aaron and Scott and Scott (two different people, you know who you are), and many staff members not named here, took their own roles in my care.  And finally, I learned it, when, as pictured below, my beloved Kutz bunk mates transformed my fear of traveling camp paths alone into an honored role for them as my Secret Service guards.

Outdoor scene featuring 14-year-old Matan sitting in a power wheelchair flanked by for male teenagers, well dressed in dark sunglasses, touching imaginary Secret Service ear pieces. The camp program director can be seen on one side, holding a walkie-talkie with a bright smile. Also pictured, one teenage male not in uniform, And one teenage female, identity unknown

Me and my “Secret Service Bodyguards” URJ Kutz Camp, 1996, Photo Credit: Melanie Ross Levin

And lastly, I learned, oh so painfully, just how my inclusion could impact the lives of others, in ways I might never know. In March 1992, my camp friend, Marc Erenberg was tragically killed at age 13, the victim of the drunk driver.  At three years older than me, Marc was a friend I looked up to, but not really a peer, as his sister, Robin would become.  Had you asked to me in February 1992, I would have been gratified to merely find that he remembered my name.

And yet, I remember vividly, when my father came to me, in the basement of our Connecticut home, and told me that my friend had been killed.  He didn’t stop there, though.  He told me that he had heard from the family, and that, apparently, I had made a significant impact in Marc’s life.  So important did they feel that I was to him, that they were going to support inclusion efforts at camp in his memory.

At the time, I had trouble going beyond the simple tragedy of the bad news.  I was not yet 11, and the death of a friend is a big deal.  As I came to reflect, over the years, though, I was moved and continue to be moved by the idea that my inclusion had so moved another individual on the idea of inclusion that inclusion had become a way to honor his memory.  I only wish that he had lived so we could have seen just what further inclusion he would have inspired.  I learned from this that not only could I be included, but that, regardless of my general feelings on the inspirational nature of people with disabilities, I had an obligation to let my inclusion be a catalyst for more inclusion.

When I say camp was a launch pad, I mean that it gave me the tools to fly.  Without these tools, they could ramp every door in the world, and I would not be included, because I’d be unable to let myself in.  Without learning to see myself as able to connect to those without disabilities.  Without learning to be comfortable in raising my own voice.  Without learning that I was wanted.  Without learning that my body, too, mattered.  Without learning that I could realize my dreams.  Without learning that I could contribute best to this world by fully engaging in it.  Without all of these lessons, I could not have been included in life the way I have.  Without the people mentioned above, and so many many more, I’d never have learned these lessons.

So learn some of them, if you haven’t.  Teach some of them, if you can.  Let my wonderful camp family serve as your exemplars, if you need.  And together, let’s launch everyone into a life of inclusion.

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Disability, General, Independant Living, Judaism, Personal Care, Sexuality and Body Image

Finding My Voice: A Look Backward, A Look Forward, and A Request

Anyone who knows me will tell you that I talk a lot.  Loud, verbose, outspoken; these are adjectives that I don’t think anyone would deny me.

And yet, as of May 1 of this year, despite more than two years in public office, more than 15 years of leadership positions, and well over 25 years of public speaking engagements, you would have been hard pressed to find more than the occasional public record of my thoughts and opinions on anything.

It’s not that I didn’t have them.  As a liberal New York Jewish lawyer (at least according to this conservative blogger), I have opinions about just about everything, whether I have any business talking about it notwithstanding.

It is rather that I really didn’t think that anyone would want to listen to what I had to say.  Living in the echo chamber of my liberal, Jewish, disability activist world, I really wasn’t sure that I had anything unique to offer.  Nonetheless, after years of gentle urging, I launched this blog two months ago yesterday, first at www.matankoch.svbtle.com,and then this week migrating over to WordPress, where we are right now if you are reading this.

I have been overwhelmed by the response.  In the two months that we have been live, I have received over 3000 visits, including over 1000 to WordPress this week alone.  The comments, feedback and encouragement, along with the flattering shares of those who push my words to even larger audiences have truly moved my soul.  It’s enough that I encourage other people to take a stab at blogging, if you think you might have something to say.

I have also had the opportunity to find my voice, and share my opinions on topics about which I am passionate.  My three top posts, each of which has had well over 700 views, have each allowed me to speak to an issue that I feel is timely and important.

In “Chutes and Ladders”, I got the chance to explore with you my take on the most critical policy barrier facing employment of people with disabilities.  I was truly gratified by each of you that responded that, having been previously unaware of this pressing issue, you were interested in opportunities to change the paradigm.

In “From Objects of Sympathy to Objects of Desire” I explored with you the evolution in the societal conversation around the sexuality of people with disabilities, a critical component to understanding us as fully fledged human beings.  From feedback in some disability fora where it was reposted, I know that I was lucky enough to give voice to an issue which troubles many of us that is completely hidden from many in the able-bodied world.  Then, spurred by the powerful words of my friend Ariella Barker, Ms. Wheelchair North Carolina, I examined the effect that this distorted conversation has on the body image of people with disabilities, in “It Starts in the Mirror.”

Rounding out the top three, this week I had the opportunity to share the incredible power of my camp experience with you, and the benefits that I think that camp presents to people with disabilities in, “My Launch Pad.”  I have been incredibly moved by the reminiscences and kind words of so many of my camp friends who spoke of the positive impact that my inclusion had on their lives, and I will be following up in the near future with a post focusing on the amazing human element of my camp experience, highlighting some of the thousands of people that made my experience what it is.  Even more encouraging, the post is beginning to circulate among those who work in the world of inclusion, and I would love to see the net result be that more people are afforded the opportunity that I had.

But now we come to the request.  In the two months that this blog has been active, I have written more than 30 articles.  I encourage you to check them all out, if only because many of them were written on issues about which I feel very strongly.  That said, I’m running a little low on inspiration.

I started this blog because other people felt that they had topics on which they wanted to hear my opinions.  So, I’m asking you, my readers, to tell me if there other things that you would like to hear me write about.  I’ve set up an email address, matansblogideas@gmail.com, specifically for that purpose.

Please feel free to send me articles questions or thoughts which you feel could be good potential subjects for this blog.  I may not write posts about them, as I really don’t believe in writing on any topic unless I have something worthwhile to say, but I promise to at least respond telling you that a post is on the way or explaining why I don’t feel qualified to express a particular topic.

I am gratified to have had the opportunity to start some important conversations.  I fully intend to continue.  I gratefully welcome your help and participation in this mission.

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Disability, Judaism

My Launch Pad: How the Micro World of Summer Camp Prepared Me for Full Inclusion in Society

“Holy sh**, that’s Matan” – Unknown shmirah (on-duty counselor) late July 1994.

These were the words I heard during the execution phase of a critical step in trying to sneak me across camp, from boys’ camp to girls’ camp on the last night of the first session of Eisner Camp in 1994.

In the 80’s and 90’s, sneaking across camp, or raiding, was a time-honored tradition, especially on the last night.  (I understand that the camp’s current management has curtailed the practice.) I like to think that I was fairly innocent in my adolescence, but there is no question that hormones were a motivating factor.

Despite being as motivated as any other 12-year-old boy, there were some significant complexities in the idea that I would participate.  The first was that sneaking across camp involved, well, sneaking, and I was in a large and very loud power wheelchair.  My friends and I never got a chance to solve the next complexity, the fact that the girls bunks were not ramped, but we had great fun dealing with the first.

It became immediately clear to our 12 and 13-year-old minds that there was no way that I was going to elude detection.  Even the most inept shmirah was not going to miss a large wheelchair barreling down the road.  We knew, however, that they could not range far from their posts.  The plan began to form.

One intrepid veteran, with many successful raids, who could thus afford to be denied one opportunity, would be intentionally caught.  While he was distracting the shmirah, I would go down the road at full speed, getting outside of the danger area before attention could be shifted.  The quote above, blurted out as I zipped down the road, was the result.

Of course, we forgot about the walkie-talkies, and of then rabbinical student now Rabbi Matt Gewirtz who was driving the super shmirah van.  Matt caught up to me about a thousand feet later, and ordered me home.

I began, but as soon as the van was out of sight I resumed my trek across camp.  As I crested the hill into girls’ camp, Matt, who was sort of an older brother figure to me that summer, came up behind me again in the van.  This time, he tailed me in the van all the way home.

This was not my only raiding experience, but it was by far the best story, and it exemplifies what camp was for me.  But let’s back up.

I grew up in small-town Connecticut.  Though my parents were strong proponents of full inclusion for their children with disabilities, I faced the twin practical barriers of access and transportation for nearly everything that I did or wanted to do.  My parents did not own a wheelchair van, and none of my friends’ homes were wheelchair accessible, nor were most of the other social venues for adolescents in our small-town.

At school, the educational and emotional blessing of having the incredible Carol Lemire as my one-on-one was paired with the unfortunate chilling effect of the idea that wherever I was, the watchful eye of an adult was never far behind, limiting constructive mischief opportunities.  I wouldn’t trade what Carol has brought to my life for anything, and I have come to think of her as a second mother, but school was not quite the unfettered laboratory of exploration that it might be for other people.

But, every summer, from infancy through age 18, I was at summer camp, most of those years at the Union for Reform Judaism’s Joseph Eisner Camp Institute for Living Judaism, where my parents were on faculty and where the above story takes place.  (Honorable mention to Camp Hemlocks in Connecticut, Camp Oakhurst in New Jersey, and the URJ Kutz Camp/NFTY Leadership Academy in Warwick New York for rounding out the 18 summers.)

My inclusion at camp was a rough and ready thing.  To put things in historical perspective, the ADA was signed by the first President Bush while I was in my second summer as a camper, and would not apply to any kind of Summer camp until three years later.  (Arguably, the First Amendment means that it still doesn’t apply to Jewish camps, but my focus is on where the understandings of the world were, not legal obligations.)  At the time, I was the only wheelchair user at camp.

Because it was rough and ready, with no blueprint, no past experience, and certainly no specialized services available, my inclusion was just that.  Full inclusion.  I was included in functionally all of the substantive activities available to another camper my age.

I swam in the pool every day.  They would slap a new ramp every summer on an appropriate boy’s cabin for my age group, and I would live there.  When it became clear that scrubbing the sinks was the only cabin cleanup task of which I was physically capable, that unenviable job became mine every day.  Each program, each sport, each song session, the presumption was that I would participate, and the creative college students running everything but their imaginations run free as to how that would work.  And it did.  There is almost no camp experience that I haven’t done.  I have danced at dances, acted in the Camp shows, and even once had my nails painted in a battle of the sexes.  (Let me tell you, I don’t look half bad in bright red nail polish, though it’s not my style choice today.)

But that is only a small part of the value.  If you recall my discussions of home, the biggest challenges to my social inclusion where transportation and access.  Camp, however, was its own little world.  Transportation lost its meaning when we all lived in a 600 acre Village.

As for access, when faced with a finite number of buildings that made up the camp social community, Carl, the wonderful camp maintenance man who had a wife in a wheelchair, built ramps to every camp building.

Even better, my ubiquitous escorts were cool twenty-year old guys who had no responsibility to enforce the rules.  (My most well-known assistant, my still dear friend Martin Smith, even helped me go raiding once.)  Here, my opportunities were the same as everyone else’s.

Then there were the differences in the community, and my human interactions.  My fellow campers lived with me, ate with me, swam and showered with me.  Anyone who has ever been the camp knows the depth of connection that that fosters.  In that depth of connection, it’s amazing how the separating otherness of disability falls away.  It wasn’t Utopia, and we had all the problems of a group of 500 kids 8 to 15 under the supervision of 150 kids 18 to 20, but it was pretty damn good.

It is perhaps no surprise then that it is camp where I had my first kiss, and my first heartbreak.  It is camp where I got an entire childhoods worth of bruises and tumbles, and the little triumphs that tend to follow soon after.  It is camp where I saw my first adult magazine, played my first card game, and broke my first curfew.  And, as described above, it was camp where I got the indescribable experience of raiding.

Since I could hang out with the other kids, camp was also the first place I encountered the Beatles, Billy Joel, and Simon and Garfunkel.  It was the first place I was surrounded by Phish Heads and Dead Heads, and the first place that I got to sing with friends as they jammed on ubiquitous acoustic guitars.  Many who know me now understand that each of these are significant parts of my current identity, but, in the pre-Internet world, I would have not found any of them sitting in my home in New Milford Connecticut.

The difference and social experience was also profound.  I think that I was well liked in my home town growing up, but I was always a little separate, no one knew me that well.  At camp, I was popular.  I had friends, acquaintances, and that loose construct we call “a crowd.”  At camp, I learned the social skills which would serve me well when I got to college and the real world and, for the first time, had year-round experiences with easy access to my peers.  This is, perhaps, a sensation experienced by many summer campers, but that doesn’t change its value to me.

Camp was also my first experience at independent living.  My assistants, especially Martin, were very clear that they were there to help me with my disability needs, but not to direct my life or my choices.  I had counselors for that, like everybody else, and the requisite independence that all campers experience.  So, simultaneously, I got to learn to make my own choices and the important lesson of how to comfortably accept the care of professionals not in your family.  Both of these are critical skills for someone with my needs to learn in order to live independently, and it was in the relatively safe, supportive environment of camp where I got to test these ideas for the first time.

This, then, was camp for me.  Like many Jewish children, I found it a nourishing experience, fostering a lifelong connection to Judaism and the Jewish people.  Beyond that, though, it was the place where I got to develop into a full-fledged human being.  Looking back on my life, I can’t think of a single social developmental milestone which happened for me somewhere other than camp.

This is not to say that camp is a panacea for socially isolated people with disabilities.  It is critical to my success that I grew up there.  My experience would no doubt have been different had I first arrived at camp a teenager that had never been included in a broader social world.  In fact, as a professional, I have encountered less than successful situations where just that was tried.  Further, though somewhat socially isolated, I was always included with my nondisabled peer group for education, and I have no doubt that that gave me tools which helped me to succeed at camp.

That said, for those with the basic tools, I think that camp can be in incredible opportunity to broaden one social development.

A key caution for anyone thinking to pursue this option.  Camp was only successful for me because I was allowed to have the same experiences as any other camper.  This meant that I was not bubble wrapped, but was able to get a few bumps and bruises.  Most importantly, it meant that I was not chaperoned, any more than any other camper.

As I mentioned, my assistants were cool 20- somethings with a clear idea of their role.  Further, when my parents, as camp faculty, were informed of my mischievous deeds, they made it very clear to those conveying the message that they were just happy that I was having the same experience as any other camper, and that if whatever I was doing would not normally necessitate a call home, then they didn’t need to know.  If you make camp as isolated and protective as the larger world, you will have no better results than the larger world.

But, done right, camp can be a launch pad, and for me was perhaps the key launch pad to help me find my current integrated place in the world.

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Disability

Finding Serenity in Disability: What I Learned from Al-Anon

Some time ago, as I was grappling with some relationships in my life, I had the occasion to find myself in some Al-Anon meetings.  To this day, I would have trouble explaining precisely why I found them to be a good fit, but I did.

Like most in our society, I’ve had some significant experiences with people with various addictions, but, no one of them well explains why I so resonated with the teachings of a group designed for individuals whose lives been affected by the addictions of their relatives or significant others.

Maybe it is that the teachings of support and serenity found within the 12-step programs are broadly applicable to the human experience.

Or maybe, just maybe it’s that the phenomena of disability can be very similar to the phenomena not of being an addict, but of being irrevocably affected by someone else’s addiction.  I’d like to explore that idea.

There are three areas that I would like to explore.  The mental exercise that I find in the first three of the 12-steps, the general idea of sharing experience, strength and hope, and the notion of talking things out with a buddy.

As taken from the Massachusetts Al-Anon website, the first three steps are:

1. We admitted we were powerless over alcohol – that our lives had become unmanageable.

2.  Came to believe that a Power greater than ourselves could restore us to sanity.

3.  Made a decision to turn our will and our lives over to the care of God as we understood Him.

As I came to understand these steps, the first step was acknowledging that the actions of the addict in your life were outside of your control, as were many of your preprogrammed reactions when you became too focused on those reactions, and that focusing all of your emotional energy on controlling them had rendered life unlivable.

The second step for me came to symbolize turning over.  Turning over did not mean that I was necessarily confident that a benign higher power would solve my problems.  Rather it meant that I could turn those problems over, cease a useless focus on them, and be restored to the sanity that would allow me to focus on all of the things in my life that were within my control.  Whether or not there was another being to pick them up was functionally irrelevant, since either way there was nothing that I could do.

And, since talk is cheap, the third step is actually to do it.

How do I translate this to disability?  Well, anyone with a disability understands powerlessness.  I am powerless to change the fact that on any given day my stomach may choose to put me in horrific discomfort.  I am powerless to change the fact that without another human being, most of the basic activities of my daily living simply can’t happen.  I am powerless to change the fact that, when you are relying on another human being, no matter how good or how dedicated, occasionally something will come up in their life that will create a problem with yours.

I used to spend a lot of time of obsessing about these issues.  Even when everything was good, I was waiting for the next inevitable crisis, the crippling stomachache or the sudden quitting of a once reliable care attendant.  Sometimes, I would be so emotionally distraught by the certainty of an impending problem that I would lack the energy to set up the very backup systems needed to avoid the problem.  But, really, I was powerless to effect the capriciousness of other people’s lives.

In that context, turning it over meant that, after doing everything in my control, whether eating the right foods, hiring the best people, treating them well, or having backup systems, I needed to stop worrying about the inevitable rough times.  Knowing they would come, I needed to accept that either through my own ingenuity, the kindness of others, or, if you are so inclined, the Grace of God, I would find my way through them, but that my attempts to endlessly prevent them were both meaningless and self-destructive.

A day with good care or good health is a blessing, and one in which I can do many things to improve my life, but only if I leave worrying about the impending next crisis to God, the universe, quantum phenomena or blind chance, and focus on doing what I can to have the best life that I can.  This is turning it over.  I can only speak to my own experience, but I believe it applies to any of the phenomena of disability that are out of our control, once we’ve done all with our power to prepare.  Turn it over and find some serenity.

The second wonderful concept is what the program calls experience, strength, and hope.  Al-Anon starts from the perspective that nobody is the expert who is there to teach everybody else, but that each of your fellow group members has had an experience similar enough to yours that you may gain value in learning how they handled it.

What a message for disability.  We each have different disabilities, and even those of us that have the same experience them differently.  If I get on my lectern and give you my surefire step-by-step solution for the problems posed by your disability, I will be at best preachy and at worst completely off topic.

On the other hand, if I share with you how I handled a similar situation, you can take from that whatever is meaningful for you, using my experience in whatever way it helps as you craft the best solution for your life.  This is the experience part.

The strength and hope part is equally as important.  As I mentioned in yesterday’s post, disability can really suck sometimes.  Hearing other people’s experiences, how they got through them and that they got through them may just give you the strength and hope that you need to ride out the latest storm.  Certainly, we could all learn to do a better job sharing.

The last lesson is talking things out with a buddy.  Al-Anon recognizes that, though you may have the best answer for you, you’ll likely not get there by running around in circles in your head.  Calling someone who understands and cares.  Talking it out.  These are incredible ways to deal with life stresses.  We do this informally, on Facebook fora and listserves, but I love the idea of the formal exchange of contact information with the understanding that one expects and is ready to take that problem call when support is needed.  Disability, like any kind of adversity, can be incredibly isolating.  What a powerful thing to break up that isolation.

I don’t propose 12-step programs for disability.  I strongly resist the idea that we have anything to recover from.  That said, the system offers some incredible lessons in dealing with a difficult life and so I offer them here.  If one reader finds some serenity, it was worth it.

 

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Disability, Independant Living

My Struggle, My Triumph: What They Are and What They Are Not

I had lunch with a friend, also a wheelchair user, over the weekend.  Our discussion was wide-ranging, and spanned a number of hours, and somehow, amidst to the acknowledgment of the crazy roads that we’d traveled, the uncertain mortality faced by all human beings but perhaps more present to those of us who are medically different, and our goals for our lives, both in the moment and in the long term, we came to the question of inspiration.

I don’t know anyone with a disability who doesn’t feel some hostility toward the concept that we call inspiration porn.  You’ve all seen it, the stories with tear jerking quotes by brightly smiling families, the halo almost visible as an author or journalist floors us with their epic tale.  Oh the struggle.  That they even get up in the morning.  We should be so strong.  Gag.

Most of us get up in the morning because the alternative is to stay in bed and vegetate.  Those of us that have been able to build lives are the lucky ones, precisely because it means that we get to truly live.

I may not love that I have to get up at 5:30 AM every day to wrestle with a recalcitrant digestive tract just to be able to start my work day at 930 or 10 like everybody else, but at least I can, and it has allowed me to build a profession.  It is frustrating to have to rely on other people for my basic needs, but at least I have those people, and the funds to pay them.  Don’t canonize me, rather shake your head as you realize that I am one of the lucky ones.

Still, as my friend pointed out, those of us that do it may, in fact, have some duty to inspire.  Not to inspire in the way of these flashy tales of triumph.  Not to inspire by setting our tragic nobility against the symbol humdrum problems of the average reader.  (And who are we to know what the average reader is experiencing behind closed doors?)  But to inspire by stretching the idea of the possible.  This would be an achievement of a life well lived.

I am a person with a severe disability.  I use a wheelchair, and I need the help of other people to dress and to shower, to get in and out of bed, to use the toilet, and prepare and obtain food.  Yet, I am a lawyer, and a former federal official.  I have worked for a Fortune 500 company and an AmLaw 100 law firm.  I am currently following the early 21st century version of the American dream, as I balance a search for traditional legal positions with the idea of starting on my own business.

Similarly, my friend has even more physical limitations than I do, and yet he has had a successful law career and is now seeking a Masters of Public Administration from Harvard’s John F. Kennedy School of Government.  I would love for the take away from our experiences is to be an expansion of the idea of what particular disabilities allow.

It is folly, and offensive to both compared parties, to say “Matan did X with his disabilities, therefore you should too.”  We each have our own abilities, and my accomplishments, or those of my friends, should never be used to set expectations, or worse to shame someone in an apparently comparable or seemingly easier circumstance.

But, there is a middle ground.  To see what I or my friend has accomplished is hopefully to realize that disabilities are not per se disqualifications from these accomplishments.  I am second by the idea of my life being used to tell someone else what they should be doing, but I love the idea that it might expand their view of their options.

Caught up in this is an acknowledgment of the struggle.  People should know that it is often more difficult to accomplish the same things with a disability.  I candidly share the length of my routines, the fact that everything I do requires the coordination of the schedules of multiple people, and, that though I am very much in charge of my own life, my choices are restricted by the needs of my body and the realities of hiring people on a schedule to meet those needs.

I can’t sleep late without extensive planning because someone is hired to get me up at a specific time, and I can vary their job on a whim.  Staying up beyond a certain time is a major planning exercise, as my assistants have shifts that end, and even if I can pay them stay longer, are dependent on public transportation, or their own need to get up in the morning.  We won’t even talk about how many things in life just hurt.  I know very few people with disabilities for whom a certain amount of extra pain is not simply a daily reality.

Why is it important that this be known?  Several reasons.  First, there is the very human need to know that these experiences are shared.  Even as another person with a disability looks at my accomplishments as a guide to the possible, they should hear of my difficulties to know that, when they experience something similar, they are not alone.

There is another reason, however, that this is important.  I learned a very valuable lesson from my first boss.  He told me that I should always treat difficult people in meetings with patience and respect.  Not only is it the only way to get anything done, but I have no idea what else that happened in their day before they got this meeting that is expressing itself in their behavior.  Inherent in this is the notion of coloring all of our interactions with an acknowledgment of the life experience of our fellows.

When it comes to people similar to ourselves, we do this imperfectly, but at least we have a basis for comparison.  When it comes to people with a significantly different life experience, like people with disabilities for those without, I humbly submit that we lack even a starting point.  I need to share some of my struggle with you, not for your sympathy, but because otherwise you have no idea from where I’m coming.

A request to never have a meeting before 10 o’clock sounds awfully strange until you know about my four-hour morning routine.  A request to preplan evening ending times only makes sense once you realize that I need to coordinate the schedules of the folks who will meet my needs and put me to bed.

So then, here is what I offer of my struggles and accomplishments.  See my accomplishments, not to canonize me but to expand your view of the possible.  See my struggles, not to drown me in sympathy but to appreciate where I’m coming from.  Disability or no, we all seek to be seen for who and what we really are.

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