A woman in blue stands smiling with one hand on the arm of a bearded man in a wheelchair. Visibly cropped from a larger photo.
Disability, Judaism

Remembering My Grandmother on the Sabbath of Song

We buried my grandmother last week, and as I sat and grieved with my aunt and uncle in services at their synagogue this past Friday, I thought that it was terribly fitting that the first Sabbath after my grandmother’s passing was the Sabbath in which Jews read the Song of the Sea, known in Jewish tradition as the Sabbath of Song.

From a combination of hypertone and questionable talent, I can only really sing in a very loud full voice.  Anything else is a very subdued, flattened rendering of a melody, incapable of reaching a broad range of notes.  For those who pray with me regularly, you know that, in those synagogues that I choose to call home, I sing freely in that voice, confident that the command to love God with all of my heart, soul, and being requires that I sing in a way that allows me to actually pray, rather than to struggle to contain tone, missing the melody and straining to keep up.

I didn’t always do this.  I had done it as a child, but somehow, a combination of family censure and self-consciousness had slowly quieted me down as a teen.  I was told that it was rude.  I was told that it was showboating.  I was told that it was not very good, and who did I think that I was fooling?  (This assessment by my siblings may have been accurate.)  I lacked the understanding of self, let alone the self possession, to realize that working so hard to contain the voice that God had given me, and the joy that I felt raising it in prayer, was wrong.

There were many factors to learning otherwise.  I gravitated towards the more traditional Jewish world where a great premium is placed on those who sing and pray with enthusiasm, whether they do it well or not.  I learned Hasidic ideas centered on the notion that we all have our own way to pray and that, in a community, we build upon each other.  I finally learned to accept to those voices that told me that who and what I was, though different, could add to beauty.

My grandmother, with her love of music, was one of the earliest such voices.  Grandma was a talented musician in her day, and may have, at one point, been a talented singer, I don’t know.  What I do know is that by the time that she was in her 70s, and I in my teens, both of us sang in such a way that departed from the ideal.

Yet, Grandma loved the harmonies of Jewish music, and she loved sitting with me and services so that we could sing them together.  Then, at some point in my mid teens, she noticed that I had stopped raising my voice to join hers.  That I was muted, swallowing as best as I could that explosive tendency of my diaphragm, avoiding harmony, because I couldn’t even gather the range for melody at the volume at which I was singing.

She asked me why, and I demurred, and she shook her head, no doubt thinking it was some sort of teenage thing, and just told me quietly that she loved making those harmonies with me, and that I should consider bringing them back.  That quiet love, that appreciation of my sincere intent and enjoyment of what we could create together was the first quiet seed of embracing my unique voice.

I learned that from my grandmother, the idea of embracing who you are, of celebrating were you are and living life on your own terms.  In a few weeks my movement of Judaism will publish a piece where I discuss the value of people with disabilities celebrating their own voices and their own unique contributions, but today I share with you that it was my grandmother started to help me embrace my voice.

Normally, when I’m in an unfamiliar place, I retreat to the quiet, lest I be an inconsiderate presence in a place that has not yet come to know me.  I believe that there’s a difference between evolving a place for your unique voice in a community that you’re going to call home, and bulldozing into a community where you are just passing through.

Last week, though, I raised my voice in full in that Sabbath of Song, in my aunt and uncle’s unfamiliar synagogue.  I mourn my grandmother, whose memory blesses me every day, but I think her for her wisdom and support, and I thank God for giving me the opportunity to honor her memory on the Sabbath of Song.

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Disability, Judaism

Welcomed Without Asking: Making Our Communities Inclusive to All

I got caught up in the discussion this week based upon a fantastic blog post that I did not write, posted on the blog of the Ruderman family foundation, linked here.  When I shared it to my Facebook page, with an exhortation for those in positions of leadership to change the exclusionary dynamic about which it was written, a friend in such a leadership position took issue with the fact that the mother in the piece had not, after all, asked for changes so that her family might be included.

This point, which has a certain facial appeal, falls down, I think, when one gets into application.  It’s nice that people will respond positively when asked, but I’m deeply concerned for those who don’t or can’t ask.

What of the single mother, uncomfortable and having already faced hostility from members of the congregation, as described in the post, who is afraid to address the leadership, which, might not only be imposing, but, in so many of our synagogues. is older, and/or male?  What of the parent. beleaguered by a life filled with challenges, who comes to synagogue for spiritual and human support, and simply does not have it in themselves for one more confrontation?  What of the parent who does not even know that their child has a diagnosis, and therefore knows no buzzwords with which to demand special treatment, but is merely looking for a place where they and their child are welcome?

What of the deaf person, seeking to attend services themselves, who, in the absence of an interpreter, or at least a person willing to look at a smart phone screen, is unable to make their wishes known?  What of the person with a mobility impairment who arrives at an inaccessible front door and can’t even breach the entry to ask if there’s another pathway inside?  What of the new self advocate who does not yet know exactly how to articulate his or her needs, looking for a spiritual community of support?

In the Passover Seder, as we are going through Jewish archetypes, one of the types of Jew described is the one “who does not know how to ask.”  The Haggadah tells us to start for that child, making asking unnecessary.

I think that this is a powerful lesson for inclusion.  Inclusion should be proactive, so that asking isn’t necessary, precisely because so many people cannot ask, or at least, facing an apparently hostile environment, will depart before ever asking.

Now, this is relatively easy when we are talking about mobility access, or even putting together a core from among the congregation that knows how to sign, or training ushers to look out for other visible disabilities and offer support, but what of behavioral disabilities?

After being told of my idea that the need to ask should be removed, my friend, mentioned above, challenged the idea that any and all behavior should be acceptable to a service leader, suggesting that the community has a right to regulate the disruptive effect of apparently aberrant behavior in the absence of a request for accommodation.

I think that this idea fails precisely because it makes inclusion dependent upon disability.  Leaving aside the vagaries of misdiagnosis, and the incidence of simple failure to diagnose an unknown condition, should acceptance and inclusion really be predicated upon the ability of medical science to quantify particular behavior?  The law craves such distinctions for rights to enforcement, but do we need them as we define how to welcome?

To my mind, if a service can continue with a particular behavior ongoing, (and there’s no question that the children’s behavior in the original blog post was insufficiently disruptive to derail services), then the community norm should be to accept it whether or not it comes with a diagnosis.

Isn’t a community more inclusive if we simply accept that some children (and adults) are more comfortable rocking, whether or not identified as autistic?  Isn’t a  community more inclusive if we accept that some people do better moving rather than sitting still, without predicating our acceptance on whether or not they have been diagnosed with an attention deficit or hyperactivity?

I reject the idea that forcing people to identify is necessary or right.  Certainly, at the very least it creates awkwardness and stigma.  In a worst-case scenario, it gives license to exclude from a community of support simply because someone isn’t carrying the right (metaphorical) paper.  I posit that a truly inclusive community would strive to broadly accept the habits and behavior of its members, without requiring an identity of disability.

Conversely, if a particular behavior is rendering worship untenable, or dangerous, or destructive, it seems to me that the identification of a disability at the root of that behavior isn’t an argument to ignore it or blithely accept it.  Under those circumstances, the goal is to find a mutually acceptable solution.  Again, I’d like to imagine a world where we don’t predicate such a willingness to collaborate on a diagnosis, and I accept the fact that, if no accommodation is possible, not even the law as applied to secular organizations requires an organization to accept programmatic destruction simply because the root cause of a person’s need is a disability.

My broad point is that the identification of a disability should not be the prerequisite for being welcomed into our community, even for those who present differently than some norm.  Not only would such a requirement turn certain people away at the door, and penalize others for being unaware of diagnoses, it adds an unnecessary burden to the already complex life of even those who would surely be granted accommodation on request.

If, instead, we make our communities as broadly welcoming and accessible as possible, we turn them into the places of love and support that we’ve always held them out to be.  It’s a sort of universal design for an accepting and inclusive congregation.  Yes, it allows people with disabilities and their parents to access our communities, but it also makes our communities open to the widest numbers of our potential fellow children of Israel, whether or not they fit these designations.

I invite all of you, clergy, lay leaders, and fellow community members to reimagine our environments from the ground up to include, rather than exclude.  Let’s strive for a baseline that accepts a broad range of humans, rather than reflexively excluding those acting somewhat differently than we.  Maybe then we can begin to find true inclusion.

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Disability, Judaism

Saving the World, Over and Over, One Life at a Time.

“Whosoever preserves a single soul of Israel, scripture ascribes [merit] to him as though he had preserved a complete world.”

I have known this quote from Mishnah Sanhedrin 4:5 since literally before I can remember, which is to say that I literally do not remember a time before I knew it.  I even sang it as a child in a catchy tune at summer camp.  And, while the intellectual idea of the limitless value of one human life is a concept with which I have been comfortable since I was a teenager, I think that I sometimes lose it in my work.

As a consultant to corporations and nonprofits, and a former federal official, having the greatest impact for the most people is a watchword, and it should be.  And yet for all the talk of maximizing numbers, it’s nice to have a wake-up call about the power of helping an individual.

I have been privileged, since I moved to Boston, to have multiple interactions with the work of the Ruderman Family Foundation.  I have been honored to write, honored to consult, and honored to share whatever knowledge I have to contribute to important work.  Because I am something of a policy wonk and a technocrat, much of this discussion has been big picture.

Last week, however, I had the opportunity to experience the work of the Foundation through a different lens.  I had the dual experiences of my first meeting as a member of the Jewish Services Committee of Jewish Vocational Services in Boston, under whose auspices is found the RFF sponsored Transitions to Work Program, and of attending Sweet Sounds, the annual Gala of Gateways: Access to Jewish Education, another program made possible by the Foundation.

In both situations, I heard deeply moving personal narratives from parents whose children’s lives had been completely transformed by these programs, from parents on the Jewish Services Committee whose son had transitioned from dependence to employment, to the moving story of Gateways parents who had relocated from New York so that their daughter with significant disabilities could have the Jewish education that was such a deeply cherished value for them.

Two lives in their own way saved.  Twice the entire world saved.  To hear these stories, to feel these stories, one cannot think that they were anything less.

We continue to strive for systemic change.  I would like to see comprehensive employment programs like Transitions replicated throughout the country.  Even more, I feel that the work of making Jewish education and Jewish heritage accessible and available to all Jews is a sacred mission, and that the Jewish world should be committed to expansion of Gateways style programs and services to its every level and facet as a moral imperative.  But these are big picture goals, and focus exclusively on them risks of securing the tremendous power of each individual experience.

So I honor the work of the RFF, as do so many, because of the cumulative transformative effect on the lives of Jews with disabilities.  But, I also honor it, and others like it, for the incalculable value of each life so transformed.  There is more to be done, and I have great confidence that the work will continue, but at this moment, I honor all of the worlds already saved.  Kol hakavod.

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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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Judaism

My Eser Experience, a Meditation on Community and Its Power to Make a House a Home

This is just a stub to point you to a guest blog post that I wrote for Eser, an in-home informal Jewish learning project run by Hebrew college and sponsored by Combined Jewish Philanthropies. I hosted the downtown Boston group in my home this past Spring, and it showed me how, when strangers become friends, the awkwardness of difference fades away and new places gain treasured memories. Read the full post here.

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