Mourning a Mentsch: The PCA Who Became My Friend

On July 29, 2014, I lost a friend.  Stefan Schack, (who would probably be protective of his age even in death) died in his early 40s.  Almost all deaths hurt those of us left behind, and tragic deaths, far too young, hurt more.  But, in the clarifying pain of that loss, and as I begin the slow transition of celebrating his life, rather than morning his death, I am forced to reflect upon the nature of our friendship, special, unique, and to my reading audience, informative. See, Stefan and I did not start out as friends.  We met the day that he interviewed to become my Personal Care Attendant.  I was taken immediately with the eloquence, energy, and gregariousness that he brought to his interview, and he was immediately my first choice for the job.  So I was disappointed when he called me a few days later and said that, upon reflection, he couldn’t take the job, because it might interfere with his day job.

Shortly thereafter, I had a weekend position open up, and before I posted it, I thought I would call the interesting fellow who had turned down the weekday shift.  Stefan accepted.

Now, Stefan was my kind of people.  I could tell immediately that we had compatible sensibilities, world views and senses of humor.  For me, I usually see this as a stern red flag.  It is important, I often tell people, to remember that your PCAs are first and foremost your employees, and you need to make sure to maintain a certain degree of detachment.  You may have to fire this person.  You may have to give them pointed feedback if they are not performing their job appropriately.  They may quit, and, trust me, when someone quits, you remember that they were not your friend.

So, I laughed with Stefan from day one.  We joked, and we turned the work of taking care of me into his much fun as possible.  (I would give nearly anything to have one photo of Stefan, wearing  one of my hand towels as a “do rag”, which he wore to keep the sweat out of his face when he was showering me.  He was particularly partial to one that I had in bright yellow and one that I had in lavender.  He said they were his colors for his gangs “the Sunnyside up’s” and “the lavender lug nuts.”)  Our mornings were pretty cool, but part of Stefan’s gift was that he never forgot that he was there to help me, to meet my needs.

Stefan began working with me as certain parts of my health were in sharp decline.  The task of caring for me was not only becoming more difficult, it was changing from week to week as doctors would offer new strategies to address mystery issues.  Unlike his weekday counterpart, Stefan did not have a healthcare background.  His primary job was in technical training at a law firm.  But, as we learned together to embrace foreign medical concepts like laxatives and enemas, the sorts of things that both of us found a little bit icky, he embraced the duties of my care with a compassion that was unmatched.  I honestly think that he was among those most dedicated to finding some way to recapture my quality of life that was slipping away.

And that was the primary nature of much of our relationship.  Almost all of our interactions were paid, and frankly, it would not have occurred to me task for free help from someone who had come to me in part to improve his economic situation.  Yet, in the course of that paid work, his compassion and enthusiasm from my care was incredible.

As was his concern for my well-being.  Stefan would drop almost anything to come to me if I was in need.  Those of us that rely on personal care live on a bit of a teeter totter.  When our care is good, we can achieve the same heights as anybody else.  But that success balances on the whims of the individuals that we rely on to keep us functioning.  Part of mitigating that is hiring good people, but another part of it, given that there will always be people that let you down and unforeseen circumstances, is to have a few people that you know you can count on when everything else goes to hell.  From 2011 through 2014, Stefan served in that role for me, competently managing to protect enough of his time to see to his own needs while never leaving me to feel that mine might go unmet.

Somehow, over the course of this unflagging dedication, we became friends.  Some of this is because of the endless hours spent laughing, joking, and dreaming of the future while we were doing the work of my care.  Some of it is because of the mutual emotional support that we provided each other through life changes, especially as he helped me come to terms with the end of my engagement.  Some of it is because we were just two compatible people.  But a big part was, how could you not come to feel close to someone that takes such good care of you?

At the end of the day, my care was at the center of our friendship.  Stefan was a self-proclaimed foodie, but we rarely ate together.  Stefan was a wine aficionado, but I believe we never once drank together.  I don’t think I ever met one of his friends, and he only met mine if they were coming to stay in my house while he was at work.  It’s true that, in those precious moments of care, we shared many a hope and dream, but always within that structure.

And so it is fitting that my last face-to-face interaction with Stefan was as he helped me to pack my apartment, and saw me off to my new life in Boston.  It is also fitting that the first time that he ever did anything for me for free was when he cleaned up my apartment after my departure and returned my Verizon equipment.  See, our relationship was transitioning, and it was no longer important to maintain that structure.

I was leaving New York.  Stefan wasn’t going to be my caregiver anymore, and I think we were both looking forward to building a new more social kind of friendship as that role was left behind.  We were talking about a visit, this summer, and reading the various remembrances that others have of Stefan, I bitterly resent that we have missed the opportunity to build that new, next kind of friendship, around bars, parties, and urban landscapes.

And yet, I am grateful to Stefan.  Not only for the friendship and peace of mind that he provided over those years, but for demonstrating to me just how it is that one can maintain an effective friendship inside of a truly professional care relationship.

I have had a few other caregivers become friends.  Usually it was because the actual professional part of our relationship didn’t last very long.  Or because of truly unique roles.  In one case it was someone that I quickly came to view as a brother, (his kids now call me Uncle Matan) in another someone to whom I still refer as a second mother.  What Stefan showed me is a model for a friendship that works inside of the care relationship, by never losing sight of three things: first, the primary purpose of the interactions remains my care; second, I am requesting labor of this friend and should be prepared to compensate them just as we all expect to be compensated for our professions; and third, that, friendship aside, Stefan understood the importance of drawing boundaries, of understanding that our friendship did not mean that he could compromise himself for my care any more than one would compromise oneself for any other job.

These are the three traps into which consumer/PCA friendships can fall, which will usually destroy both relationships, professional and friendly.  Often, a PCA who becomes a friend can forget that there is a job to do and that their “friend” is still an employer with expectations that their needs will be met.  This can often lead to explosive partings.  The other two risks are paired, that the line between favors and shifts might blur, and ultimately become exploitive of the PCA friend, or that the PCA friend will become so committed to helping the consumer friend that they neglect their own needs.  Either one will destroy a friendship in short order.

Somehow, Stefan managed to navigate all three and become a true friend.  It created a strong basis that we thought would carry us for years to come.  I can only attribute this magnificent balance to the superb human being that he was.

And so, my friend Stefan, for whom I am grieving, not only made my life immeasurably better by the care and friendship that he provided.  He showed me a model, however rare, of the way for true friendship to grow.

In a week that has seen much PCA drama for me, I don’t know whether that balance was a once-in-a-lifetime thing.  I hope not.  I know that if I find it again, I will see and hear echoes of Stefan, the PCA who became my friend.

May his memory be for a blessing.

The family has requested that in lieu of flowers, a donation be made to either the American Heart Association or to Housing Works (NYC) in Stefan's honor.

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.

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.

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.

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.

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.

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.

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 21^st 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.

Only the Best for Our Children: Sometimes the Best Care Is Finding Someone Else

I have never met a parent who did not hope to predecease their children. A gentle decline and death at a ripe old age is the natural end of a life well lived.  Like everything else, this natural progression takes on a different meaning in the context of disability.

Everyone, whether or not they have a recognized disability, begins life in the care of his or her parents.  For some, that care ends very early.  For others, especially those with disabilities, it often persists.  I am 32.  My parents are 65.  16 years after moving out on my own, my parents still play an ever dwindling role in my support system.  It is small enough that, though I pray to God that they live many more decades, my lifestyle would not be significantly impacted should they pass.

This was by conscious design on both of our parts.  Before I reached the double-digits, I spent time at summer camp with hired care.  In high school, as my size and ever more complicated schedule made it more and more difficult for my mother to provide substantially all of my day-to-day care, we were hiring what limited help we could afford, and I was learning to direct them.

When I departed for college, and had access to steady state funding for personal care for the first time, we hired professionals and never looked back.  Sure, there were years of lessons to be learned in proper hiring and supervision.  Sure, especially in college, my mother was 90 minutes away in an emergency.  Sure, to this day, were I in serious need, she would be on the highway, were she not beat to the punch by my sister, brother, or law school best friend, all of whom live closer.

Still, my parents and I understood at an early age that my care needed to be professionalized, that no one or two people, no matter how loving, could be the foundation of my support, not only because they had lives to lead and jobs to do, but because, by the Grace of God, I should live many years beyond them, and certainly beyond the now bygone days when they could be physically responsible for a substantial portion of my care.  I lost a little TLC in professionalized care, but I have gained the ability to always see to my own needs.

I was troubled, therefore, when I read this article about parents caring for their 16-year-old son.  The article describes two incredibly devoted parents caring for their son with a disability.

In the article, the parents freely acknowledge that they worry about who will care for their son when they are gone.  They question whether he will be able to advocate for himself, and they pray for the strength to keep on giving.  This is touching, and upon first read I was overcome with affection for this family.

Yet, upon reflection, this concerned me.  We learn from the article that the State pays for at least some of the young man’s care, and that this money is paid to the mother.

Now, don’t get me wrong.  I fully support the structure of State programs that allow family members that provide care to be compensated for the opportunity cost of the ability to work outside the home.  In the life cycles of families, this can be critical.

That said, were I counseling this family, I would suggest they take some of these funds and begin to figure out to what degree this young man can self direct professional care, train him to the utmost of his abilities, and find strategies to compensate for those things he can’t do.  Like my family, I would love to see them develop a model that works while the parents are still fully able to provide the care during the growing pains.

As these parents prepare for their golden years, let them live their own natural physical changes secure that the well-being of their son is not dependent on the strength of their backs.  When they reach the end of their journeys, let their son be able to celebrate their lives and process his loss without needing to simultaneously worry about whether his basic needs will be met.

Every parent knows that one day they will be no longer able to care for their children.  Many children can become self-sufficient, some will always need external help.  Either way, critical part of raising a child with a disability is to figure out strategies to ultimately write yourself out of the support system.

In cases like mine, and the parents in the story, where the individual receives state resources, it’s about finding ways to use those resources so that any one person is not indispensable.  For those who have no means for anything other than family care, the obligation falls upon society.  We owe it to these families to give them the resources to see that as their children grow up into adults, they are provided with ways that their needs will be met even once their parents can no longer provide.

The parents in the story are right to worry, and it certainly never hurts to pray, but I strongly recommend that everyone take action on those worries while there is still something that can be done.

It Starts in the Mirror: What I Learned about Seeing My Own Beauty from Two State Pageant Winners and a Comedian

Ariella Barker, Ms. Wheelchair North Carolina 2014, is beautiful. I don’t mean beautiful for woman in a wheelchair, or beautiful for one in my social circles, I mean beautiful, full stop. I mean beautiful enough that she remained a topic of comment by my able-bodied friend long after we met her, at a bus stop, while standing in the rain, with his admittedly attractive girlfriend, in 2008. Am I painting a picture? Not surprisingly, people notice this. Yet, as she chronicles in an intriguing blog posted yesterday by the Ruderman Family Foundation, people whom she encounters on the street find the concept of a beautiful woman in a wheelchair so confusing that they ask her if anyone ever told her of her beauty before. Clearly, the idea is so foreign, so alien, that they’re convinced that they have encountered a major discovery, a mystery of which even Ms. Barker must be unaware, and which must certainly have escaped the rest of the world. After explaining this, she writes:

Society needs to see the truth about disability. And, that is: We are beautiful. We are intelligent and educated. We are successful. We are sarcastic and funny. We are fashionistas. We are sexual and desirable. We are not a burden. We are an asset. We may use a wheelchair or have differently shaped bodies, but we are no different than the able-bodied.

She is absolutely right, and  I wrote on a related topic a few weeks ago, but I think that changing perception requires changing multiple narratives.

A few weeks ago, I encountered another blog post, this one from Ms. Wheelchair Florida 2014, Stephanie Woodward, whom I have never met, but who also appears quite striking from publicly available photographs. Ms. Woodward writes of the experience of growing up as a woman in a wheelchair:

So by the time you’re 12 and you’re reading Seventeen magazine where you’re learning that you need to start straightening your hair or no boy will ever find you attractive and you need to stay skinny if you ever want to be loved, you’re also hearing from every well-intentioned stranger that you’re broken and you need to be healed. There is something wrong with you and you need to be fixed. But you know you won’t ever be “fixed.” You’re walking like this (and eventually rolling like this) for life. You were okay with your life until the world started telling you that on top of being a completely imperfect tween like every other girl, you’re also broken - thus making you completely undesirable. …

This is what you grow up with. This is what you hear every day. This is why you pray that someday maybe someone will find you attractive. This is why you hope so f****** hard that someone will love you someday. And this is why when someone finally does show interest, you stay. You stay even though they beat the hell out of you. Because they said they love you when the rest of the world told you that you weren’t worthy of love. You stay even though they force you to do things sexually that you don’t want to do. Because, hell, at least they think of you in a sexual way. You stay when they threaten to kill you. Because you know you’re a burden and that being with a disabled woman is probably very stressful.

This young woman, literally a beauty queen, was so socialized to find herself unattractive that, for a time, she not only accepted horrible treatment, but had sympathy for her abuser, who was willing to put up with the “stress” of being with a woman with a disability. Ms. Woodward’s post reminds us both of the incredibly destructive expectations that society puts on women, and the particularly destructive self-image visited upon people with disabilities.

Given that feeling attractive is often considered necessary to present as attractive, it’s hard to envision addressing the problem identified by Ms. Barker without finding a solution to the one identified by Ms. Woodward.

I find the most hope for dealing with this problem in the words of British comedian Francesca Martinez. In a Guardian piece excerpting her book, What The **** Is Normal? by Francesca Martinez, Ms. Martinez recounts a romantic interaction with a fellow student in a comedy class, at a bar after one of her first class performances. Excerpted here, the dialogue begins with the man saying:

"I love the way your body shakes onstage. It's electric."

"Well, I hate the way it does that! It happens when I'm nervous."

"You shouldn't hate it. It's you and it's beautiful and different and musical."

…

"But people think I'm different."

"The only opinion of you that matters is yours."

This hit me hard. For the first time, I hated myself for hating myself.

He spoke once more. "You are Francesca. Full stop."

When I read this, I could empathize. Though Ms. Woodward’s piece points to the widespread nature of these damaging self perceptions, I have an easier time identifying with this comedian then with the two other writers, because, my generally symmetrical features and dark coloring notwithstanding, I have no doubt that I lack the looks to win a beauty competition. Like Ms. Martinez, however, I have been in relationships with people who assure me that my somewhat twisted and often shaking body is beautiful to them. And, like Ms. Martinez, I “hated myself for hating myself.” Or, if not hating myself, at least being certain that they were delusional in their opinions.

So what do I take from this? From Ms. Barker, we get a stark outline of a problem. From Ms. Woodward, we learn that it is a reciprocal problem, socialized deep in, even for the most attractive among us. And from Ms. Martinez, we find the first step in moving forward. Implied in her story is that she had to come to recognize her own beauty, and stop hating her body and its unique expressions, in order to accept that someone else might. It is hard to be desired until you can accept yourself as desirable.

I don’t know how this is achieved. I know that the Internet is filled with posts like this, trying to send positive body messages to young women. I don’t know if they work, and I certainly haven’t seen equivalent resources for men and women with disabilities, but it bears thought.

More basically though, I implore people to change their messages.

Ms. Barker and Ms. Woodward have literally won awards for their beauty, and yet, to read their posts, most often they receive backhanded complements at best. As a man, and one lacking negative features to which the able-bodied world reacts, I often hear very little about my appearance. despite this, even I also start from a basically negative self-image, physically speaking. I can’t really imagine the messages delivered a teenage woman with a disability that makes her look visibly different than our societal standard. I can imagine they must be pretty bad.

But Ms. Martinez’s experience, and my own, show how much difference a heartfelt positive assessment can give. In fact, I am willing to bet that, in our image conscious society, everyone, disabled or no, benefits from an unqualified acknowledgment of their beauty.

So I have a crazy idea. Why don’t we complement people more? Work on your delivery, to avoid coming off like a creepy objectifying stalker. Make sure that you have a relationship where it is appropriate. (It is probably not appropriate to comment on the features of professional colleagues or strangers.) But, beyond that, try telling people.

The Internet can tell me to love myself, and my mother will always tell me that I’m a handsome man, but as Ms. Martinez tells us, there is no real substitute for the experience of an attractive peer delivering us the message, unqualified and simple, “you are beautiful.”

Hear it enough, and you might start to believe it. Believe it, and you might start to act like it. And when you act like it, others will notice. Only then can we begin to solve the larger question of societal perception, one person at a time.

Like Ms. Barker’s message? You can donate to her trip to the national pageant by clicking here.

Common Ground: Can Disability Provide an Angle to Move beyond Partisanship?

I was fairly politically unformed when I worked as a policy intern for United Cerebral Palsy in Washington, but if you asked me, I’m sure I would have told you I was a Democrat. I’m pretty sure that both of my mentors were Republicans, since one of them had worked in the first Bush White House, and the other had a lobbying resume that one does not associate with the liberal agenda, but I honestly didn’t know, because we were avowedly nonpartisan. Disability, we said, was not a partisan issue. Certainly, the heroes of the ADA include liberal icons like Coelho and Harkin, but also conservative stalwarts like Dole and Hatch. The law was triumphantly signed by a supportive George HW Bush, and aggressively implemented by Bill Clinton. Many like to think that this is because it is a cause so universally good or right that it transcends ideological bounds.

While certainly human sentiment played a role, I think that this is terribly simplistic. Very few people view themselves, or their positions as wrong, or evil. Rather, in the face of conflicting values, people choose based on the ideologies that are most important to them.

For instance, notwithstanding Mitt Romney’s taste for his own foot, I really doubt that he has anything against the idea of helping people in need. he is simply viscerally opposed to that help being provided in the form of government payments. He thinks that not good for society. I disagree, but this post is not about welfare.

So, then, perhaps the unity around the ADA was really a function of the fact that there was agreement upon both the goal, establishing legal equality as a foundation for economic and social equality for people with disabilities, and the means, enacting a broad antidiscrimination law. With neither side objecting to the other’s goal or means, cooperation was not only possible but desirable.

A recent column by Dana Milbank in the Washington Post noted that Ralph Nader and Grover Norquist had found common ground over the minimum wage. Writes Milbank:

Democrats have made the argument that an increase is morally right and that the only thing standing in the way is corporate greed. That may be so, but it hasn’t won them enough Republican support to get the increase through Congress. But what if Democrats were to make a free-market argument that a higher minimum wage would shrink the federal government and reduce the welfare state?

That’s the argument Ron Unz made to Nader’s gathering.

The government spends over $250 billion a year in social welfare programs aimed at the working poor,” he said, addressing the group via Skype. “If we simply made the working poor much less poor by raising their wages to a much more reasonable level, a lot of that money would be saved, probably in the range of $40 to $50 billion a year.” The $250 billion spent on welfare for the working poor, Unz said, amounts to a “massive subsidy for businesses” that are paying less than a living wage and “forcing taxpayers to make up the difference.”

Call me a cynical centrist, but I could paraphrase this long quote by saying, “Liberals ’ argument that this made them feel good was minimally successful at winning over economic conservatives. Once they were able to demonstrate that the apparent feel-good measure was also likely to be economically successful in raising the target population out of poverty, economic conservatives began to get on board.”

Now, I’m no fan of ideologues on either side, and God knows that there are plenty of folks in Washington today who vote ideology regardless of what makes sense, as was sadly demonstrated in the knee-jerk ideological vote against the ratification of the Convention on Rights of Persons with Disabilities (CRPD) in the United States Senate, despite the fact that it was patterned after the ADA, and supported by Senator Dole and the first President Bush. Further, I am liberal, and fundamentally disagree with the conservative positions on issues ranging from gun control to a woman’s right to choose.

That said, I think policy advocates in general, and disability advocates in specific, could use to do work finding common ground among individuals who disagree based not on ideology, but on a differing conclusion as to what makes good policy. Here, political deal making is not so much holding your nose to appease your opponent as addressing your opponent’s valid concerns. This passed the ADA, and, if we are to believe Dana Milbank, Ralph Nader, and Grover Norquist, could create a coalition around the minimum wage. Surely this will not appeal to true libertarians, and will be insufficient to appease true socialists, but, being workable policy for the laudable goal of raising partners out of poverty might be a blueprint to get something done.

Disability advocates should be looking for these points of commonality. As I point out in my Chutes and Ladders post, sliding scale premium, uncapped non-asset tested Medicaid buy-ins for working personal care users with disabilities is such an area. It promotes employment in independence while ultimately lowering costs of government benefits and raising quality of life for people with disabilities. The baseline for universal support among practical minded politicians is that the end is good in the numbers make sense.

We are always going to have areas of ideology where we disagree. My challenge to any advocate reading this is to begin building coalitions by helping reasonable people focus on the items that just make sense. As we come upon 24 years of the ADA, we have living proof of just what that can accomplish.

Help Us by Helping Yourselves: The Massive ROI in People with Disabilities

Don't underestimate the economic power of the disability community. I understand what Tim Cook of Apple meant in February when, speaking at a shareholder meeting, he said, “When we work on making our devices accessible by the blind, I don’t consider the bloody ROI.”

He was responding to a question about the cost of "green" efforts, posed by shareholders that felt that the company was spending too much on environmental sustainability, and he was trying to distinguish Apple as a company that would be first concerned with doing the right thing and second concerned with stock value.

This post will not debate the question, best left to economists, of the reputational value of being known as a moral company, and the indirect effect of that reputation on stock value. I think that it is there, and should be discussed, just not by me. Rather, I wish to take issue with his example.

As a rule of thumb, we say that one in five Americans has a disability. That’s somewhere in the neighborhood of 60 million people. Excuse me, I meant to say 60 million consumers.

What’s more, not only are we 60 million and growing all the time, for pure practicality we need to seek out for products and services that meet our needs. We may not be the richest demographic, but we still need to buy things, and they need to be the things that will work best for us.

This means, unsurprisingly, that blind people will seek out devices, goods and services that work well for blind people, the mobility impaired will seek out those that work well with their mobility impairments, deaf people will seek out those optimized for deaf people, etc. Further, we tend to crowd source in finding products that work for our particular needs. This means that being first to market in product advances that revolutionize the experience for people with disabilities will grab a wide swathe of us, millions of consumers.

Once you’ve got us, there is a inertia against change. Just like with any other consumer, a competitor needs to make a substantial advance in quality or price in order to get us to switch. We know that there are people using Apple products today for no better reason than that they had iPhones and iPads when Android devices were primitive, clunky, or just hadn’t been invented yet. Regardless of demographic, the first to market gets a head start.

Obviously, I would love to see every manufacturer of every product designing their products to meet the needs of people with disabilities, but I have no problem with economic rewards going to those who act first. I’m counting on it. It's the main incentive to act

I’m sure that companies do things because they are right. Companies, after all, are filled with human beings, and we like doing nice things.

I’d rather, however, count on a company doing something because it’s smart business. Once in a while, a company might take the high road. If you show them the profitable road, they will take it almost every time, especially if it happens to be perceived as right. When it comes to serving customers with disabilities, the economic opportunity for the first to market is immense.

So, I respect the values that Mr. Cook was expressing, but I have a message for him: Mr. Cook, when you work on making your devices accessible by the blind, please do consider the bloody ROI. Then, let that incentivize you to do even more.

Ask and Ye Might Receive: Getting What You Need with a Disability Starts With How You Ask

I have a significant physical disability. I use a large wheelchair, one of my hands lacks almost any practical function and the other hovers around 70%. Not only do I require hired help for all of my activities of daily living in the morning and in the evening, I require enumerable little things all throughout the day. Despite this, I live very independently, not only navigating personal and professional worlds in Cincinnati, New York, and Boston independently, but also regularly traveling independently to Washington DC, with periodic travel to plenty of other someone random locations. Occasionally, people, especially other people with disabilities, will ask how I arrange the extensive concessions that this lifestyle requires me to ask of others, especially the service professionals that I encounter every day. I honestly think that the answer is in a carefully crafted attitude.

In my experience, nobody with a disability actually believes, “ask and ye shall receive”. We generally assume that the world is going to be difficult. We generally assume that we’re going to have to fight. There is truth to this, and nobody succeeds with a disability without a certain willingness to fight. But, as I say in the headline, I have found that the trick is “ask and ye might receive.”

I did not live to the 1970s, and I was very young in the 80s. I have no recollection of a world in which people with disabilities were truly outside of the consciousness of the rest of the population.

Certainly, I face discrimination every day, big and small. Whether it’s a difficulty in finding an accessible entrance, a store or restaurant with a grandfathered exception that is still closed to me, or that party where the host decided the venue must absolutely be a third floor walk-up, there are things from which I am excluded.

Also, there are people who don’t wish to serve me. The sales clerks in New York who visibly wish that I would go to a different store, the barber in Cambridge who simply announces that my barber is out today and so I should come back, saying without saying that he will not cut my hair, and the x-ray tech in Philadelphia who still can’t quite understand why I have no one with to remove my clothes and put me on the x-ray table.

That said, there are also the 3 different barbershops where the barber begins moving the chair to make room for me as I come through the door before I ever have a chance to ask, and the one on the Upper West Side where the barber runs to the store adjacent to his shop to borrow the ramp so that I can get inside. There are sales clerks and managers in every city who will walk with me through T.J. Maxx in order to help me access things on the shelves, even searching through the shirt bin with me for my obscure shirt size. And, there is the most recent x-ray tech I encountered, in Boston, who not only helped me on the table, but made sure that my clothes were 100% presentable when it was time for me to leave.

I do not pick these examples to indicate that the world has become easy. Neither do I pick them to lionize the individuals that helped me out, though I am grateful for what they did. Rather, I pick them to show that attitudes are changing, and that people with disabilities and our service needs are permeating the general consciousness.

One cannot always depend on getting a helpful the service person, whether one has a disability or not. That said, if you do not have a disability and you are in a restaurant, you expect accommodation from the server when you ask that your burger be cooked medium-well, or that they hold the onions, or put pickles on the side. Similarly, I do not assume that it is a special request when I ask that my food be cut up in the kitchen before being brought the table.

As a person without a disability, upon checking into a hotel, it is not unusual task for extra towels or a wake-up call, or even a rollaway bed. When traveling on business, it’s not even uncommon to ask the concierge to hold the delivery for your arrival. I do the same when it comes to the large number of extra washcloths my hygiene routine in hotels calls for, the fact that my bed will need to be on blocks or legs rather than a platform and, the fact that I will be pre-shipping a lift for delivery. When I make my reservation, I offer these requests with the assumption that they are perfectly normal. I hope that I am as courteous as we should all be to people in service professions, but I don’t imply that they are doing any favors.

This, then, is my answer to the question of how. Yes, some of it is that I have been blessed to encounter truly wonderful individuals. Moreover, through personal choice more than natural demeanor, I am very friendly. I recognize that service professions are difficult and unpleasant, that hotel and restaurant staff or mistreated and abused by superiors and patrons alike all day every day, and so I am nice. I am grateful. I take an interest in their lives, take a moment to smile, and to say a kind word, as I believe that everyone should do, with or without a disability. And, where appropriate to the type of service, I tip, because the failure to pay a living wage in this country is as widespread as it is indefensible.

I do not, however, presume that they are doing me a kindness by meeting my needs. They are doing their job, and I ask with the expectation that they will do that job. Generally they deliver. I neither demand with the implied threat of a lawsuit for discrimination, nor do I wheedle as though they are doing me some great favor beyond the call of duty.

The first, I have found, leads only to a defensive, if not outright combative response. The second, perhaps even worse, often predisposes the listener to feeling that they have encountered in imposition. After all, you prefaced it as such. Once they feel imposed upon, they are looking to find reasons to decline, and you gave them the opening to make that decision by implying that you were asking for a favor above and beyond.

This, then, is my learned and lived experience, which I hope might be useful. If you are person with a disability going through the world, and you have a need, ask for it politely but firmly. Assume that it will be granted. If it is declined, neither beg nor threaten, but, do as the most successful negotiators without disabilities do and asked to speak with the supervisor. But, mostly, ask with the assumption that there will not be a problem. I can’t guarantee success, but it will be better if one adopts the attitude, “Ask and ye might receive.”

Questions Don’t Hurt: Ask Me Anything

“Questions don’t hurt, ignorance does.” I just heard this powerful one-liner on an episode of “The Facts of Life”, to which one of my Facebook friends posted a link. This episode, from around 1980, claims to be the first sit-com episode featuring a character with Cerebral Palsy. The character is very interesting, a comedian and a relative of one of the series regulators. She delivers somewhat dated one-liners about CP.

A little later on, when Tootie is posing a question, she struggles to find a word to refer to the CP. The actress, who actually has CP, says “you can say handicapped, it’s on all the parking signs”. The episode proceeds to tell a lovely story about jealousy and family, chock full of 1980s goodness. It is on these quotes, however, that I wish to focus.

“Questions don’t hurt, ignorance does.” How true.

It’s 34 years later, and yet there is still so much people don’t know. They see me, with my funny hands or my power wheelchair, and I’m certain that they have questions. I know it because it comes out in actions that reflect a lack of knowledge.

I love the children. I love that they will come and ask me anything. I’m frustrated by the parents who are flabbergasted by their children’s apparent imposition and don’t want me to answer.

I like nothing better than answering their questions. Children have questions about everything. Children have questions about what they see on TV. Children have questions about what they see on the street. Children have questions about their grandfather’s age spots.

Why shouldn’t children have questions about me?

I’m outside of their realm of experience. I am something new about which they can learn. I want them to learn so that they know, so that I become part of their worldview on what is normal, so that I become something within their experience when they have the deal with the other people with disabilities as they grow.

In fact, I wish adults would ask. I wish anyone who wishes to know something about me or my disability would simply ask. Don’t worry about the words, for whatever you call me, I’ve heard it. As the character said, when I was a kid, handicapped was on the parking signs. Further, as I have written before, I’m not terribly concerned about language, just intent.

“Questions don’t hurt, ignorance does.”

Certainly, understand people's boundaries. Try to pose questions to a friend, rather than a stranger. Try to make sure that your friend is willing to answer. (People with disabilities reading this post, I encourage you to think about how you could make it better for us all by being willing to answer.) Ask with respect, even if you don’t know precisely the right words.

Honestly, if you do not know who else to ask, [email](mailto:matansblogideas@gmail.com) and ask me. I hope that everyone asks questions. I hope that everyone seeks to learn the realities of disability. Because questions don’t hurt, but ignorance, that hurts us all.

From Objects of Sympathy to Objects of Desire: Are We Finally Ready to Embrace the Sexuality of People with Disabilities?

In the world after “The Sessions,” it may finally have permeated the general consciousness that people with disabilities have sexual urges, and even that they act on them. Less clear is how well we acknowledge as a society that people with disabilities can also be the objects of sexual desire, experiencing and enjoying a relationship of mutual attraction, not only spiritual or mental, but physical. This week I was presented with two stories that provided interesting insights. One left me despairing and mildly ill, the other troubled my inner feminist a bit, but left the disability activist/sometimes sexual person with a disability in me cheering. I was truly troubled to find a story out of Minnesota this week about Jordan Knapek, a young man with CP going to prom. The author opens by telling us that we are about to hear “a story about how some of life’s best moments aren’t necessarily perfect.” The next 128 words proceed to focus on just how imperfect Jordan’s life is, focusing primarily on his limitations and his need for assistance. Then, we get to the heart of the story. In a tone reminiscent more of how one might talk about an eight-year-old then a 17-year-old high school senior, the author tells us, “Through his communication device, and in front of our camera, a secret got out. Jordan had been crushing on Rachel.”

Now, did Rachel return his romantic interest? Apparently not. Instead, the aspiring nurse said, “I just want him to have that high school prom experience.”

I will say nothing to impugn her motives. It sounds to me like a teenage girl with a big heart wanted to do something nice, and that really is sweet. It is hardly what I understand to be a high school prom experience, however.

My understanding is that usually when a guy asks a girl who does not fancy him to the prom, she usually turns him down, gently or not depending on the individual. Maybe he stays home and mopes, or maybe he bounces back, asks a girl where the interest is mutual, and has an actual high school prom experience. (I am taking no position on teenage sexuality, merely advocating that whatever prom experience two teenagers have, sexual or otherwise, should be genuine.)

Here, the article only tells us somewhat cryptically, “Jordan had to take in most of the night from afar, but his date did take him for a spin.”For Jordan, assuming that he aspires to real romantic relationships, I view this as a negative experience.

Finding real romance, especially for those of us that present to the world a little differently, is a challenge. In my experience, it requires some magical combination of awkwardness and fumbling along with confidence, assertiveness, and a real vulnerability and openness to rejection and heartbreak.

This experience began with a juvenile premise, the sharing of a “crush” with a third party, and ended with pure fantasy, the uninterested object of affection pretending to the bare minima of a date. This no more real than the high school girl who gives one dance to the first grader with a crush, but far less age-appropriate. I only pray for him that he gets to experience the real love of someone who is interested in him as a romantic partner at some point in his life.

This is not my biggest problem with this story, however. My biggest problem is that it typifies the image of people with disabilities as slightly infantile objects of inspiration, suitable for feel-good playacting, but not for real relationships, and certainly not as potential sexual partners.

Mere hours after I read this story, however, I came across a very different portrayal, one that gives me hope that maybe our journey as a society need not end with “The Sessions”, much less the story above.

I was killing time surfing the Washington Post during one of my physical routines, and I came across the news that the runner-up on the show Dancing with the Stars was a paralympian. Curious about this, I followed the link under her name and was brought to a very different story.

The story opens with a sizzling image:

“Purdy and Hough entwined themselves in more ways than you’d think possible throughout a steamy, ingeniously choreographed cha-cha on the season’s first episode. The twisting hips and tight, fast footwork posed no problem for Purdy, a competitive snowboarder.”

Not until two red hot paragraphs later do we read

 “she has abs of steel. Red-carpet looks. Sex appeal to burn, in a lithe body that’s perfect for the show’s skin-baring costumes. And those legs: Peeking out of her adorable gold-fringed cha-cha pants were gleaming metal rods leading to flesh-toned plastic feet, part Terminator, part department-store mannequin.”

Notwithstanding the cheesy imagery and the blatant objectification, which offended my inner aspiring writer and my inner feminist in equal measure, the first mention of disability comes at the end of a series of paragraphs practically dripping with sex appeal.

Now, this is not to ignore that the author follows the tired conventions of disability journalism, using inspiration porn expressions like “She has looked into the abyss, and clawed her way back.” Also, the very emphasis on the way that disability disappears creates a troubling link between sexual appeal and some idea of "normalcy" or passing, but, one societal problem at a time is enough for me.

Also, much of the midsection of the article is a fascinating look at the potentials of prosthetic design, not germane here.

She closes, however, with the following image.

“Tiptoing [sic] onto the stage for her contemporary-style dance with Hough, Purdy wore a simple silver dress with an airy chiffon skirt, the hem short enough to show her muscular thighs and sleek, jet-black shins, exposed metal ankle joints and rubbery Barbie-doll feet in a permanent point. . . . the emotional power lay in the way he and Purdy moved together, as if the dance floor were a private realm beyond reach of physics. And the final picture painted by the author captivates. She writes, “At one heart-catching moment, Purdy melted into his arms and he swept her around his back as if she were weightless. As if she were swimming through air.”

This paragraph describes beauty and power, eroticism and grace, and breathtaking chemistry, and does this not by ignoring the prostheses nor exalting them, but including them seamlessly in the captivating picture. The reader is captivated by the description this woman not because of her prostheses or in spite of them, but rather because of the whole picture of which they are a part. At the end of the article, Ms. Purdy says “I am not my legs.” This is true, but the beauty of this article is that it shows that the legs can be a part of, rather than apart from, the attractive whole.

Without question, this article, like *Dancing with the Stars* in general, is filled with the sort of cheap sexual theatrics of which I generally disapprove. At the same time, I am truly delighted to see the equality of opportunity in the way those theatrics are applied to a woman with a disability. If I have to choose between people with disabilities being portrayed as children, treated to romantic make-believe by their well-meaning peers, or being portrayed as the potential subject of sexual desire, I think the latter is infinitely preferable.

“The Sessions” taught us that people with disabilities seek meaningful sexual relationships. Maybe, just maybe, we are starting to acknowledge that these attractions can be reciprocal. One can hope.

Meaningful Employment for People with Disabilities: Let's Start Making It Happen Now

Today, I have the honor of being the featured writer on Zeh Lezeh, a blog of the Ruderman Family Foundation. For those who do not know, the Ruderman Family Foundation is a fantastic organization based in Boston and in Israel. Their mission statement, in their own words, is that,

Guided by our Jewish values, we support effective programs, innovative partnerships and a dynamic approach to philanthropy in our core areas of interest: advocating for and advancing the inclusion of people with disabilities throughout the Jewish community; fostering a more nuanced understanding of the American Jewish community among Israeli leaders; and modeling the practice of strategic philanthropy worldwide.”

I can personally attest to their impact as I continue to find their philanthropy at the heart of a vast number of initiatives in the Jewish world designed to improve inclusion of people with disabilities.

Today’s honor reminded me of the first time I had the honor of being their featured writer, on January 2, 2012. I wrote a pitch entitled Full Employment for People with Disabilities: If Not Now, When? It is now two years later, and I feel that my call to action remains, unfortunately, as timely as ever. Therefore, I reproduce the following post here, and challenge my readers to think about how they could implement it.

Guest Blogger Matan Koch, Associate at Kramer Levin Naftalis and Frankel, LLP and Member of The National Council On Disability

The below represents the author’s personal views, and not those of the National Council on Disability.

In the Mishneh Torah, the Rambam teaches that, when dealing with tzedakah, or righteousness, “the greatest level, above which there is no other, is to strengthen the name of another Jew by . . . finding him a job in order to strengthen his hand until he needs [tzedakah] no longer.” Archaic language notwithstanding, this simple fundamental truth guides us today. Read properly it should inform and motivate efforts to employ people with disabilities, to lessen or to replace their dependence on lesser forms of tzedakah like Medicare, Medicaid, SSI and community supports, and set them up for long-term meaningful independence.

This is nothing new to most people, but the implications of such a focus might be. We read in Kohelet (Ecclesiastes) 11:1, “Send forth your bread upon the waters; for after many days you will find it.” The rabbis explain this directive to mean that we, the doers and givers of tzedakah, benefit.

American businesses are just beginning to understand the benefits of employing people with disabilities. They are learning that it provides access to a separate and often overlooked talent pool. For example, I am a Harvard Law school graduate. Harvard Law school graduates are in high demand, and it is for this reason that I represent an appealing recruit for many businesses. Those businesses will work hard to accommodate me in order to access that talent. These talents, both those that are evident on resumes and those which are only discovered throughout the course of work, present significant benefits to employers.

Businesses are also learning that hiring employees with disabilities may allow the employer to expand in or even dominate the consumer segment with disabilities. To build from the words of the Rambam, strengthening the name of our brethren with disabilities strengthens us and our businesses. As we seek to emulate this highest form of tzedakah, we build independence, but also stand to reap tremendous benefits. That is a win-win, so, I ask “If not now, when?”

But, even if we agree that this is a win-win scenario, how do we get there?

We learn from Pirkei Avot that “Ben Azzai taught: Do not disdain any person. Do not underrate the importance of anything for there is no person who does not have his hour, and there is no thing without its place in the sun.” Simply, we each have our own special contribution to make to the critical work of tikkun olam. The same idea holds true for a business.

A successful employer would start by identifying needs within his or her organization, and continue by looking among jobseekers with disabilities to find outstanding candidates who could meet those needs. Conversely, people with disabilities seeking jobs need to focus on the skills and abilities that they bring to the table, just as would any other job seeker. Their path to employment involves education and perhaps vocational rehabilitation to hone and highlight these abilities, raising their appeal to employers.

A match made focusing upon the need of an employer and the abilities that the employee brings to bear is a recipe for success. Accommodations in this circumstance become a collective undertaking to best utilize the employees abilities to meet the need for which they were hired.

The law, always intended to be a floor rather than a ceiling for accommodation, drops away in importance as partners join together to find the employee his or her “place in the sun” so that both parties benefit. The employee benefits from the job at which he or she will succeed. The employer benefits from a well-matched worker who, trends show, is likely to stay with the organization longer than his or her able-bodied counterpart, and potentially provides help in accessing the market of people with disabilities. All because each party understood the place of the other.

Tradition teaches us what to do and how to do it, so I ask again, in the words of Rabbi Hillel, “If not now, when?”

Elephants, Taboos, and Poster Children

As anyone reading regularly will know, I am currently engaged in a job search. Recently, a friend who was making some introductions regarding the search asked if it was okay to reference my disability. This touched off a well worn internal conflict. On the one hand, I thought about all of the times that I have experienced prejudice, and I wanted to say no. On the other hand, I thought about the motivators, from compassion to affirmative action, which might drive a contract to be more receptive, and I wanted to say yes.

The momentary conflict subsided. I remembered that my disability was so apparent, even from my resume, that avoiding it was nothing more than ignoring an elephant in the room, making something taboo when it did not need to be. But I could not stop thinking about the implications. Prejudice is a horrible thing, and I cannot blame anyone who, having the option of hiding their disability, chooses to do so. But what about the other side?

I was unquestionably a poster child. Yale used my face on their diversity newsletter when I was a student. I parlayed that into real face time, and used it to work with then President Richard Levin and his wonderful staff to make Yale a more inclusive place. Long before the photo, I concluded that, in light of my good but nor elite numbers, that my admission was in part due to the disability status. Though admited with soft high school numbers, I graduated from Yale cum laude with a 3.79 GPA. So, it seems that I got in in part because I have a disability, and we know that I was used for promotional purposes because of that disability, but I was also hugely academically successful, and was also able to partner with others to actually materially change opportunities for future Yalies with disabilities, something that I would not have been able to do if I were not both at Yale and openly a person with a disability.

What does this mean for my friend’s question? I do not want to be hired at a job at which I will not succeed, but I am a good lawyer, and reasonably confident that I will excell at any job for which I were to be hired. What then the harm if disability gets me through the door, other than that to say so is taboo?

Further, we are, as a society, fast approaching a tipping point in the way that the business world utilizes disability talent and reaches disability consumers. What if, just like at Yale, I have the opportunity to build from poster child status and in so doing gain the opportunity to bring my employer to the leading edge of these trends? This strikes me as a net positive, especially because, given i would also contibute as skilled lawyer in the legal position for which I was hired, it is all added value. Yet, in order to bring that value, I cannot reject being held up, but must rather embrace it. Again, it is easy for me since my large wheelchair makes disability the elephant in the room, ignored only by conscious choice. That said, it is not easy to overcome the taboos to embrace that role. So, sometimes I struggle.

I told my friend to use his judgment in the introductions, even as I will use my judgment should I be offered a job. I am curious, though, have others wrestled with this? Readers, those with disabilities and without, what do you think of embracing these taboos if the result can be real change, or even the less lofty but equally valuable goal of putting food on the table? I know that I will continue to wrestle with these questions each day, and I encourage you to consider them.

Labor Protections for Personal Care: The Money Is Fuzzy, the Morals Are Clear

Since August 1998, when I was 16 years old, I have been dependent upon a unique class of professionals for all of my physical needs. These hard working men and women were integral to my earning two Ivy League degrees, my professional success, and really anything that I have achieved since leaving my parents’ home in 1998. On the East Coast we call them Personal Care Attendants, other regions refer to them as Personal Assistants. They, together with the slightly better trained Home Health Aides and Certified Nurse’s Aides, make up the incredible corps of giving, caring individuals that facilitate the lives of countless people with disabilities in order that they can live independently. It will surprise few who are familiar with the economic realities of this country that, demographically speaking, this population of workers tends to be only high school educated (if that) and disproportionately minority, immigrant and female. It may be more surprising that, currently, due to a companion care exemption in the regulations implementing the FLSA, these individuals are not provided with mandatory overtime in excess of 40 hours, let alone items like sick time. (Arguably, even the current exemption is over applied, but that is outside of the scope of my post.)

The Obama administration has proposed regulations to end this exception, and they take effect soon. This is causing great consternation in the disability and caregiving communities, and Jeff Rosen, the Chairman of the National Council on Disability, on which I served until recently, has written a letter asking Labor Secretary Tom Perez to delay the implementation. The purported purpose of this delay is to

“allow DOL [Department of Labor] and the Department of Health and Human Services (HHS) more time to work with States as well as the disability and aging communities to understand the policy and operational issues, develop workable solutions on key components, and determine an appropriate course of action.”

With due respect to Chairman Rosen, this is a naked delay disguised with bureaucratic obfuscation. I was one of the moderators of the January 2013 meeting referenced in the letter, and the policy and operational issues could not be clearer.

As I said in the introductory paragraph, we who use these services are deeply aware of the value of the loyal service of these dedicated individuals. None of us want to see them get anything less than the very best, and not a single voice argued that they deserved anything less than that which is promised to other American workers.

Rather, there is a reality that no one wants to talk about. The vast majority of Americans, myself included, receive these services through government programs, the most common of which being Medicaid. Practically speaking, current state Medicaid budgets could not cover time and a half for these workers, and the likelihood of these budgets being changed simply because the Department of Labor changes the regulations is nonexistent. So what would happen?

Every current care attendant, personal assistant, or home health aide would be cut safely below 40 hours per week. I know this argument is often used to attempt to invalidate the goals and protections of the FLSA, but ask the reader to recognize that the incentives are entirely different when the person making the payment decision is completely distinct from the person benefiting from the labor. If a factory owner wants to split shifts to avoid paying overtime, that owner bears the cost of the labor inefficiency of multiple workers in the same job. The choice, whether to pay more or hire more, is a simple economic calculation, made by the decision maker. In this instance, neither the worker nor the beneficiary of the labor is making the decisions. To the budget official making Medicaid decisions, quality and continuity of care is only the most abstract consideration.

Here, essentially, everyone loses. The person with a disability loses because rather than have appropriately designed shifts balancing the needs of worker and consumer for maximum efficiency for both, they must arbitrarily break at the 40 hour line. Further, as the expression goes, good help is hard to find. To remain under 40 hours per week, the consumer may need to hire more people, and face the difficulty of fielding a larger team of staff with good skills and good fit. The person who loses most of all is the worker. There is no question that the worker would be better off working 60 hours where 20 are at time and a half than working 60 hours at time, but the real distinction is 60 hours at time versus 40.

What, then, to do? Most disability advocates are pushing strongly for the status quo, and I agree that the status quo would be better than the scenario that I outlined above. But what about real courage? What about saying to the Department of Labor and to the States “we support the proposed rule, Mr. Secretary, but we demand that part of self-determination is to free up the funds to authorize overtime as we see fit.” This would be a courageous option, protecting the rights of our caregivers while ensuring the needs of our consumers are met.

To my former colleagues, I say this. The answer is not difficult. Frankly, I have outlined our choices in two paragraphs. The hard part is gathering the conviction to push for the right decision, because this letter feels like merely trying to delay it.

Chutes and Ladders: Obstacles on the Journey to Employment For Personal Care Users

I do not actually remember the game Chutes and Ladders. I remember that there were chutes, and I remember that there were ladders, and I remember that there was some method of following a path based on a die roll to get to a finish line. It is entirely possible that both chutes and ladders were positive things, but for the purpose of this blog post, I am going to choose to remember that the ladders were a positive climb up, and the chutes a precarious pitfall that you hoped to overshoot with your die roll. The analogy works for me, so I am going with it. One day a few years ago, I got a call in my New York office from a woman who heard that I was a working professional while using significant amounts of personal care. She was distraught, for she had just been offered a good job, making in the vicinity of $80,000.

Why, you say, should she be distraught? This sounds like good news. Alas, she was an individual with a disability who received her almost $100,000 per year of annual care from New York Medicaid. Further, under New York eligibility rules, if she made more than about $60,000 per year, (this year's number is $59,388) she would lose her Medicaid. $80,000 was not enough to pay for care, let alone care plus living expenses. This Ladder had become a chute which would have made her unable to maintain her life. I did not have a solution at the time, save that my annual salary was $230,000, and that was how I paid out-of-pocket.

Around that time, I made a friend, a resident of New Jersey. He too, had a good job, and though not eligible for New Jersey’s Medicaid buy in, which had an even lower threshold than New York, as a former recipient of SSI meeting certain other conditions in New Jersey, he was eligible for Medicaid through a program under section 1619(b) of the Social Security Act. If you follow the link, you will see that this program allows individualized determinations of eligibility disregarding earned income for certain classes of people, including those dependent upon personal care. A little loophole though, is that, other than an exemption for earned income, he needed to meet all of the eligibility requirements for SSI, including making sure that his assets never exceeded $2000. This is not a typo. $2000, a threshold set in the 1980s and never changed. To receive his care, he could not save for retirement, or even create a decent contingency fund. These well-recognized ladders to financial success would have been chutes. His disability progressed, and he had to leave that job, and is now living primarily on fixed income. I wonder if that would have been the case if he had been able to save prudently, and invest.

I recently moved to Massachusetts, and did so precisely because they it is the only state I have been able to identify where eligibility for the personal care program is not precluded by income or assets. By happy accident, I applied for Medicaid while still officially making my law firm salary of $285,000 per year, so I have some interesting numbers. Massachusetts has a premium for people with disabilities above certain incomes that receive services. By way of example, had I been making $285,000 by the time I actually became eligible for Medicaid, I would have paid the monthly premium of $3650, but I would have had services.

Let us do some math. I submit that, in round numbers, my care will cost the State of Massachusetts $54,000 per year. Incidentally, I am by no means one of the most expensive recipients of care, but my own numbers are the easiest for me to access. I submit that there are few if any jobs that I could get in Massachusetts given my current realities (which still make me more employable than 99% of Americans) that would allow me to part with that much money out-of-pocket per year. As such, Massachusetts will be the guarantor of my care whether I am employed or not. This fact becomes even more immutable for others as care needs rise and income potential drops. Let us assume for a moment that if I were making $200,000 per year, my premium might drop to $3000 in Massachusetts. (I have made up this number, but it is not out of line with the numbers above.)

If I lived in New York, I would likely have to leave my $200,000 job because of difficulties paying for care and all other disability costs, even at 200,000. For instance, the rent on my accessible apartment with 24 hour building staff to limit my need for personal care was almost $3700 per month. If I lived somewhere cheaper, I would probably need more care to make up for lack of services. (Actually 200K might be just enough, but I am trying to work with round numbers.) Thus, New York would be on the hook for $54,000 a year of my care, plus likely subsidized housing, while the federal government would pay SSI or SSDI, and likely Supplemental Nutrition Assistance, all to allow me to live with an income of zero.

In Massachusetts, I would keep the job. I would pay $36,000 a year of my care, with Massachusetts picking up the other $18,000 plus assorted medical costs. Since I would be earning a good salary, I would pay my own rent, or mortgage since I could have assets, and I would not need to collect social security or nutrition assistance. Further, I would be paying taxes, so the net costs to the taxpayer would be even lower.

In this scenario, literally everybody wins. I win because I get the benefits of work, of Independence, and of disposable income, all while receiving the care that I need. In a period of decreased work, like the one I am currently experiencing, I would have savings to get me through. The taxpayers win because my ultimate price tag is probably less than a quarter of what it would be in another state, all while I am paying taxes, reducing the net impact. My employer wins because they get my labor and my talent. Society wins as we add to the population of productive adjusted members, decreasing dependence and poverty while increasing hope. By eliminating the chute, we all get to ride the ladder together.

Most states provide some kind of personal care, and those that do not provide institutional care, which is even more expensive and filled with other horrors and drawbacks that I will write about in another post. Only Massachusetts has set out this path to winning through work. I can literally see no justification for why it has not been adopted in every State save inertia, and ignorance of the financial realities. Unlike the need for more funding inherent in yesterday’s post regarding Personal Care, there is no state that would not save money, they just do not know.

So my reader, I share these facts with you. Share them widely. Share them with decision makers. Push for change. We will all benefit.

Is the Person Really First? A Critique of Person First Language

I was born handicapped. Sometime in my early childhood I was briefly physically challenged and by middle school I was disabled. I am now a person with a disability. Similarly, I have progressed from wheelchair-bound, to in a wheelchair, to a chair user.

It may surprise you to find that the actual nature of my physical condition is unchanging, and that medically, my charts have said pretty much the same thing since 1981. Medical science generally only changes names if it signifies a greater change.

This is something that I think we have lost in the progression of language around disability. Ideally meant to focus on my personhood, the phrase “person with a disability” really only serves to tell me that I am dealing with someone who is both educated, and hip to the latest lingo. It is singularly unable to tell me whether I am viewed as a person.

Now it is true. It can be jarring to hear disabled or handicapped out of the mouth of someone that ought to know better. Are they so indifferent that they did not bother to learn the latest words? Yet, maybe they just did not know. I cannot tell you how many times well-meaning individuals have been mortified upon learning that they no longer have the latest term. But, unless you are a journalist or a Member of Congress, it is not like there is anyone teaching you this stuff. Further, I have seldom met individuals who feel honored and educated by being told they got the words wrong. Like most buzzwords, it seems as likely to shame as to teach.

I feel that there are other ways, mostly to do with action, where I can find out if someone sees me first as a person. How did they treat me? Will they work with me? Do they seek my advice and my guidance in areas where I have experience or expertise? Will they joke with me, laugh with me, hoist a drink with me? Will they praise me only when I do something legitimately praiseworthy and call me out when I am insensitive or acting the fool?

These folks I now see me as a person first. I know it even if English is not their first language and they have used the archaic word crippled, or have asked, in the way one sees with Israelis, “what happened to you?”

It is important to put a person first, but I will take the right actions over the latest words any day of the week. Like the medical chart, I am only interested in the linguistic change if it signifies a true change in action.

To those who champion person first language, I challenge you. I am certain that you always say the right thing. Are you certain that you always actually put the person first?

Dreams and Champions: Learning to Accept and Support Ourselves and Each Other

Dream Street is a five day, four night camping program for children with physical disabilities. The camp is held on the grounds of URJ Henry S. Jacobs Camp in Utica, MS and is sponsored by NFTY’s Southern Region. Dream Street was founded in 1975 with the mission that all children, regardless of their abilities, must be offered the chance to have fun, to make new friends, to achieve, to be accepted for who and what they are, and to learn from the challenges of group life. Each counselor is paired one-on-one with a camper and is responsible for supporting, supervising, and encouraging that camper 24 hours a day for the week. Both the children and the staff at Camp Dream Street benefit from the life-changing experiences the camp has to offer. I wrote this during my volunteering there in 2011.

I just got back from my first dip in a swimming pool in about a dozen years, where I had the privilege of swimming with current Camp Dream Street Mississippi participants – as well as one camper who I first met when I came down to Mississippi eight years ago. I came to Dream Street late compared to most participants, first experiencing it in law school as a guest of my dear friend, a long time Jacobs Camp alum, Jack Rubin. As such I can’t really say that Dream Street facilitated my development the way it has for so many kids.

And yet, in retrospect I am aware that I learned an important lesson while watching the NFTY-Southern participants take on the role of primary care-givers for people whose disabilities exceed mine in complexity. I had already learned many of the important lessons our campers learn about independence, communal dynamics and self worth because I was lucky enough to attend other URJ camps for the first two decades of my life. And here I learned, from my friends who came through the program and the current students whom I watched, that, perhaps, meeting my needs was “no big deal” (a Dream Street catchphrase) and, perhaps, I could turn to my peers as a source of care. Today my needs in my work place are entirely met by my co-workers, and while that has been an evolution that took some time, I don’t doubt that having experienced Dream Street before played a major role in that.

Camp Dream Street offers something special to three different populations. For the young campers, we have the experiences that allow them to grow and develop in a myriad of positive ways. For the older campers and participants in “Great Expectations” (a special program for teen campers), we teach them both skills and a world view, some of which I had to develop on my own as an adult. Lastly, for the NFTY-Southern kids, not only do they get incredible insight into their own abilities to be caring, nurturing & capable, as well as into the lives and realities of people with significant disabilities, they also get a level of connection across generations that I think is unparalleled in other regions. For there are staff members that come back to Dream Street for 10, 15, and in one case 35 years – starting from when they were NFTYites themselves! From my perspective, this shared experience of service bonds these NFTYalumni to each other, and to place, even more strongly, and those bonds are maintained decades after NFTY itself has ended for them. It even allowed someone like me, who grew up in another region (NFTY-Northeast) to be embraced and absorbed in his 20s by this wonderful community.

In sum then, what I can say is that by the simple virtue of its program, and the love & connection it engenders in both its campers and its NFTY-Southern participants across the years, in a single week each year Camp Dream Street Mississippi has the potential to play a pivotal role in the development of both Jewish young people (as well as their families & communities), and people with disabilities, from across the South. And, in my case, also far beyond. . .

In the years since I wrote these words, I have come to believe them even more strongly. Today we have ad campaigns trying to teach people not to be awkward around people with disabilities.  Dream Street, or something like it, takes away all of the awkwardness by replacing discomfort with familiarity. Similarly, not the day goes by when I do not encounter a person with a disability who needs to be meant toward about forcibly asking for what they need. I am no exception. Though I thought I learned the lessons of Dream Street, that my needs were no big deal and that I should be willing to ask for help, in the summer of 2013 I was reminded how far I have yet to go.

I was at a White House event giving awards to Champions of Change, specifically around issues of disability. They were an impressive group.

Each champion that spoke repeated the theme that part of their success had been in being open about and proud of their disability. I, mere weeks before, had suffered through a job interview because I was unwilling to admit that I needed some assistance to find and access a restroom. They had internalized that their differences were no big deal. I was still struggling to ask for basic help. I have learned that we need programs like Dream Street not only to teach Americans without disabilities, or even to open the eyes of those of us that have them, but as a strengthening bulwark against the message of difference and awkwardness that not all of us are quite champion enough to overcome.

I am grateful to Dream Street for what it has done for me. All cannot be done by one Camp in Mississippi, however. I encourage any who comment to think about other such programs that exist, and what other ways we might accomplish the same goal. Thank you