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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


I have joined WordPress!

This blog is the next generation of the blog that I launched on Svbtle. As on that blog, which will be or has been ported over to this site, I will write to share my thoughts on a broad range of topics, relating to disability, to Judaism, to law and society, and anything else that suits my fancy.

With the power of the WordPress forum, I hope that you will share my posts broadly, and engage in robust but respectful dialogue on the topics under discussion. I will most likely not join the discussion as a commentator, but may be moved to write future posts based on your collective inspiration and wisdom. Also feel free to email me at matansblogideas@gmail.com if there’s a particular topic that you would like for me to address. Thank you!


Reclaiming Memorial Day: Can We Make It Real Without Being Touched by Loss?

Memorial Day became real for me on October 2, 2009, when a high school friend, Captain Benjamin Sklaver, was killed while serving in Afghanistan, the victim of a suicide bomber. Before Memorial Day 2010, the day was a mix of half remembered parades, three-day weekends, and the life cycle events planned when everyone is off work. It was the summer denoting bank holiday rightfully lamented by commentators nationwide.  That Memorial Day, the sacrifice of our nation’s heroes came home, and now the day is never quite the same.

Ben and I were not super close, he was a senior to my freshman. In fact, I had closer friendships with his younger brother Sam, who was my age, and his parents, Gary and Laura, whose Hamden Connecticut house became a home away from home when I was unable to return home from Yale for the holidays. As such, I cannot say that I felt the deep personal pain of losing a close friend.

Neither, however, had I only the generic admiration and respect for a man whose heroic and tragic story was held up as an example in Time magazine, and who, though he died at the age I am now, had served his country, found love, and founded the Clear Water Initiative, an organization that continues saving and improving lives almost 5 years after his passing (direct donation link here). After all, in this Internet connected age, we often learn the moving narratives of our fallen heroes.

Rather, it is the death of a hero made personal. When I think Ben’s sacrifice, I experience it through the memory of our first meeting. I was in the eighth grade, and Ben was taking over a Jewish leadership position from my sister, Shira, who was a graduating senior. As Shira came out to meet my school van, I saw framed in the door what seemed to me to be an impossibly tall, grinning fellow. Shira told that this was Ben, who would be the religious and cultural vice president when I joined our region of the North American Federation of Temple Youth (NFTY) in the fall. I remember seeking out Ben that fall, and feeling cool because I knew one of the officers. I remember when he, and the other officers, made me feel included when, sometimes, as a 12-year-old kid in a wheelchair, I felt a little left out.

These few moments are the sum total of my memories of Ben, but they make his sacrifice real and poignant for me in a way that 1 million moving tales of heroism cannot. The grinning silhouette in my doorway becomes the face of the fallen hero.

I think that the impersonal nature of loss is probably what drives the move from somber Memorial Day observance to a focus on picnics, barbecues, and life cycle events. Leaving aside a commentary on the corrosive force of commercialism, and the loss of symbolic power in favor of a three-day weekend, sacrifice takes on a different dimension when the loss is personal.

As we are about to complete our 13th year of ongoing combat operations, far too many of us are gaining those personal connections, and I rejoice rather than lament for those whose lives have not been so touched. That said, I wonder if we can capture a sense of connection by a slight change in perspective.

A friend posted a Facebook reminder that Memorial Day was for those who did not come home, while Veterans Day was for those who did. Surely this is an accurate distinction, and yet, I wonder, can we meet our very human need for real connection to our fallen, even through those who came home?

During my time as a member of the National Council on Disability, I was privileged to serve in a civilian capacity with Captain Lonnie Moore (U.S. Army, retired) and Captain Jonathan Kuniholm, (United States Marine Corps, retired). Captains Moore and Kuniholm obviously survived their time in the military, and have thrived in civilian life. Yet, both sustained serious battlefield injuries, and have permanent disabilities.

Though I have never asked, I assume that, having been in such heated combat, they lost comrades and, but for the grace of God and modern technology, might well have lost their lives. As Captain Moore reminded me today, for all intents and purposes, he did die, only to be revived by yet another form of heroism, the service of our medical doctors.
As I hear of fallen heroes, can I be empathetic enough to realize how easily that could have been my friends and colleagues, Jon and Lonnie? Can I link the memories of their comrades to my memories of them much as I described with Ben? I would like to think so.

Many of us are blessed not to have lost a friend or loved one in service to our country. And yet, after 13 years at war, almost all of us have had meaningful interaction with someone who served. Just last week, I had an x-ray from an x-ray technician who was an Army veteran who told me of his service and I opened a bank account under the helpful guidance of a young branch supervisor who told me of his recently completed naval service. Connections abound.

So, as we look this Memorial Day at the stories of our fallen heroes, can we take just a moment to understand their similarity to the veterans among our family, friends and neighbors? Can we use those common bonds to personalize their sacrifice, and maybe to make Memorial Day real for us? How about we just try?


Diverse Advantage, and Diverse Adversity: We All Have Privilege to Check

My name is Matan Koch. I am White, and as such belong to a racial group which had effectively, if temporarily, conquered the world by the early 20th century. In pursuit of Empire, the European powers traversed the world, concurring, exploiting and enslaving. Nearly ¾ of a century after World War II signified the beginning of the end of the colonial era, whole regions of the Globe are defining themselves in terms of how well they have managed to recapture their own culture and self-rule after European dominance. In my own country, my race holds a slim majority in population but a vast majority in opportunity and economic power. Our other races, one with a not too distant history of enslavement, all with a still unfolding history of discrimination and exploitation, still experience an incredible deficit of opportunity in terms of education and economic resources. This is in addition to outright discrimination, legal until 50 years ago, and prevalent today.

My paternal grandfather, a White man, had a college degree, and worked for most of his life in White-collar careers, from business ownership to teaching. My paternal grandmother, a white woman to whom he was married from when they were each in their early 20s to his death at the age of 83, also took college courses, and worked professionally in careers ranging from music education to high school and collegiate audiovisual. My maternal grandfather was also white and also had a college degree and worked as an accountant for his entire professional life. I know less about my maternal grandmother, but she was white and, though, to the best of my knowledge, she had no education past high school, did secretarial work in office settings. They too were married from their 20s to her death in her 80s. My mother has a bachelor’s degree and graduate education, and worked for 35 years as a Jewish education professional, both teaching and running large religious schools. My father has a bachelor’s degree, a master’s degree, and a five-year professional degree, and has spent the last 35 years working as a congregational rabbi. Both of them had fairly stable home lives. So did I, and I grew up knowing that I was going to go to college, exposed to philosophy, literature, and art in the home where I grew up, while simultaneously learning everything from cultured grammar and diction to basic math and science.

My father helped me with college admission essays with greater skill than the average guidance counselor. I applied to Ivy League schools secure in the knowledge that I had all of the basic skills for which they were looking, most of which had been in my family for 3 or 4 generations. Today, I go into cultural events or job interviews with a look and sound that sociologists tell us even minority interviewers have been indoctrinated to associate with success. It is ridiculous not to acknowledge this massive source of privilege.

My name is Matan Koch. I have Cerebral Palsy. I use a wheelchair and personal care. My voice sounds a little different, and one of my hands is visibly contracted. In a country where my basic needs to survive are guaranteed only in poverty, the employment rate for individuals like me is a tiny fraction of the general public.

Until I was 10 years old, it was legal to discriminate against people like me in employment. I would be 12 before the law would mandate that places of public accommodation need to make themselves open to me, and grandfather clauses insure that, in many cases. they still do not. My ability to gain public education was only first legally proposed shortly before I was born, and is still often subject to litigation. I would still not be guaranteed accommodation in private school.

In many countries in the world, I am considered subhuman, a thing to be hidden, of no redeeming value as a family member, and certainly not as a professional. Short decades before my birth, states in my own country were forcibly sterilizing folks like me, and it was not until just before the turn of this century that the Supreme Court stated that I have a right to live in the community, rather than experiencing the warehousing in abysmal institutions that was the norm not long before and, sadly, has still been reported in this decade. Though an Ivy League graduate, I am regularly infantilized and presumed unable. When I roll into a job interview, there are times when, stellar resume notwithstanding, I know that it is over before it begins as people start hinting that I might be better and a job less demanding than whatever it is that they have in mind. I am the consistent object of systemic discrimination, and have it markedly better than many other Americans with disabilities.

My name is Matan Koch and for those unfamiliar with the name Matan, I am male. For thousands of years, my gender treated women as chattels, submissive property. Women got the franchise in living memory, and were legally vulnerable to sexual harassment on the job in my lifetime. The male bias in my culture is so pervasive that it is difficult to truly see.

I did not begin to understand that until a piece that I was given in high school English class made the point vividly. The author wrote a paragraph about a day in the life, but instead of defaulting to male terms for traditionally male professions and female terms for traditionally female professions, it defaulted to White for traditionally White dominated professions and Black for traditional minority professions. As a class, we viscerally reacted to reading about policewhites and sanitation blacks in a way that policeman and stewardess did not quite stand out. The generalization is frankly just as egregious, but we are still used to it that we do not see it.

My gender gets better jobs, gets paid more for the same job, and still dominates the senior positions in every industry. Basic biological realities experienced by my gender are normative and accounted for in employment, while rights around pregnancy and lactation still require a massive fight. My gender has boasted every single American President, and still dominates the clergy even in those religions where it does not have a monopoly. Sociologists tell me that my gender’s thought process is the norm of the business world, and that only now is corporate America beginning to stop telegraphing to women in business that they need to think more like men. I have an incredible advantage.

My name is Matan Koch. I am a Jew. The systematic slaughter of my people has persisted from Ancient Babylon to Nazi Germany. In many places around the world I am still hated and reviled, and would need to hide my religious identity. Even in this country, without a legal history of religious persecution, my people were subject to pervasive distrust and discrimination at least as recently as the childhood of my parents. I still face regular attempts at conversion, though, not, like my ancestors, at the point of a sword, and periodically, even in this country, some disaffected malcontent will do their darndest to go to kill a bunch of my people. The latest one, in Kansas, did not manage to kill any Jews while tragically killing three Christians, but, he was trying.

Corporate America and law firms had quotas and hiring restrictions on my religion well through the 1970s, and the voices on the radio routinely tell me this is a Christian country. If history is any judge, even the Jews of a society where they are doing well might eventually find themselves dispossessed, as were the well to do Jews of Spain in the late 15th century. I have known ethnic discrimination.

All 4 of these are true and accurate, to the best of my knowledge. They are integral parts of me. Unquestionably, my life would be harder were I a minority Jewish woman in a wheelchair, and easier if I were a nondisabled Christian White man. It seems to me that the flaw in the relatively myopic and immature Time magazine article that will not die, mentioned again in a discussion group in my house this week, is the failure to recognize that the same person can have both privileges to check and disadvantages to acknowledge.

If I am to have a meaningful discussion with a nondisabled African-American male, I need to check my White privilege, he needs to check his nondisabled privilege, and we should both be aware of the privilege that we have by being men. It is remarkably shortsighted to think that only those that have not faced disadvantage have privilege to check, and this appears to be the article’s biggest weakness. I strive to go through my life interactions cognizant of my privileges, even as I cannot escape my challenges, and I think no amount of adversity is sufficient to negate the value of that approach.


There Is No Try: My Mini-Revolution When I Stopped Trying to Change the World

Any post that combines a reference to Star Wars with a reference to the Beatles is probably trying too hard, which is ironic since my goal is to write about refocusing my sights more realistically. A friend shared an article on Facebook the other day about a Yale graduate who has found success on a children’s television show. I will not link the article here, because it is not particularly germane, but something that he said stuck with me.

He said that he nearly declined the role because, though unemployed, as a classically trained Shakespearean actor, and a Yale graduate no less, it seemed insufficiently serious. Rightly or not, this got me to thinking about my own life, and how I am finding new opportunities for change by looking a little smaller.

As a teenager, I wanted to save the world. I remember going to Rabbi Jim Ponet, the Howard M Holtzman Jewish Chaplain at Yale, to ask about the likelihood of raising $2 million from wealthy Jewish alumni to meet my disability costs over a lifetime of public good. I was 17. Jim, God bless him, did not laugh outright, but did suggest to me that I probably needed a few more accomplishments before I could go to someone asking for that kind of investment. I went to law school, still looking for the role where I could change everything.

I got out of law school and found that there was no job where I could have the impact that I wanted and meet all of my financial needs. Nearly 10 years and one largely uneventful presidential appointment later, I found myself at another time of transition. Again, I began looking for the big job. I would be a nonprofit professional, or maybe start a disability consultancy to take advantage of my corporate expertise, and/or my policy expertise, in playing in including people with disabilities, while helping businesses to capture and corner the market. If those options did not work, then I was just going to search for private in-house roles. My focus was so big and so grandiose that it only really left room for all or nothing.

Nonprofit jobs were not really forthcoming, and neither for that matter was an in-house role. I found myself looking for freelance work, mostly to pay the bills. I found some, working with some wonderful nonprofits here in Boston. The income only meets a portion of my needs, but it is something. More importantly, in the few months that I have been freelancing, I have been able to contribute to 2 major advocacy pieces dealing with significant issues facing people with disabilities, I am taking the lead on a series of important recommendations on another policy issue, and I have been asked to begin to think about the structure for a program that could materially impact the lives of a disadvantaged population here in Boston. (Pardon the vagueness, none of these projects are actually public yet). None of them pay a fraction of what I am accustomed, or operate on the scope of my flights of fancy, but each will make a meaningful difference.

It is kind of amazing. Because I could not find the big opportunity, I am now faced with the opportunity to make more small, impactful contributions than ever before. I am still looking for in-house work because those bills need to be paid. I have started this blog because I realized that I could be incremental, rather than wait till I had a book to share with people. I have at least blocked out a concept website for my consulting practice, http://www.capitalizability.com, and I am ready if anyone wants to refer my first client. And, right now, and potentially even were I to take an in-house role, I am doing things that can make a difference.

Once I stopped looking for the grand opportunity consistent with the grandiose image that that 17-year-old apparently never quite left behind, and started taking the opportunities in front of my face, the myriad of little opportunities presented. And, who knows, maybe they will lead to the next one, and the one after that, until, once I have truly stopped looking or trying for it, I find my Revolution.

Does this resonate? I am certain that if you are the kind of person that reads my blog, then there is something about which you are passionate. I am also certain that you have heard all of the clichés about journeys and steps. No doubt you think yourself a grounded incrementalist, even as I did. And yet, how incremental are you? I challenge you to not pass up an opportunity to make a difference because you think it beneath you or too small. Rather, take it and be amazed at the sudden opportunity to make a difference. It took financial necessity to truly teach me this lesson, but maybe you can be a little smarter than me.


Starting a blog

Hello. Recently, I have been receiving increasingly positive responses to things that I have written. Sometimes those items have sparked dialogues on Facebook, and sometimes by email. In fact, people of been responding to bits of my writing for years, and pushing me to write a book. Is it is a project in which I am not uninterested, but the level of organization and level of content required are beyond my current capacities. I realized, however, that a blog split the difference on these issues. A blog has only as much organization as might be provided by the order of posting, and only the content that I care to produce. You, my reader, come to it as you will, and read which you like. I can spark comment and conversation, link other content, and share my thoughts.

This, then, is the structure that I propose. These first eight or so entries are things that I have written in the past which provide a beginning. As things occur to me, I will write them time permitting. Generally, I will them leave the threads to the readers. I will post links of my new posts to Facebook so that people may comment. I will follow the comments, and, if so moved, will either message individual commentators or write follow-up pieces as feels appropriate. I will try to limit my contributions to main posts so that a reader interested in my words need not read the commentary. If I have something worth saying to the group, then it is probably worth another post.

I have no mystical source of inspiration and very little agenda. In addition to writing what occurs to me, I welcome comments or personal messages if there is a topic on which someone might like to hear my thoughts. It is probably hubris to anticipate such requests, but I am open to them.

Enjoy the read. Feel free to link, and ask those who might be interested to follow. I look forward to meeting you in messages and comments.





An end and a beginning

Update: May 20, 2014: a version of this piece was posted today on Zeh Lezeh, a blog of the Ruderman Family Foundation.

May 2, 2014 marked the end of my service as a Member of the National Council on Disability appointed by President Barack Obama. Though no longer a public servant, I will never cease to work for the day when every American with a disability gets to experience the same gratitude that I felt on the day in 1998 when, for the first time, I got to be not only a recipient of government services, but that most awesome of American title’s which is “taxpayer”. (My first paycheck, like so many of our young people, was from Jewish summer camp).

I still receive government services, and only at the end of my life will someone get to calculate the irrelevant question of whether or not my ultimate money paid in meets or exceeds the money paid out. That day, however, decisively demonstrated that the world would recognize and compensate my talents, and that I could contribute not only with my good works but also by paying my fair share. It is this dignity for which I will continue to fight. And it is a fight with many components.

I will add my private voice to NCD’s public voice that sheltered workshops and subminimum wage become a thing of the past, and that innovative vocational rehabilitation and supported employment allow all Americans with disabilities to find meaningful opportunities to add their talents to the American workforce and the American economy.

I will continue to raise my voice so that my new home state, Massachusetts, will one day not be the only state where Americans with disabilities need not artificially limit their income and assets in order to receive the personal care services that they need to work and live, but rather that in all states people with disabilities will have the opportunity to achieve and contribute to their utmost, with public support for those things that very few can afford on private resources, such as personal and nursing care.

I will continue to raise my voice to see that people with disabilities are included in whatever communities they choose, included in our neighborhoods and our schools and universities, included in our churches and synagogues, included in our places of public accommodation and, though the law cannot so mandate, in all of our private associations. Let us hope to see the day in our lifetimes when we are truly made welcome any where we choose to be.

I will continue to raise my voice for the basic idea that Health Care for all should be a right and not a privilege, a right no more dependent on ethnic or socioeconomic status than on pre-existing conditions, because this must be a prerequisite for a just society in a nation with resources as great as our own. I leave government today, but know that the banner once taken up cannot be put down until are indeed guaranteed life, liberty, and the pursuit of happiness, and we can truly say that there is liberty and justice for all.

I believe very strongly in the above words, and I seek those of you who are willing as allies. Jewish tradition teaches that it is not upon us to finish the work, but nor are we free to abstain from it. One of the most important elements of this teaching in my mind is the recognition that there is only so much than any one person can do in advancement of a massive goal. Alone, there is little I could do to affect the goals articulated above. There may be little that you can do. But if we each do our little part, just maybe our goal will be achieved. Any one of these issues could be a pivotal change in the life of someone with a disability, and your part, or mine, could be just what they need. Further, I have not articulated the whole of the work. I believe strongly in the items I have outlined, but I believe even more strongly in the call to action. We need to advance the conversation on disability in this country, and so I urge each of you to do something, whether on the issues of outlined or on some other, so the day be not far when there is liberty and justice for all.