Struggling with My Limits: A Personal Reflection on the Intersection of My Disability and the Days of Repentance

This is unabashedly a personal reflection. I am sharing it because many people might find themselves where I am, and sometimes it is comforting to have someone name the issues with which we are struggling. I am not even going to pretend that I have universal answers, just thoughts, some of which comfort and some of which do not.

Yom Kippur is a fasting holiday, but I have not really fasted for years, since my doctors have long indicated that this is a dangerous practice for a body that for one reason or another is constantly fighting digestive issues and dehydration. I am not alone in this, and it is perfectly consistent with Jewish law, which is very very clear that it is a sin to endanger your life or your health by fasting. PSA: if you cannot fast safely, please do not fast.

I have, however, been able to reach a happy medium, where I drastically reduce my food intake, drink only water, and in general try to turn food from part of daily life into medicine for the day, helping me to maintain the otherness at the heart of the day.

Many of you know that I had ostomy surgery this spring, a generally wonderful life change, the realities of which I am still getting used to. One change that I am already aware of is that if I go more than seven or eight hours without a decent sized meal, my body is racked in pain. I can only imagine what attempting to eat minimal amounts of food for 24 hours would do, especially in an ostomy that is not quite functioning at as well as we would like.

Similarly, the medications that I take to keep my ostomy functioning have made hydration and even greater challenge, and so it is likely that I will need to continue to drink the watered-down Gatorade electrolyte solution (I call it my gator water) throughout the holiday. In short, I will be able to do very little, this year, to modify my eating habits in honor of Yom Kippur.

This is jarring for me. Not the sense of religious obligation, since I know full well that I am in the clear, but the practical question:

how do I make this a day of reflection when it will physically feel like any other? How do I find a spiritual discipline of otherness, without the physical crutch that changing our food patterns represents?

I think it is probably too late to answer that question for this year, but I welcome any friends and loved ones more also unable to engage in a physical fast think about how we might invoke the holy other together for next year. If you have a way that works for you, I commend you and would ask you to comment and share.

This is not the only disability that is troubling my Yom Kippur observance this year. I normally make a pretty extensive practice of Mechilah, the practice of seeking out and learning how you have wronged others, and making it right as best you can. This is very important to me, and I have even written about how it could be a metaphor for inclusion. And yet, this year I did very little.

You see, another one of my disabilities is depression. When my depression is in a bad place, like now, my general self-esteem craters, and, much more importantly, my sense of myself as a likable individual plummets. Simply put, I have been reluctant in my practice of seeking out how I have wronged others because my mind is awash in my many shortcomings, and God forbid someone should suggest something additional, I have no doubt that I will blow it all out of proportion.

Mental illness can be tricky like that. Intellectually, the very fact that I can write the prior paragraph means that I am aware of the phenomenon, can name it, and see it, and yet, should it happen, I would be powerless to stop it. And so, I have not sought a catalog of my wrongs, mostly for self-preservation. If I have wronged you, I cannot reach out at this moment because the Jewish calendar says that this is the day for it, but as soon as I am in a stronger place, I will invite you to let me know so that I can do better.

I am certain that I am not the only one for whom the high holidays exacerbate mental illness. It was many years before my anxiety disorder would allow me to listen to the unetanatokev prayer without being absolutely floored by the horrible fate that I was sure awaited. I still have to remind myself strongly that I do not believe in determinism, just to sit through the prayer.

In this item I am not so much asking for suggestions as hopefully offering strength. If you, like me, are finding some part of the holidays difficult to deal with because of mental illness, all I can say is go easy on yourself, take care of yourself, and know that, religious imagery notwithstanding, the opportunity to repent and make peace lasts as long as we draw breath, so it is okay if you need to put it off for a while, I think.

Thank you for listening, and a good and a sweet new year.

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Opening the Cage: Taking Back the Power

I guess the word that I would use for the past couple of days is triggered. I think that all of humanity recoils reflexively from the notion of children forcibly separated from parents for any reason other than their own safety. I know that I have tremendous trouble even reading the articles about what is being done to those seeking safety and a better life in our country, and to their children who have not even made such a choice.

As a Jew, this natural human repulsion is intensified by the collective retelling of the separating of Jewish children from their parents throughout history, from Egypt when they were condemned to die, through thousands of years of periodic forcible conversion, to Nazi Germany, wherein, in full circle, children and parents were condemned to die in numbers never before considered, having often been forcibly separated first.

So to, as a person with a disability, do I feel this most keenly. As documented in the NCD report Rocking the Cradle, on which I am privileged to have been a signatory, we document the history, and current practice in some states, of forcibly separating children from their disabled parents, often with little more than outdated prejudice or belief to support the decision.

What this means is that I have spent more time than many listening to the painful stories of parents grieving their children ripped from their loving arms, and children who know only that a government official is removing them from mommy or daddy.

Also, because of the wonderful work that Kramer Levin does for people seeking asylum, I have heard more than most people ever want to know about the horrors from which people are running when they come to this country, child in arms, seeking sanctuary.

Sanctuary. When we define this word as a place of refuge or safety, we often do not think about the relationship between it and the rooms in which so many of us pray. And yet, these are not two different words, but rather the same word. The reason that we use a word that literally means place of holiness to refer the place of refuge or safety is because of the historical practice that churches were in fact places to go and be safe from various coercive government actions.

But I like words, and I like the Jewish way of interpreting things where we are not particularly concerned with which came first in holy interpretation. So, I like the idea that we use the word sanctuary because it is so very holy to reach out our hands, and make a place of safety for those who have been persecuted. By granting sanctuary, asylum, we make this country the holy city on the hill that many of its founders envisioned, even as they fell short.

Given this, it would be maddening enough that we see the grounds for asylum narrowing-a retraction of our holy embrace from those who are fleeing persecution of a type that we have deemed no longer worth our notice. But our President and our Attorney General did not stop there. Now, the US has gone from holy refuge to barbarism reminiscent of the pre-final solution Nazis as we rip children from their parents and throw them into cages for the ostensible crime of using an established norm of international law to seek a place of safety.

Let us hammer this home. We can disagree, reasonably about the welcome the United States does or does not ask and to those seeking a better life. I favor a more open policy, some may favor a more restrictive one. We can even reasonably differ as to which population and which circumstances we believe should trigger a right of safety in the US.

But I just do not understand how anyone could believe that the “crime” of trying to fit within or expand those guidelines makes it okay to throw children into cages away from their parents.

Detain. Deport. Some think we do this too little, and most in my social spheres believe that we do it too much, but that is a conversation for another time. Whether you are pushing for open borders or zero immigration or anywhere in between, can we stop for a moment and realize that separation of children from parents in the absence of a safety concern is evil, and caging children is monstrous.

Just listen to those two words. Caging. Children. Caging children. It makes me want to vomit, or scream, or rage,-or all three

But we are powerless, right? Or at least limited to a screed like this one, a Facebook post, or a contact to a representative who cannot legislatively override the President without two thirds of his or her peers? No.

At least until the hypothetical invention of mind control, the power of government to execute its will is limited to its ability to influence the actions of the human beings charged with executing that will. The reason that the Nuremberg defense “I was just following orders” is rejected the world over is because certain orders should be disobeyed. With the possible exception of nuclear annihilation, no government edict can be implemented without the participation of its vast array of agents.

In a previous era of injustice, Andrew Jackson famously undercut the power of the Supreme Court, in indicating that he would not use executive branch resources to enforce the Supreme Court’s decision that the state of Georgia was committing injustices against Native Americans. In an apocryphal construction, folk history records the notion that Jackson said “John Marshall has made his decision, now let him enforce it.”

This drives home the point that a law or policy not executed may as well not exist. What if every person of conscience were to join together and simply refuse to execute the administration’s policy. It would be toothless.

So how about this? In addition to venting our feelings in our social media echo chambers, and even the more important work of protest and of contacting our elected officials, what if we all tried to figure out how to reach the federal agents who received the orders to throw children in cages. If one of them refuses, that agent will be fired. If all of them refused, and said this is not my America, the order would be nullified, if not rescinded.

We are watching in not so slow motion what happens when the power and machinery of our government is turned to dysfunction, plutocracy and evil. In five months, we get to begin that most American of revolutions that happens every two years at the ballot box. In 29 months, we get to complete it as we elect a new (I hope) President.

As we face the injustice and dysfunction, we must be reminded, however, that the power of the government to perpetrate this injustice is the power with which we collectively vested in the it. When that power is used to do something we cannot condone, sometimes we must practice civil disobedience, and take it back. One person might feel powerless, but together we are power personified. Even as we work to change our government, let us unite immediately to stop injustice. If not now, when?

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Colostomy Surgery in 2018-Easier Than You Think, Here Is What You Need to Know: Part IV in the Colostomy Series

In the first few entries of this series, I have been focusing on my decision to move forward with the colostomy, why, and what it means to me, and what it means to ask for help. I will be moving on now to talk about the actual experience. I certainly did not know what to expect when I arrived at MGH (the Massachusetts General Hospital) on February 22, and I was contending with a fear of hospitals, fear of anesthesia, and like everyone, a fear of the unknown.

I arrived at MGH at 6 o’clock in the morning to, of all things, a paperwork snafu. Apparently, at my preoperative testing the day before, they had sent me home without ever checking me out in the system, and the folks in the surgical center were both unable to check me in (since I had been checked in in a different department) and yet unable to check me out of the other department. This did not seem to bode well.

I am grateful that I put careful thought into who to bring with me to the hospital. Many who follow this blog, or my social media presence have probably heard reference to my friend Winter, either as the talented photographer on all of my professional headshots, or because of the touching tribute to our friendship that he wrote in his blog here.

What you might not know about Winter is that he is unflappable, generally adept at medical situations, knowledgeable of my medical history, and, perhaps most importantly, on the shortlist of people that can actually keep me calm in the face of adversity.

I doubt that many of you will arrive to a medical procedure still checked in from the previous day, but I do not doubt that many of you will have some routine paperwork item present itself when you arrive, and that at that moment it will feel anything other than routine. It pays to have a friend who can manage the situation and you at that time.

After what felt like forever but probably was not very long, my registration was resolved and I found myself beginning what felt like the endless line of presurgical discussions with residents, nurses, and people I could not identify. I had a two item checklist that was very important to me: first, wanted to make sure they understood my difficulties with anesthesia, and second I wanted to make sure that they understood my troubles with Foley catheters.

With each person, even if there stated role had nothing to do with it, I would answer their questions, and then, when they asked me if I had any other concerns, I would repeat that I really wanted to make sure that the anesthesiologist knew of my trouble with gas-based anesthesia so that appropriate precautions could be taken, but the surgeon understood that my recovery from a catheter was likely to be as long as my recovery from surgery itself.

Whether a testament to my persistence or a testament to the attention and care of my team at MGH, what I can tell you is that I was able to talk them out of the catheter, and that a creative anesthesia team came up with the sedation plan that completely avoided the use of the gas which I had such a negative reaction so many times my youth. I cannot guarantee what others’ outcomes will be, but it never hurts to ask and stick to your guns.

So, the surgery happened, and unless my surgeon writes a blog post, I cannot tell you much about that process, as I was blissfully unaware. What I cannot say is that waking up from this surgery was unlike any that I have ever experienced. First of all, I was not sick. Whatever those anesthesiologists did was nothing short of miraculous. Further, I have had worse pain from sunburns that I had from my incisions, worse muscle pain from a good workout, and worst gastric pain from bad take-out. Any person avoiding a necessary surgery has their own reasons for doing so, but anyone who is avoiding this one because of the fear of surgical pain should probably reevaluate. (I will note in passing that the one truly painful experience of my early recovery was my stomach’s reaction to the hospital kosher menu post surgery. If you do keep kosher, and you should have abdominal surgery, I recommend getting your food somewhere else.)

I will not say that my time in the hospital was without its challenges. Healing from surgery to your intestines means that every meal will have some discomfort, and that phenomenon did not truly fade until approaching six weeks post surgery. The first time that the glue of an ostomy bag pulls away from your skin puts every Band-Aid in the world to shame, especially if you have not yet begun to shave your belly, and you are a hairy guy like I am.

And yet, every little thing felt like a milestone. Sitting in the hospital with my mother and my friend Winter, waiting to see if the ostomy would work, we eagerly awaited every small eruption of air that meant that the stoma was beginning to work. Not since potty training 30 years before have I had quite so many people focused eagerly on the appropriate operation of my excretory system. The first graham crackers after two weeks of fluids were a delight, and while the hospital kosher menu was a problem, the first simple chicken my mother cooked for me combined the joy of Thanksgiving dinner, the relief of a Yom Kippur break fast, and the anticipation of that first bite of bread when Passover is finally done.

And, at least at MGH, the focus is clearly on reestablishing normalcy. I have never been in the hospital and had a nurse encourage me to order dessert with my meals. Everything they could reduce, from taking out the IV to ceasing to monitor my vitals once it became clear that I had had no complications from surgery all seemed to be designed to reinforce the message: you are healthy-learning your new normal.

I was in the hospital for a week because we were trying to get a rehab placement to help me figure out being independent, but I was medically ready for discharge four days after surgery, and it probably would have been quicker if I had had a little less belly fat and no complicating neurological condition. The overwhelming thing that I would communicate is that this is no big deal.

In fact, if you stop reading this series after this article, let that be the big take away. I will elaborate in the next entries, but I can tell you that with more than a week to go before the two month mark, this ostomy has become amazingly normal for me. Changing a bag is no more unpleasant than changing a toddler diaper, and certainly easier to clean. And I gained so much.

Even my first week after surgery, I had less pain than I have had in any week for the 10 years prior. The daily travail of my restroom routine, cramps and pressure sores, totally gone. Eight hours of my day restored, along with complete control of my schedule, since there really is no such thing as an emergency bag change with my type of colostomy. While I still prefer to have help handy and participating in bag changes to minimize the likelihood of an unexpected mess, I will never again be at the mercy of the winds of another person to ensure that my basic bio needs are met. I can eat without fear that I will need to frantically search for help, and worst take several hours out of my schedule even if I have it.

Obviously, some of my particular G.I. needs are specific to me and my disability. Each of you may have a different story. Yet, if you gotten to the point with this procedure might make sense for you, then you have some story of how the needs of your colon interfere with your life. Given the percentage of my readers that are people with disabilities, Eastern European Jews, or both, I would guess that they nontrivial number of you. If your doctor has mentioned this surgery, I invite you to consider just what you may have to gain. I will be exploring this more in future entries, so stick around.

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Fear, Fighting, and Forward Together: Part III in the Colostomy Series

What a difference two weeks makes. On January 20, I published a blog explaining how I had avoided getting a life-changing colostomy because of my nervousness at the procedure, and of my perception of how the procedure would be received. Two weeks later, there are hundreds of “likes”, reposts and supportive comments on the blog, the related fundraising, and the announcement of the date. People are expressing joy. Not only are they expressing support, but more than 200 people have collectively given me more than $30,000 to support my recovery, and my subsequent return to self-sufficiency. I am blown away by this generosity, some by old friends and some by those I have never met.

If this is not an expression of the powerful, wonderful, people that are out there to support us when we share the things that we are afraid to share, I do not know what is. If you are wrestling with a decision, medical or otherwise, not because you do not know what is right for you but because you are worried about the response of others, all I can say is take a leap of faith. Some will no doubt be as bad as you worry, and some will be more supportive than you can imagine. You never know till you try.

So you probably saw buried within that paragraph of generality and celebration that I have a date for the surgery. On February 21, I will have a colonoscopy and endoscopy, both because they are overdue and to clear me for surgery. On February 22, barring any unforeseen complications, I will have my surgery.

Now, anyone who read the first blog in this series knows all of the reasons why this is a wonderful thing. In fact, once I made the decision, I have routinely said to my caregivers, as I suffered through a routine that will soon be a thing of the past: gosh, why cannot it be tomorrow. I am so done with this.

Even the last big uncertainty, that of how I will support myself through the surgery and through the big changes that need to come afterward has been answered by your generosity. It is unequivocally positive, right? Sure.

And yet, surgery. They are gonna put me under anesthesia. They are gonna cut a hole in my abdomen. All those things that I see in the surgery shots of the medical procedurals that I enjoy are going to happen to me. My first surgery of any kind since I was 20. My first surgery with a real incision (laparoscopic, but still) since I was 10. My first surgery to alter my body, rather than remove an invader, since I was four. I am scared.

And recovery. I am gonna be in pain, to some extent. I am going to have to learn new rhythms around eating, sleeping, hygiene and care. I am going to have to deal with surgical recovery in the hands of my friends and trusted caregivers, all of home will be living as new and experiences I am. I am scared

And life with the bag. I wrote in the first post in this series that my friend had convinced to me that my concerns around life with the bag were far outweighed by the benefits, and he is right. But now that it is real, the concerns are still there. How many times will I spill it before I learn to change it properly? What if we are wrong and I cannot do it myself? How many times will I misjudge the changing schedule and end up with a mess? How will I experience intimacy, or even just to swimming pool or even learn to make simple excursions with a bag of my waste in front of me? The fact that these questions are insufficient to change my mind does not make them inconsequential. I am scared.

I am scared, and because the purpose of this blog is for you to go through the experience with me, I have to leave it there. I am not looking back at this in retrospect, and cannot assure you that it will all work out, regardless of what I might hope, or even rationally believe, all I can do is share my nerves and my fear.

I actually think that is a good lesson. Not that one does not need to be afraid, but rather that is perfectly human to be afraid. Would that the decision removed all apprehension, but it does not and it will not. To anyone else who finds themselves in this stage, all I can recommend is to hold tight to the anticipated benefit, and use that vision to conquer the fear. This is what I will be trying to do, and I welcome you to walk that path with me.

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Examining the Meaning of Full Disclosure: Something Even Harder to Share Than the Surgery Itself. Part II in the Colostomy Series.

Friends and family, so many of you have commented favorably on my recent blog post explaining my decision to revolutionize my life by getting a colostomy. At the heart of writing the blog post is the acknowledgment that I put off this procedure for a very long time because of my own discomfort with being public about my needs.

And yet, I realize that there is another type of need that is almost never talked about, at least in my social circle, because it is awkward and uncomfortable. That is financial need.

Rightly or wrongly, those of us in a true place of struggle tend to put on a good front. We do not want to admit that we are not making it ourselves, and we certainly do not want to admit it broadly, and look for help.

But this is insidious. First of all, who is to blame for the fact that we live in a world, and in a country where too often even those who want to work cannot, because of the loss of necessary medical benefits or some other program predicated on poverty will take things away necessary for life. Secondly, who is to blame for the fact that the safety nets in this country are wholly insufficient to the task, with unemployment benefits that can be a fraction of already insufficient paychecks, a supplemental nutrition program that falls so far short of the goal of nutrition as to seem Kafkaesque, and a Social Security disability scheme that is at once a tiny amount and is also predicated on doing no further work? Who is to blame for the fact that minimum wage and living wage bear absolutely no relationship?

Certainly, these are societal choices, not individual ones. Certainly, the need for help for an unexpected expense or a period of lost work represents not a moral failing on the part of the individual, but a practical failing on the society that have been living hand to mouth at best, and maybe worse, and makes no provision for the unexpected.

Knowing that, and knowing how hard I have worked personally to be independent and self-sufficient over the years, it is still hard for me to admit that, as my personal capacity decreased over the last few years, and with it my earning capability, I became increasingly unable to support myself, first burning through the resources that I had put away during my law practice, and then turning to other sources.

And that is the rub. For many of us, privileged as we are, running out of one’s own resources does not mean the visceral destitution of someone who grew up without our advantages. Rather it means that we quietly, and possibly ashamedly, admit to a few friends that we need help. Compounding the inequity of it all, we now become a burden on those few people to whom we felt close enough to disclose, so that a need that should arguably be distributed on the entire tax base goes onto the few unlucky enough to be in the circle of trust.

So, imagine a person living that way, on and off, for a few years. And then imagine a life opportunity like a colostomy comes along, life-changing, in my case revolutionizing and reinvigorating my ability to work at levels that I was unable to even at the height of my career to date. And yet, with it, another price tag.

Not, in my case, the procedure itself, which Massachusetts Medicaid should cover, but 2 to 3 months where even my already currently limited ability to earn could be limited further, and other things. A whole new wardrobe, as  I understand that none of my current clothes will fit over the bag. Plane and train tickets and food for the people coming to help me during the procedure and recovery. Other things that I cannot yet anticipate.

Like everyone else, I am then faced with a dilemma. Not doing the procedure does not seem reasonable, as it will just continue the downward spiral away from self-sufficiency that I have been experiencing the last few years. So, it means asking for it.

Obviously, my first impulse is to go to that same few people to whom I have been comfortable disclosing this need in the past, lest more people know that I do not have the wherewithal to do it myself. And yet, that is also not right.

After much thought, I feel like I have a moral obligation to ask publicly. Now, you might say, what do you mean?

Here is my logic: let us assume for a moment that the actual decision whether or not to make a change like the colostomy is morally neutral. (In this case, I am not sure it is because I would become an increasing burden on loved ones as my condition worsens, but let us assume that.)

So we reach that juncture, and for all the reasons of my last post, I decide to go forward. Again, in part because of my decision to go so long without treating a chronic medical problem, I lack the financial resources to get through it.

At this point, I have two choices: I can either do the emotionally easy thing for me, and go to the people to whom I have already been going, or I can do the very public thing and launch a GoFundMe campaign, or something similar. If I choose the first, my secret is safe, but I put those people in a terrible position. Either they need to come up with the resources, which may or may not be easy for them to continue to do, or they have to watch me not go through with a life-changing procedure. Even though they have no moral obligation, I have put an incredible amount of pressure on them, right?

Or, I can go the opposite direction. I can admit that I need the help, and throw it out to the public. Here, everyone person knows that they, particularly, are not the difference between whether I go forward or not. They give what they can, nothing more, and have faith that our collective resources as a community will get us to where we need to be. I have to admit yet one more type of vulnerability, but in doing so I have not tacitly on the burden around a small group.

I would offer this thought, then, to any who have made the scary, necessary decision to seek financial help from outside of your own resources. I understand the emotional impetus to keep the circle small, especially in this society that says that we are supposed to be able to do everything ourselves. I understand the overwhelming desire not to make our problems someone else’s problem. But, if you have already gotten there, I want you to think about the morality of throwing the net as broadly as you can.

Time to practice what I preach. I envision needing to raise anywhere from $7500-$25,000 to support me during this surgery. The certain cost is about $1000 in new clothing and about $1000 plane and train tickets for people to come and help me from all of the places that they will. The variable is the $5500 a month that simply represenst my monthly rent, food, etc. it is possible that I will find plenty of work that I can do after the first month, even though the travel that that the heart of my work will not be permitted for 8 to 12 weeks. It is possible that I will have almost no work at all for the entire three month period. The truth is probably somewhere in the middle.

Let us be clear, no one has an obligation to help me with this in any way. If I know that I have to go to someone for it, however, I have the responsibility to set aside my shame and my awkwardness at that fact and cast that net as broadly as I can. With that in mind, I am launching a GoFundMe campaign. I invite any to give if they are so moved and if they are able. Thank you.

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Finding My Future by Embracing Change: How Life-Changing Surgery Is Really All About Accepting My Own Differences. Part I in the Colostomy Series

So, I was approved for a life-changing medical procedure this week. If it goes the way we anticipate, it should completely alter my present reality. With a few cuts, and some recovery time, I can reasonably expect the following changes:

1. The current five hour minimum window that I require from when I wake up until when I am ready for the day should be reduced to one hour or less.

2. The current 2 to 3 hours between when my functional day ends and when I can go to bed will be reduced to a half-hour.

3. The current careful restriction on what I can eat and when will completely disappear.

4. My current need for 11 to 12 hours of paid care every day, most of which is at very particular time keyed to my biorhythms, will be reduced to three or four, only the aforementioned 90 minutes of which will need to be at particular times of the day. This should cut my weekly care costs by more than two thirds.

5. The vast majority of my daily pain will simply disappear.

Now, you are probably thinking to yourself, what a miracle that such a procedure has been invented. Isn’t modern science wonderful, and are not we lucky to live in a time when such advancements have been made. This is undoubtedly true, but the surgery in question, a colostomy, was performed for the first time more than 300 years ago in 1710, has been considered a routine surgery since 1950, and, with the advent of modern surgical techniques like laparoscopy, is even low-impact.

Now, you might say, isn’t it wonderful that a medical professional has finally identified that this procedure would help you. Again, it is certainly wonderful, and yet I must disclose that this procedure was recommended to me for the first time almost 8 years ago, when my latest gastrointestinal problems were diagnosed and identified, and we have known for at least seven years that it was really the only meaningful way that my problems could be addressed.

Why, then, has it taken so long?

One simple reason. I was unwilling to embrace the perceived departure from normalcy of having a bag on the front of my body collecting my stool. This, even though I knew intellectually that I had friends that had had the procedure, colleagues, even loved ones. This, even as my daily restroom routine, never normal due to my underlying disability, climbed from three hours a day to four, to five, to six and up to its current epic eight or more, becoming the central factor by which everything else was determined. I had left normalcy behind long before, but just could not bring myself to embrace this bag.

It was only my admission to rabbinical school, and my understanding that I simply no longer had the option to spend 7 to 8 hours a day in a hate-hate relationship with the toilet, that I, kicking and screaming, began to look at this procedure.

A dear friend, now a colorectal surgeon, began walking me through the procedure and the impact on my life. Another dear friend talked to me about the experience from the perspective of someone who lived it.

Swiftly, I learned that not only would it resolve my time dilemma, it would give me a restroom independence such as I had never known. Since the day I was born, I have needed help to use the toilet, and my reluctant muscles meant that it took longer than it did for a normal person. Even the “normal” which allowed me to attend college and law school and start my legal career demanded multiple hours per day, careful attention to eating, and regular help from another human being. All of that will become a thing of the past, once I recover and learn to change my own bag. By all accounts, this will be the biggest life change for independence since I began using a power wheelchair in 1992.

But, honestly, these practical realities were not the most important service that my surgeon friend provided. The most important thing that he did was to help me embrace the notion that I was drawing artificial lines of normal. I was drawing truly artificial lines between life realities that I could accept and life realities that I could not, based almost entirely on my own ideas about what people would find weird, and thus would impact relationships, intimate and otherwise, and what would not? He basically help me understand that I should expect that anyone willing to let me into their lives with my current realities should really be able to also accept a stoma and a stool pouch.

Why am I sharing this? A couple of reasons. First, in my professional life helping people with disabilities to overcome their obstacles, I have often found myself pushing people who struggle with taxing, exhausting, ambulation (walking) to consider wheelchairs, and those who struggle to self propel, to consider the freedom of a power chair. I told him that the stigma that they perceive is vastly outweighed by the independence they will achieve.

But how many other procedures and medical interventions fit this description? For the people I counsel, it was a wheelchair, for me it’s a colostomy, who knows what it is for someone else? Who else is restricting years of their lives, the way that I did, because the recommended departure feels strange? If I can empower one person by example, then this article is worth writing.

But it is more than that: I have resisted the colostomy precisely because, for some reason, we give ourselves license to talk about mobility issues, but an open discussion of poop or pee, that is weird, icky. If we talked about things like colostomy, or catheters, or enemas with the same matter-of-fact openness with which we discuss wheelchairs, how many more people would get the help that they need, because it would not seem so strange, so other. Different is only strange if it is outside of the world that people experience. My friend was not wrong when he suggested that others needed to accept the pouch, but he glossed over the fact that I did too. I too will need to become comfortable with this change, to the point where I can share it, and its realities, as openly as my wheelchair. I am going to use this blog to help me get there.

This, therefore, is my plan. I was approved for my surgery this week. I do not even have a date yet. Soon I will be scheduled for surgery, begin the preoperative process, and go through surgery and recovery. I intend to blog every step, sharing every interesting, unnerving, and occasionally disgusting experience as they occur. I do this for two reasons: first, I need to become comfortable talking about this openly. There is nothing more open than a public blog. Secondly, I hope it will encourage other people to share their stories of this common procedure, and demystify it for those who may be, like me, resisting the medical advice that would change their life. I invite you along with me for the ride.

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We Shall Overcome: Our Collective Power to Strengthen Each Other

I log onto Facebook and fear is everywhere: will I lose my rights, my bodily autonomy?  Is this a prelude to the end of a steady arc that began in the days of Earl Warren, and his continued through recent Supreme Court cases and through executive orders?

Nor is this fear unjustified.  Mike Pence has already announced that the executive orders protecting LGBT Americans will be rescinded on Inauguration Day.  We have every reason to believe that Roe v. Wade will be under fire in a Supreme Court with vacancies filled by Donald Trump, and federal protection for Dreamers may soon begin to look like a nightmare.

So what are we gonna do about it?  It’s absolutely understandable that we are gripped with fear right now.  Let’s give ourselves a little time to get it under control, I say a week, Max.

Then we need to remind ourselves how we got so far.  Pres. Obama has been a luxury of sorts.  When was the last time we saw our issues championed by Executive Order?  Certainly not in the Clinton era.  Eisenhower, Kennedy, Johnson, Nixon, all presidents during times of amazing social change.  But they weren’t leading the charge.  Our predecessors marched, they occupied, they protested, they ran for office.  We don’t have protest songs because Joan Baez and Bob Dylan were bored, we have them because of the imperative of moving a generation to action.

Well my friends, we just lost the luxury that was Barack Obama.  There will be no executive orders championing our issues (quite the opposite), the solicitor general will not be an advocate for our rights in the courts, and the next Supreme Court will be unlikely to give us the next Obergefell.  That sucks.

So we’ve got to fight.  We’ve got to march and we’ve got to challenge.  We’ve got to recruit allies at every level.  Can’t win Congress because of redistricting?  Let’s take over our city councils and our state legislatures.  Can’t put our people in office, vote with our feet in the streets until those in office have no choice but to listen.  The still unfinished arc toward racial justice started with bus riders and restaurant sitters.  We had a national movement of conscience and then Congress began to act.  The rehabilitation act of 1973 was a toothless piece of paper until people with disabilities occupied federal buildings, and forced people to see our humanity.  Time to brush up our protest songs, or write new ones, and take to today’s battlegrounds, maybe marching to use restrooms that don’t match the gender of our birth, even if we identify with the gender of our birth , in solidarity with our trans brothers and sisters.  The EPA was a reaction to an environmental movement, and if a climate denier is going to be in charge, and we need to step up where the agency fails, and make it so that those that would take us off the climate cliff embrace green policies because to do otherwise would make it untenable for their business.  I was on a conference call today or someone said we have to take to the streets.  If the next four years mean that government is not the answer, and indeed we must

But even protests are not enough.  If we can’t get employment protections for LGBT brothers and sisters, then we use the awesome power of social media to boycott the businesses that take adverse employment action.  If our brothers and sisters with disabilities find themselves losing the basic services that they need to live, let our able-bodied friends lend a hand while we fight to get them back.  If immigrants are harassed on the street, form a protective circle of love and defense against the hate to show that we’ve got their back.  A cat call or physical assault on any woman should invite the defense and rebuke of us all, let none walk idly by.

On its best days, government harnesses our collective energy for the greater good.  Our government looks like it might temporarily fail us.  So we have to do is in the way that’s a little more messy, and harness ourselves.  Over 50 million people voted with us on Tuesday and more than a few of the ones that didn’t were duped, and I believe will defend their fellow Americans when the truth is known.  If our leaders won’t unite us for change then we must unite ourselves.  Too every person who justly feels afraid, let us send the message, we’ve got your back.

So here’s my perspective.  Did the fight just get harder?  No question.  If we look at the Obama years as a baseline, despair is right around the corner.  So I recommend a shift in perspective.  Pres. Obama’s leadership was an unprecedented positive deviation from the norm.  Now the barriers for change are going back to where they always were.  It’s important that we remember that this, not the Obama years is the baseline, and remember the progress made, even under presidents like Nixon and Reagan.

I can’t address some of the angst that comes with Trump.  I certainly share everyone’s fear of someone with his demonstrated temper with access to our nuclear launch codes.   And his personal social mores make me nauseous.  But Lyndon Johnson was a misogynist buffoon while feminism was rising in power, Richard Nixon was a racist, and whatever we think of the Kennedy and Clinton years from a policy perspective, none of us are going to really argue that those men demonstrated great respect for women.  They could not stand against the tide of progress, and neither will Donald Trump, because we won't let him.  We will fight.

Compared to the last eight years, we are facing a dark time.  But we have thrived in such times before, and I choose to take the lesson that we have the tools to do so again.  We have 10 weeks to prepare to fight.   I'm gonna do everything I can to have the backs of my brothers and sisters, all figurative and literal.  Who’s with me?

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Making the Most of Our Mistakes: How Mechilah Can Give Us a Model to Go Forward on Inclusion

Maybe it’s because I didn’t grow up in the religious world, but I find that I often have trouble truly understanding the Jewish concept of Mechilah.  I actually spent a bunch of time reading about it yesterday as I was preparing for yesterday’s blog post, and I still can’t figure out whether the true weight of the tradition is in recognizing how we’ve harmed others and trying to make amends, or in seeking the forgiveness of those that we’ve harmed, specifically because we know that amends only go so far.  I suspect that the answer is somewhere in the middle, and that is why we see both the obligation to request, and the obligation to grant forgiveness.

I wonder if we can take this as a model for inclusion for the year.  I was reflecting this morning on the various congregations that I’ve helped to prepare in various ways this year, whom I know will be implementing things that we’ve discussed at the high holidays.  I was excited as I thought about all of the things that they will do, and momentarily perturbed as I realized that they would almost certainly not be perfect.  A week from today, and two weeks from tomorrow, there will be stories, probably at every congregation in the world, where inclusion did not happen the way we wanted.  There will be mixups, misses and unanticipated situations.

The question is not how to avoid those, because I believe that our tradition teaches us the folly of expecting perfection.  The question is rather, where do we go from here.

I’ve been in a lot of meetings where organizers are reflecting on past events, and been privy to a lot of anguished sharing sessions where participants with disabilities painfully recount things that went wrong.  Too often, the one side is busy defending the adequacy of intention, while the other side has determined that they have suffered at the hands of an organization incompetent at best and indifferent at worst.  Battle lines are drawn.  Hurts rage.

What if we did something a little different?  What if we practiced a little post high holiday Mechilah?

What if those of us in charge of organizing events were to say, “we want to hear where things did not go right.”  What if we were to then first acknowledge the painful nature of the experience for the participant that experienced it, and then have an earnest discussion about how it could be improved in the future.

What if those of us that felt excluded were to candidly share our hurt, assuming that we have a receptive audience who will show contrition.  What if we were to then do the really hard work of letting go of the pain and hurt, and offering forgiveness while we work together on a solution?

Judaism does not teach us to turn the other cheek, that sort of blanket forgiveness belongs to another faith.  Judaism does teach us that we have an obligation to forgive an individual that comes to us in true contrition, trying to act better.

If both sides practice this Mechilah, then we have a blueprint to move forward.  We’ve identified problems and solutions, and while Rosh Hashanah 5778 will no doubt still have its problems, they will be different and hopefully fewer than 5777, and each Shabbat, and each event this year will benefit from the process.

In tradition, Mechilah is about removing negative entries on the accounting of our souls (so I read).  What if, in this inclusion Mechilah, what we are doing is taking potential negative entries on the ledger of our collective and shared experience in synagogue life, and building instead credits to the ledger to make us more inclusive?  Then we might truly be sealed for a better year in the year to come, whether we believe that that is a spiritual phenomenon or not.

In closing, I hope that everyone that reads this has a wonderful experience next week and the week after.  Unfortunately, I’m reasonably certain that there will be some setbacks, and I hope we take those as an opportunity to grow our relationships, our dialogue, and our inclusion.  Shana Tova

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Teshuvah and Inclusion: What Can the Days of Awe Teach Us About How We Move from Exclusion to Inclusion for All.

I was talking to a colleague the other day about what it really means to create a dedicated plan for inclusion, and as I thought about the process, and I thought about how one of the first steps that I recommend that an organization or synagogue undertake is an inventory, like this one that I worked to develop with Combined Jewish Philanthropies in Boston while working with the Ruderman Synagogue Inclusion Project.  Maybe it’s just the time of year, but this got me thinking about Chesbon haNefesh, the accounting of the soul that Jews do in this month leading up the high holidays.

This important first step is a prerequisite to any teshuvah, to any return or repentance that we do.  Basically, we can’t really repent unless we have honestly, searchingly and unsparingly assessed who we are, the good, the bad, our strengths, weaknesses and opportunities .  After all, ultimately the standard by which we are judged is whether we were the best versions of ourselves, and it takes some self-knowledge to get there.

I was struck by the parallel of the Chesbon haNefesh and the inventory, and then I began to think about the metaphor of teshuvah as it relates to the process of moving from where we are to where we want to be on inclusion.

To me, the parallels are striking.  First, there is the idea of a searching inventory.  Second, there is the idea of actually reaching out to the people whom we wronged, and those who wronged us, understanding the situation, and asking and offering real forgiveness.  This is a prerequisite before divine forgiveness, we learn.

Similarly, I don’t care if you have the best inventory, and have downloaded every item on inclusion.  It doesn’t matter if every certifying organization in the country has told you how inclusive you are, (an analogy to forgiveness from a higher power). Until you’ve reached out to those in your own community who feel excluded, to understand the source of that exclusion, and make a commitment to try to remedy it, it is impossible to be inclusive.

Thirdly, I love the notion that the sins that we list out in one of the central prayers, the Al Chet , don’t necessarily seem inherently bad.  Some are: bribery, idolatry, hate.  Others talk about the sins that we’ve committed in speech, in eating and drinking, in business dealings and more.

It’s not that speaking, eating, drinking, or business are inherently bad.Judaism recognizes the value in all of these things. Rather, it is possible to sin while doing all of these.  What’s more, since the prayer refers to sins committed knowingly and unknowingly, the prayer recognizes that we might be going about our regular business, failing to pay sufficient attention, and sin.

I find this to be an amazingly strong parallel to our inclusion efforts.  It’s easy to look at the big sins of exclusion.  Lack of physical access.  Lack of interpreters.  God forbid, but all too common, outright discrimination against those with mental illness, or intellectual disabilities, who might act or present in ways that make us uncomfortable.

But what about our routine exclusion when we schedule an activity without thinking about how a person with a mobility impairment will get there, or when we sit at a synagogue social gathering without asking the person next to us who is deaf how to best communicate with them?  What about when we ignore the person with an intellectual disability because we don’t feel comfortable addressing them.  What about when we use language in our liturgy and choreography that makes people feel excluded, as I wrote about here?

These scenes of exclusion, the exclusion that we practice as we are doing otherwise normal things, the exclusion that we didn’t even realize we were committing, are as much a part of our inventory to remedy as the horrible examples above.  For all of these things we seek absolution, but it means that first we must truly repent and do better.

The last parallel is in the doing better.  True repentance is about more than a searching inventory, some apologies, and absolution.  It’s about making a plan to rectify the places where you sin, and commitment to learn from your past sins, to do better in the year to come, that you might be sealed for a good fate in the book of life.

That type of self-improvement isn’t easy.  It requires a plan, attention, strategies, steps, growth.  If we know that our temper was issue in a previous year (a big one for me) it’s not enough to acknowledge it, rather we must acknowledge that we are watching out for it and what our strategy is to improve it.  It’s not enough to chastise ourselves for being a little too interested in gossip only to go back to our tale telling ways before Sukkot.  The idea is to look, to plan and to take that inventory trying each day, to be better than we were the day before, so that next year when we have again fallen short, it’s a little less short, and we’ve been doing better.

The same could be said of inclusion.  It’s not enough to do an inventory.  It’s not even enough to come up with some fixes and implement them.  It’s not enough to bring in someone like me to teach for a weekend and get people thinking.  Only if you come up with a plan to address the systemic shortcomings to inclusion in your organization, and Implement it faithfully, will things be better next year than this.

So what do we do with this insight?  Yom Kippur is like a mini death from which we come back ready for new effort in the new year, committed after a month of searching, and some days of repentance.

What if we did something similar this year on inclusion?  An intense inventory, culminating in mechila, seeking and reconciling those who were wronged and making what reparations or repairs we can, followed by forgiving ourselves with a strong and purifying commitment to do better, to be reborn as an inclusive organization that learns from its past but is not held by it, so that next year’s inventory is a little better, and we continue to strive ever vigilant, ever active to be better.  When the gates of repentance close, maybe we can throw open the gates of inclusion.

So I wish you all a good and a sweet new year, a meaningful and reflective period of teshuvah, followed by a sense of renewal, and the best of sealings in the book of life.  I hope that 5777 finds us not only working on our personal shortcomings, but bringing our inclusion practices to new heights.  Thank you

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How Inclusion Helps Us Realize Our Dreams: My Visit to Greene Family Camp

“Bring your Lexus to Bruceville Texas.” 

These cheerful and yet unfamiliar words provide a perfect backdrop to my week at Greene Family Camp (GFC).  We sat in front of a campfire, with four men leading.  First, Loui Dobin, the camp’s energetic powerhouse of the director, whom I met only last year when I started my inclusion work, and yet who fits so many of the adult male archetypes from my camp childhood that I feel like I’ve known him much longer. 

Then, Loui’s son, whom I didn’t even get to meet, but who, as a lifetime camp person who has now transitioned in the professional world, I feel like I know.  On the other side, Dan, a song leader whom I just met but with whom I already feel the easy connection of a camp friendship, and Noam, one of my oldest friends, who doesn’t know the song any better than I do, but is affably playing along, like you do at camp.

This is a metaphor for the week that I’ve just finished.  Surrounded by new friends that feel like old friends, by camp fixtures that evoke all of the wonderful memories of my own safe spaces that I wrote about here and here, camp stories that though not my own feel like I could have lived them, and just enough drop ins by my old friends to tie it all together, my time at GFC really allowed me to explore how the very inclusion that I wrote about for children works for adults too.

Perhaps unsurprisingly, my original contact with GFC was about bringing my inclusion programming to the children, the staff, and and education summit for Texas youth professionals which capped off the week.  All of these things happened, and they were fabulous.  But they only tell part of the story.

As I was making my initial plans with my old friend Rabbi Ana Bonnheim, we envisioned something greater.  What if, instead of coming in for a marathon of inclusion programming as has been my custom at summer camps, I actually joined the camp family is a faculty member for a week?

I must’ve said “are you sure you can handle me for that long?” at least a dozen times.  But we decided to do it, and so, as of the first Monday of camp’s second session, I was guiding several units of campers in creating their Britot Kehillia, the governing contracts for the bunks, and by Tuesday, I was going into individual cabins to teach campers their Shiurim, or Jewish lessons.  Together we learned about the Jewish concept of Hineni, which the camp interpreted as being there for each other.  I got to watch as the campers wrestled with the ideas, embraced them and made them their own.  Slowly but surely, we formed connections, such that they invited me to their talent show on the night before I left, some of the boys wanting to put on an act specifically for my benefit.

After my inclusion program with the counselors in training, I feel like we enjoyed a strong bond, with them coming up to me at all times, for a chat, a high five, a quick connection.  Somehow, I know that I slipped some life advice in with my disability advice and I think that’s what resonated.  The feeling is mutual, as the energy and enthusiasm gave me hope for the future

I swam with kids, I ate with kids (at least one of the nights when I dined with the rising 10th graders), and I had the singular honor of being belayed on a high ropes course by a bunk full of preteen girls, delightfully chronicled here, with video below.   Someone wiser than me will have to decide whether the kids were more moved by the experience, or I was.

My incorporation into the community was more than just the campers.  Invited to the leadership team meeting because it was an honor extended to all guests, I was privileged to be able to offer some of my own perspective on the issues that the team was facing, and privileged to continue to share what little wisdom I had with the senior staff whenever the opportunity arose. 

Though I’m sure that some parts of what felt like the team’s attentive listening had more to do with the wonderful respectful people that they are than any special contribution of mine, I do feel that, at several key times, maybe I contributed a little bit.  Certainly, I felt a part of the community, driven to do what I could.

I’m very aware of the effort that went into giving me that feeling.  I’m aware of the tireless efforts of a team of senior staff, none of whom, with the exceptions of Loui and Ana, who departed before I arrived, had ever met me in person before I entered the gates, gave freely of themselves both before and during my visit to make sure that I could seamlessly integrate into a new environment. 

Whether the constant companionship, the endless offers of water to drink, or Mamtak, the GFC word for candy, to eat, or the invisible efforts evident in the fact that I was in a new place for eight days and nothing went wrong, I know how much commitment was devoted to bringing me in, and thus enabling me to give of myself to the community.  In the Reform Movement, we like to speak of audacious hospitality.  I can’t imagine a hospitality much more audacious than this.

And what did it mean for me?  As earlier blogs have chronicled, I had a truly amazing experience as a camper at the Eisner camp as a child.  Between Eisner, the URJ’s Crane Lake camp, and the URJ’s Henry S Jacobs camp, I’ve also got to experience, in some measure, what it is to be a special guest at camp, to teach the campers.

But I seldom speak of the road not taken in my life, the Rabbi that I probably would’ve been had not the realities of a young college graduate in a wheelchair made me feel that that path was unattainable, and the joy that I would’ve felt to follow in the footsteps of my father and my mother, teaching young children at camp.  This week GFC gave me an opportunity that I’ve never had before, the opportunity to participate as a full camp faculty member, to bring my knowledge and love of Judaism, not just inclusion to young Jewish minds.

This, then, is the sum benefit of my inclusion experience at GFC.  I hope that I was able to bring my Jewish knowledge and my inclusion knowledge to a whole new group of young people (and young at heart).  I hope that I was a good friend to people throughout the week, and I know that they were true friends to me.

But more than that, my wonderful inclusion at GFC, a place that, though new to me, now feels as familiar in some ways as my true spiritual home in Great Barrington, allowed me to realize get another dream.  I wrote a few years ago how camp helped me to have all the experiences of a full childhood.  It seems that the same can be true in adulthood as well.

I have returned home virtually in awe of the lengths to which I was helped to participate this week.  Truly, GFC gets to assume a place in the pantheon of treasured places in my life, right along with the camps that did so much for my childhood.

I also feel a renewed commitment to the power of inclusion, to help us give of our talents and realize our goals.  I often speak about the fact that we can’t truly appreciate the benefits of inclusion until we practice it.  We may never know to which kids I made a difference this week, but I will surely know that the difference that they made for me. 

Last week was transformative, enriching, and fulfilling at a level that my paltry words can only partially embrace, all because the GFC family is entirely sincere with the invitation to  “Come on with Me to GFC”.

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Life Worth Living: The Insidious Harm of “Me Before You”

It is with some trepidation that I dip my toe into waters that have become so roiled by so many voices, but I feel like it’s important to offer my coherent view of the insidious damage that could or will result from the film “Me Before You” a film that will be released by Warner Bros. pictures this week.

As described by attorney and writer David Bekhour in this article, the movie is about a man named Will who

“has a spinal cord injury and uses a wheelchair. True to enduring stereotypes of disability, he is angry and bitter about his circumstances. Louisa is a café-worker-turned-caregiver whose unconventional approach to life makes her almost immediately endearing. The two develop a deep love for each other that feels both inevitable and authentic.
And Will still chooses to kill himself at the hands of others. He follows through on his methodical plan to commit suicide because the rigors of life in a wheelchair simply make his a life that is not worth living.”

Now, since I shared this and a few other critical articles, some have pointed out to me that this author oversimplifies the nuance of the book upon which the movie is based (no one has seen the movie yet), in which the female protagonist spends the majority of the time trying to dissuade the male protagonist from his ultimate course.

I’m glad to hear that, and it would hold significantly more sway were this not a work of fiction.  Since this is a work of fiction, the author holds the ultimate choice on the ending.  The author could have ultimately made Will choose life, at least as of the end of the book.  (It is a choice that we each get to keep making for every day of our lives.)

I don’t want to impute motives to the author.  It could well be that the decision to die was intended as a tragic commentary on the futility of our efforts against the ceaseless pull of entropy.  I don’t really care.

The fact is that, by choosing to let the character die, author has sent the message, intentional or not, that the prospect of life in a wheelchair, even one with love, romance (not always the same thing) and material comfort, is one worthy of suicide.

The main point of the article linked above is that the vast majority of people in wheelchairs are not suicidal, and in fact take great value and joy from their lives.  That is an important message, and for those who’d like to read more about it, the link above will give you an excellent perspective.

But what about those of us who are not always so lucky. In addition to being a wheelchair user, I've lived with clinical depression for almost 20 years. While I've never been considered a severe risk for self-harm, I have, at times, been treated for suicidal ideation, a precursor of sorts.

When my mental health is good, like now, I love my life. When it's bad, I cling to it with a tenacity inspired by fear of death. At those times, I need to be surrounded by messages of the value and worth of my life. I'm sure I'm not alone.

There is a term for those of us who are feeling like our disability makes life not worth living: ill and in need of help.  The last thing that we need is a film or a book that not only reinforces that message, but plants the seed of it in the minds of the very friends and loved ones from whom we need unbridled affirmation when times are darkest.

In the grips of depression, I am categorically unable to see the value in my life as outweighing the difficulty and pain.  This dark message lives in my brain, the toxic result of neurochemistry and trauma.  At those times, I need the outside, whether my friends, fellows or art to burn through the haze and help bring me back.

At best, even if largely ignored, this movie puts one more toxic message in the world in the name of sales and cheap tears.  At worst, it provides some dimming of the light that we sometimes so desperately need.

If even one person tempers their positive message about the value of life to a person with a disability with a nagging question because of this movie, then the movie has done incalculable harm.  I respectfully urge you to protest this movie, and that outcome.


In my faith, we are taught that the destruction of even a single life is akin to the destruction of the world.  I don’t know if any lives will be lost from the message of this movie, but I think we can all agree that even one would be far too many.  Protest this movie, maybe save a life, and maybe save the world.

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Calling on Musicians: Lend Your Voice to Inclusion, and Show Us That Music Can Truly Change the World

Early on in Don McLean’s seminal American Pie, he asks someone, possibly a romantic interest, “do you believe in rock ‘n roll?  Can music save your mortal soul?”  I’m assuming that it’s to a romantic interest, since the next words are “can you teach me how to dance real slow?”

Yet, in the way of lyrical verses, with their ability to convey ideas beyond words, the first two questions have always spoken to me of something deeper than the text would indicate..

These words have always put some kind of imperfect expression to my lifelong experience of the redemptive and transformative power of music.

As a Jewish figure with a public persona, I freely quote the wisdom of Jewish sages.  Ancient Jewish aphorisms like “it is not upon us to finish the work, nor are we free to abstain from it.” (Pirkei Avot 2:16) and “if I’m not for myself who will be for me, and if I’m only for myself, what am I, and if not now when” (Pirkei Avot 1:14) define both my teaching and the motivations of how I live my life. 

As such, you could be justified in assuming that I had spent my formative years in a classical Jewish Academy, or yeshiva.

But you would be wrong.  Rather, I learned these things not as the wisdom of the sages Tarfon and Hillel, but as the wisdom of sages named Klepper, Freelander and Friedman, and I learned them not sitting at a table over a book, but in catchy stirring melodies created by those sages and transmitted by incredibly energetic teachers of Torah with guitars that we called song leaders.

In these ways, to paraphrase McLean, music emblazoned these concepts on my very soul, elevating it as we would say in the Jewish tradition, which has some noticeable commonalities with the salvation invoked by McLean from his Christian heritage.

Nor is this idea, I think, restricted to ancient texts in a religious context.  Does anyone really doubt the powerful role that ballads like “We Shall Overcome” played in our civil rights movement?  Can we really remember the evolution of our society in the mid-20th century without hearing some strain of Bob Dylan singing “The Times They Are a Changin’”?  Even in my own childhood, the words of an Israeli folk star telling my fellows and I that we could change the world were as canonical as our most ancient ideas.

If you’ve read this far, you probably wonder where I’m going with this.  I was at inclusion event earlier this week, celebrating the second year of the Ruderman Synagogue Inclusion Project at Combined Jewish Philanthropies.

We had moving speeches, and enlightened teaching.  We had exciting progress to share, and exciting ideas with which to wrestle.

And yet, I don’t think anyone who was there would deny that the most powerful moments in the evening were the opening and closing music led by my friends Neshama Carlebach and Josh Nelson.

Inspiring speeches got people on their feet the clap, but it was the music that got them up to participate, that took 350 people and made them a part of what we were doing.

The music was beautiful.  They are two of the most arresting Jewish musicians of our time, and they carefully picked songs of beauty and power that were nonetheless simple enough that everyone could join in.  And yet, the words we sang were not particularly related to the words that we spoke.

The power may have sealed the memory, but it couldn’t reinforce it.

Afterwards, I went over to Neshama and Josh, still wowed by the spirit that they had brought into the room, and lamented that a speaker like me could give 1000 well-crafted speeches and never quite harness the power of music to convey our ideas to people’s very souls.

I look forward to the fact that I think that this conversation may lead to the first powerful Jewish song about inclusion that I know.  I can’t wait to see how this new music conveys life-changing wisdom.

But I’m writing this blog, dear reader, to entreat you to take it a step further.  Inclusion is a massive and nuanced topic.  It can no more be encompassed in one song then could an entire social movement or body of ancient wisdom.

So it can’t be upon them to finish the work.

I don’t have musical talent, but I know many of you do, and in many different styles.  My part in this is to share ideas, and I encourage you to look around this blog, or in the video clips at, or at any other inclusion spot that speaks to you, and grab our ideas.  Hopefully one will speak to you.

Maybe it’s the idea in the story of Moses that we all have unique talents to do unique good.  Maybe it’s one of my ideas, like how incredibly strong our communities become when we include everybody, or the wonderful opportunities that only await us if we’re ready to take advantage of them.  Maybe it is a reflection of the idea that each different person reflects the image of God.

Whatever it is, the key to your choice should be that it stirs whatever part of your soul makes your most important music, and that you find a way to convey that message in that music.

I’m gonna keep writing articles and giving speeches, because that’s my part of the uncompleted work.  If we really want to save our collective souls, however, I’m asking you to give us the music to do it.

Are you with me?


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What I Learned from Jewish Disabilities Awareness and Inclusion Month: Trying to Regain My Sense of Perspective on the Conditions Labeled Disability

Tomorrow marks the last day of Jewish Disabilities Awareness and Inclusion month.  By the end of tomorrow, I have given 12 speeches or classes over the 29 days, each time promoting my idea of universal inclusion, that we recognize the true value of inclusion only when we are willing to welcome everybody into our communities.  I say that.  I teach it.  I believe it wholeheartedly, and yet sometimes I wonder if I live it.

The current iteration of my speech begins with a reference to four-year-old Matan, who did not understand what he was being asked to speak about when asked to discuss his experience of what would’ve then been referred to as being handicapped, because I understood that there were things about me that were different, things that I did well, and things that I did poorly, but I felt that this applied to everybody, and did not make me special.

Sometimes I worry that I’ve lost the wisdom of four-year-old Matan as I make my living in the disability world, and as I struggle, just as we all do, to live a meaningful life.  I would like to think that my various diagnoses, cerebral palsy, dystonia, anxiety, depression, and attention deficit to name a few but by no means exhaust the list, are simply attributes of mine like my finicky Ashkenazi digestive system, my hard to manage Jew fro, or the things I’m proud of like my speaking ability.

I’d like to think that, to the extent that the disabilities take a larger portion of my time, it’s because they present more challenges in the context of the world that we live in, and the time is not a focus on them, but a focus on the challenges that jump up.  I’d like to think so, but I’m not sure.

Yes, my disabilities, especially my inability to provide my own support for activities of daily living can rear up, and feel insurmountable.  It’s not my intention to minimize this.  But I look at the assistant juggling the day in day out reality of childcare as a single mother in a strange country.  I have no children.  I look at the multiple assistants for whom a letter from the government, or a form from a nonprofit represent an unfamiliar intrusion that feels like the beginning of the tailspin of the structure from which they benefit.  I too benefit from government assistance, but am blessed with a combination of English proficiency, systems knowledge and legal training that take the mystery out of most forms.  I look at the friends, even ones that share some of my education and privilege, for whom prolonged legal battles are not only draining, but mystifying in their apparent unpredictability, and I’m grateful that though I may someday find myself spending energy in the courts, it’s an environment where I will always feel at home.

I can’t minimize the realities posed by my disability.  If I don’t have someone to get me up in the morning, I will find myself very shortly all too closely acquainted with my bodily fluids.  God forbid I were to be alone for more than a day or so, it would likely mean the end of my life.  These are realities that are overwhelming, scary, and need attention.

But so are all the other ones for the people that face them.  An insightful questioner responding to a speech that I gave this morning asked me if the exhortation not to focus overly on people’s identified disabilities meant that he should eliminate, in his words, the mental pause button that allows him  to look with compassion when he sees someone apparently struggling with a disability and offer help.  My answer to him was not to remove the pause button for people with disabilities, but to expand that mental pause button to every other human being that he encountered.  What challenges are they facing?  How might I help?  Do they want my help?  (An important question pointed out by another questioner)

The key to removing the patronizing stigma that society attaches to disability is not that we should stop offering compassion to people with disabilities, but rather that we should start offering compassion to everybody else.

It’s possible that even though I preach a good game about recognizing the fundamental values and challenges of each human being, regardless of whether a medical condition, of social economic one, or other is to blame, the realities of my life have caused me to inadvertently privilege struggle of people with disabilities.  Four-year-old me knew that that was not the way, and instinctively rejected the distinction.  34-year-old me needs to try to recapture it.

So as Jewish Disabilities Awareness and Inclusion Month draws to a close, I pledge to try to be aware of and inclusive of everyone.  Not in the minimizing way that says that because we all have struggles, the struggle of the individual is unimportant, but in the affirming way that says I want to ease whatever struggles are within my ability regardless of their root cause.  If we are serious better racing stigma of disability, then we have to try to work for a place where cerebral palsy and unemployed are equally descriptive, and the extent that either situation provides hardships for the individual experiencing it, we do what we can to help to include them in society.

I know that this will promote inclusion.  I secretly hope for other benefits though. 

First of all, I hope for the benefit of learning to see in my own head that I can overcome the challenges that life throws because my challenges are not so difficult and unique as to be worth surrender.  Secondly, I hope that this lifts the stigma of certain needs.  I’d like to get to a place where my need for help in the restroom is no more a daunting request than a person who needs a ride because of a broken car.  I’d like to live in a world where people can be as a matter of fact about the challenges posed by their chemical sensitivities as I am about the need for ramps for my wheelchair, not because the ideal solution will always be available, but because expressing the need should be on exactly the same hierarchy. 

I don’t exactly know how we change that perception.  I’m gonna keep talking about it, and I hope to slowly observe the change in my own head, and then the lucky enough to influence it elsewhere.

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On the Anniversary of the Week That Changed My Life: Lessons Learned from My Father's Passing on Changing the World

The below marks the text of an email that I sent out to my personal mailing list marking this week, which began one year ago with my father's passing, and ended one year ago with my first speech on universal inclusion.  Because it was written as a letter, it is perhaps more personal than my customary blog post.  Because I reflect on important lessons, I wanted to share it here:


I have been pondering whether to share anything this week, even as my siblings post moving updates to Facebook, make visits to cemeteries, and other ways mark this occasion.  My week was marked by taking things from my mother's house as she prepares for an eventual sale, indelibly reliving my memories, while hopefully permanently taking some reminders of my father, and of the home that he and my mother created, into my home, and my life.

On Friday, February 6, 2015, for any who don't know or don't remember, my father, Norman David Koch, Rabbi, passed peacefully from this world after a brief illness.  Like all of my family, his sudden death at the young age of 66 rocks me to the core.  While some indicators of the suddenness of his passing, like the puzzle and projects with my nephews that were left uncompleted, present tangible proxies for the disruptive nature of his passing, some unfinished pieces are less visible.  When he died, we were midway through a conversation on my life, about which I have since written that he won posthumously.

Exactly a week later, on February 13, 2015, I gave a speech to NFTY convention in Atlanta.  If there's anyone left on my personal email list who hasn't seen it yet, you can find it here.  Most of you know that, in the wake of that speech, combined with the ongoing argument that I had had with my father, and the new awareness of the time-limited nature of my ability to affect this world, I launched my new initiative, about which you can find out more at

This email, though, is not an update on the Igniting Inclusion Initiative, though if you would like to receive such updates, you can sign up for our mailing list here.  This email also isn't a fundraising request, though I'm certain that my father would be thrilled that a fund has now been established to support bringing my message to those places that cannot afford it, and you should feel free to donate in his memory.

What this email is is a reflection on where I've come and what I've learned since that cataclysmic week a year ago.  I have learned that when you put your mind to the idea that you can change the world and you work at it relentlessly, it is amazing what you can accomplish.  Whatever else, I've been privileged to speak to over 10,000 people about inclusion this year, and the invitations aren't even slowing down.  If 1% of them go on to make a change, at the hundred change agents.  Not bad.

I've learned that while ego remains as risky a thing as I was always taught, one should never underestimate one's unique ability to contribute to a particular cause.  Time and again, including this past weekend, clients and audiences tell me that my combination of experience and delivery give them something that they couldn't find elsewhere to advance inclusion.  I still struggle with the question of what difference one person can make, but, I think that I finally come to accept that my voice does add something unique to the conversation, and I encourage anyone who feels like they have something to say on an issue of import to speak up, because your voice, too, probably has something important to add.

I've learned that God works in very mysterious ways.  I was devastated when last week's snowstorm preempted my speech at Temple Sholom on the Shabbat to the anniversary of my father's death.  It was only yesterday, as we were making arrangements for me to deliver the address by Skype on this Friday, that I realized that now, instead of giving the speech on the anniversary of the day marked by loss, I will be giving it on the anniversary of the day that marks the beginning of the adventure that he inspired.  What an amazing thing, that an act of God allows me to celebrate this beginning in the spiritual home of a man without whom nothing would've ever began.

And, I've learned that even revolutionary changes require reality checks.  Recently, a wise friend reminded me of the importance of continuing to embrace the extensive toolkit I've garnered in my professional life to support me as I build something new, and that I should not presume that I cannot monetize my extensive legal skills in this period of transition.  He also taught me by example that even when you feel like you have lost the key source of guidance in your life, you can find wisdom in other places if you are willing to listen.

And so I have learned much in this year.  While I would have gladly traded these lessons for another year with my father, I share them to honor his memory and so that if anyone else can take any positive inspiration from his death, then it's out there.

Thanks for listening,


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Universal Inclusion for Lawyers: How Helping Your Client Maximize the Value of Inclusion Can Also Reduce Both Litigation Complexity and Liability

People say to me all the time, “oh, you work inclusion, and you are a lawyer, do you practice disability law?”  The answer is an emphatic no, and I want to start out by saying that nothing in this document is intended as legal advice, or in any way to substitute for consultation with counsel.

And yet, I did train as a lawyer, though I never practiced disability law, and I did study disability law, both in law school, and many years later as a disability policy expert.  It is perhaps only natural that I begin to wrestle with the question of how one informs the other.  At worst, this piece will serve no purpose to an experienced attorney, but I believe that an experienced attorney examining counseling on a disability question might benefit from a reframing of the issue.

In my employment related inclusion work, my basic thesis is simple.  Employers hire potential employees because they hope to benefit from certain skills, talents or labor potential that those employees bring to the table.  For the purposes of this calculus, the relevance of disability is the extent to which it precludes the fullest and best expression of those skills, talents or labor.

I posit, therefore, that the employer-employee negotiating process should be reimagined from “here is a disability, how do we accommodate it?”  to “how do we best capture the value from this employee that is the reason they were hired in the first place?”  Within this framework, all of a sudden no “accommodation” is off the table, if the cost benefit is right.

Throughout my legal career, my employers always started with an idea of what they were looking for, a talented lawyer.  I remember, just before I was to start my first law firm role as a mid-level associate (I had lateraled from an in-house role), I expressed some concern to the partner who had brought me in, because I knew that I was going to have trouble manipulating paper and documents to the extent that they were still relevant to a practice that was still transitioning into the digital age.

Unfazed, he said “I hired your mind, not your hands, if we need to get someone else to handle the paper we will.” 

I recommend that employers look at each employment challenge this way.  Let’s assume that you’ve hired someone because they have phenomenal coding skills.  Let’s further assume that it has always been the responsibility of each individual coder to maintain her work area, organizing papers, creating files, sorting incoming mail.

It’s perhaps a no-brainer that if you hired a coder with a manual dexterity problem, but who was gifted at computer code, and the challenge was that they couldn’t to do those organizational tasks, you would assign them to someone else.  Not only do you not want to lose them, but you probably don’t want to come up with a laborious solution where they now spend 60% of their time cleaning their desk, but, hey, you made it possible.

I picked this example on purpose, because you might readily realize that if each of your coders was spending 10% of their time on organizational tasks, and this coder would need to spend 60, you could hire one administrative individual, and not only enable this coder, but a 10% productivity boost on everybody else.  This is actually my basic concept of universal inclusion, the idea that, anything that we might provide an accommodation to a person with a disability, we should readily provide to another employee, provided that the demonstrated increase in productivity outweighs the cost of the business. 

Other examples: I use voice recognition software because I can’t type at all.  How many senior executives or law firm partners either type very slowly, or still use Dictaphones or even real-time scribes, and would have their productivity improved immeasurably if they could do as I do and have their words appear on screen.  My voice recognition suite, which is the most expensive type, with full support for legal vocabulary, costs less than $600, and that’s when not bought on sale or in bulk.  For industries outside of law or medicine, the cost is only $200.  Further, if this option is already universally available, then an individual who develops a repetitive strain injury can quickly transition. 

Similar arguments can be made for flexible schedules and commutes, if the business permits, and most other accommodations.  The whole point of the theory is that, if value can be shown, then it should be considered.  I can’t imagine an able-bodied person making the case for why they would benefit from my specialized restroom accommodations, but if they could, and their productivity would be increased more than the cost, why not?

That’s all well and good, but what does it mean for lawyers.  Again, I reiterate that this is not legal advice, but I will share that the basic framework for the employment accommodation mandate is that a person with a disability must be hired if they can perform the essential functions of the job, with or without a reasonable accommodation.  A reasonable accommodation is defined as an accommodation that does not pose an undue burden on an employer.  To determine both of these things, the law mandates a good faith negotiating process.

My approach will not eliminate lawsuits, as we all know that unhappy plaintiffs are never going away.  But, let’s explore the application of this standard if you’ve gone through my process.  First of all, by determining the talents that you’ve hired someone deliver, you’ve basically defined the essential functions of the job.  If you would readily give the function to somebody else in order to have a talented individual in the job, then it isn’t an essential function. 

If you wouldn’t, it’s worth asking the question of why not?  Maybe it’s because you haven’t embraced the process defined above to maximize value, or maybe it’s because that function really is essential to the job.  Your lawyer will help you determine that, but if you’ve thought seriously about why you’re hiring people for a particular job, you’re already halfway there.

Now, can they perform the job with or without an accommodation that does not pose an undue burden?  First, can they do the job?  If they can’t, there is your lawyer’s strategy.  Either your recruiter misidentified the talent, or, despite the two of you working together, you are unable to find a way to unlock it.  Again, if you’ve engaged in my process, you’ll know that already, and the process will have been your good faith negotiations.

Or maybe you’ve identified a strategy but rejected it.  If you rejected it because it’s unorthodox, then again you failed to embrace the process that I identified above.  The process envisions offering any accommodation which will allow an employee to contribute the talents that you are looking for, provided that the cost does not outweigh the benefits of those talents.  If, on the other hand, you’ve embraced the procedure, but found that the cost of the strategy outweighs the benefits of employing the individual, your lawyer has a strong start on the cost benefit analysis.

Litigation is uncertain.  Only your lawyer can help you navigate the ins and outs of the particular legal standards in your circuit, your state and your situation.  (In addition to the ADA, most states have their own disability law.)  That said, lawyer or client (or both), if you follow the procedures of universal inclusion, not only will you maximize the talents of your workforce, but you provided yourself with the beginning of a strong legal defense.

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Sermon Slam: Standing at Sinai

I was privileged to deliver the following in a "sermon slam" for the Jewish holiday of Shavuot last week. The holiday of Shavuot, literally translated as weeks, is celebrated 7 weeks after Passover, to celebrate the Revelation at Mount Sinai. Tradition teaches that every Jew, past, present, and future, stood together at Sinai at that moment.  It's depicted as a scary, loud moment with the mountain suspended over our heads. It is a foundational narrative of the Jewish people.   As such, we slammers were asked to remark on the idea of "Standing at Sinai" I chose to explore the experience of pervasive standing metaphors for the nonambulatory, the unsatisfying resolutions by some, and my own empowering understanding. It was well received, and I was asked to put it up here, so enjoy! 

I won’t stand for it. (Tongue firmly in cheek).

Maybe I’ll be a sitdown comic. (Self-deprecating chuckle).

When asked “what do you stand for?” I miss scarcely a beat before I say “not very much.”

I’m used to joking about standing, a humor no doubt born of the alienated feelings of a little boy asked so many times to rise when he could not. I talk about standing ovations that make my neck hurt, and I wait for the drumroll, the chuckle, the moment that will make it okay.

Sometimes the discussion is more serious. Rabbis in ancient texts discussing which prayers I can’t say, rabbis in modern times discussing which devices I can’t use. All face one simple reality: I can’t stand.

I can’t stand.

Can’t stand for a minute. Can’t stand briefly. Never could, never will.

I. Can’t. Stand.

And yet we all apparently stood at Sinai. All of us past present and future stood to receive our revelation.

What does that mean for me? Was I not there? Was there no place for me who could not stand? Have I built an entire theology around a revelation where I wasn’t allowed in?

Or maybe, at that moment, I could stand. Maybe at that transcendent moment, much like the redemption prophesied by Isaiah, all disabilities were removed, and I could stand.

But what does that mean?

If I could not be me to receive revelation, can I be me and the live the covenant? Does a God that has to change me. even to talk to me, really want me?

Is there a place for me in this covenant. This revelation to the people who stand?

One thing I know to be true.

I. Can’t stand.

But wait, Can’t I stand?

Do I stand?

Is it really true that I can’t stand?

In the haze of revelation, I realize that sometimes I do stand. I remember the college party where I stood swaying in a circle my hands on one shoulder to my left and one shoulder to my right as another bore me up from behind. Some meaningless song playing as we swayed in camaraderie.

I remember dancing for the bride and groom at a wedding as again others kept me on my feet, undertaking sacred and joyous obligation

Is this how I stood at Sinai? Leaning on my Israelite brothers and sisters, on my right and on my left?

What’s more, cowering as a group, a mountain hanging above our heads, flame and sound and smoke, did we all lean a little bit on each other’s shoulders?

Did the person bearing the weight of my body for the muscles that would not, could not, take some comfort in my presence?. Did I perhaps bear the weight, a little, of one whose spirit could not stand alone?

I. Can’t. Stand.

At least, I can’t stand alone. I can’t stand without help and support. I can’t stand because I’m too weak alone. To stand for revelation, to stand at Sinai, perhaps we are all too weak to stand alone.

I leaned on you, my brother, my sister, to stand at Sinai, to have the strength to take on the covenant, but perhaps, just perhaps, you leaned on me to.

Perhaps we all stood at Sinai together because we could not have stood at Sinai alone. Maybe we can never stand alone.

Do we ever stand alone? We give thanks for our meals in groups of three, offer the rest of our prayers in groups of 10. A great sage taught his followers that each follower was part of his stairway to heaven, ending a lengthy service because one student left. Without them, he could not stand, climb, ascend.

Maybe this is why it was so important that I did stand at Sinai. Maybe mine was simply the clearest expression of an object lesson for us all.

I. Can’t. Stand.

But neither can you. Against the weight of the covenant, we stood at Sinai together because it’s the only way we could. Each of us yes, but only each of us together. Our own commitment, but leaning on each other. I stood at Sinai, because I stood with you.

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A Lesson in Embracing Inclusion from Coe College

What does it mean to truly be ready for inclusion?  I think readiness for inclusion begins with a state of mind and a commitment to grow and change.  To see this commitment, one cannot but be convinced that change is imminent, and one can truly believe it will be impressive. I had the privilege to spend a few days last week in Cedar Rapids, Iowa working with Coe College to take a good hard look at their current preparedness for welcoming people with disabilities, and to help them begin the process of thinking about how to improve.

I went in not knowing what to expect.  That I was invited was encouraging, but it was hard to know what my reception would look like.

The weeks running up to the visit fostered optimism.  It seemed that a very diverse population of stakeholders wanted meetings.  We added a public speech to the schedule, and the College began to generate media interest in my visit.  On the day that I was to fly out, as a freak snowstorm in Chicago disrupted all flights through the Midwest to Iowa, and I was minutes away from canceling my trip, but the determined Coe team found a driver, a contractor in Chicago, willing to drive all the way from Chicago to Cedar Rapids.

I arrived at Coe late at night, with care to be provided by the faculty and students of the nursing program.  Despite the extraordinarily late arrival due to my altered travel plans, and some obstacles posed by some unusual factors at the hotel, the instructor and the two students providing my evening care were able to get me cared for and in bed, with the instructor staying to greet the morning team so that things would be seamless.

I began the next day teaching a workshop that was designed to examine, challenge and evolve attitudes on students with disabilities and inclusion.  I was completely uncertain who would attend, it being open to the entire faculty and staff.  In the end, I was greeted by a group comprising almost 10% of the entire faculty and staff community, including the entire senior leadership of the college, as the college president had decided to cancel the Tuesday morning executive meeting and bring the entire executive team to my workshop.  He led a group in the breakout sessions, of which we needed four, rather than are anticipated two.

And what groups they were.  The 35 people present generated so many ideas, thoughts and concerns about students with disabilities that I almost couldn’t get through them all in the 15 minutes that I had allotted for my review of group output,  while the participants listened to student presentations.  And they were thoughtful concerns, perhaps not all couched in exactly the paradigm that I was teaching, but all generating significant interest in, and concern for inclusion.  (In point of fact, if they had been within my paradigm, then they wouldn’t have needed me.)

When we came back together to discuss their responses, they eagerly embraced the potential of the concept of universal inclusion, the notion of focusing on each student for the value that they bring as a student and reimagining the accommodation experience to be an experience where each person’s individual needs were met, regardless of medical diagnosis.

They peppered me with thoughtful questions about how they might make this a reality.  The rest of the day was spent with my doing a deep dive into the current state of inclusion at Coe.  I toured the campus, met with key stakeholders, received the combined student input from a meeting that I had missed because of the travel change, and was even treated to lunch in the college dining hall.  That evening, I spoke to the Cedar Rapids community about inclusion in employment.

Now, I will not say that my visit did not identify many potential improvement areas for inclusion, because it did.  I certainly won’t offer that the current state of inclusion at Coe is particularly a model for other schools, because they have much work to do.  To be honest, though, that isn’t particularly unusual.

What was unusual, and what impressed me more than I can say, was the incredible eagerness to make a change.  Bringing me in was a good first step, but only tells part of the story.

As I mentioned, a substantial percentage of the Coe team including the entire executive team were enthusiastic participants in my workshop.  On the student side, the enthusiasm was equally apparent.  My tour guide was inspired to completely revamp the Coe tour to make it universally inclusive, and the admissions office was receptive.  The president of the student body stopped me to say that the student Senate had funds available and that they wanted to know how they could best use those funds to promote inclusion.

At the conclusion of my trip, in a closed-door meeting with the executive team, I gave them candid blunt assessments of the next steps that they needed to take, which were met with a deep sense, from the president on down, that they intended to embrace them.  After an hour telling them the hard work they had ahead, I was met universally with gratitude and appreciation.

This, then, is the inspiration of Coe College.  I left Iowa Wednesday morning absolutely convinced that the entire Coe community was poised for a giant leap forward.  It’s entirely possible that they will leapfrog catching up in their opportunity areas right ahead to becoming an exemplar for the collegiate community.

I can’t emphasize how much this is critical to change.  The combined student, staff and faculty commitment is at least as important as the financial commitment, and vastly more important than the current number of accessible buildings on a particular campus.  I truly believe that Coe College can already be considered an exemplar.  Not an exemplar of current inclusion practices, but rather an exemplar of the choices and commitments prerequisite to meaningful change.

I am grateful to have observed it and to have participated in it, and I encourage others to embrace it.


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Seeking to Truly Inspire: Igniting the Fire of Ideas, Not Smothering in a Wave of Pity

So, I want to rehabilitate inspiration so that I can inspire you. I want to teach you and ignite you the fire of change, and never, ever be smothered with a wave of pity. I want to be an inspiration because I have found something worthy to share with you. This is the type of inspiration for which I think you should be looking, and to which, I think everyone, disability or no, can aspire.

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It’s Not About Me: A Universal Message of Inclusion

The strength of my message is not the specific value that I bring to the table. As a known quantity, that value is pretty accessible to those looking for it. Rather, the key is all of the priceless value, as friends contributors and professionals, lost the greater community when people with disabilities are not included.

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My Father's Voice: Stilled, but Never Silenced

I was born in 1981. The anthems of the 1960s, from "We Shall Overcome" to "The Times They are a-Changin'" would soon be replaced by "Material Girl" and "Manic Monday," while Lyndon Johnson's Great Society was soon to be eviscerated by Ronald Reagan's supply side economics and deregulation. This materialistic cacophony would not touch me, however. Rather, I am told that as I lay on a warming table on that cold November Shabbat, 11 weeks premature and struggling for life, a powerful voice enveloped me in love and song all night.  My father always said the one saving grace of that evening was that I had not yet been moved to the isolette where I would spend the next 3 months, meaning he could touch me, and sing.

I know that he sang songs of prayer and love, including, writing for me, as he and my mother did for each of their 5 children, an individualized loving musical adaptation of a traditional Jewish song (Mine came from the seder song "Baruch HaMakom").

But I bet he also sang of the prophetic vision of a world redeemed and the overwhelming Jewish imperative to pursue justice. That's a safe bet because these themes were so central to the soul of the man that I cannot help but be certain that he would have bequeathed them at my birth, as a living anthem against the rising self-preoccupation which would be typified by the meme, “greed is good”, by the end of the 80s.

As we encircled his deathbed three short, heart-rending weeks ago, his beloved children were the ones singing to him of peace, love, and of God's perfected world, which he could envision so clearly, though, like all of us, never reach.

We promised to continue his work, the endless agitation for ideals which he kindled in us like a mighty flame. We assured him that, as taught by his favorite Talmuidic aphorism, it was not upon him to finish the work and we would not abstain.

And indeed we have not.  All five of us advocate strongly for causes that are important to us, and already in the short time since his passing, have returned to our advocacy work.  My older brother, for instance, has relaunched the project that he started years ago under my father’s guidance, to write a book chronicling his experience and advocacy as both a special education professional and a person with learning disabilities.

Personally, I was privileged to honor the seventh day after his passing by addressing nearly 1000 Jewish teens in an effort to ignite in them my father's passion for progress on the issue of inclusion, typified by his membership of the CCAR’s inclusion task force. It is easy to see how that is an issue close to my own heart as well.

You can find that speech here, and it will soon be available with subtitles.

The amazing part about giving this speech was seeing the passion that it kindled in the teenage audience, many of whom I was privileged to engage with afterward.  I now understand more fully why my father was so committed to youth work as a venue for justice.  In the wake of this incredible response, I have chosen to honor his memory by working to fully embrace his vision that I make this advocacy a central focus of my life.

My father felt strongly that, despite the at times overwhelming financial hurdles that I face as a person with a disability, the community would sufficiently value my mission that, as he frequently argued, I would find the necessary financial support.

As such, and is chronicled in a previous post, I have conceded to him the posthumous win by setting up a crowdfunding campaign to ask for financial support to bring my message to a broader audience.  The campaign can be found at, and I would ask any who are willing to honor his memory by giving what you can.

It is my hope and belief that eventually my speaking and teaching will provide sufficient income to be self-sustaining. However, in order to build such a stream of income, I need to begin by taking engagements one at a time.  My hope with this campaign is to raise enough to sustain me through that process.

My father was not one who ever prioritized money over mission, and yet he was someone who understood that in order to make a difference, one must be able to take care of oneself.  I, along with my siblings, have pledged to take up his voice, in order that, though it can speak no more, it is not silenced.  If you can help me support that mission, I would be eternally grateful.

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