In the latest edition of his Search for Meaning podcast, Stephen Wise Temple Senior Rabbi Yoshi Zweiback hosts Matan Koch, the Senior Vice president for Strategic Change at RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities so people with disabilities can fully participate in all aspects of community. Born 11 weeks premature with cerebral palsy and confined to a wheelchair for his entire life, Koch graduated from Yale and took his law degree from Harvard Law School, and has been a lifelong advocate for those with disabilities. He joins Rabbi Yoshi as we celebrate Jewish Disability Awareness, Acceptance, and Inclusion Month (JDAIM).
Observed each February, JDAIM is a unified effort among Jewish organizations worldwide to raise awareness and foster inclusion of people with disabilities and those who love them. JDAIM was founded in 2009 by the Jewish Special Education International Consortium to raise awareness and encourage inclusion for people with disabilities and special needs. Appointed by President Obama to the National Council on Disability (where he served from 2011 to 2014), Koch is a longtime national leader in disability advocacy.
“As the child of a congregational rabbi, who was also a URJ camp faculty member, and himself a former NFTY national officer, I was born into sort of the entire apparatus of the Reform movement at a time when people like me were not a part of that apparatus,” Koch says. “In many ways, I benefitted from that. While institutional Judaism wouldn’t think about practical strategies for people like me until the turn of this century, it meant that the approach was much more, ‘How are we going to include Matan?’ and much less, ‘What’s our strategy for the inclusion of Jews with disabilities?'”
From his childhood summers spent at URJ camps Eisner and Kutz, he saw demonstrations of demonstrated a type of inclusion that would plant the seeds for his future advocacy, and fell in love with songleading.
He began his disability policy career lobbying for a major disability organization in Washington while an undergraduate at Yale (where he was the president of the university’s student disabilities community) and was appointed to the city of New Haven disability commission at the age of 18 while a college junior.
After graduating from Harvard Law, he served as counsel for Proctor & Gamble. Working with both the product marketing teams at Procter & Gamble and its disabilities inclusion network, he developed the perspectives on consumer power and talent maximizing jobs for people with disabilities at the heart of the business case for universal inclusion that he teaches today.
Considered one of the nation’s leading Jewish inclusion experts, he has developed training and materials for many Jewish organizations, including Hillel International, the Union for Reform Judaism, and Combined Jewish Philanthropies. The son of a rabbi and a Jewish educator, he has been speaking on Jewish inclusion since early childhood and has been formally and informally retained by Jewish organizations for the last 20 years.
He currently oversees RespectAbility’s workforce engagement and education portfolio, advocacy pipeline including, Speakers Bureau and civic engagement initiatives, and our Jewish and other faith-based programs. He also leads RespectAbility’s California office.
Below is a full transcript of the podcast (lightly edited):
Rabbi Yoshi Zweiback 0:02
Welcome to Search for Meaning. I’m Yoshi Zweiback. Thanks for joining me.
My guest today is Matan Koch, Senior Policy Advisor at RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities so people with disabilities can fully participate in all aspects of community. He has been a longtime national leader in disability advocacy, and a wheelchair user, himself. A graduate of Yale College and Harvard Law School, Matan talks about what it was like growing up the son of a rabbi, looking for ways to be included in the synagogue, in Jewish camping. It’s an amazing conversation, stay tuned and be inspired.
Matan Koch 0:56
So I was born at about 11 weeks premature with cerebral palsy, which means that I was quite literally born into my disability and as the child of a congregational rabbi, who is also a URJ can faculty member and you know, himself a former NFTY national officer, I was born into sort of the entire apparatus of the Reform Movement of Judaism at a time, when people like me were not a part of that in that apparatus. And in many ways, I benefited from that. Because while institutional Judaism wouldn’t think about practical strategies for people like me, until the turn of this century, it meant that the the approach was much more, “How are we going to include Matan?” and much less, “What’s our strategy for the inclusion of Jews with disabilities?” Now, if you know anything, about the way we counsel folks to, you know, work on questions of inclusion, it should always be focused on the individual anyway. So in a way, we were ahead of our time in the sense that I was focused on myself just because I was, or the efforts were focused on me because I was a subset of one. So when you asked, for instance, how could I access the congregation the question that we often hear that people can’t, while it was inconceivable that the rabbi’s son wouldn’t be able to get into the congregation. So, you know, the congregation was carrying me in from infancy. And as I was getting too heavy to carry some time around my Bar Mitzvah, we were able to secure a grant to put an elevator in, in the synagogue building, right? So it was a natural evolution, we didn’t have to have a discussion that said, “Oh, Matan wants to go to the URJ camp, how’re we gonna do that?” I’d literally grown up at URJ Eisner camp, from infancy. And so again, the camp revolved around my needs. The summer I got a power wheelchair, the camp maintenance person went around putting ramps in all of the major camp buildings since I couldn’t be lifted up into the camp buildings anymore, because I had a power wheelchair. So in many ways, my inclusion in the community was organic in a way you almost would never see. Because I am a phenomenon that is certainly I imagine, not unusual for you, Rabbi, as a so-called child of the movement right?
Rabbi Yoshi Zweiback 4:06
But it’s both, it’s both, as you share that with me, it was both beautiful and heartbreaking, you know, beautiful, that a community in your home congregation said, “Hey, this is our rabbi and our rabbi’s son, and of course, we’re going to make the effort that we should make for any kid but you know, how could we not do it for Matan?” So it’s beautiful and on the other hand, and heartbreaking because like there were other people in the congregation who had kids who were born with cerebral palsy or other disabilities. Surely, when you think about the camp experience, I grew up going to Shwayder camp in Colorado, and there’s absolutely no way when I was a camper there that the camp was in no way was the camp set up for a kid who had a disability like yours. And and I think that has changed you know in the last 50 years, you know, almost since I was a camper there, but obviously, the community included people who had disabilities and who could have gone to camp at that time, but didn’t so. So it’s it’s beautiful. And to me a little bit heartbreaking at the same time that, that the movement camp, for example, found a way to include you because you were the you know, you’re an RK. You’re a rabbi’s kid. And so well, of course, rabbis gonna come up come up on faculty, and he’s gonna want to bring his family and you know, of course, Were there moments in your life where you felt that we were like, “Oh, my goodness, look at what they did for me”?
Matan Koch 5:40
Also, I think my progress was a little different. I think, again, because we’re talking about the 80s. My perspective was much more, the few other kids I did see now I’m sure every one of them had a story as unique as mine. What the What the, when I started to think, in the way that you’re talking about was later. It was when I was established enough that the phone calls came to me about how to deal with other others with this way, when I remember that my first memory of this threw me in for a loop because I was not prepared. I was 18 years old, it was the summer. Before I guess, maybe I was 19. Summer before my senior year of college, doesn’t actually matter. I graduated college at 20. I’m one of those weird kids really, it was the summer before my senior year of college. I was sitting in an internship in New Haven, Connecticut. The phone rang and it was my old friend who would now be known as Rabbi Evan Kleinman, she had that exact moment. I can never remember which day or which time, but same person, same person
Rabbi Yoshi Zweiback 7:24
Same Eve, no matter what the last name, hyphen, it was
Matan Koch 7:28
Right. And she was calling because she was the director of Kutz at that point she had recently taken over.
Rabbi Yoshi Zweiback 7:37
And Kutz, listener, if you’re not familiar, is the name of a camp that now unfortunately, no longer exists. But it was a Leadership Academy, run by the Reform Movement. And yours truly was there in 19- … I was there in 1985 in the song leading program, and Matan, you had gone in high school.
Matan Koch 7:55
I was there in ’96 and ’97. I did the sun leading program, I did the Social Action Program. I did four different programs because I was there for two academies, two years
Rabbi Yoshi Zweiback 8:09
By the way, side note that you might not know but but some listeners know because I’ve talked about it before: My song leading instructor in the summer of 1985 was Andrew Rehfeld, who later, who’s now the president of the Hebrew Union College. And when they announced that he was the new president, I had not been in contact with him since I was 16 years old, but I remembered the name. And I was like, ‘I think I think I know a guy named …’ but back then he was Andy Rehfeld. Right?
Matan Koch 8:38
Well, that’s what I was about to say.
Rabbi Yoshi Zweiback 8:40
And finally I made the connection. And then I even found a photo of me at age 15, 16, and who is now President Rehfeld at age like 20.
Matan Koch 8:51
So I can add to that, which is to say, Andy, as he was then called, played a pretty strong role in what is my lifelong love of song leading, because when I was about three, and my parents were on faculty at what would have then been NEFTY Institute — now it would be known as NFTY’s northeast region, but back then, each region has its own acronym, and it was called NEFTY for about a year and a half. And he was the regional song leader. And as a toddler, I used to sit on his lap while he would play the guitar and play various …
Rabbi Yoshi Zweiback 9:39
Oh my God
Matan Koch 9:40
… Jewish songs. And so I too lost track of him. Not long after that, and then when he was announced as the new president of HUC, sent him a note saying, ‘Are you the same A?’ And he said, ‘Well, yes, I am.’
Rabbi Yoshi Zweiback 9:57
I love that. If you have handy at some point that photo from that time, send it to me and we can put both of them up, I’ll put up my photo of me and, and President Rehfeld at that time. But one thing I love about
Matan Koch 10:14
Unfortunately, no photo
Rabbi Yoshi Zweiback 10:15
One thing I love about that story is, and I, as someone who has been a song leader for since I was, you know, 15 years old, I guess, is the number of times over the course of my career, that someone now fully grown, you know, sometimes kids of their own, you know, will reach out and contact me and say, ‘I think you were my song leader at a convention in de Moines, you know, in 1992, is it possible …’ sometimes they have a photo that they’ve scanned. And because you know, these are memorable moments in a young person’s life, they remember sitting with that because you get the music memory happening. And so they remember it in a really, really powerful way. Was that — music’s obviously a huge part of your life — when you went in and and did the song leading program, were you the first person who was in a wheelchair, participated in such a program in that way?
Matan Koch 11:15
I don’t know. I do know that I was the first person in a wheelchair, to song lead from the stage of the Eisner dining hall, but I don’t know. I honestly just don’t know enough about Kutz’s history in that regard. I do know that my song leading instructors at the time, now Rabbi Ravi Weiner and now Cantor Rosalie Will, were, you know, somewhat intrigued with this kid who couldn’t hold the guitar if his life depended on it. But he had clearly grown up around, you know, around all of it, and just soaked in sort of the feeling because, you know, there’s no truism that not needing an instrument to song lead, which I don’t think any of us as kids really believe. But it’s an adult, you sort of realize that what it is to lead someone else in song is really just about connecting with all of the people around you and elevating intent. And it’s such an interesting metaphor, for those of us doing disability work, because, quite honestly, in order to embrace the idea of myself as a song leader, I had to wrestle with the question, ‘What is a song leader?’ I had to wrestle with, at a level that I don’t think many young people do: Which parts make a song leader? And are they things that I can do? And the reason that that’s important is that when we look at disability employment overall, when you look at a person with a disability, and you look at something they want to do, whether it’s song leading, or neurosurgery, what you’re asking yourself is, ‘What does it mean to do this profession?’ Really meaning not every little thing that goes into it with the, what the law calls the essential functions, but what we in the real world is called the parts of it. And are those things that somehow I can do and in many ways, my deep desire to be a song leader was the first time that I went through my that analysis, and said, darn it, I’m going to do the song leading program, even if most stages are inaccessible and that I can’t hold the guitar. Because what matters is that I learned how to teach and lead people in song, not that I have everything that I would need to get a job as a UAHC — at that time — song leader.
Rabbi Yoshi Zweiback 14:00
It’s so helpful too, to think about, you know, and I like the word ‘essential,’ you know, what’s essential about this, and what is non-essential, and then that helps you define what, what the job is, in a way and I have heard many times that truism that you don’t need to play an instrument to be a great song leader. And I believed it the first time I heard it, and I continued to believe it because I actually saw people who, usually it’s someone who actually does play the guitar, but just terribly. They would be better off not playing the guitar. But I’ve seen some really effective songwriters who are just not good guitarists. And I’ve also seen people use other instruments like piano and percussion, and be amazing song leader, so I’ve always believed it. And but I love the broader point, which is, you know, ‘What is it …’ and it’s actually something I’m working on with your sister like, ‘… What does it mean to be a rabbi? What are the essential qualities and roles and functions of being a rabbi today? What are some of those through lines going back to the beginning of the rabbinic era, you know, some 2,000 years ago, and and maybe projecting out when we think about the kinds of people that we want to attract to the profession, what are some of the essential qualities? I just think it’s such a beautiful insight. And I love — and I didn’t know this about you at all — but I love that it was your love of music, your love of song leading, that started you on this journey. That was unexpected for me in this conversation as I was, I was excited about sitting with you, but I wasn’t expecting that. And how do you continue to allow your love of music and love of song? How does it continue to express itself?
Matan Koch 15:49
So I’m happily going to answer that. And then I want to make sure because we never actually got to tell the Kutz story that explains the bigger question you had about the kids who were not me. So I want to make sure that we get back to it. But let me answer that question first, and then bring the bit from the parking lot. So I think I do it in a lot of ways. One is just that music is such a huge part of my life. You know, what is on my playlist depends on what emotions I’m going through and what I want to feel. But the other is that as I was doing my touring, and speaking and teaching, my real companions in it were the Jewish musicians. When I wanted to figure out how to tour, the first thing I did was pick up the phone to my old friend, Julie Silver, and say, ‘Okay, I’m gonna be making this transition from Movement kid to someone who expects to be paid by the Movement to do a job, you made that transition at some point, can we talk through how to do it?’ And she gave me two fantastic pieces of advice that I don’t think she’d mind me quoting here. One is just decide that your service is worth something and decide that you’re not giving them away anymore. And the second is, have a rider that clearly explains what it means to bring you into town. So the two, the two pieces of guidance that I did, that I took from her were powerful. Some of the first times that I got pulled up on stage into very powerful, impromptu speaking opportunities were when my close childhood friend, but also noted Jewish performer Noam Katz would end up at a band performance where I’d been asked to say a few words, but then he would use the fact that we were both on stage to raise excitement for the work that I was doing. And then ultimately, lots of friends in the Jewish music field got on that bandwagon — my dear friend, Neshama Carlebach, my dear friend, Dan Nichols. And then ultimately, to get to the fullest thing when I moved here to LA, and I was looking for a place to live, it was my dear friend Craig Telford that found me a place to live for the first few months I was here before, before I could modify an accessible apartment. In some very odd way, Jewish music and the figures within it have have informed every place, whether it’s sort of the fact that if we’re going to be honest, for all the Talmud that I’ve learned, all of my first Jewish wisdom came from camp songs, ‘Lo alecha ham’lacha ligmor,’ ‘Im tirtzu, Ein zo a-ga-da,’ all these things that we think of as songs, but were, in fact, modern and ancient pieces of Jewish wisdom set to music that I learned that became a part of my journey, and so much so. And it still hasn’t happened. So we could use this podcast as another pitch, if we would like to, that I have periodically sent all the people they just named lists of the key Jewish texts of disability inclusion and hopes that some of them would put some of them to music just so that it would be more likely that people will learn because composition is not a skill that I have. I am not going to be the guy who writes a catchy tune. You know, the idea that we could teach people some of the truly beautiful ideas one finds in the Talmud on disability, one of my favorites, that I just take a moment to share, because honestly, I’d love to see everyone realize that there’s this fascinating discussion that most people who are rabbis have probably seen at some point of how we could be created, ‘b’tzelem elohim,’ created in the image of God, and yet all be so different, right? There is a plethora of difference among us, and within the certain modern humanistic flavor of Reform Judaism, we often talk about essential qualities of humanity or compassion, and our mercy, our creativity, all of that is great. But I like when one goes back and sees that for the ancient rabbis, these things were very literal. And in fact, there’s a text on capital punishment where they talk about, you know, being, having care with the body, lest someone think that you’re executing God because of the [unintelligible]. So then we have to come back to this question of, ‘What does it mean?’ And one of the most interesting metaphors I’ve seen is that what it means is that God is so enormous, God is so vast, that each of us is only an imperfect reflection of a small part. But this is also then why when the rabbi’s encountered disability, one of the traditional responses is to praise God for the manifold differences of creation.
Rabbi Yoshi Zweiback 21:56
Mishneh ha’briyot
Matan Koch 21:58
Thank you. Yes,
Rabbi Yoshi Zweiback 22:01
Just to, to underscore that, so beautiful, Matan. But yeah, the blessing. And I’ve never thought about it exactly the way you just shared. So I want to thank you for that, because it’s a text I’ve studied before. But in the Talmud, it says, you know, when you see an exceptionally beautiful creature, there’s a special blessing for that when you see all these different things that you could see, including if you see a king, if you see a Jewish king, if you see a non-Jewish king, and we could be more expansive, and you know, and talk about leadership more broadly. But then it says, if you see someone who is differently formed, you know, there’s a blessing and you say, ‘Blessed are you, God, you, you, you make a very broad palette, you know, you’ve used a very broad palette and your creative energies, ‘Mishneh ha’briyot.’ You, there’s diversity in creation, and I never thought about it in the way you just framed it. So I really love that. And the other thing I love about that is, you know, when we think about a world where beauty is so sometimes ridiculously and highly valued. If we think about it more expansively about what it means to be beautiful, then then it actually kind of saves that in some ways, because it’s like, ‘Look at the beauty of creation.’ There’s different colors, there’s different shapes, there’s different forms, there’s different abilities, people are formed in all these different ways. And they’re all aspects of God, there’s beauty, and each and every person, there’s value and worth and divinity and each every person.
Matan Koch 23:33
And I’m gonna take it one step further. And this to me is the zinger. So what is the traditional instruction that, you know, resulted in the building of the Mishkan and the building also later, of the Temple? It is, ‘Build Me a space that I may dwell among you,’ right? That, that we’re building a space for God. And yet, if each of us, with our varying levels of ability, is a reflection of God, then God reflects the totality of all of that, which means that to build a space — to truly build a space for God to dwell among us — it has to be a fully inclusive space, because any person, any attribute, any type, that is excluded from the space that we build, is a facet of God that we are excluding from that space, is a little less of the bringing a space for God to dwell among us. So whether that’s LGBTQ Jews, whether that’s Jews of color, whether that’s Jews with disabilities, whether it’s non-Jews, whether, no matter who it is, anytime we make our synagogues places of exclusion, there’s a part of God that can’t dwell among us. Let’s really take that on.
Rabbi Yoshi Zweiback 25:03
It’s so beautiful. And as you said that another insight I want to thank you for, as you quoted that text from Exodus about the building of the Mishkan, ‘v’asu li mishkan v’shochanti b’tocham.’ It says, ‘and make for Me a sanctuary, and I will dwell,’ and you would think it would say ‘in it,’ or ‘with you,’ but it says ‘in them.’ And so now I’m thinking about the lens of what you just shared, the idea that the the most beautiful, enduring sanctuary we can build for God is a community that sees that there is God in them, you know, in everyone. So thank you for next year’s High Holy Day sermon. Appreciate that, Matan. That was a total bonus. Okay, let’s go back to Kutz. Because you were telling me, but that side was absolutely fabulous. And I’m really grateful to you for sharing that. And I know our listeners will, will love that Torah. And then of course, the question is, how do you actualize it, and, and not a promise, but a hope is that, you know, maybe a year from now, you’ll come back and I’ll be able to share a composition with you that that’s based on on one of these texts, so please do send me those and, and, and I’ll get cracking on it as well. But let’s go back to Kutz. So tell me a little bit more about.
Matan Koch 26:29
So I was 18. I was, you know, sitting in an internship phone rings, it’s Eve I think that’s where we left it. And she said, I have an issue I’m hoping you can help. Okay, and she said, ‘we have a program participant,’ which is what they at that time called, folks … ‘this program participant is a person with disability. This program participant does not have …’
Rabbi Yoshi Zweiback 27:11
She was the director of Eisner at the time or …
Matan Koch 27:12
Kutz. ‘This program participant does not have speech and isn’t thriving,’ right? But, ‘it isn’t going well. Can you give us some advice? How we might help this person to thrive we will help them to have a good experience?’
Rabbi Yoshi Zweiback 27:13
So this is just for listeners who just have to frame a little bit more — this is a high school-age Jewish individual who is attending the the Reform Movement’s national camp, a leadership academy where you can go and study texts, you can study art, you can study music, drama, and and this is a person who doesn’t have the power of speech. And, and is having a hard time struggling at camp. So that’s that’s the, the little bit more of a profile. Okay, yeah.
Matan Koch 28:12
And first, I was taken aback because, keep in mind, this isn’t the Matan of today who makes a living answering questions like this. This was 18-year old me who really wasn’t expecting such a question, right? It’s not I was not …
Rabbi Yoshi Zweiback 28:30
You were precocious. You were already almost out of college. So what do you want?
Matan Koch 28:34
But not trained in this. Sounds kind of first, I was just skeptical. I was like, again, I don’t know what else. But then I thought for a minute because I don’t actually like ever admitting that I can’t help. Right, the probably a personality flaw, but I and I said, ‘Help me understand. What does this individual do at home? What does this individual do in school? Like how, how do they communicate and have peer interaction in those places?’ And the answer was, ‘They don’t.’ They go to a specialized school, a specialized program, a specialist everything. So at that moment, all I could tell the folks at Kutz was it may be that Kutz camp is not the very best first place for someone to have their first interaction in a fully inclusive environment. My strong suggestion is that maybe the young man should go home that there should be some work with the local NFTY regional, the local youth group, to start having experiences in these environments and maybe build up to something like Kutz, which is intense if you don’t have a disability or was intense, if you didn’t let alone if you do, let alone if it is your first experience in an inclusive environment, and but it but it left me with a feeling. It left me with a feeling of, ‘Surely, we can do better than this.’ Surely we can do better than calling up our 18-year old alumnus who happens to be in a wheelchair and hoping that they will know the answer. And so it planted a seed in my brain that we needed to do better. But I was like, I was a college kid, I was pretty focused on college, although I did happen to be writing one of my two undergraduate theses on the whole have disability. So I was at least sort of steeped at that moment in like, what did Jewish law have to say about these topics? And so and you know, but I went off to law school, I was kind of focused on practicing law for a while again, oddly enough. And then I sort of, I guess it must have been you late on to the early 2010s, that the URJ started asking for my input. I taught at my first biennial that I got to teach at in ’11. In 2011, I think probably and then, in 2015, I had just left the law firm. I was looking to build a practice in corporate inclusion, because again, I’ve always been very passionate about getting people jobs. And I got a phone call from my own friend, my old friend who was then and now. I think he still officially holds the title of executive vice president at the URJ, although he’s technically now mostly the head of the Religious Action Center, but Jonah Pesner, saying, ‘Hey, Matan, NFTY convention’s coming up. We’d love to have someone talk to the kids about disability inclusion. Might you be up for it?’ I really wasn’t sure. I mean, it was kind of thing I’d done as a young person and it had been a while at that point. I was over 30 and no longer used to doing things in that type of environment. And I said … well, I talked to my father. I said, ‘Abba, what do you think?’ He said, ‘Well, if they’ll cover the cost to get you in from Atlanta, seems like something you could do.’ I said, why not? And I said yes to Jonah, I began planning and then sadly, in late January — because NFTY convention was going to be the first week in February of 2015 — in late January, my father became terminally ill with what was a very short illness. He was dead within about a week and a half. But so, there we were, at the end of January, and he was dying, right? That’s what he was doing, unfortunately, and I picked up the phone to Jonah. I said, ‘I don’t know if I’m going to be able to make it.’ Now I had forgotten that my father had been a 30-year mentor of Jonas, so this probably wasn’t the best time best way to let him know that my father was suddenly dying. I was brought back to my senses when I heard crying on the other end of the line and realized that I had been insensitive in my grief, which I still apologize, for Jonah if you’re listening. Still sorry, I didn’t I didn’t handle that one better, but said, ‘Not sure I’m going to be able to make it. My father’s dying. I don’t know what’s going on with the next couple of months.’ Unfortunately, fortunately, whatever adjective you want to use, he went very quickly. Such that NFTY convention actually began the day after I got up from shiva. And after a lot of thought back and forth — should I go or should I not go? — I realized the following: My father had been an NFTYite, and a Kutz-nik, a NFTY board member, URJ Camp employee, a URJ rabbi, on and on and on, at one point, the president of the Northeast region of the CCAR, it was probably the fitting way to honor his memory was to actually get up and do this thing for all I wasn’t particularly feeling gregarious at that moment. I am glad I did. The number of people that were mourning for my father that were supportive of me, it was probably one of the most supportive places I could have been in that immediate space. You know. Now-Rabbi Lisa Nelson, then Rabbi Lisa Silverstein came bounding off of the stage in the middle of services to give me a hug when I walked in, because I clearly still looked distraught and confused. But later on, I gave the talk, right? I got up to a bunch of NFTYites. And I told them, how they could make a difference in disability inclusion, I had a back and forth with my old friend, the then-director of Eisner, Lewis Boardman.
And we went back and forth, about how kids could get involved. And as I came down off the stage, speaking with various clergy and Jewish professionals that were there, and all say, ‘Oh, you’ve got to come to my congregation. Oh, you gotta come. Oh, can we host you for a weekend?’ I guess I said, ‘guys, it’s like, this isn’t what I do.’ Right? Like, I was happy to do this, because I’m in an alumnus. But this isn’t what I deal with. But there was a lot of enthusiasm. And I was certainly going through a bit of a time of reflection. When one’s father dies suddenly, and he was young, and all those things. You know, there’s, it’s definitely a time of reflection. So I grabbed a group of the more vocal folks, I don’t remember many of who was in it. I do remember Ben David was there because we kept those conversations going for years afterwards. You know Rabbi Ben David? Lisa David’s husband is way most people think of him I think, but then if you’re listening, that is nothing but a positive statement. But we were chatting about, about the possibility and there was this thought that I could make a living at it, right, that, that maybe there was a need for this in the Jewish world. And that was at the same time that the Rubin Family Foundation, had just been making substantial gifts around the Jewish world to promote these ideas. And when Jay Rubin heard that I was hanging out a shingle to do it, he started recommending me to grantees that were rabbis wanting to bring me in for a scholar in residence. So I spent the next five years — this is why it’s a long answer to a short question — I spent the next five years really working all over the Jewish world to help people build more answers to that question. And the reason that that’s very much related to your original question of ‘How did it feel to be the one who got in the door when others did not?’ is because I can only really do the work that I did because of that initial get-through-the-door. There are thousands of experts in disability inclusion, hundreds of whom are people with disabilities themselves. In that regard, I was not unique. But where I was unique, was in being the — scare quotes — ‘One of us’ coming to give the thing, being the guy that folks had gone to Eisner and Kutz, with being the guy who, because of my frum years in my late teens and early 20s, I could talk the talk regardless of which Jewish space I found myself in, and which, which movement is Judaism I was talking to, you know, there’s … so I really think that the answer to your question for all it took me a half hour to get here, is that as a young person, that probably didn’t occur to me, but as an adult, it informed a huge portion of my work. I’m privileged that a lot of that work has come to live at RespectAbility. I don’t do the work as much anymore. Our Jewish inclusion program, our broader faith, inclusion, and belonging program is run by the amazing Shelly Christiansen who kindly agreed to come in and be my successor when I decided that I was moving to other things. But everything from my practical knowledge to my Talmud teachings, are all available on the RespectAbility website, and will hopefully live there in perpetuity for folks that are looking for access. So the short answer is I took the opportunity from all those years ago. And it might have taken a little while for the ROI. But there you go.
Rabbi Yoshi Zweiback 41:29
It’s beautiful. I’m thinking, as you said that at the very end, I was thinking about the Joseph story, which we just concluded, in our annual reading, you know, and Joseph telling his brothers, who knows, you know, me or dad, perhaps I was put in this place for just this moment. And what a beautiful way to think about our lives, you know, that that maybe it is just random, and there’s no meaning at all behind it. It’s just, you know, the laws of probability are such that a rabbi who’s connected to youth group and camping and, and a movement at some point, is going to experience this in his own family or her own family. And it happened to be your family. And so, you know, it’s just random. Or maybe, maybe there’s beauty and meaning. There’s certainly beauty and meaning in at least imagining that nope, nope, that that was your job. You were you were in that place at that moment. And your your congregation, that was their job. And when you came to Kutz in that was even along the way, some of the well intentioned, looking back on it, as you were telling that story about Eve, you know, the idea that she’d pick up the phone and call the 18-year old. Now, obviously, and I made the joke about being precocious, but it’s, it’s accurate, right, you weren’t just some 18-year old, you’re a really smart, thoughtful, reflective 18-year old, and so you did have wisdom to share, but had she not made that call, think about perhaps how different your life might have been. And other things that happen that might might just be random, you know, the chaos of the universe. But I love to think about the possibility that, you know, me are there, maybe it’s not that might not have taken up a lot of your time, I want to conclude with asking you to do something very difficult, which is when you think about that talk you gave. And that then led to many more talks. So you know, whether it was that, that NFTY convention in Atlanta, or the visits that you did as a scholar in residence, and now with, you know, another decade and a little bit more under your belt of doing that kind of work, seen this Los Angeles Jewish community that we talked about at the beginning, some of the challenges that that were even surprises for you about the way different Jewish communities might approach this. You know, if you had a couple of takeaways for us, you know, right now and in February when we think about disability inclusion in the Jewish community, especially if there are some some takeaways from all of that wisdom, all of that experience. But but something that that is actionable by our listeners, what are a few things that you leave us with, and again, we can go to the respectability website, there’s lots lots lots more, I’m not asking you to do the impossible here, which is to reduce you know, something so so big to something so bite-sized, but sometimes it is a helpful exercise to think about how we might do that, what are some things should be?
Matan Koch 44:33
So there are a few things I do want to take one second to respond to your observation about being in the right place at the right time. I really do believe that there’s also the element of choice. I mean, it’ll be about another six months before we get to the part of the Torah where God tells us that we can choose blessings or curses and talks about the world that will come from that, but my father always taught that that meant that we made the choices to build the world that we want. Was I put in the right opportunity? Perhaps. But I want to encourage everyone, if you find yourself in a place to make a difference, you got to actually go forward and do it. And that brings us to our first takeaway. And this is what I said to the kids when I when I gave that first talk. I told them to not be afraid to be a little audacious, to not be afraid to shake things up, that people were comfortable. A few years later, when I gave the same a podcast interview to Rabbi Joshua Harlow on his College Commons podcast, my takeaway to rabbis who said, ‘Gee, this inclusion stuff can be difficult and the congregation doesn’t, might not want to go along these,’ well, being a rabbi is supposed to be difficult, but that way, we’ll expand it to the rest of our listeners and say, ‘Don’t be afraid to go against the grain.’ A lot of people look at disability inclusion and don’t object in theory, I’ve honestly never met anybody who objects in theory. But when you help them begin to think about that, that they may have to functionally change their davening, functionally change their programming, do something that actually makes life a little more difficult, then people say, ‘We don’t want to go through all that change,’ or, ‘We don’t want to offend this person who’s always hosted this show/event in their home, even if their home is inaccessible, by telling them we’re doing it somewhere else this year.’ And my so my first takeaway is, you know, nothing about being Yisrael, nothing about being a people that wrestles with God, is supposed to be easy. I would rather suggest that it’s worth doing the emotionally difficult things, to do what’s right. Now, disability inclusion is not actually difficult to do. But you have to have the gumption to realize that it’s a shakeup. And so that’s always my first takeaway for folks. My second takeaway is don’t be afraid to change paradigms. Here’s one of my favorite concrete examples. So CJP in Boston used to retain me to consult with synagogues. And I went around to a lot of synagogues, and people were at least trying to figure out how to ramp their bimah. And it always blew everyone’s mind when I reminded them that there was nothing in Jewish law that required them to pray from an elevated platform, that instead of trying to figure out very expensive ways to put a ramp to the bimah, they could lower the bimah, they could get rid of the bimah entirely, or they could just pray in a different part of the room. Let the bimah be a thing of history. The third and really last focus that I’ll bring in because this is the focus of every pulpit talk that I give if it’s my first pulpit talk in a particular location. Don’t think about disability inclusion as a way to give people with disabilities access to your community, to Judaism, or anything else. It’s not because it’s not true. There’s an element of that and obviously, people enjoy connection to their communities. But I would rather instead you think about the friend you haven’t met, because they can’t get into your show, to be there with you. The talent you haven’t taken advantage of because they don’t have a way to communicate with you if they are deaf or do not have speech and you don’t have interpretation available at your synagogue. I want you to think about the creative person that you didn’t get to work with because they’re blind and then when they got to your synagogue and realized that you didn’t even have different textured curbs, if they said, ‘This place isn’t for me. I’m not welcome here,’ and they turned away. When I tell people to focus in on disability inclusion, I always paint this example: Imagine your best friend, the most meaningful person in your life — and assuming that you didn’t happen to share a womb with them, which I guess you know, for identical twins could be a thing if your twin is your best friend, but pretty much for everyone else — imagine the place where you met them, the opportunity, the moment where they first came into your life. Now imagine if for some reason, they couldn’t have gotten to that place. Either they’re a person with a disability, it wasn’t accessible, the car that was going to take them there broke down, whatever, for whatever reason, they never got to the place where you guys met. You’d never meet them. But it’s not like there’d be some gaping hole in your life. You just would never know what it is you didn’t have. When you look at barriers to disability inclusion, I want you to be thinking about, ‘Who am I not encountering in my community because they can’t get to me? What am I missing that I don’t even know that I’m missing? Where is that best friend that meaningful interaction that life-changing discussion, that for want of access, never made it to the moment where we otherwise would have been destined to meet. And that should be your driving factor, we can be driven by righteousness. But I find people do a lot more out of FOMO. And so let’s let’s take some FOMO. For those who are of an earlier generation that is fear of missing out. Because you may indeed be missing out on something pretty incredible, or someone pretty incredible. So there we go. As takeaways go.
Rabbi Yoshi Zweiback 51:52
by Tom, thank you so much. I really, really appreciate your time. And I’m just so grateful that we were able to sit together and I could hear a little bit of your story. There’s a lot of things we didn’t get to. So we’re gonna have to do a part two, because I want to hear more about law school and some of your work in terms of inclusion around employment and things like that. But this is a great start. And I’m just grateful to you. Thank you.
Matan Koch 52:17
My pleasure. Thank you for having
Rabbi Yoshi Zweiback 52:21
Well, that’s our podcast. Thank you so much for tuning in. Hey, share the podcast with a friend. Maybe they’ll enjoy it. I don’t know. And don’t forget to subscribe so you don’t miss any future episodes. Grateful to Matan Koch for his time, to our producer, Ryan Gorcey, our editor Raz Husany. Our theme music was composed by David Cates myself and features and vocal Josh Goldberg. Hey everybody, stay hopeful, stay healthy. And stay tuned.
Transcribed by https://otter.ai