By ROBERT GUMSON
Robert Gumson, manager of Independent Living Services ACCES-VR for the IL Services Administration is a congregant of Ohav Shalom in Albany.
As the years pass, I can’t help but reflect on my own experiences as a blind person in the various Jewish communities that I have lived. Since my childhood in Brooklyn in the 50s and 60s, I must acknowledge that today there are greater general sensitivities and awareness toward inclusion of people with disabilities in spiritual communities.
For me, it wouldn’t take much to note improvements. As a child, I was summarily dismissed by my local after-school Hebrew study program. After a month of being ignored in the classroom by a sour-dispositioned and easily irritated volunteer Hebrew school teacher, my grandfather and I found ourselves in the rabbi’s office. He apologized for his decision to relieve his teacher of the stress of not knowing what to do with me because of my vision loss and offered to work with my grandfather to support his efforts to teach me my bar mitzvah lessons.
As I was a brand new Braille reader, taught the skill by an itinerant teacher of the blind who took me out of my sixth grade classroom each week over a period a several months, my grandfather and I plodded through transliteration of my parshah and accompanying prayers. Grandpa Jack had no time to teach me any of the typical Jewish studies curricula since we needed to focus on bar mitzvah preparations. I never got to know my Hebrew school classmates or share in the shenanigans that often go on among them. Basically, I was deprived of a Jewish education. Grandpa was my teacher because my mom and dad were secular and cultural Jews and didn’t belong to a shul. Grandpa Jack was available to help me because he retired early from the Brooklyn Navy Yard due to his contracting asbestosis from his work insulating ships during WWII. Grandpa was a daily minyan goer and kept his disappointments about my treatment by his congregation to himself to keep the peace.
Eventually I became a bar mitzvah. I chanted the haftorah prayers and Parshah Yitro flawlessly, but with little connection to what it meant. My party was fun and I was lavished upon with praise for reciting the haftorah and for fulfilling the responsibilities of the firstborn son and firstborn grandchild on both sides of the family. But from that February day in 1968 until 1990, Judaism and the Jewish community meant very little to me.
During college years I studied a bit of eastern religion. I took Transcendental Meditation and practiced it for a brief period. I read the works of Carlos Castaneda and took coursework on other ways of knowing, beat poets, peasant revolutions and comparative politics and cultures. I was drawn to the notion of archetypal dreams and Maori dream world and to the power of sound and voice that comes from repetitive trance-like chanting.
By 1990 I was employed in the field of rehabilitation, married, living in Massachusetts and the father of three daughters. My wife and I searched for a comfort zone among the many facets of our Jewish heritage. We attended tots programs with the girls in a Reform synagogue. We were entertained by Jewish comedians on television and vinyl records. We even went to see a satirical Jewish rock band of the day, “Black Shabbos.”
Gateway To Jewish Life
Finally, I landed in a Conservative synagogue, which was beginning an adult literacy program. I inquired about the availability in Braille of the textbook, but learned that the book they were planning to use, Shalom Aleichem was not yet Brailled. A friend put me in touch with a retired teacher who was known for hand transcribing Braille. Amazingly, she knew Hebrew Braille and agreed to transcribe the class text for me.
Yes, that adult education experience, which was so different from my earlier Hebrew school debacle, was the gateway into finding my way into a Jewish life. The local synagogue’s adult education program assigned a volunteer instructor to come to my home on Sunday mornings and together we studied the new Hebrew reader text, my tutor with the print version and me with the Braille version. Doing the work together didn’t require any skill in Braille reading by my tutor and I learned how to read Hebrew Braille and learned at the same pace as the class. I graduated with my classmates in May 1990 and felt an awesome sense of accomplishment.
Hebrew Braille has an interesting history. It wasn’t developed until after Israel’s 1948 War of Independence, which brought soldiers home blind and visually impaired by the war effort. American rehabilitation specialists
worked with Israeli educators and devised a new Braille code for the Hebrew language. Like English it is read from left to right. Unlike print Hebrew, vowels are not imbedded within letters, but appear in a linear fashion following rules for insertion. Several of the Hebrew letters correlate with English Braille such as a Bet is a B and a Gimel is a G. In some respects, English Braille readers have a leg up on learning Hebrew Braille. I keep a full Tanach at my home in English and another in Hebrew. It takes up a lot of bookshelf space and it cannot be carried back and forth to shul. But it gives me great satisfaction to be able to read Hebrew Braille.
Upon moving to New York and joining a local synagogue in 1992, a Hebrew school and adult education congregant who was the daughter of an upstate New York rabbi, took me under her wing to help me learn how to chant haftorah from the Hebrew text. We learned that cantillation notes are not provided in the Hebrew text of the various haftorot. We gave considerable thought as to how to make it possible for me to read cantillation notes and the Braille. Eventually, we created new Braille dot combinations and placed them on the line above the Hebrew letters emphasized, and I practiced moving my fingers from text to symbols until I became proficient. Interpreting the symbols also required rewriting the text, which also reinforced my focus.
For my 40th birthday, I chanted my original haftorah Yitro from the Hebrew Braille in honor of my Grandpa Jack who would have cried tears of joy to see me do so.
Shabbos In Shul
What is it like to be blind in shul on Shabbos? Well, there are many facets to the experience. What will follow are some of the basics for me. I’m sure that they include the obvious and that the behind the scene not so obvious would be different for every blind or visually impaired person.
Upon entry into the sanctuary at various times while services are in process, I’m not exactly sure what to do. If the Torah procession is coming my way as the door opens, do I have enough time to make it to my seat or should I stand with my tallit bag in hand and wait to touch the Torah as the procession passes me by? Without a Torah procession, am I walking in while the ark is open? Will my cane tapping the wooden backs of the seats make too much noise? Often I am assisted by a fellow congregant to a seat on the aisle where I like to sit. I drop my book to the floor, fold my cane to place it in the seat compartment in front of me and get my tallit out. More times than not, I do the funky-chicken with my tallit, trying to get it folded just right to throw over my head and align it for the clips. Once geared up I can again pay attention to the rhythm and pace of the service. I begin to chant. I begin to sing with fellow congregants. I hear some familiar voices around the room. I recite the Hebrew words that I know and find myself mouthing words I do not fully know as I pray without a prayer book. Why no book? Because Siddur Sim Shalom in Braille is nine volumes big, and during the course of Shabbos it is too unwieldy for me to keep a book of Chumash and the respective volumes of Sim Shalom with me at my seat.
Here comes the Torah procession! I am excited to touch the Torah as it will pass by. If I’m sitting with someone I know they will guide my hand that is holding my fringes right to the Torah. But if I’m alone, I stand in anticipation of the Torah carrier passing me by and missing my opportunity. I wonder if we have more than one Torah out? I stand slightly out in the aisle to unobtrusively force the Torah my way. Most of the time it works.
Do not curse the deaf nor shall you place a stumbling block before the blind; you shall revere your God-I am Adonai. (Leviticus 19:14)
Alone In The Congregation
And so it goes… We chant and we sing. We lift our fringes in the air to return the Torah to the ark and roll it up. Inevitably, one of the rabbis refers us back to the page number for the parshah that we are reading. Unfortunately, my book has completely different page numbering because I’m reading a JPS straight English translation of the Five Books. If I don’t take the time ahead of Shabbos to check out chapter and verse then I will turn to a congregant and ask where we are. Sometimes I get a page number and eventually I seek out the right chapter and verse. I read along with the Torah readers. I read ahead of the Torah readers. I don’t necessarily know where the parshah ends so sometimes I even read into the next week’s parshah.
I’ll make an odd observation. Most of the time nobody comes in past me at my aisle seat. My row could be one of the only empty ones during a bar or bat mitzvah, but nobody seems to want to interrupt me with my Braille book open on my lap. Is this a sign of courtesy, or is it more likely a sign that few people want to take the risk of asking a blind person to move or get up. Why is that so? It confounds me.
We take a few minutes each week after we roll up the Torah to touch base and welcome each other. I stand in place. The congregants around me greet me. Others walk up the aisle to shake hands. Very few people say their names. Does everyone really think I recognize all the voices? I wonder if anyone ever finds me out when I talk with them for a few minutes never knowing who they are. Sure feels strange. I would think they would want me to know, but just as strange as not telling me their name is my own awkwardness in asking someone who they are. Whether in synagogue, or out in the community I have three choices. I can ask “Who is that?,” or participate in an exchange while trying to figure out to whom I am speaking, or if the conversation seems irrelevant to my knowing then I can just suck it up, and never know.
Taking An Aliyah
I am grateful when I’m given the honor of an aliyah. But I can’t help but add a few caveats to the experience of going up to the bimah. A congregant is always willing to offer me a hand up to the bimah. Depending on the individual, sometimes the sighted guide technique is a bit awkward. I try to take an elbow and follow the leader. It’s no different among congregants as it is in the general population when it comes to blind etiquette. Some people want to take my arm, even the one with the cane in hand. The appropriate technique is for me to take their right arm just above the elbow and follow my guide at a half step behind. I can walk fluidly this way and easily monitor direction and pace by body language. It may sound complicated, but it actually comes pretty natural to me. Taking my arm removes my control. Taking my hand with the cane in it freezes the cane so I can’t use it. On a rare occasion or two, someone even took the tip end of my cane and tried to walk with me as if I was on a lead.
I maneuver to the on-deck-circle otherwise defined by the chairs across from the stairs to the bimah. I say the blessings a few times in my head to warm up. I listen to the congregant with the prior aliyah to reinforce the Hebrew words in my head. I tell myself not to forget to call again after the congregation responds on the baruchoo line. My aliyah is called and there is a general scampering to my aid. The congregants at floor level want to help me up the stairs. The bimah leaders come down the stairs to help. I have noticed over the years that the confusion can occasionally lead to forgetting to ask me my Hebrew name. I try to remember to make sure I say it out loud. I also prepare for the ascent by holding my cane and tzizit in the same hand as I go up. I’m a right-handed cane user and when I get to the top I make a quick switch over to the left hand so I can reach with the fringes in my right hand to touch the Torah.
When I’m up on the bimah I enjoy hearing the sounds below. Maybe a child is running. Maybe a quiet conversation is going on to my left. I like to feel the handles on the Torah scroll move as the reader shuckles with the chanting. I listen for the change in the tune that denotes completion of the aliyah and the congregation joining in with the closing words. I feel part of the community. I make a mental note to let Pat know I was selected for an aliyah when she comes later to pick me up after kiddush.
The downward ascent always seems to go a little bit smoother. I recognize fears in the vibes I get when I approach the stairs. Believe it or not in all my years I have only fallen down stairs twice. Once I was walking without a cane with friends on either side of me and since we were so engrossed in conversation they simply forgot to tell me about the three steps we were coming up to. I wasn’t using my cane out in front so it took me by surprise. The other time I was carrying a large three by four mirror down stairs when I misjudged and skied down letting go of the mirror that crashed through the landing window. Plenty of broken glass was left behind but I stayed upright and didn’t have a scratch.
I am usually walked by a congregant back to my seat shaking hands with congregants congratulating me for the honor on the way. I pick up my Chumash again and try to find my place. Sometimes I can do so easily and other times it’s a hunt and peck to try to match the little Hebrew I can translate to the JPS English-only version I am reading.
Dog On The Bimah?
I can’t describe taking an aliyah without going back into my past and recounting an earlier trauma related to my blindness. For many years I used a guide dog. In an earlier synagogue of my choosing I was periodically honored with an aliyah. I was escorted up to the bimah by my large German shepherd guide dog. My synagogue attendance on Shabbos and occasional aliyot went on for several years.
One High Holiday season the board president wanted to give me an aliyah. The rabbi interceded and declined the offer. I was given no say in the matter and the only explanation that I was given was that “it would offend the sensibilities of the community.”
It was hard to digest the rationale. I would sometimes find myself in Orthodox synagogues that gave me an aliyah with the dog. It was particularly hard in this instance because it didn’t seem to have any negative impact on anyone I knew and there was never, to my knowledge, any prior issue made of me getting an aliyah on Shabbos. I talked with congregants. Many were outraged by the rabbi’s position. I know the board president tried to advocate on my behalf. Eventually, I spoke directly with the rabbi. He merely restated his position and our encounter became more heated than I was comfortable with and I remained unclear about how he reached his decision. In a follow-up conversation with the rabbi, I presume after a great deal pleas on my behalf from congregants, he told me he would leave the decision up to me.
My aliyah was coming up on Simchat Torah. I had the closing aliyah for the year. I thought endlessly about endings and beginnings leading up to that day. My wife encouraged me to make my decision from my heart. My brain wanted me to be the advocate for my rights. My brain was a little angry. Even someone from the rabbi’s family had weighed in with a comment to me about how I violated Torah every Shabbos by making my guide dog work instead of leaving him home. But I didn’t want to offend anyone’s sensibilities. I chose to leave my guide dog home and took the aliyah without him.
Kiddush: Or I Can’t Find You -So Find Me
Kiddush is everyone’s favorite part of being in shul on Shabbos. We break bread together. We share our weekly accomplishments and woes. We eat delicious Jewish delicacies. We often celebrate a simcha or ingathering around some communal theme. When the motzi is said and the “wall” or sliding door separating our sanctuary from our social space is opened, I am standing. I circle behind me and in front to wish a good Shabbos to those nearby. Sometimes I don’t know whom I am greeting. I’m hopeful Pat gets to the kiddush before I need to ask for help at the food lines. Most of the time she is there and I get seated while she joins the line. Congregants join my table. Most often I know them. Sometimes they think I know them. They say “Hi Bob!” The assumption is that I know their voice. Maybe the assumption is that a voice is as easy to decipher as a face.
I’m stuck in that limbo again. Do I embarrass myself and let them know I don’t recognize them? Do I embarrass them for not informing me who they are? Did I ask them last week very quietly “with whom am I speaking?” Someday my IPhone will probably be capable of putting a name to a face if I have a photo of each synagogue member. But then again, I don’t think it would be acceptable to use my phone that way at synagogue on Shabbos. What is the answer? If only people knew to introduce themselves to me each and every time we meet to remove my burden of trying to guess who they are.
Blindness And Leadership
Mom and dad taught me that “handicaps” are nothing more than inconveniences. Everyone has inconveniences. Mine happen to be related to being blind. Sometimes my inconveniences will seem large, but most of the time they are surmountable. They also taught me to speak up for myself. As I lost my sight growing up in Brooklyn, I wasn’t coddled or over-protected. If anything it was the opposite.
As a parent myself I have learned to appreciate the ambivalence it must have caused in my parents to hold back and let me go. My goings sometimes got rough. Adolescence is a battleground for any teenager. But even when I found myself dragged down beyond my capacities to resolve a problem, my parents never gave me the proverbial “I told you so.” I was always given the opportunity to make a new choice or find a new direction even when I made mistakes in the process.
My ingenuity as a blind person was truly tested was the summer I had to call home to have my parents remove me from summer camp. I attended a Jewish Federation camp in the Berkshires. I loved the camp. I have many fond memories of experiencing the heart and soul of the 60s at this particular camp in earlier summers. I learned about “international proletarian revolution” at age 12 at camp and even met the person who became my first college roommate. But in my third summer, I became the focus of a group of relentless bunkmates who tormented me. They stole from me. They stuck feet out unexpectedly to trip me. They would grab my hat and play monkey in the middle. You get the idea. The counselors tried to put a stop to the problem, but were unequipped to reign in my terrorists. Eventually, I reluctantly placed the call to my parents and they came and brought me home. The next summer I went to a different camp where the situation was almost the opposite.
I have always been a proponent of rooting for the underdog. We rooted for the Mets for seven years until it paid off in 1969 when they won the pennant. We advocated for school integration in our neighborhood in the 60s. We wanted to bring an end to war when the Vietnam War was at its zenith. I wanted to see the fruit farm worker win better working conditions in California. So it was in keeping with the tradition that I had in my genes, which was nurtured through my early years, to get involved in disability rights.
I studied rehabilitation. I worked for the New York City mayor’s office to help begin summer employment programs so that youth with disabilities could get real work experiences. I helped to bring disability awareness programs to schools in Massachusetts and delivered many disability awareness-training sessions in my daughters’ classrooms. I helped develop the first program in that state to prevent institutionalization and provide supports for people with severe disabilities to move back into the community once hospitalized, or in a nursing facility. I led community-organizing efforts that brought the disability community together to force Massachusetts to make drug and alcohol prevention, treatment and recovery programs accessible to people with any disability. I became a plaintiff in the first case to test whether the Americans with Disabilities Act provides equal access for people with disabilities to website commerce. I also contested discrimination that I was subjected to by the Office for Children in Massachusetts, which would not license me to be a day-care-assistant in my wife’s home-based day care business. They felt that it was fine for me to supervise my own three children (even at times six or more when they had friends over), but according to the authorizing office, a blind person was incapable of safely managing children.
In 1996 I took some of my experience in the disability rights community and applied it here to the region’s Jewish community. I formed a group of volunteers who worked with the Jewish Federation and some private sponsors to put on a conference we titled “Living Holy and Wholly: Equal Access to Jewish Education, Worship and Community Life. We had over 100 people attend and begin to examine our feelings and practices about inclusion and access. I’d like to think our early pioneering efforts led to greater awareness and influenced positive change that is still taking shape today toward greater inclusiveness.
We have a great deal of work still to be done, but through the work of international groups like the Ruterman Family Foundation, I am encouraged that a better understanding of full inclusion is emerging, be it through the outside world (with people wondering “what is disability insurance benefits?” and on other matters) or inside the Jewish scope. I always say that I am a such and such who happens to be blind. I do not define myself as a blind person no matter how underlying a part my blindness may play in whatever I’m doing.
I’m a husband, a father, a worker, a lover of music, someone who travels, reads and learns. I yearn for the day when we can all define ourselves by our roles in life and our abilities and not by stereotypes and disabilities. When that day comes, well before the Moshiach, I will use my IPhone to summon my self-driving car and it will tell me I am talking to you about the beautiful sunset we are both experiencing.