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

My name is Matan Koch. I am White, and as such belong to a racial group which had effectively, if temporarily, conquered the world by the early 20th century. In pursuit of Empire, the European powers traversed the world, concurring, exploiting and enslaving. Nearly ¾ of a century after World War II signified the beginning of the end of the colonial era, whole regions of the Globe are defining themselves in terms of how well they have managed to recapture their own culture and self-rule after European dominance. In my own country, my race holds a slim majority in population but a vast majority in opportunity and economic power. Our other races, one with a not too distant history of enslavement, all with a still unfolding history of discrimination and exploitation, still experience an incredible deficit of opportunity in terms of education and economic resources. This is in addition to outright discrimination, legal until 50 years ago, and prevalent today. My paternal grandfather, a White man, had a college degree, and worked for most of his life in White-collar careers, from business ownership to teaching. My paternal grandmother, a white woman to whom he was married from when they were each in their early 20s to his death at the age of 83, also took college courses, and worked professionally in careers ranging from music education to high school and collegiate audiovisual. My maternal grandfather was also white and also had a college degree and worked as an accountant for his entire professional life. I know less about my maternal grandmother, but she was white and, though, to the best of my knowledge, she had no education past high school, did secretarial work in office settings. They too were married from their 20s to her death in her 80s. My mother has a bachelor’s degree and graduate education, and worked for 35 years as a Jewish education professional, both teaching and running large religious schools. My father has a bachelor’s degree, a master’s degree, and a five-year professional degree, and has spent the last 35 years working as a congregational rabbi. Both of them had fairly stable home lives. So did I, and I grew up knowing that I was going to go to college, exposed to philosophy, literature, and art in the home where I grew up, while simultaneously learning everything from cultured grammar and diction to basic math and science.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Any post that combines a reference to Star Wars with a reference to the Beatles is probably trying too hard, which is ironic since my goal is to write about refocusing my sights more realistically. A friend shared an article on Facebook the other day about a Yale graduate who has found success on a children’s television show. I will not link the article here, because it is not particularly germane, but something that he said stuck with me. He said that he nearly declined the role because, though unemployed, as a classically trained Shakespearean actor, and a Yale graduate no less, it seemed insufficiently serious. Rightly or not, this got me to thinking about my own life, and how I am finding new opportunities for change by looking a little smaller.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Judaism and Disability 4 of 4: Halachic Living with a Disability

From roughly spring of 2001 until roughly the spring of 2002, I researched and wrote as part of my baccalaureate degree at Yale University a paper entitled Judaism and Disability. It was quintessentially a work of undergraduate scholarship, building heavily on the work of Judith Abrams, the Journal of Halacha and Contemporary Society, and what few other scholarly articles were available on the topic at the time. In the years that followed, I have spoken numerous times on the subject, usually to synagogue audiences, tailored to give them an ethical and halachic framework on which to make disability related decisions as Jews and Jewish organizations. The more times that I have given the talk, the more I have come to realize that, while scholarly treatments of this subject exist, there is a dearth of any type of written material explaining the sources and the perspectives and the practical points of view to the interested Jewish layman. These four posts are the key points in that work, largely unmodified from my undergraduate submission: Modern note: when I originally wrote this it was heavily footnoted to the various rabbinic and halachic sources from which I gleaned the rules. I was unable to reproduce those footnotes for the blog, but please write me if you are looking for sources, and remember that none of these answers are mine.

We will now move on to a discussion about those rulings that specifically relate to people with orthopedic disabilities. The most significant set deal with the prohibitions resulting from the Sabbath. The most general rulings are perhaps those to do with movement. A person who cannot walk without assistance may use a walker, wheelchair or crutches in a public domain because these are considered body parts for the person as long as the person cannot walk without them. Braces are considered articles of clothing and are permitted. Artificial limbs are considered parts of the body. Unfortunately, electric wheelchairs are prohibited for public use because even if they are activated by a non-Jew the perception may be that the Jew in the wheelchair activated it. Interestingly, as of 1991 Israeli engineers were attempting to create a switch that would make power chair use permissible. This does tend to make one wonder how a wheelchair user who is not able to self propel a manual chair is supposed to lead that as meaningful as possible Jewish life. One loophole offered now, which will be more fully explored in the section relating to carrying on Shabbat, is that a non-Jew may be asked to push a wheelchair if the disabled person has significant distress at not going to synagogue. I ask the reader to make note of the sensitivity to mental anguish as it will figure prominently in later discussion.

The wheelchair as a body part enjoys an unusual position in Jewish law. A person in a wheelchair may carry a talit in the back pouch of the wheelchair because the pouch is considered a subsidiary to the wheelchair, and the wheelchair does not know better. In this unusual ruling, the wheelchair is in some ways given its own volition, as the comparison made is that of a small child carrying a rock. As we shall see in our in-depth discussion of the Shabbat laws, such legal fictions are no stranger to Jewish legal reasoning. Other wheelchair rulings are more readily apparent. A wheelchair user, or anyone who cannot stand, may say the Amidah, customarily said standing, from his or her chair. A chair user may also sit shiva from a wheelchair instead of a stool.

Not all rulings are this permissive, however. Driving to synagogue on Shabbat is prohibited even if there is no other option. Also, on Shabbat, a disabled person may not use an elevator or an automatic door unless taking advantage of the usage of such by a non-Jew. While at first glance, this may seem harsh, insensitive, and unfair, it is important to look at these rulings within the context of the rulings that we have already seen and the tradition from which they come. Simply put, Jewish tradition is legalistic tradition. Jewish laws are law, not to be trifled with for convenience. We have seen over and over again that modern halachic authorities want to accommodate people with disabilities. In the prior paragraph, we have even observed the creation of the convenient legal fiction to allow the carrying of talit for chair users on Shabbat. It would seem likely therefore that these prohibitions are simply things that the Rabbinic authorities could not legally circumvent or accommodate. Some might argue that the law is not perfect, others would argue that the law is perfect but we don’t understand it yet.

An interesting last piece that I feel should be tacked on to our discussion of orthopedic disabilities is a small section where Rabbis have actually a modified ritual because of understanding the specific circumstances of a disability. First, they have ruled that we have the ruling that, a right handed man should don tefillin on the left arm even if it is atrophied or paralyzed, if the arm is missing the person should don tefillin on the right arm. Then, we have the other seemingly isolated ruling that a disabled person should say the bathroom blessings after first covering catheters or collestomy bags. Intrinsically, these rulings are sufficiently obscure that they are outside of the scope of this paper. Yet, the fact that Rabbinic thought and effort were put into these specific rulings, and they were in fact published, reinforces the message that Judaism wishes to allow all Jews to make their lives as Jewish is possible, though their disability may appear to stand in the way.

GUIDELINES FOR THE DEAF

The first rulings in the guidelines for the deaf are very similar to the first ruling in those for people with orthopedic disabilities. That being because they relate to what in the disability field would be considered adaptive equipment. A hearing impaired person may wear a hearing aide because it is considered an article of clothing but may not adjust the volume. One may not carry it in one’s pocket. A spare battery could be designed as an article of clothing. A microphone may be used to help a hearing impaired person hear the torah on weekdays but a microphone may never be used on yom tov or the Sabbath. I think that the reasons for these were fairly well explained in the last section. The next few rulings are what we would call reasonable accommodations, changes to an activity such that a person with disabilities can still do it, but that retain a sufficient resemblance to the original activity. Deaf people may fulfill the mitzvahs of hearing torah and meggillah by reading them to themselves. Also, deaf people may dispense with the reading of the marriage contract or may use sign language.

Strangely enough, after this spate of permissive rulings, the Rosner and Tendler article gives a very terse statement that a deaf mute is exempt from all the commandments. The first thought that comes to mind on that is the Talmudic ruling to that effect, the possible explanations for which are discussed earlier in the paper. In examining the applicability of this ruling to today, it is beneficial to examine a quote by Rabbi J. David Bleich from his book Contemporary Halakhic Problems, Volume 2. On the source sheet from the Orthodox Caucus, it quotes the following from page 375 of his book. In light of the degree of education attained even by true deaf mutes in contemporary society, it is doubtful that they are considered examples of heresh described in rabbinic references. Hence they should be encouraged to, and indeed required to participate fully in Jewish religious life, including performance of all ritual obligations as well as in Torah study. By this light, the previous ruling, while correct in everything that it said was to be applied to a category of people that existed in rabbinic times and does not exist now. The Rabbinic cheresh was unreachable, today’s deaf mute is not. As society is now able to move away from blanket exclusion of the deaf, so is Judaism.

GUIDELINES FOR THE BLIND The first ruling that we will discuss for blind people relates to Shabbat and illustrates the particular tension generated by a disability for which most modern accommodations are technological. That ruling is that a blind person may not listen to tape or radio on the Sabbath. This is immediately followed with the qualification that visiting that person to provide them with stimulation is a specially meritorious mitzvah. Again, I think this is emblematic of the tension between the highly legalistic religion and a strong desire to provide compassion.

The next set of rulings that we will discuss have to do with a blind person’s personal obligations. I will list them first, for I feel that the prevailing theme will be self-evident. A blind person is required to say the blessings over the new moon. It is preferable for others to say the Channukah menorah blessing for them. A family member should perform the search for chametz before Passover. Further, a blind person must light Sabbath candles if there is no danger to the person or anyone else. This says that you do not have to see something, be it the new moon or the Shabbat candles in order to appreciate and bless them. Yet, you are free from those mitzvot that you could not possibly perform, while still being valued enough to merit their performance on your behalf.

Now we will move in to the reasonable accommodation phase of the laws for people with visual impairments. Firstly, a blind person may have contact with his wife before she goes to the mikveh if it is for her to provide him assistance. Also a blind person may be accompanied by his or her guide dog into a synagogue. These rulings indicate to us that certain taboos, especially those relating to ritual purity can be waived in order to allow for a accommodation of disability. By allowing the assistance to trump the restrictions, one labels them a mitzvah, as these are the only kind of actions that can at times transcend prohibitions. One accommodation offered is that blind people may pray from memory. They are not, however, exempted from any of the carrying restrictions in order to carry large print or special edition (Braille or other) books. At first glance, this may seem an unjust prohibition. Yet, it is quite easy to acquire copies of such books for a synagogue, assuming that the person can use them. Clearly, if they cannot, it presents the reason for the lifting of the prohibition on memorization. If they can, why do they need any more freedom than any other Jew? It would seem that here Judaism walks the fine line between a reasonable accommodation and special treatment. It also seems that they do so quite well.

The last two rulings relate to partially sighted people. Simply, a partially sighted person may read Torah and lead prayer, and a partially sighted person may serve as a legal witness. Both of these rulings affirmed that Jewish citizenship is based upon capacity and not some mistaken idea of the ideal.

The Shabbat Laws I already mentioned in the introduction to this section the compelling reasons for an in-depth discussion of the Shabbat laws. I will not reiterate that now, but stop only to remind the reader that we will start with a discussion of medical treatment, move to a discussion of technology on Shabbat, and finish with a discussion of the laws of carrying people.

MEDICAL TREATMENT Jewish law contains within it an imperative to heal. Life is a precious gift from God, as is the ability to save life. A doctor that does not practice his art is likened to a murderer. Yet, refuah, healing was not permitted on the Sabbath. The original prohibition against healing on Shabbat was in case herbs should be ground to make medicine. Grinding is prohibited on Shabbat. This ruling has been much debated in modern times, when people do not grind their own medicine, nor do doctors prepare medicine on the spot. The prevailing idea is not for abolishment, since in some places people do still prepare their own medicine, but rather that this fact should engender leniency. Leniency aside this remains the main concern to this day. There is, however, one other significant concern. Most of modern medicine requires the use of electronic equipment. While specific discussion of these laws will be held until further section, suffice it to say that this is customarily prohibited on Shabbat. The values used to address these prohibitions are extremely germane to our discussion. Not only is medical treatment itself a prime issue for disability, but the issues of suffering, anguish, and pain are also applicable.

The priorities of violation and healing on Shabbat are pretty straightforward. All Shabbat and most ritual prohibitions can be waived in the preservation of life, pikuach nefesh. Still, medical treatment should be done in the least transgressive way possible. For instance, it is permissible to control diabetes with insulin on Shabbat, but only if dietary control is not a viable alternative. For even serious illness, any prohibitions can be waived to provide the treatment needed. For general illness, wherein one is infectious, in great pain, or bedridden, but a threat to life is not present, one may perform rabbinically prohibited activities shinui or instruct a non-Jew to perform even a biblically prohibited task. Rabbi Moshe Feinstein considers impairment of function due to medical condition to be the same as being bedridden.

An act done shinui or kilachar yad, as with the other hand or different, constitutes a kind of rabbinic prohibition that can be violated to alleviate pain or to prevent great financial loss. Usually, performing an act shinui should be somewhat more difficult or complicated than performing the act in a standard fashion. An example might be kicking an automatic touch plate rather than pressing the button or tearing something with a full body movement rather than by jerking your hand. Rabbinic prohibitions are actions that the Bible does not prohibit, but for reasons such as a similarity to a biblically prohibited act or the potential to lead to a biblically prohibited act. These prohibitions are still binding, but it will become clear as we move through various halachic rulings that they are not given the same weight as biblical prohibitions.

Wherein there is risk to a specific body part, one may do tasks which are rabbinically prohibited without doing them shinui. If there is thought that this may become life-threatening, then one may do even biblically prohibited tasks. With illness in a specific body part, but no great pain and no threat, one may only do rabbinically prohibited tasks through a non Jew.

So far, these rules seem eminently pragmatic. Danger is identified, indexed, and treated. Interestingly, however, Jewish law seems to have made the jump to understanding the significance of psychology in ways the medical profession has yet to go. Prohibitions against various activities can be bent, especially rabbinic ones, if something needs to be done to treat mental anguish related to medical condition, even if the doctor thinks such measures are unnecessary. Many rabbis will permit rabbinic transgressions even when the anguish is not directly related to the malady at hand. A truly startling expression of this is in the fact that one is allowed to light a light for woman in labor to ease her mind. This is clearly done to relieve psychological anguish, as it can even be done for a blind woman.

The medical ethics of Shabbat are therefore quite straightforward. Most interesting for this analysis is not the varying categories of illnesses, but rather, the clever methods for circumventing prohibition and, most importantly, the recognition of psychological anguish as sufficient grounds for the violation of a rabbinic prohibition, certainly as matched with other legalisms.

ELECTRONIC DEVICES

Continuing on, we move to a discussion that at first glance has very little relevance to our topic, except perhaps with regard to elevators and other adaptive equipment. Indeed, later in this section we will discuss elevators at length. This lengthier discussion of electronics, taken mostly from one article, is not meant to be exhaustive. Rather, it is to examine the lengths to which modern rabbis will go to allow Jews to enjoy the conveniences of modern technology on the Sabbath so that the reader will be better able to appreciate that the extensive lengths gone to in order to justify carrying people with disabilities that we will see later can be better understood. For instance, we know that kilachar yad can be used to perform a rabbinically prohibited act to allow one to avoid a biblically prohibited act. What is interesting is that potential situations recommended in this technology article include unplugging a refrigerator kilachar yad so that the light will not go on when you open it. While I suppose that this could be to prevent one from starving, to me it smacks of simple convenience. This is a more lenient standard than great pain or anguish.

The overarching issue with regard to electronic devices is very simple. Completing a circuit is work such as at least one of the prohibited categories on Shabbat. Also, anything incandescent is considered to be the same as kindling fire. As a general removal of all electronic devices would represent a significant inconvenience for the modern Jew, legal loopholes have been developed, some of which we will explore now. I offer this caveat, however. As my concern is the law and not the technology, I will often outline the loophole without giving specific examples in electronics.

The first legalism offered is the following. Halachah rules that it is okay to do a permitted action on the Sabbath even if that permitted action could possibly cause a biblically prohibited action. This is called a davar she’eino mitkaven, an unintended act. The Talmud prohibits however that this idea be taken to an absurd extreme by forbidding an action that will definitely lead to a prohibited action. There is some question as to whether or not this only applies to secondary consequences beneficial to the doer of the original action. If the benefit of the secondary action is not to the doer and is therefore clearly unintentional, it is a rabbinic prohibition. A poor example of this might include passing through an elevator door and triggering its sensor not at a time when it is pointless, but rather just as the timer was about to run out, thus keeping it open unintentionally. As an interesting addition to this, it seems that in Jewish law, ignorance is a defense, as it were. An unintentional act is permitted. Therefore, a secondary prohibited act of a permitted act is not prohibited if the doer of the primary act was unaware that the prohibited secondary act would occur.

Another category of leniency in prohibition of labor on Shabbat is one where the benefit derived is not the purpose of the action with regard to the mishkan, called malacha she’eino tzericha legufa, a hole dug for the dirt if you will, rather than the whole. The mishkan was the sight of ancient Jewish worship and is often translated Tabernacle. One example of work where the purpose differed would be turning off lights to gain darkness, since the extinguishing of flame in the mishkan was to gain the black ash. This class of prohibition could only be violated to serve the public safety, not to prevent significant financial loss as in the case of other rabbinic prohibitions. It is quite possible, however, that again significant pain or mental anguish would allow this class as well.

The final class of prohibitions discussed in this article was a grama. A grama is an indirectly caused action. This is rabbinically prohibited except in cases of potential great financial loss or likely comparable moment. An example given is that of putting barrels of water in front of a fire so that they will burn, explode, and extinguish the fire. A common example of this is a thermostat operated appliance, permissible on Shabbat. Latent circuit devices use this principle to be permitted, such as a grama telephone, because rather than completing a circuit one simply removes the impediment to a circuit. This category is particularly significant to our discussion because the wheelchair in development discussed earlier in the paper runs on the grama principle. The chair would have a latent current running at all times.

Now, we will discuss the adaptive technology that is perhaps the most ubiquitous and one of the most useful for people with mobility impairments, heart problems, and numerous other issues, the elevator. I cannot critique the halachah of elevators because each of the rabbis quoted has a greater understanding of the engineering than I. Rather, I will reproduce it here. The halachah of elevators is complicated, and the debate seems to rage over several issues. Rabbi Yitzchak Weisz forbids riding in even an automatic elevator because the presence of even an extra passenger causes the motor to draw more current. Rabbi Yaakov Breisch rules that just as the Talmud prohibits one from being transported in a chair carried by others and this teaches not to ride in a trolley or on a subway, so it teaches not to ride in elevator, as he feels there is no distinction between vertical and horizontal travel. Rabbi Yosef Henkin and Rabbi Yehuda Unterman rule that since the elevator and not the person is doing the work, an automatic elevator is okay. Rabbi Breisch’s ruling does not appear to have any normative authority. After this, things get even more complicated. Rabbi Halperin rules that one may ride in an ascending but not descending elevator, as an ascending elevator causes the motor to draw more current, which he feels is halachically permissible. The descending elevator has two problems. One, a standard descending elevator uses the weight of its passengers to descend, and the halachah rules that one is responsible for actions caused by one’s weight trade. Two, a descending elevator generates current that is fed back into the buildings power grid. Rabbi Halperin is working on a special elevator without this problem. It should be noted, however, that the question of weight responsibility is disputed, and most authorities will allow the riding in an automatic elevator.

Moving away from these technicalities, we come to rulings most specifically relevant to people with disabilities. This is a group for whom the elevator is the only option, a group who needs to find out how to use it. One is permitted, according to some rabbinic authorities, to ride in an elevator operated by a Gentile provided that that Gentile was not operating the elevator on the Jew’s behalf. People with disabilities, however, have an even better option. For an even mildly sick person, or to facilitate performance a mitzvah, one may ask a Gentile to operate the elevator.

CARRYING Carrying is one of the thirty-nine categories of work biblically prohibited on Shabbat. It is important to note that pushing a wheelchair is considered carrying. The various loopholes that may allow this are what we will explore here. One may carry a human being who is potentially able to carry themselves even if they’re not doing so at this time, and be subject to only a rabbinnic prohibition. The minimal qualification to say that one is able to carry one’s self (chai nosei et atzmo) is that one can walk with help. If one is too sick to walk, is tied up, or is never able to walk, then they’re no longer considered chai nosei et atzmo.

By now, the reader should be aware that when a rabbi reduces something to a rabbinic prohibition, he is looking for a way to make the activity permissible. For carrying, they create a special rationale above and beyond what is normally necessary to violate rabbinic prohibition. In order to violate the rabbinnic prohibition one must do so shvut d’shvut, in essence create a situation where one is doing a rabbinnic prohibition through a method which would itself change a biblical prohibition into a rabbinnic prohibition. In essence, this can only be done in time of urgent need. This can include great pain, including emotional pain, potential great financial loss, and desire to fulfill a mitzvah, such as visiting the sick or going to services.

The next question is how to create this situation of a double rabbinic prohibition, understanding that the carrying chai nosei et atzmo is the first rabbinic prohibition. Possible methods include telling a Gentile to do the carrying, pachot pachot me’dalet amot, or shenayim she’osu. Pachot pachot me’dalet amot is the process of circumventing the limitation of carrying no more than 4 amot into public domain. The method, rabbinically prohibited, is to carry the person or object in stages of three amot. In order to get between a public and private domain one would stop in the middle of the transition point and start again which is never in fact carrying the whole person from the two domains. These methods, combined with chai nosei et atzmo, constitute a shvut d’shvut. When two people perform an act which could clearly be performed by one person is called shenayim she’osu, and this takes any biblically prohibited act and changes are to a rabbinic prohibition.

Clearly, our most pressing interest is how this can be applied to people with disabilities. In addition to questions such as carrying into a house for an oneg, shvut d’shvut can be used to push someone in a manual wheelchair for the reasons listed above. Remember that a wheelchair user is not chai nosei et atzmo, and therefore one must create the shvut d’shvut in its entirety. Some examples might be to have a Gentile pushing the wheelchair pachot pachot me’dalet amot, or for Jews to push the chair shenayim she’osu and pachot pachot me’dalet amot.

There is one more extremely ambiguous case, the Carmelit. A Carmelit is a rabbinically designated public space such as a “bungalow colony, an open field, a village street, or a body of water.” Originally, such spaces did not qualify as public areas, but they were a gray area that could easily lead to or have been mistaken for a public area. Furthermore, they weren’t private domains and needed some classification. Some consider that carrying one who is chai nosei et atzmo in a Carmelit is permitted because it is gezeira l’gezeira, a double precaution. Double precautionary measures automatically cancel each other out, with more finality than a shvut d’shvut. Others do not consider a Carmelit gezeira, though even they recognize this as an automatic shvut d’shvut.

The overriding idea is that rabbis’ go to incredible lengths to attempt to make the pushing of wheelchairs permissible. The only real place worth expressing any discontent with their attempts is that they do not see the extent of the potential mental anguish that exclusion would create. I am willing to argue that the psychological need for inclusion rates at least as high as the significant pain medical prohibition. Thus, I feel that pushing a wheelchair should not be a shvut d’shvut question, but rather one of creating only one rabbinic prohibition. This may seem unimportant and legalistic to some, but in practicality it has to things going for it. One, it recognizes the sheer weight that the psyche places on inclusion. Number two, it allows Jews to push the chair pachot pachot me’dalet amot, shinui, or in a Carmelit. To close this portion of the discussion, it is important to note that an eruv trumps these questions for a manual chair.

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Judaism and Disability 3 of 4: Halachic Treatment of People With Disabilities

From roughly spring of 2001 until roughly the spring of 2002, I researched and wrote as part of my baccalaureate degree at Yale University a paper entitled Judaism and Disability. It was quintessentially a work of undergraduate scholarship, building heavily on the work of Judith Abrams, the Journal of Halacha and Contemporary Society, and what few other scholarly articles were available on the topic at the time. In the years that followed, I have spoken numerous times on the subject, usually to synagogue audiences, tailored to give them an ethical and halachic framework on which to make disability related decisions as Jews and Jewish organizations. The more times that I have given the talk, the more I have come to realize that, while scholarly treatments of this subject exist, there is a dearth of any type of written material explaining the sources and the perspectives and the practical points of view to the interested Jewish layman. These four posts are the key points in that work, largely unmodified from my undergraduate submission: The single most overriding ethical imperative to all Jews, ubiquitous within my sources, is that society should not treat people with disabilities as anything other than equal. It is a Jewish obligation for individuals, family and society to help people with disabilities lead as full and productive a life as possible. Perhaps nowhere is this more quickly forgotten, and nowhere does it need to be more quickly remembered than in the case of people with intellectual disabilities. In a sources sheet put out by the Orthodox Caucus, an Orthodox Jewish ethics organization, there’s a quote from the rabbi Aharon Soloveitchik from his look, Jewish Education: The Fire of Sinai that sums this up very well. He says the following. The Sheeino yodeia lishol, the retarded child cannot be neglected. Even though this child appears unable to talk and is apparently without intelligence, we are not to assume that the so-called retarded child has no potential. With proper patience, love and perseverance, one is apt to open the mouth of the sheeino yodeia lishol... Every child has to be approached individually. To the extent that the child is limited, the child’s maximum potential is to be reinforced and galvanized. This, of course, will require consuming, persevering dedication and labor, but those who devote themselves to this endeavor will certainly reap results and will succeed in becoming partners with God by infusing life and joy into the stagnant existence of retarded children. There is no nobler cause than dedication to the ushering of joy and meaning into the lives of retarded children, as the Rambam says at the end of Hilkhot Megillah (2:17): “For one who gladdens the heart of the unfortunate is similar to the Shekhinah, as it says “To revive the spirit of the lowly and to revive the heart of the contrite” [Isaiah 57:15]. This is a potent argument, not just against the shunting of the intellectually disabled to the side, as is so often done in our society, but actively including them to whatever level they can be. It affirms their basic humanity, and makes a firmly founded Jewish obligation out of attempting to educate them to the fullest extent of their potential. This rabbinic authority assumes that potential.

One might immediately counter with the argument that this is an innovation in Judaism, that the Rabbis very definitely had a category of shoteh, the imbecile discussed earlier, and that this person, while protected, was excluded. Modern authorities have an answer to that question as well. Rabbi Eliezer Waldenberg, quoted from his book, Tzitz Eliezer 14:69, on a discussion guide put out by the Orthodox Caucus, has the following to contribute. It is clear that even those who are most mentally disabled, whose intellect is underdeveloped, and do not comprehend things as other people do, do not fall under the category of a shoteh (imbecile); they are only disqualified from being witnesses in a court of law, as they sometimes cannot recognize contradictory statements... but they are certainly subject to the mitzvot, even capable of Gittin and Kiddushin (marriage and divorce) if they can understand these things when they are properly explained to them. ... Therefore an adult with the IQ of a 7-10 year old should be taken out of a non-kosher institution, and placed where she will not be exposed to forbidden things, and this is the responsibility of the community and its leadership, that is, the Kehillah (the organized Jewish community) of the city. Here, again, is an even stronger trumpet note of inclusion. Furthermore, the idea of shoteh is limited to the unresponsive.

There are many other responsibilities that the community and individuals face with regard to people with disabilities. When possible the community and family must work to their utmost to help people with disabilities avoid institutional care. This is clearly a quality of life issue, as the sources seem plainly aware that institutionalization is known to reduce quality and length of life. Further, Judaism does not expect that the family will bear this often unbearable burden of cost and logistics alone. According to Rabbi Moshe Sofer, care for the physically and intellectualy disabled among the community is the responsibility of the whole community. They are classified with the poor as financially and physically sustained by society. This burden relates as well to accessible Jewish facilities.

A specific subset of these facilities that is particularly important are the educational facilities. Where possible, any supports necessary for disabled people to pray and be educated with the community should be purchased or hired, up to and including private teaching for those students unable to attend school. Lest anyone think that this is merely modern sensibilities intruding upon Jewish values, let us take a moment to look back at the Babylonian Talmud. The following story comes from Eruvin 54b. Rabbi Preida had a student to whom he had to repeat each lesson four hundred times before he understood it. One day R. Preida was required to leave and attend a certain matter involving a mitzvah. Before leaving, he taught the student as usual four hundred times but he still did not grasp the concept. R. Preida asked him “why is today different?” He answered him “From the very moment that they told my master that there is a mitzvah matter that he must attend to, my attention was diverted, because every moment I thought that now the master will get up and leave, now the master will get up and leave.” R. Preida said to him “Pay attention, and I will teach you.” He taught him another four hundred times. Clearly, the student had a learning disability and yet this Rabbi set forth in action the ideals that the modern Rabbis relate in modern terms.

It is clear that the Rabbis applied this concern to all elements of human life including purity issues such as are involved in reproduction. The sources make it clear that it is especially important that mikvehs be made accessible. When necessary to provide help, a husband may accompany a women and a blind woman should have help with the bedikah (examination) cloth. Not only is the disabled person the responsibility of society in supplying these opportunities, but society must help to support them even so far as taking care of children that they produce but are unable to care for. Abortion must be avoided even if it means other Jews must step up, adopt and care for the child.

A proper summation of this section is pretty easy to make. Very simply, Jews are responsible to do whatever they can to make sure that the conditions of their fellow Jews disable them as possible. People with disabilities are to be taught whatever they can learn, given the best quality of life available, and allowed to grow to their full potential. To today’s listener, these may have the ring of truisms. Yet, these ethical imperatives were revolutionary to American society little more than three decades ago, and have not yet achieved their full realization. Interestingly, they grow seamlessly and in an easily foreseeable fashion from a tradition spanning thousands of years.

Specific Imperatives for Persons with Disabilities

A disability often comes with special implications for the life of the person with disabilities. Jewish law has adapted and evolved as a result of these special needs and has created specific rulings for the practice of people with specific disabilities. In this section we will discuss several different kinds of rulings. First, we will look at rulings germane to a wide range of people with different disabilities. Next, we will look at rulings most applicable in questions of orthopedic disabilities. This will be followed with a discussion of guidelines specifically for the deaf and hard of hearing, and finally, with a discussion of rulings for blind or partially sighted people. These could be the cheresh and the iver of the Rabbinic rulings.

GENERAL RULINGS

Most of the next few sections will be peppered with specific rulings relating people with disabilities to different halachic imperatives. It is an interesting overall statement, therefore, that Jewish law does not hold responsible people unable to fulfill commandments because of disability and specifically frees them from guilt. According to Rabbi Moshe Tendler and Dr. Fred Rosner, this affirms “that the basic worth and spirituality of the disabled is not diminished in any way.” This does not imply a freedom from halachah, merely a freedom from the guilt that may be associated with being unable to achieve the impossible. According to Rosner and Tendler, halachah “urges them to achieve their fullest potential as Jews, while exhorting society to assist them in making their religious observance possible.” This means that in general, a person with a disability should fulfill all of the commandments as best as they are able.

We are taught that disabled people should have a bar mitzvah and do as much as they are able, if they cannot get to synagogue the miynan should be brought to their house. Also, a disabled person, if not intellectualy disabled, is part of a minyan and, a disabled person may testify as a witness in a legal proceeding. The overarching statement implied from these individual rulings is both simple and profound. In essence, to whatever degree they are able, people with disabilities are allowed to demonstrate their acceptance of the responsibilities of adulthood. Furthermore, more than a demonstration, they are allowed, as long as they have the ability to participate as a full adult with all rights and privileges in Jewish civil and spiritual society. I personally think that this melds directly with the Talmudic ruling that a person with a disability can serve as a shaliach tzibor, a prayer leader, as long as that disability is not distracting to the congregation. This, of course, must be understood with the caveat that not disrupting the community’s ability to concentrate on prayer is a qualification for the job of shaliach tzibor.

Perhaps the most astounding statement of inherent equality and value for persons with disabilities as living, contributing members of the community is the following quote from Rosner and Tendler. “A disabled person has the same rights, privileges [sic] and obligations applicable to all Jews regarding ritual family purity, marriage, and procreation.” This quote is followed by the following further statements on Jews with disabilities and procreation. Unless a disabled person is unable to care for a child, he or she is obligated to procreate. Relatedly, birth control or sterilization in the case of mental retardation is not condoned unless experts agree it is absolutely necessary.

This warrants some discussion. Why would anyone even bring this up? Unfortunately, less than 30 years ago, there were still states in this country that mandated sterilization for people with certain kinds of intellectual disabilities. Jewish law rejects this “eugenics” for the heinous crime that it is. So why mention birth control at all. People with certain disabilities cannot produce viable offspring. In allowing the consideration of birth control for these people, Judaism is acknowledging that which so many religions shy away from but of which it has never been afraid. Sexual relations are healthy part of life for its own sake. If it is unjust to have a person with disabilities procreate, but they are able to engage in marriage and sexual relations, he or she should do so in whatever way is possible. Similarly, a disability is not considered grounds not to have children. Raising children is a mitzvah and many people with disabilities who cannot procreate can still give love and support and give some child a good upbringing and a meaningful life. Thus Jewish scholars say that, if a disabled couple cannot have children they are encouraged to adopt. I think that this is the greatest statement of worth and value that a tradition can give to a population. Not only are they expected and encouraged to contribute offspring, one of the most sacred of the Jewish and obligations, their value as people is so far recognized that they are encouraged to raise children even if they cannot create them. How different in timber this is from the society in which we live that still tries to take the children of disabled mothers.

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Judaism and Disability 2 of 4: Ancient Words, Modern Sensibilities: Disability and the Talmud

From roughly spring of 2001 until roughly the spring of 2002, I researched and wrote as part of my baccalaureate degree at Yale University a paper entitled Judaism and Disability. It was quintessentially a work of undergraduate scholarship, building heavily on the work of Judith Abrams, the Journal of Halacha and Contemporary Society, and what few other scholarly articles were available on the topic at the time. In the years that followed, I have spoken numerous times on the subject, usually to synagogue audiences, tailored to give them an ethical and halachic framework on which to make disability related decisions as Jews and Jewish organizations. The more times that I have given the talk, the more I have come to realize that, while scholarly treatments of this subject exist, there is a dearth of any type of written material explaining the sources and the perspectives and the practical points of view to the interested Jewish layman. These four posts are the key points in that work, largely unmodified from my undergraduate submission: The rabbis in their texts, the Mishnah, the Tosefta, and both Talmuds, the Bavli and the Yerushalmi, gave shape to Judaism, framing this discussion and many others. Before proceeding, I again feel the need to give credit where credit is due. I have neither the knowledge of Rabbinic texts, nor the familiarity with them, to have located the forthcoming citations on my own. While the blog format required the removal of footnotes and bibliography, I am in debt almost entirely to secondary authors. I am happy to provide footnoted text with bibliography upon request.

Except for the broad umbrella of overall themes found within the Mishnah, I have failed to come up with a true ordering scheme for the passages cited. As such, save for a little bit of thematic breakdown, this section follows roughly the order of the Mishnah. Talmud and Tosefta will be ordered with the Mishnah in such way as they best explain the Mishnah, as some would argue was their original intent. After that will come independent bits of Talmud.

RIGHTS AND RESPONSIBILITIES

The core of any legal system are the rights and responsibilities of those within the system, and the Jewish system is no exception. Since this is the core concern, the Talmudic discussions impacting the rights and responsibilities of Jews with disabilities give us a clear insight as to an overall Jewish approach to disability. Numerous mishnayot and Talmudic passages provide insight on this point. Let us consider the following passage from Mishnah tractate Terumot. There are five that may not give the heave offering, and if they do so their heave offering is not valid: a deaf mute, an imbecile, a minor, he that gives heave offering from what is not his own; and a Gentile who gives heave offering from what belongs to an Israelite -- even if it was with his consent his heave offering is not valid. He that is not dumb but [only] deaf may not give heave offering, but if he does so his heave offering is valid. The cheresh of which the sages have spoken is always one that is both deaf and dumb. If a minor has not yet produced two hairs, Rabbi Judah says: his heave offering is valid. Rabbi Jose says: if [he gave heave offering] before he reached an age when his vows are valid, his heave offering is not valid. (Terumot 1:1-3)

This raises an interesting question. Are the deaf mute and the imbecile unable to make valid vows? If so, why? Is it an implication of their then believed lack of cognition, or is it something else? Some light is shed by the second sentence. A verbal deaf man, as opposed to one who is mute, is not obligated, but should he make an offering, it is valid. It is possible that this distinction, which in the Mishnaic times was the distinction pre and post lingual hearing loss, reflects that culture’s inability to teach the deaf. Simply put, it was not fair to obligate those who could not be taught, yet, if one demonstrated knowledge, it was not invalid.

The Tosefta contradicts the logic of the Mishnah that one who is both deaf and mute cannot give valid heave offering. In Tosefta Terumot 1:1 we read the following. Rabbi Judah says, “a deaf mute who separated heave offering -- that which he has separated is valid heave offering” said Rabbi Judah, M’SH B: the sons of Rabbi Yohanan ben Gudgada were deaf mutes, and in Jerusalem all of the foods requiring preparation in purity were prepared under their supervision.” They said to him, “is that proof [that a deaf mute may separate heave offerings]? For foods requiring preparation in purity do not require [preparation with] intention and [therefore] may be prepared under the supervision of a deaf mute, imbecile, or minor. [But] heave offering and tithes require [separation with] intention [and therefore may not be separated by such individuals).” Rabbi Isaac says in the name of Rabbi Eleazar, “that which has been separated as heave offering by a deaf mute does not enter the status of unconsecrated food [even though it is not valid heave offering] because it is a matter of doubt whether or not he has understanding. A first read at this passage might bring a modern disability rights activist into a state of outrage. I encourage the reader to abandon for a moment the modern world view where a quality and inclusion have acquired normative significance, and our ability to communicate with and engage the cognition of people whose disabilities render them nonverbal has reached unprecedented heights. Consider instead that within the understandings of the culture from which these rulings come, this is in fact a very inclusion centered decision. Before standardized systems of sign language, before Helen Keller, and before modern science, rabbis had no way of knowing whether one who could not communicate could learn or think. They did not know whether the root cause of the inability to speak was physical or cognitive, or even that such categories existed. This middle road was as fair as they could be, given that issues of intent were central to their worldview. Simply put, Mitzvah performed without the requisite intent is per se invalid.

It is evident in the later description in 1:2 and 1:3, which takes as broad as possible a view of who is a deaf mute without intent, that the rabbis did not wish to exclude anyone unnecessarily. This idea finds ultimate clarity in the Yerushalmi. In Terumot 1:1 II A., it is said: “Now the deed [of a deaf mute, imbecile, or minor whose separates heave offering] should indicate that he gave [proper] thought [to separating it], so that the separation is valid, [contrary to Mishnah Terumot 1:1]”. This enjoys great facial similarity to the logic in the Bavli. In fact the same idea is operating. The beauty of the Yerushalmi is that it then proceeds to give a whole section on what proves intent, and therefore cognition, thus making a widely applicable principle. As the Yerushalmi applies intent and cognition to activities such as judging, the author Judith Abrams points out their importance in questions of community leadership. Not just intent, but decorum was a big concern for the rabbis. The common sensibilities, i.e. what will offend the populace become the litmus test on whether those such as the blind or ill-dressed can lead, lest they disrupt or distract the public intent. Without intent, and cognition, ritual becomes meaningless. Abrams mentions that this idea, which comes to its ultimate fruition in Ben Sirah and other Judaic literature, makes lack of cognition the ultimate form of valuelessness. This becomes a strong strike against all disability because of the equation of deformed body and deformed mind in this literature.

Moving on to tractate Megillah, we are confronted with another limiting passage. In Megillah 2: 4, we read, “All are eligible to read the scroll excepting one that is deaf or an imbecile or a minor.” This immediately raises the question of why the deaf person? Oftentimes, the cheresh is excluded because of a perceived intellectual deficiency. This passage separately mentions the imbecile, however. The Yerushalmi takes up this question in 2:5. In section 1:1, we read, “Said R. Mattenah, this represents the view of R. Yose [in excluding the deaf mute,] in the theory that the reader must hear what he is saying.” R. Hisda disagrees, feeling that the opinion of R. Yose applied specifically to the Shema, which begins with the statement, “Hear O Israel”. Hisda’s opinion is that since the deaf person is so often included with minors and imbeciles that there was a mistake in the recitation of the passage and deaf was not meant to be there. While one cannot discount the possibility, the fact that this combination was so common that it was an understandable possibility that it was said by mistake itself tells us something very interesting about the rabbinic conception of disability of deafness. Clearly, it immediately associated one with the margins of society.

Further of interest is the fact that the question of why occurs to the rabbis of old, and that at least one is willing to brand it a mistake. This means that thousands of years ago, the notion of excluding a deaf person simply because they were deaf was regarded as bizarre or inappropriate by the rabbis. From here, as from sources discussed later, one can infer that the default standard was the greatest inclusion possible.

Moving on through the sources in the Mishnah, tractate Megillah, chapter 4:6-7 says the following: He that is blind may recite the Shema with its benedictions and interpret. Rabbi Judah says: he that has never seen the light may not recite the Shema with its benedictions. This may relate to the benediction involving light. If a priest has blemishes in his hands, he may not raise his hands [in the Benediction of the Priests]. Rabbi Judah says: moreover one whose hands are died with woad or madder he may not lift his hands because the people would gaze on him. Immediately these passages raise questions, but the best answers are perhaps in the Talmud, and indeed, the Talmud on the subject is rich. This passage is discussed in Bavli 24b. The issue of most interest to the rabbis is why a blind man should be allowed to repeat the blessings in his heart, including praising the creator of light. First, the analogy is drawn to those Rabbinic concepts, such as the chariot of Ezekiel, which are impossible to comprehend except by insight. Furthermore, they find that the blind man can gain benefit even from those things that cannot be seen by them. It is written: Rabbi Jose said: I was long perplexed by this verse, ‘and you shall grope at noonday as the blind gropes in darkness’. Now what difference [I asked] does it make to blind man whether it is dark or light? [Nor did I find the answer] until the following incident occurred. I was once walking on a pitch black night when I saw a blind man walking in the road with a torch in his hand. I said to him, my son, why do you carry this torch? He replied: as long as I have this torch in my hand, people see me and save me from the holes and thorns and briars. (Megillah 24b) The idea here is that there is some benefit to the blind man saying the prayer for light. The question that this explanation raises is whether a blind man benefits from his own action, or that like the torch, his words allow those who hear him to grow and learn and thus to better help him. One implies inherent value in the actions of the blind man. The other makes the blind man the torch bearer, a vehicle by which others learn things that they can then use to help him.

In explaining the discolored or deformed hands, the rabbis give the following interesting answer. They include in the group anyone who would distract those who were praying, including foreign accents. They added the disclaimer that for any of these limitations, if the townspeople were accustomed and would therefore not be distracted, then the prohibition was lifted. This seems to return us to the earlier question of distracting another’s intent. Clearly, a person with whom you are familiar, no matter how visually unusual, is a person who will not distract you.

The next important passage is in Hagigah 1:1. The Mishnah says the following. All are subject to the command to appear before the Lord excepting a deaf-mute, an imbecile, a child, one of doubtful sex, one of double sex, women, slaves that have not been freed, a man that is lame or blind or sick or aged, and one who cannot go up [to Jerusalem] on his feet. Immediately, we see two apparent sets of characters, the marginalized or marginal in identity, and those who do not have the capacity to fulfill the command. Of those who cannot fulfill the command, the exemption is not only understandable, but bespeaks a gentleness and consideration that seems to inform many such commands. For the marginals, we must look at each one and wonder why. Assuming that children are actually excluded for lack of physical capacity, (the later part of the same Mishnah establishes that a child is one too young to ride on his father’s shoulders) we can remove cognition as a qualifier, as presumably a child too young to understand could still fulfill such a command. Yet, if we presume for a moment that a child will one day be able to accept responsibility and fulfill the command, we separate them from the “imbecile” and the slave who has not been freed. They are in a different set for consideration, as they cannot make their own choices, and may never be able to.

Let’s explore for a moment the troubling concept that our translations referred to as an “imbecile”, or shoteh. To understand the rabbinic concept of an imbecile, we must try to avoid all of the modern stigma of the word and focus on the notion of one who truly lacks cognition and understanding. On this point, the remarks of Judith Abrams again are enlightening as to what we see as the developing Rabbinic logic. Noting that children are often grouped with the disabled, she correlates them with the factor of da’at, which a simple translation would render knowledge or cognition. For Abrams, however, it connotes intention, consent, opinion, knowledge, and maturity. From this springs the concept of the shoteh. In Abrams opinion, the shoteh can be anyone without da’at. This need not result from and is not a foregone conclusion to be a result of cognitive disability. A person without a disability could lack da’at, and a person with an intellectual disability could still have da’at.

According to her, da’at is necessary to be a part of the Rabbis’ system. Their system is dependent upon learning, hearing, thinking, and then, only with proper intent, doing. The groups we have, shoteh, katan, and cheresh, are presumably lacking the ability to engage in that process. At the very least, they have yet to develop it or their ability it is in doubt. This is why they are marginalized and why so much effort is put into their categorization. The best that can be said of these groups is that sometimes, in their innocence, they serve as vessels for the will of God. This system is given some proof in that for most things, visual and physical disabilities do not make one liminal, only disabilities of cognition and sexual ambiguity.

If we accept that a woman was free of such obligations because of gender issues beyond the scope of this post, we can understand that the androgynous person and the hermaphrodite are excluded because their gender is uncertain. Explanation is provided by the Bavli. In Bavli tractate Sanhedrin folio 66a, we find the following explanation, at least of our suppositions about those of indistinct gender.

Our rabbis taught: [“For any man that curseth his father or his mother shall surely be put to death: his father and his mother he has cursed; his blood shall be upon him”. Now, the Scripture could have said] A man [ish]; what is taught by any man [ish ish]? -- the inclusion of a daughter, one of indeterminate sex, and a hermaphrodite [as being subject to the law]. This exception helps prove the rule that gender uncertainty was one of importance for both legal obligation and legal penalty. Even as women were held to different standards because they were not men, so were people of indeterminate sex usually excluded. Yerushalmi Hagigah 1:1 VI-VIII has an in-depth discussion of this which absolutely and clearly indicates that the question was one of the ability to determine gender. This we know because it is said that if the gender becomes determined, and it is male, than he is obligated. We are still left with the question from this passage of a blind man or a deaf mute, the iver and cheresh of the Bible. The question of the blind man is expanded upon in the Babylonian Talmud, Hagigah 2a. In commenting on the word “all”, the rabbis say the following: what does “all” come to include? -- it comes to include a man who is blind in one eye; and it is contrary to the opinion of the following Tanna.... a man who is blind in one eye is exempt from appearing [at the Temple] as it is said, “he will see; he will be seen”. This logic of the rejected Tanna does explain why a fully blind man is not included. Assuming that his mistake was assuming that having only one eye precluded seeing and being seen, such would nonetheless be impossible for a blind man. In Tosefta Hagigah 1:1 the logic of seeing and being seen excluding the blind man is repeated, leading one to believe that this is from whence the Tanna is cited. The Tosefta calls this the opinion of Rabbi Judah, while the opposing opinion is included as the opinion of Rabbi. From a Rabbinic perspective, the deaf mute can be fit under a cognition rubric. Bavli Hagigah 2b supports the logic of cognition saying directly that the imbecile, the minor, and the cheresh are excluded for lack of understanding. Later, in 3a, there is further discussion of the nature of cognition, and that of obligation, of people with disabilities. First, there is a story of a Rabbi who taught those who could hear but not speak. When God granted them the ability to speak, it was found that they had learned, proving their intelligence. Still later in 3a, one who is deaf in one ear is exempted from an obligatory appearance because of the admonition, “so they may hear”. The editor of the Soncino Talmud in English feels that this is to remove the stigma of an inability to learn from the commandment, thus bringing it into line with the prior discussion.

People of liminal status are not without protection. In Mishnah tractate Baba Kamma 8: 4 we read the following admonition. It is an ill thing to knock against a deaf mute, an imbecile, or a minor: he that wounds them is culpable, but if they wound others they are not culpable. It is an ill thing to knock against a bondman or a woman: he that wounds them is culpable but if they wound others they are not culpable; yet they may need to make restitution afterwards -- if the woman was divorced or the bondman freed they are liable to make restitution. This passage teaches that one who is not responsible for their own actions, not in control of their own actions, or is under the guidance of someone else, cannot be charged restitution. The fact that upon becoming responsible for themselves, i.e. a freed bondman or divorced woman, these same individuals become responsible for their actions, proves this point very clearly. The deaf mute, the imbecile, and the minor represent a class of people believed unable to take responsibility for their own actions. There exemption from liability represents two principles in Mishnaic law, one laudable, the other questionable. First, those who cannot control their own actions are not culpable for the consequences. With this, however is pared the unfortunate idea that deafness implies inability to control one’s actions.

The Tosefta seems more confused on the same issue. In Baba Kamma 9:13 we have the following exchange: (I have removed the translator’s outline formatting to avoid confusion) He who inflicts injury on a deaf mute, idiot, or minor, is liable in four counts, but exempt on the count of indignity, because they are not subject to indignity. Rabbi says: “I maintain concerning the deaf mute that he most certainly is subject to indignity. As to a minor, he is most certainly not subject to indignity. As to an idiot, sometimes he is subject to indignity, and sometimes he is not subject to indignity.” As to a blind man, Rabbi Judah says, “he is not subject to compensation on the count of indignity.” And sages say, “he is subject to compensation on the count of indignity.” Clearly, there is some disagreement here. As this is the Tosefta not the a law book, it is difficult to say what became law. The unattributed statement voices a low opinion of the intelligence of described categories of people. Yet, the rabbis disagreed on this point. Rabbi and the sages understand that there is a certain dignity accorded to the blind and the deaf. Rabbi Judah withholds that dignity from the blind, and, since in the ancients’ hierarchy the blind were granted higher dignity than the deaf mutes, we can assume it was withheld from the deaf as well. Again, since neither offers proof text or rationale, it’s impossible to see whether this evidences a coherent view on disabilities, or whether this is simply a disagreement based on opinions of people with disabilities. Though the Tosefta does not shape halachah, this nonetheless shaped Rabbinic opinion on both sides of the debate.

In Yerushalmi tractate Peah, the idea is again brought up that provides special protection to those with disabilities. In fact, as a corollary, the idea is brought up that generosity to people with disabilities is repaid by generosity from God and is in fact tantamount to honoring God. Also, failure to assist brings Divine punishment.

Complimenting the discussion of responsibilities, and what rights can from there be gleaned, there is also very direct discussions of the rights of individuals with disabilities. In Mishnah Sanhedrin 8: 4 when speaking of the putting to death of a rebellious child, the following is said. If either of them was maimed in the hand, or lame or dumb or blind or deaf, he cannot be condemned as a stubborn and rebellious son, for it is written, “then shall has mother and his father lay hold on him” -- so they were not maimed in the hand; “and bring him out” -- so they were not lame; “and they shall say “-- so they were not dumb; this is our son -- so they were not blind; “he will not obey our voice” -- so they were not deaf.

The most common analyses of this passage within the tradition are laudatory. Most commonly, this passage is quoted to indicate the extreme lengths to which the rabbis would go to avoid enforcement of an admittedly grisly biblical idea. Lost, often within that analysis is an acknowledgment of the willingness to treat people with disabilities differently. This line of thought within the tradition goes on to create requirements that no human set of parents could meet before they could punish the rebellious son. One must ask, therefore, why it was necessary to single out people with disabilities as of the first to be excluded from this parental right or obligation, and what unfortunate lessons this provides to someone who, when wrestling with a question of halachah, looks to the rabbinic guidance in one situation to learn that the act in another.

Unfortunately, the themes that one can glean from this ruling create terrible precedent. The questions and issues are as follows. First and foremost, there is no mention of accommodation; a rebellious son appears to become unpunishable if his parents have a disability. Further troubling is the notion, buried within the text, that a blind person would not know his or her own son. In a clear example of the slippery slope concern raised above, this concept is expanded upon in the Yerushalmi Sanhedrin 8: 5 and extended to the qualifications of judges to judge, since similar language involving actions is utilized. This creates a danger that every biblical text using this language to define a physical task, a literal interpretation will prevail, and hence disqualify people with disabilities from all manner of participation in society.

The limitation of rights of Jews with disabilities finds its most profound expression in temple service. In Bekhoroth chapter 7, there is a discussion of who among the priests can serve in the Temple. There is an incredible list of disqualifying blemishes, some to do with head shape, others with shape, size, or functionality of various other body parts. The list only seems to have one guiding principle, that of aesthetic functional perfection. This seems to build on Abrams’ earlier concept, that the priest must be a perfect receptacle. Clearly, the rabbis’ view of perfection was particularly physical. The word unsightly is used at least once as justification. Towards the end of chapter 7, we find a discussion of true physical ability, but this is clearly not first and foremost in the analysis.

VALUE JUDGMENTS AND LESSONS: THE WHY OF DISABILITIES

In the Jewish world, it is said that “all is in the hands of heaven save for the fear of heaven.” The most important meaning to take from this aphorism is of course that our attitude is all that is within our control. More important for our purposes here, however, is the understanding that all of life unfolds according to the divine will. If this is the case, then disabilities are not accidental, but for good or ill, are a part of the divine plan. We saw this discussed a little bit above, but the concept of disabilities being given by God returns with stark clarity in Bavli Niddah 31a. The passage is as follows: and the Holy One, Blessed Be He, gives him the spirit and the breath, beauty of features, eyesight, the power of hearing and the ability to speak and to walk, understanding and discernment.

Harder perhaps that acknowledging the easy fact of the divine nature of disability is trying to figure out why disabilities are part of the divine plan, a topic on which rabbinic thought appears conflicted. First, Nedarim 20a, lists defects caused by various forms of sexual misconduct. Examples include lameness for physical misconduct in sexuality, muteness for oral misconduct, and blindness for visual misconduct. This tends to place to blame squarely on the parents, as well as strongly regulating sexuality. Contrasting with this, 20b discusses the sexual conduct of Rabbi Elazer ben Hyrkanos, noting certain irregularities enhance the beauty of the children. In the end, the issue is not resolved, because the halachah says simply, “a man may do whatever he pleases with his wife [at intercourse].”

The idea that the punishment of disability fits some sort of crime is a theme found in chapters 3 and 4 of tractate Sotah of the Tosefta. Then, in Tosefta Berachot 6:3, this idea is revisited with a twist. The Tosefta explains that upon seeing various disabilities and deformities, you are to praise God for his manifold creations. In essence, this makes disability an exercise in Divine creativity. Then, the Tosefta goes on to instruct that for other conditions, one should say, “Blessed is the true judge”. This is the traditional Jewish response to tragedy, or death. It indicates that God has a reason for the bad things that befall humanity. This put the level of complexity on the question and might be interpreted to show that it could be either blessing or curse.

Analysis

While there is certainly more to be learned from the above sources than could fit in numerous papers the size, and it may be most valuable to my readers to lay out the sources and allow them to draw their own conclusions, I would be remiss in not exploring for a moment to central themes that I observe from the above sources. I glean three major themes from the above. 1. Cognition and the importance thereof is central to the halachic treatment of questions of disability; 2. Disability, like everything else, is an expression of the will of God; and 3. God and humanity must partner in the care, support, and the inclusion of people with disabilities.

COGNITION

It is easy, and erroneous to view the rabbis focused on cognition as a prejudice to disregard of individuals with intellectual disabilities. To believe this is to miss the point last intent, in Hebrew kavanah is a critical and foundational piece of the rabbis understanding of the world. It is the intent that gives the action value. In many ancient cultures, ritual, and the exact formulas thereof, had concrete effect on both dieties and the world. These effects were both compulsory and sustaining. Judaism is not a religion of magic and ritual and prayer neither compel nor sustain the Jewish God. Rather, prayer, and a sacrificial rituals that it replaces serve to provide us with a concrete communicative connection to the divine. Without intent, there is nothing to communicate. It would be very much like saying words without knowing what they meant, a phenomenon of modern religion that would shock the ancients. The Hasidim would later theorize that intent could fully overshadow formula. This idea is neither new nor novel. Originally, the form of the prayer service was laid out by theme and the words provided belonged to the individual. Such a system would have been meaningless without intent and cognition.

To emphasize that this is a firmly held value and not an exclusionary prejudice, we should examine the lengths to which the rabbis went to make sure that no one was excluded. Great lengths to determine cognition, as well as great lengths to eliminate the stigma of liminal status were commonplace. Remember, a demonstration of cognition consistently overcame any presumption of exclusion.

DISABILITY AS THE WILL OF GOD

I will not belittle the beliefs of many Jews today as many Jews throughout the ages that every detail of the universe is ordered according to the divine will. Rather, I will remind the reader that the texts are ambivalent as to whether having a disability as we define it is even negative, much less punishment. In Judaism, in response to the experiencing tragedy or death, the legislative response was baruch dayan ha-emet, blessed is the true judge. Implicit in this response is the idea that the why of the occurrences of our lives is often beyond our understanding. We accept simply that the happening is God’s will, for good or for ill. To have this as the starting understanding of the origin of disability has the potential to be far less limiting that the prospective of those who would simply lament their ill fortune.

GOD AND HUMANITY SHARE RESPONSIBILITY FOR CARE AND SUPPORT

The idea that both God and humanity must partner to promote the well-being of individuals with disabilities, and that this is a holy partnership, dates, as we saw above, all the way back to the book of Leviticus. Consideration and respect for one’s fellow human being is a central idea to Judaism, and is extended whole cloth to people with disabilities.

It is frankly amazing to think that this can be gleaned from Jewish ancient sources when much of premodern and modern society condemned people with disabilities to the streets and the institutions. Judaism understood back in biblical times that caring for the neediest among us was a holy obligation.

It is this very consideration that will inform the discussion of halachah that we will have in the next section. Judaism is at its forefront a legal system, and so the law must be upheld. We see this in the exclusions in the Talmud. Equally strong, however, is the commitment to temper that law with compassion and find ways to minimize any negative impact of these rules.

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Judaism and Disability 1 of 4: A Twisting Branch of the Tree of Life: Disability in the Bible

From roughly spring of 2001 until roughly the spring of 2002, I researched and wrote as part of my baccalaureate degree at Yale University a paper entitled Judaism and Disability. It was quintessentially a work of undergraduate scholarship, building heavily on the work of Judith Abrams, the Journal of Halacha and Contemporary Society, and what few other scholarly articles were available on the topic at the time. In the years that followed, I have spoken numerous times on the subject, usually to synagogue audiences, tailored to give them an ethical and halachic framework on which to make disability related decisions as Jews and Jewish organizations. The more times that I have given the talk, the more I have come to realize that, while scholarly treatments of this subject exist, there is a dearth of any type of written material explaining the sources and the perspectives and the practical points of view to the interested Jewish layman. These four posts are the key points in that work: In Exodus 6:7, God tells Moses to say to the Israelite people, “and I will take you to be My people, and I will be your God.” A little later, we read, “... if you will obey Me faithfully and keep My covenant, you shall be My treasured possession among all the peoples. Indeed, all the earth is Mine, but you shall be to Me a kingdom of priests and a holy nation...” The text indicates that all the Israelites are a treasured possession, a “kingdom of priests”. In tension with this norm of equality, tradition treats Israelites with disabilities with great ambiguity. The Torah is sometimes supportive, but at other times completely exclusionary.

NARRATIVE TREATMENTS

The Tanakh has an inconsistent view of disability, sometimes positive and sometimes negative. The first disability in the Tanakh is the physical or metaphorical blindness of Isaac. The rabbis often interpreted blindness as a lack of insight. Jacob tricks his blind father, and, according to some Midrashim, spurns Leah for her weak eyes. Some rabbinic traditions hold that his acquired physical disability, a limp, is a punishment that atones for his sins.

Though the events of the Joseph story could readily lead one to question whether Jacob’s blindness ever truly disappears, there is universal agreement that Jacob’s fight, his injury, and his subsequent renaming as Israel represent a rebirth. As Abrams points out, this means that not only was Israel disabled in its very first incarnation, but also that the disability engendered the transformation of Jacob into Israel, making him worthy to be the progenitor of the Israelite people. From the beginning, therefore, we have the fundamentally contradictory question that will guide all of Judaism’s perspective on disability. Are people with disabilities worthy of respect, either as those with something special to give, or at least as worthwhile people, or, is the disability punishment for their weakness, making them unsuitable for the Jewish people? These questions are not so much answered as wrestled with our tradition. It may be fair to say that the answer is not black-and-white.

Moving on in the list Israelite heroes, we come to the undisputed paragon of the Jewish people, Moses. Moses also had a disability. In being chosen to lead the Jewish people, Moses protests. We read: But Moses said to the Lord, “Please O Lord, I have never been a man of words, either in times past or now that you have spoken to your servant; I am slow of speech and slow of tongue.” And the Lord said to him, “Who gives man speech? Who makes him dumb or deaf, seeing or blind? Is it not I, the Lord?” (Exodus 4:10-11) This passage is fraught with significance for the biblical perspective on disability. Firstly, the concept that God intentionally assigns disabilities is troubling but unavoidable. It is easy to excuse the unpleasant parts of life as that God feels constrained to allow, but this passage indicates that disability, rather than being an imperfection in the world to be remedied is in fact a pivotal piece of God’s plan. This idea is very present in Jewish thought. In fact, Rabbinic perspectives included the ideas that disabilities were punishments from God, and things like birth defects resulted from sexual perversion.

More positive, however, is the fact that the biblical story also presents the first compelling idea of accommodating a disability. In response to Moses’ protest, God allows Aaron to act as his mouthpiece. Moses’s disability is accommodated to allow him to do the job for which he was born.

Of course, the rabbis must explain away the discomfort of a disabled hero. From here comes the well-known Midrash of an angel guiding Moses to choose a hot coal over the jewels so as not to be killed by Pharaoh. In addition, the language used to describe Moses is literally Ch’vad peh uch’vad lishon, meaning heavy of mouth and tongue, not cheresh, the biblical and rabbinical term for a deaf man or a mute. This separates Moses from that category.

As the Bible continues, the view of disability remains resistant to categorization. Reasons for it include reward and punishment, as well as compensation for a character flaw. Samson is led to Delilah by his eyes. Upon being captured, he is blinded, and, once blind, he achieves his greatest victory. Notably, a sin with the eyes is punished by blindness. The idea that the punishment fits the crime recurs throughout the Bible. For Saul, after his misdeeds at Agag, he develops mental illness, which is equated with both an evil spirit and punishment from God.

LEGAL TREATMENTS

The legal codes of Tanakh lay out specific ideals of treatment of people with disabilities. Following the general admonition, “you shall be holy, for I, the Lord your God, am holy” of Leviticus 19:2, we find the specific instructions, “you shall not insult the deaf or places a stumbling block before the blind. You shall fear your God, I am the Lord.” (Leviticus 19:14) There is much to learn here First, the etymology teaches a lesson. The word used for blind person here is iver; the word for deaf person is cheresh, which in later times will be a deaf person, a mute person, or a deaf mute. It is interesting that this sin is tied not only to an affront against holiness, but to the obligation of fear of God. The use of the vav consecutive makes it clear that these phrases are related, i.e. the sin, punishment, and fear of God. It indicates that God would protect those who would not know their tormentor. Furthermore, the text puts these groups within the community. In fact, as a teaser for the next section, note that the Talmud expands on this very theme. In Sanhedrin 66a, the rabbis compare the deaf to the humblest of society, who are thus especially under God’s protection as weak.

The offering laws of chapter 21 of Leviticus, at their most basic reading, contain some exclusionary language. It is written: “No man of your offspring throughout the ages who has a defect shall be qualified to offer the food of his God. No one at all who has a defect shall be qualified: no man who is blind, or lame; or has a limb too short or too long; no man who has a broken leg or a broken arm; or who is a hunchback, or a dwarf, or who has a growth on his eye, or who has a boil-scar, or scurvy, or crushed testes. No man among the offspring of Aaron the Priest who has a defect shall be qualified to offer the Lord’s offering by fire; having a defect, he shall not be qualified to offer the food of his God. He may eat of the food of his God, of the most holy as well as of the holy; but he shall not enter behind the curtain or come near the altar, for he has a defect. He shall not profane these places sacred to Me, for I the Lord have sanctified them. (Leviticus 21:17-23) On a purely technical note, it is interesting to see how many disabilities are enumerated. They include injury, disease, and congenital disabilities. Far more interesting is the fact that these people with disabilities are excluded from all Priestly rites, and yet are free to partake of priestly privileges, such as the offerings. What can explain this apparent inconsistency?

The first clear answer is the idea of the protection of a holy place. It is important to remember that profane and impure are not evil in Judaism, merely the opposite of sacred and pure. Most intense signs of physicality and mortality were impure. It is no surprise that a disability might fall under this category. It is important to remember as a measure of value judgment that sexuality, one of the chief forms of impurity, biblically mandated.

For a different point of view, Judith Abrams offers a suggestion. Says Abrams, “As pure a reflection as possible of the heavenly spheres was needed in the corporeal world to ensure that the sacrifices were acceptable above.” According to Abrams, the Priest was in an environment of blindly lethal holiness. Being among the divine, any blemish would make their bodies unable to withstand the forces. This is why the disability takes the Priest of the cult but not out of the priesthood. It is not the goal to exclude him, but rather to protect him.

IN VISIONS AND POETRY: THE PROPHETS

In the Prophets, disability receives an interesting yet incoherent treatment, crucial to understanding later views. In speaking of the redemption in Israel, Isaiah uses fascinating imagery, which allows us some insight into that culture’s view of disability. “In that day, the deaf shall hear even written words, and the eyes of the blind shall see even in darkness and obscurity” (Isaiah 29: 18). This seems to indicate that along with forgiveness of the people will come healing of disability. This might be taken to mean disability is also a judgment that will be reversed much like God’s other punishments of Israel. This idea would inform much of Rabbinic thought. This same idea is repeated in Isaiah 35: 3-6.

The idea of lameness or disability as a punishment is hinted at further in Micah. Talking again of the day of redemption, the prophet speaks for the Lord as saying, “in that day -- declares the Lord -- I will assemble the lame [sheep] and will gather the outcast and those I have treated harshly;” (Micah 4: 6). This seems to indicate that those with disabilities may be among those with whom the Lord has dealt harshly. This might again label the disabilities as punishment. This is repeated in Zephaniah. In her book, Judaism and Disability, Judith Abrams deals with this topic noting that Israel is metaphorically disabled by sins, yet healed by the love of God.

Later in Isaiah, the role of people with disabilities becomes even more confused. In what appears to be a description of the messiah, we read the following words. First, in 42: 3, “a bruised reed, he shall not be broken; a dim wick, he shall not be snuffed out. He shall bring forth the true way.” Then, in 42: 18-20, “Listen: you who are deaf; you blind ones, look up and see! Who is so blind as My servant, so deaf as the messenger I send? Who is so blind as the chosen one, so blind as servant of the lord? Seeing many things, he gives no heed; with ears open, he hears nothing.”

While clearly there are metaphorical questions informing these ideas of lameness, blindness, and deafness, it is never too simple within Jewish tradition to look at the direct meaning as well. It is quite possible, therefore, that the one chosen by God to bring about redemption may have a disability, and, in fact, this disability will be necessary to make him able to heed, or to bring the message, and do God’s bidding.

The last part of Isaiah that raises significant questions is the beginning of chapter 56. We read “For thus said the Lord: ‘as for the eunuchs who keep my Sabbaths, who have chosen what I desire and hold fast to my covenant -- I will give them, in My House and within My walls a monument and a name better than sons or daughters. I will give them an everlasting name which shall not perish.’ (Isaiah 56: 4-5). This raises tantalizing questions regarding the relationship between God, observance, and disability. Far from the Rabbinic codes that seem to exempt people with disabilities, especially eunuchs, from ritual, this seems to say that an observant person with a disability will be cared for in the world to come. Furthermore, though not a promise of healing, God will compensate them for the limitation caused by their disability.

The idea of inclusion of people with disabilities is also in Jeremiah. Speaking of the healing of the nation after exile, and the gathering of the chosen to God, the prophet attributes these words to God. “I will bring them from the Northland, gather them from the ends of the earth -- the blind and the lame among them, those with child and those in labor -- in vast throng shall they return here” (Jeremiah 31: 8). As we can see, these quotes tend to contradict earlier quotes about those who are excluded from the community. All of the aforementioned opinions, contradictory though some may seem, inform the Rabbis’ somewhat ambiguous stance on disability.

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Guilt, Privilege, and Paying Attention

Years ago, as a young law student, I wrote the following reflection, while working to guide and supervise a plaintiff in Health Law Advocates' successful lawsuit to secure meaningful dental coverage for those on MassHealth. I wrote:

Guilt is not an emotion that I grant too much time. I didn't ask to be lucky, didn't ask to be one of the few persons with disabilities to get all of the services that I need, including "Cadillac" services like twice yearly fluoridation, twenty-four hour Personal Care Attendants, and all the Durable Medical Equipment I need. I am no less deserving than anyone else. Yet, what gives me trouble is that I am also no more deserving. "There but for the grace of God goes me." This rings through my head as I sit at my Vocational Rehab-purchased laptop reading about the tens of thousands just like me. Just like me, but not like me

Maybe they were not uniquely "lucky" to have a disability that left them with full cognitive potential and still photogenic enough to evoke a desire to help rather than the discomfort and ostracism. Maybe their parents were not as tenacious, or as well educated, or as committed, if they were present at all. Maybe they were not blessed with a school system filled with individuals determined to find their abilities, and to help them to grow into their full potentials. Maybe they did not find

a University institutionally and individually committed to their success, complete with tens of thousands of dollars and hundreds of compassionate person-hours of expenditures. Maybe they did not find advocates and allies at every level of Social Services, people that shepherded them through the twists and turns of a system in which so many people fall through the cracks, despite best intentions. Maybe they just didn't have my knack for being in the right place at the right time. So many maybes...

I didn't ask for my disability, or my wonderful services, and our twenty-first century sensibility says that the corollary is that I don't owe any more than gratitude. Like heck, I don't! Call it God, Karma, or luck, I am where I am by a unique confluence of incredible circumstances, of love and fate and the blood sweat and tears of more good people than I will ever know.

I'm here and others are not. Guilt is not a useful emotion, but let me transmute it into a sense of obligation. Only by taking my unique position and dedicating myself to helping others conquer their maybes can I justify the effort, love, and blessing that went into giving me the life that I have.

"There but for the grace of God goes me."

It may be true, but Judaism teaches that we are all partners in the work of perfecting our world. We are all partners, and hence must work to be the mechanism by which one more person gets where I am, and one more and one more, until the problems that I read about today are just another set of unfortunate moments in history.

If everything happens for a reason, then I thank God for the wonderful people and opportunities in my life, and pledge to take the chance they gave me to help as many others as I can. I didn't ask to be lucky, but I am. God, help me to never lose sight of just how lucky I am. But also, help me to never be take that luck for granted, and to do it appropriate homage by using it for creating as much good for others as I can.

In the dozen years since I wrote this, much has changed. The lawsuit was won. My words were used by a wonderful Rabbi to teach us all. And, I no longer get quite get all of the wonderful services I got then. What hasn't changed is the conviction that I am fortunate, have had the luck to avoid a much more difficult existence, and feel that that obligates me to do what I can.

Also, I've learned that while my lucky turns, and where they could've changed, are fairly obvious, any one of us could lose health, physical ability or means at any time. "There but for the grace of God goes me.", but there but for the grace of God goes you too. I know what I'm going to do about it, but what about you?

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An end and a beginning

Update: May 20, 2014: a version of this piece was posted today on Zeh Lezeh, a blog of the Ruderman Family Foundation. May 2, 2014 marked the end of my service as a Member of the National Council on Disability appointed by President Barack Obama. Though no longer a public servant, I will never cease to work for the day when every American with a disability gets to experience the same gratitude that I felt on the day in 1998 when, for the first time, I got to be not only a recipient of government services, but that most awesome of American title's which is "taxpayer". (My first paycheck, like so many of our young people, was from Jewish summer camp).

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

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

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

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

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

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

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