In Which the Rabbi Admits to an Ableist Past

Image: On my scooter, carrying a sefer Torah for hakafah with Rabbi Jacqueline Mates-Muchin of Temple Sinai, Oakland. Photo by Linda Burnett.

I grew up in a family where illness of any kind was regarded as either weakness, or a moral flaw, or both. My mother had a major stroke when she was 40 and I was 16. My father insisted we keep her stroke secret from everyone outside the family for months. I chauffered my four brothers and sisters, cooked, did laundry, and lied to my teachers about why my homework was never done. Dad never explained why it was a secret, just that we must not tell a soul.

I learned to be secretive and ashamed of any problem with my body. So it was that in my 47th year I had quite a shock. I went to take the Graduate Record Exam, which was required for my application to rabbinical school, and it began with a questionnaire. One question asked me to click the box beside any disabilities I had. I started to skip it (never tell!) and it wouldn’t let me.

I knew that “None” was a lie, so I went down the list. Mobility? I looked uneasily at the cane next to my chair, and clicked. Hearing loss? I had just learned I had a 50% hearing loss, most likely from birth. I clicked it. Learning disabilities? In the same battery of tests that had revealed the hearing loss, I’d learned I had something called “auditory processing disorder” and some other things as well. So I clicked again, annoyed.

On the next screen it summarized me thus: Female, age 47, has advanced degrees, multiple disabilities. Multiple WHAT? I could not cope with those words. I pushed them out of my mind and concentrated on taking the test.

I spent the following six years trying to hide from my disabilities. They hampered my performance at school. I spent much of my time in pain, which further hampered my performance in school and at work. I was determined to ignore all of it, so sometimes I would finish leading a service bathed in sweat just from the pain of standing up all that time. In short, I cheated myself. I spent energy trying to deny what was quite obvious: I have multiple disabilities and a chronic pain problem. The pain problem stemmed from a bunch of injuries that had never been treated because my family and I had pretended they never happened, and from a foot surgery that had gone wrong. At this point, most of it is beyond repair.

The healing began one day when I was limping along after a group of colleagues who were engaged in conversation and were walking a bit too fast for me. I and another rabbi, one who had what I considered “legitimate disabilities” were left behind. I was fighting back tears, but she was annoyed. “Forget it, let’s just stop here, and get drinks and a nice dinner without them!” she said, turning in to the restaurant where we stood. Instead of excoriating herself for “being damaged,” as I would have done, she was mad that they’d been thoughtless, and immediately moved to meet our needs. I was astonished.

A few months later we were at a conference and the same rabbi came upon me lugging a suitcase up some stairs from the parking lot, dabbing away tears of pain. “Why don’t you have a handicap placard?” she demanded. “You obviously need one! Go to your doctor and get one!” “I can do that?” I said. “Of course you can! You need one!” and then she added softly, “It’s OK.”

“It’s OK.” I remember tearing up at those words. I had divided disabled people into two categories: people with “legitimate disabilities” – people in wheelchairs, deaf people, blind people, people who were not me. I regarded myself as a maligerer, a damaged person, a fake. It took her kindness for me to realize that ALL disabilities are legitimate. It is OK to need help. It is OK to ask for help. It is human to have imperfections in our bodies.

These days I have a blue handicap placard and a lightweight scooter. I don’t lead services or teach classes with sweat running down my back, because I am gentler with myself. If I need to sit, I sit. If I can’t stand without pain, I don’t stand. I don’t do things that are likely to aggravate my body, and I ask for accomodations when I need them. I do not call myself “lazy” when I need to lie down.

When a Jew internalizes the hatred of Jews and turns it upon themselves, we say they are a self-hating Jew. By much the same mechanism, ableism can be internalized. Very young, I absorbed the message that illness or disability was something to be ashamed of, and so I hid my troubles in shame. It was only when a disabled rabbi gave me permission to value myself as I was, by modeling that behavior for me, that things began to change for the better in my life.

Leviticus 19:14 teaches us that we are forbidden to curse the deaf or put a stumbling block before the blind. We are not to treat people badly because they are disabled. This prohibition extends to ALL persons with disabilities, including ourselves.

If there is anyone reading this who identifies with some part of this story, I hope you will find a way to be kinder to yourself. Sometimes that means seeking medical attention: getting a hearing aid, for instance. Sometimes it means accepting the things that cannot be fixed, and getting accomodations that will allow you to live fully despite them. Whether it is a hearing aid, or a mobility scooter, or a power wheelchair, I hope you will not let shame and ableism cheat you from living your fullest life.

God created each of us “b’tzelem Elohim” – in the image of the Holy One. Whatever is going on with our bodies, we each contain that Divine spark, and we have a right to live fully and with dignity. May the day come soon when all feel free to ask for and get whatever they need to live a life of Torah, of freedom, and of dignity.

Ableism in the Torah? Say it ain’t so!

Leadership and Disability: totally compatible!
Leadership and Disability: totally compatible!

 

The Lord said to Moses, “Say to Aaron: ‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; 1no man with a crippled foot or hand, or who is a hunchback or a dwarf, or who has any eye defect, or who has festering or running sores or damaged testicles. No descendant of Aaron the priest who has any defect is to come near to present the food offerings to the Lord. He has a defect; he must not come near to offer the food of his God. He may eat the most holy food of his God, as well as the holy food; yet because of his defect, he must not go near the curtain or approach the altar, and so desecrate my sanctuary. I am the Lord, who makes them holy.’” – Leviticus 21: 16-23

These words from parashat Emor are troubling. This is a commandment given concerning the kohanim, the priests of the Temple. It seems to say that anyone blind, lame, disfigured, or deformed is not as good as a “whole” person. It seems to say, “We won’t starve you – you have a right to live! – but we ask that you keep out of sight. You are not good enough to serve in the Temple.”

And indeed, there is a long sad history of human beings saying exactly that to family and community members who were physically or mentally different. Stay out of sight – or at least keep your disability out of sight. This attitude has also taken the form of pretending that disabled people are invisible. And sadly, these verses from the Torah seem to support the notion that the best thing we disabled folk can do is to stay out of sight.

For years, I hid my own disability when it came time to lead services, despite the fact that standing for any length of time gave me excruciating pain. I got the idea from this Torah portion that a person who was leading services should be physically perfect, and that if I needed a cane or a wheelchair to function, then I was not fit to lead a service. As a result, I was not at my best on the bimah (the raised area from which services are led.) I was fuzzy minded, clouded with pain. I mispronounced words. I forgot things. I did not give the congregation the leadership it deserved. Eventually, I decided that I should not be a congregational rabbi, because of the disability I struggled to hide.

I have changed my mind about all of it. First of all, there can be strength and beauty in the prayers of a person who sits in a chair or holds a cane. I know, because I have seen it.

Secondly, I look at the historical context of this commandment. Other ancient cultures exposed (killed) infants who were deemed defective. Even Plato says that in an ideal community, infants with defects would not be allowed to live. So anyone with a congenital disability was deemed unworthy to live: compared to that attitude, saying, “You can eat the holy food, but don’t serve at the altar” seems like a big step forward.

Third, we can look at the interpretation of the tannaim, the earliest rabbis who actually recalled a time when the Temple was standing. In Mishnah Megillah 4.7, Rav Yehudah says that a kohen with stains on his hands also may not give the priestly blessing, “because people would be inclined to stare.” If in fact the reason for keeping the kohanim with visible “defects” from the Temple service was that “people will stare” then it suggests that the problem is not in the disability, but in the reactions of the public to disabilities. Later rabbis went even further: in the Gemara, Megillah 24b, they say that if the kohen is known locally, and “people are used to him,” then there is no impediment to his participating in the service.

This clearly locates the problem with the distraction of the congregation. The kohen may not serve publicly if his disability makes it impossible for the congregation to concentrate.

In this day and time, since we know that it is wrong to discriminate against those with disabilities, this is a red herring. If I am “distracted” by someone’s race, or accent, or the wheelchair they use, it is my task to “get over it” – or more accurately, to get over myself. It is not fair, it is downright wrong, for me to say to anyone, “Don’t lead services, your disability is distracting.”

So if the literal understanding of this verse does not hold up to scrutiny, if a physical disability should no longer prevent someone from serving, what “defects” should keep one from publicly leading a service? Further on in tractate Megillah 29a:

Bar Kappara gave the following exposition: What is the meaning of the verse, “Why look ye askance, ye mountains of peaks, at the mountain which God has desired for His abode?” (Psalm 68:17)  A heavenly voice went forth and said to them: “Why do you look askance at Sinai? Ye are all full of blemishes as compared with Sinai. It is written here “with peaks” and it is written elsewhere “hunchbacked or a dwarf.” (Leviticus 21:20) R. Ashi observed: You can learn from this that if a man is arrogant, this is a blemish in him.

The Psalmist asks why the greatest mountains, with beautiful peaks, look disapprovingly at little Mt. Sinai. The heavenly voice retorts, “Why are you criticizing Sinai? You are all full of blemishes!” Bar Kappara is drawing a parallel between the beautiful tall mountains looking down at Sinai, and the beautiful human beings looking down at a hunchback or a dwarf. Indeed, says Rav Ashi, the real blemish is arrogance.

Thus while this passage appears to reek of old prejudices – and in fact it may represent an old, bad solution to the problem of ableism – further study in the Oral Torah reveals it to be something quite different. If the real blemish is arrogance, then the arrogant may not lead services – but we’ll still feed them.

I can live with that.

Image: FDR in Wheelchair, public domain

It Was Very Good: Judaism and Disability Rights

Two activists, two rabbis: all "very good."
Two activists, two rabbis: all “very good.”

 .וַיַּרְא אֱלֹהִים אֶת-כָּל-אֲשֶׁר עָשָׂה, וְהִנֵּה-טוֹב מְאֹד

These words from Genesis 1 are simple and eloquent:

God saw ALL that God made, and behold, it was VERY GOOD.

This little line is key to many areas of Jewish thought, but none more so than in the arena of human rights. Human beings are all equal, whatever our race, whatever our gender, whatever our abilities, whatever our sexual orientation, we are all created b’tzelem elohim, in the image of God, and we are part of creation, which is tov me’od, very good.

This is especially important in the realm of disability rights. Most of us are familiar with the concepts of racism or sexism, and there’s general agreement that those are wrong. But then we look at a person in a wheelchair, or a person with a hearing loss, or a person with developmental, mental, or emotional disabilities, and we forget that they, too, are “very good” just as they are. This is “ableism” and it is pernicious.

Ableism whispers that the women in the wheelchair whose speech is slurred has nothing important to say. Ableism suggests that the developmentally disabled man who makes us uncomfortable should not be visible in our congregation. Ableism suggests that when accommodating a person is “too expensive” or “too much trouble” or “too uncomfortable” we can write it off with a shrug. Ableism suggests that some people’s feelings are less important, that their lives are less important, and that it is OK to write off certain human beings because gee, they are a lot of trouble.

Ableism is wrong from a Jewish point of view because it flies directly in the face of our core belief that all human beings are equal, and all creation is very good.

Jewish tradition has a rocky history around issues of disability rights. While in Leviticus 19:14 we are commanded “not to curse the deaf, nor put a stumbling block before the blind,” two chapters later we read  Leviticus 21: 16-21, which outlines physical requirements for the priests who will lead public worship. The priests who lift their hands in worship and participate in the sacrifices must be physically perfect. Maimonides explains this rule by writing “most people do not estimate a person by his true form, but by his limbs and his clothing, and the Temple should be held in the highest regard” (Guide to the Perplexed, 3:45.)  In other words, people are ableist, and this requirement is in place because of our shortcomings, not because there’s anything wrong with the person with a disability.

Ableism is as bad as racism, as bad as sexism, as bad as homophobia, as bad as ageism, as bad as any other “-ism.” We can learn better. Just as we can fight racism and other prejudices in our hearts and in our behavior, we can fight ableism. We can change. We can demand change in our institutions and in our communities.

God saw what God had made, and behold it was very good. Isn’t it time we took God’s word for it?