I’m preparing for a big adventure. This week I am traveling to Chicago to attend the annual convention of the Central Conference of American Rabbis. That’s the organization of Reform Rabbis in North America. I’ll see old friends, we’ll study and pray and tell tall tales, and it will be grand. The night of April 1, I’m going to shave my head.
This is the first time I’ve traveled so far in a long time, and I am a bit nervous about it. You see, my world has gotten rather small in the last few years due to troubles with chronic pain and arthritis. Nowadays, if I want to go farther than a couple of blocks, or if I am going to need to stand in line, I use a scooter. This will be the first time I’ve traveled with it. So there is a lot on my mind: the airports, the airplane, transport from O’Hare to the hotel, the reactions of colleagues when they see me on wheels — it goes on an on. I’m still self-conscious about using this thing. But if I don’t use it, I can’t go. And I am tired of letting my life get smaller; I have work to do!
I had coffee today with a friend who is an old hand at wheelchair travel. He was very encouraging – I might say he even gave me a gentle little kick in the tuchus. It’s easy to hide at home, but there is too much life to be lived, too much Torah for me to live, to give in to that impulse. I’m glad we had coffee, and I’m going to keep him in my heart as I buzz down the hallways of OAK and ORD and down the sidewalks in Chicago.
So wish me luck! Life is about to get really interesting.
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?
I took the leap into my new home with two projects in mind:
1. Radical Hospitality – I’m going to “do Jewish” here regularly and often, with many different people. That includes Shabbat afternoon hang-outs, Shabbat dinners, and other celebrations or ordinary times.
2. Asking for and accepting help – My body doesn’t allow me to play the Lone Ranger anymore, doing everything for myself. I tried dealing with that by isolating a lot, and the result was that I lived in a half-moved-into apartment for five years. Now I’m going to do it differently: asking for help, accepting help, being gracious and when I can, combining that with being Jewishly hospitable.
Hospitality, so far, has begun with a bang. I think I’ve had more guests in my house in the past 12 days than I had in the previous 3 years. Most of it was holiday related, and not at all routine, but I am not a hermit anymore. This is good. Also, I’m enjoying it. I like having people over. I like doing Jewish with old and new friends.
Asking for and accepting help has also been a success, but that one is really giving me a spiritual workout. Two of my students and one other friend were here Saturday night, assembling bookshelves for me. I am so grateful to them – my back and knees won’t permit me to do any of the stuff they were doing – but oh my goodness, I am uncomfortable watching people do things for me! The alternative, though, is (1) do without or (2) hire people. For years now I have worked with a combination of those two, and frankly it was not life-enhancing, especially since after a while of muddling through, I didn’t want to have anyone in, friend or hired, because of the clutter. So I am faced with a choice: learn to accept the goodness of others, or be isolated.
So last night I accepted the generosity of three people who did not owe me anything, and it didn’t kill me. No one is going to hold it over my head, or take it out somehow later. It’s OK. And I look forward to giving back with things I have to give: Jewish learning, food, warmth, and so on. I am not “less” for needing their help, nor am I in some sort of mysterious trouble for accepting it.
Kol Yisrael aravim zeh l’zeh: “All Jews are responsible for one another.” I have always taken that as a challenge to look for others that I can help. Being on the giving side has become easy for me. Being on the receiving side is a new lesson to learn.
Image: Rabbi Adar, Rabbi Mates-Muchin, and three members of Temple Sinai of Oakland at the Oakland LGBTQI Pride March in 2016. I’m on a scooter and carrying a sign, “We are ALL made in God’s Image.” Photo by Linda Burnett, all rights reserved.
I have become a rather stubborn cuss when it comes to my legitimacy as a Jew, but I’ve struggled with legitimacy and disability. Now I see that they are the same issue: it’s the old “I’m not worthy” thing, the fear of being called out as a fraud.
I feel legitimate as a Jew, even though I am aware that there are Jews in the world who would disagree. I am not disturbed by that, because when the question comes up, my mind immediately produces evidence of my legitimacy: I think of the rabbi who oversaw my conversion, and certainly I see him as legitimate! I have studied Hebrew, lived in Israel, observed countless mitzvot. I feel legitimate as a Jew, because I am part of a Jewish community. I get feedback from fellow Jews that I’m the real deal enough of the time that I can discount the ones who don’t agree.
But there was a time when I looked desperately for legitimacy, when I was just learning how to be a Jew. I remember longing to wear a kippah [skullcap] but being afraid I was presuming (and the joke of that is, you don’t have to be Jewish to wear one.) Then my study partner clapped one on my head one day, and voilá! A little piece of legitimacy fell into place. It was only by logging time and experience in owning my Jewishness – and by feeling the acceptance of my Jewish study partner – that I was able to rest easy with that small piece.
A supervisor at one of my internships in rabbinical school asked me about my conversion and then indicated that he didn’t recognize it. I went back to my school and asked for guidance. My teachers there bristled to my defense. They saw me as legitimate and saw him as an outsider who was looking a gift horse in the mouth. Their response said to me, “Yes, you’re the real deal. Now act like it.”
Legitimacy comes from a sense of belonging, and of security in community, and we get that from the feedback we receive (verbal and nonverbal) from others in the community. My students who are just beginning Jewish paths need to “do Jewish” day and night, spending as much time in the Jewish community as they can. They need reassurance and support, not just from their rabbi, not just from their teacher, but from other “regular” Jews that they are becoming one of us. They need to hear about it when they do something well, whether it is saying a blessing or helping to set up chairs.
And for me, I need to accept the fact of being a person with disabilities, and continue to build relationships with other people who identify as disabled. My dear friend and study partner in school is deaf, and she was the first to say to me, look, ask for the accommodations you need! Initially I was not sure about this, but her reassurance that she saw me as having legitimate needs helped me to ask for things I needed. Later, another colleague whose disability I recognized as “real” asked me why on earth I didn’t have a handicap placard for the car, when I obviously needed one – and she was right, and I finally accepted it from my doctor.
There will always be critics. But why pay any attention to the jerk at Home Depot who sees me on my scooter and says I wouldn’t need it if I lost 50 lbs? Why am I giving him so much authority? Why give some busybody self-appointed expert the authority to shame me? Because the words are his, but the shame is mine. I can accept it, or I can reject it. It’s just that rejecting shame requires resources: I have to own my situation, and know that my community sees me a particular way to have the gumption say “phooey” to the ignoramus.
The enemy is shame. The cure is community – loving, supportive community, that knows the importance of nurturing the newbies and the shaken.
When I applied to rabbinical school in 2001, they told me to take the GRE (Graduate Record Exam.) On the opening screens of the test, it asked demographic questions, including a question about disabilities. I had never used that word to describe myself, and I started to click past. Then I remembered: oh yeah, the learning specialist I saw made me go see an audiologist, and I’m hard of hearing. OK, I’ll click that.
And as my eye moved on, I realized with shock that I had other boxes to click. Learning disabilities? Uh, yes. That was why I’d seen the learning specialist. Mobility problems? I eyed the cane propped against my chair. Yeah, I guess. I quit reading and clicked to the next screen, where it fed me back my demographic info, including the words “multiple disabilities.” I felt queasy, clicked past, and shoved the whole thing out of my mind to take the test.
That was the first time I admitted to having ONE disability, and I will admit now that I read “multiple disabilities” as “object of pity” which I had no intention of being. I spent the next year proving I could keep up with my twenty-years-younger peers, in class and out, and by the end of the year I was on antidepressants (for one of the other little issues I hadn’t mentioned) and my body was a wreck. I was deep into chronic pain territory, and determined to deny everything.
Because, you see, I had two problems with this multiple disability thing: first, I looked down on disability, so I couldn’t possibly have one (much less lots of ’em) and secondly, my disabilities weren’t legitimate. Other people had worse disabilities so I couldn’t possibly take up room in that category. Or something.
It was years before I finally owned the category of “disabled,” thanks to the encouragement of friends whose disabilities I regarded as legitimate. Then, and only then, was I willing to take the blue placard the doctor offered me, which has made life so much more manageable. There were more years, and more isolation, before I was willing to step up and get myself a scooter so that I could go places that required more than 10 minutes of walking or standing. And I must confess that to this day, I spend more energy than I should worrying that someone will think I am using the scooter because I’m fat, and they’ll judge me, and — what? I’ll die? I will eventually grow up and quit worrying about that, too, I hope.
So why am I yammering about this on a Jewish blog? To start, Torah covers all of life: there is no subject about which there is no Torah. I needed to learn to accept the body I’ve got, to regard it as holy, and I’ve made strides in that direction. But even more, there’s this legitimacy thing. I was hesitant to accept a handicap placard for the car because I didn’t see myself as legitimately needing it. In the same way, I remember my longing for Jewish legitimacy: the thrill when I stepped out of the mikveh, the struggles I had every time someone questioned my legitimacy as a Jew, because no one questioned it more than me. And then eventually I learned the truth: I would be a real Jew when I acted like one.
So here I am, 100% Jewish and definitely disabled. Also fat, lesbian, Southern by birth, Californian by choice. Pretty smart in some subjects, remedial level in others. A work in progress.
I believe that every human being has a spark of the Divine. I have very little trouble believing that, except when it comes to myself.
I gather a lot of people feel that way. So to all of you (and myself) I will say: Wake up! Life is marvelous, terrifying, a gift we have only for a short time. Figure out how to make the most of yours, and do what you can.
As for legitimacy – well, more about that later. I’m on a roll.
Anyone who spends much time with me hears about Green Stamps. Once upon a time, the Sperry & Hutchinson Company printed these stamps. Back in the 1960’s we received them as a premium at the grocery store and various retailers, and if we saved enough (usually by pasting them in special saver books) then we could trade the Green Stamps for all sorts of goodies: toys, housewares and other loot. I don’t know what happened to Green Stamps, but they are a fine metaphor for one aspect of my life.
I’ve got multiple disabilities: I have hearing problems, I am prone to cyclical depressions, and as if that weren’t bad enough, I’ve got mobility and pain problems as well. The actual diagnoses are not important (and frankly, not for the Internet) but the effect on my life is that I have to pick and choose carefully how I spend my energy. When I talk about “saving up my Green Stamps,” that’s what I mean.
Recently I ran across Christine Miserandino’s Spoon Theory which is a similar concept, brilliantly expressed. (Stop now, and click that link. It is an almost perfect expression of a very important concept.) The bottom line is that for some of us with chronic troubles, every choice has to be weighed and considered, because when we run out – whether it’s spoons or Green Stamps – the day is OVER. If we somehow get into a deficit, Heaven help us, because it will take weeks or months to recover.
I write about this not to whine but to say to you: this is how some of us live. If you see me or someone like me parking in a “handicap space,” don’t stop me to fuss at me.* You (1) can’t see my disability and (2) I am not going to stop, because if I stand there for more than 5 min I will break out in a sweat and eventually fall down and never run my errand. Don’t tell me that if I lose weight it will be all better. Don’t tell me about herbal supplements, meditation, medical doctors, or the miracle surgery your Aunt Flossie had. Trust me, I’ve heard it all.
But you want to help! I understand that. Here’s how you can help: When you see me, or any other person disabled by chronic illness, don’t try to fix things. Assume that my medical affairs are my private business (just as yours are your private business) and behave as you would to anyone else. Invite me to join you, and then don’t take offense if I tell you I really can’t. Because it’s not personal: believe me when I tell you what I need and don’t need: I know exactly how many Green Stamps I’ve got in my pocket.
What is hateful to you, do not do to any person. All the rest is commentary; go and study! – Rabbi Hillel
*If you think someone is abusing a handicap space, you can (1) leave them a note on the dashboard or (2) report them to the police. Just remember that you might be wrong.
I wrote this piece several years ago. Some things have changed about my situation (I have health insurance! We got married! DOMA went away!) However, the basic message is still good – disability can change how you approach mitzvot. It’s OK to find a way to participate without it having to meet some artificial standard of “perfection.”
I woke up this morning aching again. This has been going on for years, gradually getting worse. Some days it takes a couple of hours of warm-up to walk. Since I have had minimal health insurance and have been terrified of losing it, I have not investigated the aches too closely. I hope that will change soon, now that my marriage is recognized by the Feds (no more DOMA, Thank you Supreme Court.)
Why am I bothering readers with this? Because the mystery aches, along with some old orthopedic problems, are the reason I am not building a sukkah this week. Putting it up and taking it down is just too much, especially with my classes coming so soon. I am quite certain I am not alone in this.
What do you do when a mitzvah is simply beyond you? I lean on my community. I will help a friend decorate her sukkah, and enjoy sitting in it with the people who come. And I can feel OK about that, because I will help make folks feel welcome there. Also I learn where the sukkah and sort-of-sukkahs are, and I help others find them.
I have been enthusiastic talking about Sukkot on this blog. I love Sukkot. But I didn’t want a reader to be sitting out there thinking that because you can’t afford a sukkah, or you have arthritis, that you are somehow falling short this Sukkot. Hospitality comes in many forms, and so does participation in this holiday.
Sukkot sameach! If you live in the East Bay, I’d be delighted to meet you in one of the several Sukkot available to us. Enjoy the holiday in all the ways available to you!
As a student rabbi I had the privilege of serving Temple Beth Solomon of the Deaf in the San Fernando Valley of California. Today I received the current newsletter and learned about a new film based on the experiences of a Deaf Holocaust survivor.
Five Needlesoffers an unusual angle on Shoah history. It tells the story of a small group of Deaf women caught in the Shoah. The survival of any of these women was remarkable, since the Nazis were thorough in murdering anyone (Jewish or not) with a disability. However, some women were able to hide their deafness and still find one another in the camp. A very few of them survived.
You can see the film at BSL Zone, a website of the The British Sign Language Broadcasting Trust (BSLBT). It commissions television programs made in British Sign Language by Deaf people for Deaf people.
The true story behind the film may be found in an issue of the newsletter of the Jewish Deaf Community Center of Los Angeles. If you read the true story, you will see that the filmmaker has combined a couple of different stories. Five Needles is a fictionalized account of the story of real Deaf Jews.
While this film has some rough edges, and I could quibble about some historical details, the story and acting and the mood they evoke are well worth the viewing time.