I first met Lorenzo through his 1984 book, The Cripple Liberation Front Marching Band Blues. It was lyrical and angry as hell and not at all fit for polite society. I loved it.
Meeting him in the flesh was quite different. It was in 1991, in the small town in Oaxaca where he spends his winters, and what struck me most about him was his gentle, open humor. Sam Maddox, New Mobility’s founder, once described his demeanor as “rumpled Ivy League.” That’s pretty close.
Lorenzo visited the hotel my family and I were staying at several times during our week in Oaxaca. Each time I saw him, he had a different helper in tow. Or two. And each and every one of them was obviously devoted to him.
One day, he invited me to lunch at his huerta–an overgrown orchard in a lush green ravine, choked with palms and tropical greenery watered by a stream that wandered its length. A steep pathway threaded it–his workers pushed him wherever it led–and parked at the top was a tiny trailer, Lorenzo’s home away from home. The place was the stuff of dreams. “Now,” I thought, “I have seen Xanadu.”
Milam was born in 1933 in Jacksonville, Fla. Polio arrived in 1952, and he was sent to a charity hospital because it had the only hydrotherapy pool in the city.
“It was a desolate place,” says Milam. “Fifty kids in the ward, very primitive.” Six months later, he escaped to Warm Springs, the nation’s premier polio treatment center built by Franklin D. Roosevelt.
“It was paradise,” he says. “It was the most glorious place on earth. I met people my age and we’d all just gone through this nightmare. We taught each other how to survive.”
Leaving Warm Springs was less glorious. “It was a disaster for me. I returned to the house I grew up in to try to recapture what I had before–not knowing that it’s impossible to do that. I was trying to be with my friends and to be with my family, who were as confused about all this as I was. I don’t think my friends understood the changes going on inside of me–the hurt, the fear, the anger. I didn’t either. People shouldn’t have to know the truth of their bodies until they’re old enough to handle it.”
After college, Milam developed a fascination for FM radio. During the ’60s, ’70s and ’80s, he helped put 20 or so community, noncommercial stations on the air, many of which still operate under different ownership. (My younger son, who lives in Portland, Ore., tells me that his all-time favorite station is KBOO, one of Lorenzo’s radio children.) He founded the late, lamented Fessenden Review, and recently started RALPH, an online book review magazine (ralphmag.org). And throughout those years he wrote–under his own name and several others–books, manifestos, rants, poetry, stories for this magazine.
At 67, Milam continues his bicultural life. Every year, just before Thanksgiving, the phone rings and it’s Lorenzo announcing that he’s once again headed south.
LM: I think we should talk about what happened to you and to me and to most of the readers of this magazine. What happened to us is that we went from being young to being in the body of a 70-year-old person very, very quickly.
BC: You became old when you had polio at 19, but now you’re going to tell me that when you turned 50 or 60, you became a geezer all over again?
LM: Our bodies do fall apart on us at about that age, and mine’s falling apart now. I used to walk miles a day on my crutches, and I was immensely powerful. But starting about 15 years ago, I got arthritis in my shoulders and it really crimped my style. Shoulders were not meant to be walked on.
By the time 1990 rolled around, I had to learn once again how to use a wheelchair. That was tough for me because I was very proud that back in the ’50s I’d escaped from a wheelchair. As Hugh Gallagher says, “I wish I didn’t know now what I didn’t know then.”
BC: What the hell does that mean?
LM: I don’t know, but he must. It’s a quote from Bob Seger.
BC: So what have you learned about survival as an aging crip?
LM: I once heard Hubert Selby, the guy who wrote Last Exit to Brooklyn, being interviewed on radio. He said that all of our lives are run by love on the one hand and fear on the other. I thought he was going to say love and hate–but no, it was love and fear. I believe that. And I think one of the ways we are able to survive as crips is by trying to get our fear down to manageable proportions.
All disabled people know fear. We know that we’re very vulnerable. We know we’re going to get more and more disabled and we’re going to get more and more dependent and we’re probably going to get more and more scared. And how we handle that is the key. How do we handle being an old, scared geezer?
And I think it goes hand in hand with the fact that we are angry. How do we handle our anger in such a way that we don’t turn it on ourselves? Or that we don’t use it to destroy our friends and family?
We all were taught at a very young age that to handle any problem, you have to beat it. Well the trouble with that is that disability is not something you beat. It’s something you live with day and night; it’s the gift that keeps on giving. It’s always there, and it always will be there and it will never stay the same. And when we learn that, that’s our biggest victory.
BC: Do you have a 12-step program?
LM: No, but I can tell you what’s worked for me. Consumer Reports put out an article that said that what we should do when we get to be geezers is keep our minds active. One suggestion was to play video games, so I played video games. Another was to learn something new, so I taught myself HTML, the language of the Internet. Another suggestion was to learn a new language, so I’ve forced myself over the last 10 years to learn Spanish and to deal with people from a different culture. And that has kept me going.
BC: Learning HTML was the beginning of RALPH. Why does it have that stupid name and how has it affected your life?
LM: Tell that to Ralph Nader. RALPH is the Review of Arts, Literature, Philosophy, and the Humanities. When I was in school, “to ralph” meant to do what we always did on weekends when we drank ourselves into blind insensibility. To prove that we were men.
Right now I’m sitting here with 500 books around me. I get them for free because RALPH is an online book review magazine. It means that I’ve found a whole new career for myself and I love it. I get to read all the time and I get to think about these books and be real pissy about the ones I don’t like. Learning HTML sounds sort of technocratic, but the truth is that the Internet has given me a way to expand my horizons by running this magazine.
BC: But who can afford to start a magazine?
LM: You know how much it cost me to set this magazine up? I had to have a computer, like 73 percent of the people in the United States now have, I had to teach myself HTML, which I did with a book that cost me $20, I had to pay the fees to be online, and you’re saying you need money to do this?
BC: When I met you in Oaxaca in the early ’90s, I was impressed by how comfortable you were relying on your workers, and how much affection there was between you. It was so different from people I know who are stuck in some depressing apartment depending on unreliable people who are sometimes even dangerous to have around. And so many of us feel that independence is the big issue and the only issue. How did you get past that?
LM: In the early years running those radio stations we had a lot of volunteers. That taught me how to get people to do what I wanted, without being authoritarian and still creating friendships in the process. So when my body began to go out on me, it was a matter of accepting the fact that instead of having people go out and tape programs I was going to have them help me get into bed or buy groceries. The transition really wasn’t that difficult.
When I first started living in Mexico in the winters, I hired on a couple of workers. I didn’t know them from Adam, didn’t even know their language. They weren’t trained PCAs. They were just guys who needed work.
Soon they started to be more than workers. They were my teachers–teaching me a new language. They taught me about their lives, about growing up poor in one of the poorest parts of the world. They taught me about having eight or 10 brothers and sisters all living in a two-room shack in the sticks.
Now, when I’m in Oaxaca, I have four or five people who care for me. The wages–by American standards–are pitiful, but my workers are good. They get me up in the morning, help me to bathe, get me into my car. We go to the public market, and have lunch together. In the evening, we cook and eat together, and then they get me to my bed. You might say that they are my PCAs, but I think they’re more than that. They are my buddies. Their lives are my life. I’ve watched them grow and change and get married and have families and I’m a part of that.
I am now godfather to their sons and daughters–some named “Lorenzo” for the boys, “Lorenza” for the girls. When their kids are sick, I help with medical bills. When it’s time to get them into school, I help with uniforms and books. When my workers are in trouble or fighting with their families, I talk to them. When they’re sad, we’re sad together; when they’re happy, I am too. They are the family I never had when I got out of the hospital.
What pleases me most of all is that the culture is not unlike the United States from 50 years ago. They’re people who only recently have begun to watch people murdering each other on television, so they’re innocent of the world of violence. And they have a deep kindness, a sort of essential humanity that I no longer see as much as I once did in this country.
LM: Where I live in California, there are a hell of a lot of Spanish-speaking people who are looking for a job and can’t find one because there’s nobody who can talk to them. We gringos are very harsh on people who don’t speak our language. By learning Spanish, I’ve been able to find people to work for me that other people wouldn’t hire, just because of the language barrier.
BC: Communication is more than just knowing the language. I suspect there’s more to it.
LM: Honesty. When I think of the things that made up our generation, there were the Eisenhower years, which I think were very repressive psychologically and emotionally, then we got to be hippies and drop acid and see God. But concurrent with that was the group therapy movement. We got together and trashed each other for 12 or 24 hours at a time. The residue of that, I think, was learning how to spot other people’s bullshit, to see other people’s–and our own–bullshit. Crips need absolutely outrageous naked honesty. Honesty that’s so profound that it makes you want to lie about it. And I think that along with religion and the need to be curious and constantly learn new things, honesty has been one of the keys to my survival.
BC: What was that about religion?
LM: I was very scornful of religion for many years. Now I see how vital it is for my support in my old age. Christian religion really does befuddle me, because so many Christians seem to have such a deep loathing for the message of Jesus. The violence, the willingness to indulge in capital punishment, the willingness to go to war, the willingness to bear arms–I don’t see that as being very Christian. Almost by default, many of us have had to turn to other religions.
Buddhism has been very important for me. I don’t profess to be very wise about it, but it’s become a guide for me because one of the key tenets of Buddhism is that you have to be kind to everybody. That’s a key part of getting along with the people around you who you’re dependent on. Be kind to people and most of all be kind to yourself. If you’re not kind to yourself, who’s going to be kind to you? And we learn to utilize such things as meditation. If we can just shut off the babbling mind for a few minutes, it’s such a help. Then when we’re totally incapacitated, we’ve got something to fall back on which is the psyche, the magic that lies inside of all of us. That’s the thing that will make it possible for us to survive until it’s not necessary to survive any more.
To me, it’s like the fourth stage of life for Hindus–leaving your family, leaving your possessions, leaving everything behind and going into the wilderness and trying to figure out what it all means. That’s the last stage of our lives, and I like that. I think that’s something we should all do. I’m too scared to give up my car and my house and take up a begging bowl, so I’ll try to do it while I still have these comforts around me. But I do think leaving my culture, as I did 10 years ago, getting so deeply involved in another, is one step on the way.
BC: Do you think people with disabilities have anything to offer nondisabled people who are aging?
LM: Our experience is something that most of the world doesn’t have until they’re 70 or 80, and we can teach them about that. We can help people who don’t know what it’s like to have a body that doesn’t work according to expectations. We’re also masters on what disability does to the psyche. One of the big lessons we can give to people is that it hurts, and yet there’s a way out. And it ain’t suicide.
BC: And when you’re 80 or 90?
LM: I don’t look forward to being really, really old, but I have a few more sticks of dynamite in my backpack to throw before they lay me away.
BC: A bomb thrower to the end. How old is “really old”?
LM: I used to think real old was 35. Now I think real old is 85.