Much worse, though, was having to get a voucher from Welfare to collect a charity parcel from Loaves and Fishes or Saint Vincent de Paul, a few canned goods, a block of cheese, or a bag of stale baked goods. There I’d be, along with the rest of the permanently indigent, lined up in the rain for a handout. I only let this happen four times in ten years. Mild starvation was preferable to such utter humiliation.
So I was very motivated to make it big in the world of cartooning. During my first two years in the national market, I made five thousand dollars. When those first checks started to arrive, I was ecstatic. I took off downtown and bought the first decent-looking clothes I’d worn in a decade. I paid bills, bought some food for the house, got a haircut. I got things cleaned up and taken care of for a while.
But with modest success came modest fame. Stories about me appeared in both local papers and on all three network television affiliates. Welfare noticed. Shortly I received a letter informing me that I would lose all my benefits unless I paid that money over to Welfare. They didn’t say when; they just hung the threat over me like the Sword of Damocles. Somehow, I wasn’t as enthusiastic during the third year of my national career.
Uncertain as any artist’s life is, I’m pretty confident that I can make my own living if I am given the chance. Not just food, clothing, and shelter, but even the special expenses of a quadriplegic could be paid out of my own pocket. What a victory that would be! My wheelchair, a $5,000 item, is pretty well used up in two years. That’s over $200 a month. Repairs and maintenance add another $75 or so. Then there’s the electric bed, also $5,000 but with a lifespan of four years, $100-plus a month. Urological supplies and medications, $200 to $300 more. And $800 for attendants. That’s an unavoidable $1,475 a month for bills that are just not there for able-bodied people. Yet I know I am capable of it.
But even then, I’d be licked, because I would have lost Medicaid. No private health insurer I’m aware of will sell a policy to a quadriplegic, and no wonder. I am certain to need hospitalization from time to time. My body has to be tricked into continuing as it is through a regime of continuous therapy. Not all systems are “go”: I can’t regulate my internal temperature. On a really hot day I have to dart from shadow to shadow and from water fountain to water fountain, like a lizard, or I’d perish of heatstroke. I’ll always have liver and kidney problems. I am far more prey to skin conditions and infections than is the ordinary person. So, deprival of health insurance would, in effect, be my death warrant.
The United States, almost alone among the developed nations, has no public entitlement for health care. Instead, we have special programs for the elderly (Medicare) and the poor (Medicaid). Anybody with a major disability had better be one or the other. The system, it seems, wants me to stay poor, at least until I get old.
The trouble is, I’m not very good at being a poor person. I lack some of the necessary skills and abilities. For example, once I moved into Section 8 government housing, so I could get a rent subsidy. I had been getting a $40 “exception” for my rent, which meant I could keep that much more of my SSDI payment each month, because I needed a ground-floor apartment within a certain distance of grocery and drug stores. Now my total rent fell to only $112 a month, a big advantage.
I noticed that quite a few of my fellow tenants in the government housing were wearing ski masks. That made me apprehensive. Sure enough, as soon as word got around that the new tenant was a cripple, neighbors started dropping by for a chat—and to shop for anything that might be lying around loose. They stole my stereo, my TV, my VCR, and undoubtedly would have taken my wheelchair had they known how to fence it. An able-bodied poor person would have been able to reciprocate, perhaps by carving the neighbors up with a straight razor. I lacked the necessary dexterity.
To save body and soul, I moved back into a private apartment. Welfare promptly notified me that, since I’d left subsidized housing voluntarily, I was no longer eligible for the $40 rent exception.
A Welfare client is supposed to cheat. Everybody expects it. Faced with sharing a dinner of Tender Vittles with the cat, many quadriplegics I know bleed the system for a few extra dollars. They tell their attendants that they are getting $200 less than the real entitlement and they pocket the difference. They tell the caseworker that they are paying $100 more for rent. Or they say they are broke and get a voucher for government cheese.
I am a recovering alcoholic. I have opted to live a life of rigorous honesty. So, I go out and drum up business and draw as many cartoons as I can; I even tell Welfare how much I make! Oh, I’m tempted to get paid under the table. But even if I yielded to temptation, outfits like Penthouse and Omni are not going to get involved in some sticky situation. They keep my records according to my Social Security number, and that information goes right into the IRS computer. Very high profile and unpauperlike.
Lastly, as a Welfare client I’m expected to genuflect before the caseworker. Deep down, caseworkers know that they are being shined on and made fools of by many of their clients, and they expect to be kowtowed to in compensation.
I’m not being contemptuous. Most caseworkers begin as college-educated liberals with high ideals. But after a few years in a system that practically mandates dishonesty, they become like the one I shall call Suzanne, a slightly overweight cop in Birkenstocks. Not long after Christmas last year Suzanne came to my apartment on one of her bimonthly inspections and saw some new posters hanging on the wall. “Where’d you get the money for those?” she wanted to know.
“Friends and family.”
“Well, you better write it down, by God. You better report it. You have to report any donations or gifts.”
This was my cue to grovel. Instead, I talked back. “I bummed a cigarette from someone down in Old Town the other day. Do I have to report that?”
“Well I’m sorry, but I don’t make the rules, Mr. Callahan.”
Suzanne tries to guilt-trip me about repairs to my wheelchair, which is always breaking down because Welfare won’t spend the money to maintain it properly. “You know, Mr. Callahan, I’ve heard that you put a lot more miles on that wheelchair than the average quadriplegic.”
Of course I do. I’m an active worker, not a nursing-home vegetable. I live near downtown so that I can get around in a wheelchair. I wonder what Suzanne would think if her legs suddenly gave out and she had to crawl to work.
Spending cuts during the Reagan administration dealt malnutrition and misery to a lot of people, not just me. But people with spinal cord injuries felt the cuts in a unique way: the government stopped taking care of our chairs. My last chair never fit. I was forced to sit in a twisted position that led to a series of medical complications. But Welfare refused to replace it.
Each time it broke down and I called Suzanne, I had to endure a little lecture. “Didn’t that break down last week? Are you sure you’re not being a little hard on that chair? I just don’t know if we can go about fixing it. Our budget has been cut, too, my friend.”
I learned to curb my natural sarcasm on such occasions. It got me nowhere. Suzanne had undoubtedly been told to hold repairs down to some arbitrary quota. Being nasty over the phone had become part of her job.
Finally she’d say, “Well, if I can find time today, I’ll call the medical worker.”
Suzanne then started the red tape flowing. She was supposed to notify the medical worker, who made an assessment. Then the medical worker called the wheelchair-repair companies to get the cheapest bid. Next the medical worker alerted the main Welfare office at the state capital in Salem. They pondered the matter for days. Finally, with luck, they called back and approved the repair.
During the Carter administration I would call in, and somebody would stop by within an hour or two and fix the chair. Under Reagan I’m flat on my back. I’d give anything for a service arrangement or a spare chair so I wouldn’t have to go to bed for days.
I have even more fun if the breakage happens when I’m out. Flying down the street, I’ll hea
r the telltale clunk. The chair will roll out of control and smash up against a building or just quietly grind to a halt, completely dead. I sit there roasting, or freezing, or getting soaked depending on the season, blowing an appointment with an editor or a friend. Eventually somebody consents to give me a push. Then, if they put my quarter in the payphone, I’m able to call one of the wheelchair repairmen and say, “Look, I’m downtown and my chair is broken, can you do something?”
“Well, we can’t do anything until we get an okay from your caseworker. So try to get hold of her and call me back.”
So I accost another stranger, who dials the Portland Welfare office for me.
“Oh, Suzanne left at two o’clock today.”
“Can I talk to her supervisor?”
“He’s not in the office today.”
“I’ve got an emergency here,” I say, trying to describe my situation. But I am cut off with, “Well, you’ll just have to call back tomorrow, we’re not able to help you at this time.”
So I call back the wheelchair company.
“Sorry, but they’ve really cracked down on us. We can’t make a move until the funding is in order.”
Finally I call Broadway Cab. Half an hour later the lift van arrives and takes me the twelve blocks home. The cabbie pushes me up the sidewalk and into my apartment. He positions me near the urine bucket and puts the phone in my lap. I try to mend fences with the editor I’ve stood up. I try to reach my attendant, who is gone for the day, and the neighbors, who are not home. I sit there until the night attendant shows up at 10:00 P.M. unable to turn on the TV, get a drink of water or move one inch for six hours. Sometimes I get a joke out of it.
Ultimately Welfare must have spent ten thousand dollars fixing that lemon of a chair. It would have been cheaper for them to buy me a new car.
When Welfare learned I was making money, Suzanne’s visits came every other week instead of every other month. She poked into every corner of the apartment in search of contraband Cuisinarts, unregistered girlfriends, or illegal aliens serving as butlers and maids. She never found anything, but there was always a thick pile of forms and affidavits to fill out at the end of each visit.
“Mr. Callahan, you’ve simply got to understand the gravity of the situation. Your cartoon earnings could cause your benefits to be terminated!”
“How do I avoid that?”
“I’m not sure . . . but it doesn’t look good for you.”
“Well, then, who do I speak to about the specific regulations on this?”
Suzanne didn’t know. One day I simply called her superior and asked if he could tell me where to start. “Well, Mr. Callahan, we have reason to believe that you are a bit of a shady character. I’m fairly certain your benefits will be terminated.”
There is no provision in the law for a gradual shift away from Welfare to self-support. I am a free-lance artist who is slowly building up his market. It’s impossible to jump off Welfare and suddenly be making two thousand dollars a month, even if I could solve the health insurance problem. But I would love to be able to pay for some of my services and not have to go through a humiliating rigamarole every time I need a spare part.
Over the years I have learned that Welfare is never, ever wrong. Whatever happens, it is always the client’s fault. It seems that no one at the agency is ever fired for failure to perform. But if I am even a day late sending in the two hundred dollars I must pay them to be eligible for an attendant, I hear about it, pronto. “We will terminate your benefits if that check isn’t here immediately, Mr. Callahan.”
Every letter or form from the agency seems to begin the same way, with minor variations:
“Your benefits are being terminated unless . . .”
“Your benefits will be terminated if . . .”
“Funeral arrangements following your suicide are being made at Murphy Brothers Chapel and your benefits will be terminated unless . . .”
When a caseworker crawls into the sack with her husband, she probably murmurs, “Your benefits will be terminated unless I have an orgasm this time, hon.”
On the other hand, Welfare is perfectly happy sending my monthly Medicaid card on the last day of the month for which it is valid. They don’t mind at all if I have to use my own money in the meantime, for medication or urological supplies, or a doctor’s appointment.
Welfare workers never return your phone calls. They are always out in the “field.” Somewhere there must be a huge pasture with five thousand caseworkers down on their hands and knees, grazing. Ask a question, and you get no answer. Ask to speak to the supervisor, and you’ll get a runaround. If you persist and actually get to speak to the supervisor, he’ll give you the runaround. One of my former caseworkers—not Suzanne—is now a buddy. He revealed that any assertive client was written up in his file as an unstable troublemaker.
Welfare workers have always told me I worry too much. Back before the Reagan administration cut me off Food Stamps, I used to worry about getting cut off Food Stamps. Suzanne told me not to worry. “Besides, you’re only eligible for ten dollars’ worth of stamps. Do you really want to bother filling out all these forms?”
Ten dollars may be nothing to you, dear lady, I thought. They kept shrinking Food Stamp eligibility, though. I think the final rule was something like, “Only those quadriplegics who can roll their tongues and who have one or more female siblings living within five hundred feet of a nuclear reactor will be eligible for Food Stamps.” In any event, I wasn’t even close to eligible.
I do worry about the rules. In Welfare, the rules change constantly. One month I am allowed to make seventy-five dollars, the next month, nothing. I must order my medical supplies once a month. Then, once every two months. Soon again, back to once a month. Recently I learned that my weekday attendant was no longer allowed to work the weekend position. At least one day a week the work must be done by someone else. Nobody wants to learn a complicated and stressful task like that for one day’s pay.
One rule dictates that my spouse, if I had one, could not work as my attendant. As a result many quadriplegics do not marry. This can present a problem, however, for people like my friends Nick Kellog, a quad, and his wife, Nancy, who are devoutly religious and would not live together in sin.
Like any bureaucracy with complicated rules, Welfare constantly creates and eliminates “exceptions” to those rules. Quads often have strained kidneys and need extra protein. So an exception allowed me to keep a little more money to supplement my diet. Then came a note that the exception had been cut off retroactively. I owed Welfare for meat and cheese I’d bought with my own money and already eaten. I volunteered to come over to the office and throw up, but they wanted cash.
Another month they canceled an exception for dental care “except for emergencies.” To save money, they eliminated prevention. By the time my teeth are rotten enough to become eligible, the tab will be enormous. Not long after, they eliminated the exception for any eyeglasses other than the cheap ones that make you look like Admiral Tojo. Cheap frames, of course, break frequently.
When we quads and paras trade Welfare experiences, it becomes clear that we’re all being told different stories. The rules seem to be whatever the Suzannes and their administrators want them to be. There is only one constant: break them and you can get terminated. So I ask questions.
“Suzanne, how can I be penalized by making X amount this month?”
“John, you worry too much about your benefits.”
“But what’s the rule on this?”
“Oh, there’s no rule, it’s just common sense. You worry too much.”
I always feel like asking, “If we were dealing with your basic needs—your phone, your garbage, your laundry, your rent, your food, your attendants—would you be nervous about losing the whole thing with one false move?”
Instead, I go around with a sickening lump of nausea in my gut. Am I going to end up in a federal or state nursing home, reeking of urine? Am I going to end up on the str
eet like the Bakkers? You bet I want to know what the rules are. Absurd as it may seem, my success as a cartoonist makes me feel like a renegade, a culprit. When a check comes in from a magazine, I look at it and part of me says, “Way to go, Callahan! You’re getting published!” Actually it was a rather special honor when I got into Penthouse. They pick up one new cartoonist per year, worldwide. But the other half of me says, “Watch out, motherfucker! You’re cheating the system. You’re cheating Welfare. You shouldn’t have this money. Better put it in an envelope and run it right down to Suzanne.”
Behind every sale lie dozens of false starts, a phone bill that runs $150 to $300 a month, postage, photocopying, art supplies, energy, sweat, loss of sleep, bowel stoppage. I’m supposed to fork my check over and say, “Sorry about that. I shouldn’t have made this money. Here it is back.”
One day Suzanne pinched my spare tire and said, “Well, it sure looks like your attendant’s feeding you pretty well. You don’t look like you’re starving to death.” My diet is mainly cheap carbohydrates because that’s all I can afford; additionally it is very hard for a quadriplegic, especially in his thirties or older, to find ways to burn calories and stay trim.
Such insensitivity is typical. As usual I knuckled under and bore this sneer in silence, reminding myself that caseworkers like Suzanne get that way because of the insane administrative structure they work under.
I know I am lucky to live in a country where I wasn’t thrown out to the wolves when I broke my back. I don’t have to beg with a tin cup, because I did get some help from the government. I want to distinguish sharply the professional and courteous treatment I have always received from Social Security from the inadequately funded and state-administered Welfare program. The plain fact is, though, that until quite recently, when I began to be perceived as something of a minor media threat, Welfare treated me like a bum.
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