By Attorney Mary McKee
The man asks me again if I know what I am doing.
“Hey! I’m talking to you!” he says.
“Yes, I know what I’m doing.” It is the only answer I can give. When I talk, I talk slow. This worries people.
“Hey, is he okay?” The man looks at Gary. Being okay is very important. “Yes!” Gary and I say this at the same time.
This is one of the opening scenes from Particia Wood’s novel, Lottery. The not-so-omniscient, first-person narrator is Perry L. Crandall (the “L” stands for lucky), a 32-year old man with developmental disabilities, here fixing a fender on a boat at Holsted’s Marine Supply Store in Everett, Washington, where he works for Gary Holsted, a friend of his grandparents.
I read books in the car. Wait, that doesn’t sound safe. I listen to library books on CD during my commute between Oberlin and our Cleveland and Sheffield Village offices. As an English-major-turned-lawyer whose exercise was for years pretty much limited to underlining, highlighting, asterisking, margin-dotting, and otherwise marking up text (when I wasn’t working in the dining hall or waiting on tables), I have to admit that it disturbs me to “read” a book without a pen in hand, instead strait-jacketed to a steering wheel. It’s positively unnatural. Doesn’t stop me, of course.
Bought the book for our waiting room, though. It belongs there.
Yes, there’s a real lottery prize in Lottery. A big one. Twelve million bucks’ worth. But when you finish, you’re left thinking more about one’s figurative “lot in life” than about the money.
Gram, who raised Perry, tells him: “I’m fortunate I own my own house, damned fortunate I have you to help with expenses, and goddamned fortunate your grandpa worked his ass off then had the courtesy to drop dead without lingering.” Lingering is a word that means costing a lot of money to die. She says she hopes she does not linger. She is damned fortunate and I am lucky. Gram says we make a good pair.
Gram said in an emergency to call the number 911 on the phone. It was our drill and we practiced. “What do you do if I don’t talk to you in the morning or can’t wake up?” she would ask. “Call nine-one-one,” I would say. “What do you do if I am lying on the floor and don’t move?” “Call nine-one-one,” I would answer. That morning, she did not wake up or talk. I called 911. …
John swore when I told him on the phone. Then it sounded like he had a blanket in front of his mouth. I heard him talking to his wife. “What happened?” “It’s Perry. Gram died.” David comes to pick me up in his car to go to an arrangement place. Everybody talks except for me. I become a problem. This is a real problem. That is what I hear them say. What are we going to do? What are we going to do about Perry? I hear them ask. It’s going to be a real problem now without Gram, they say. I am it. I am a problem.
At Hickman & Lowder, we often meet the siblings of adults with disabilities only when mom or dad are getting up in years and the parents, and the other kids—and in the roughest of cases, the adult child with disabilities himself—start to worry about what will happen if he, now pushing 50, having already outlived Dad, actually outlives Mom. Then what? Or just outlived Mom last night. Now what? I kept thinking of how Perry either resembled or didn’t resemble our wide range of special-needs clients.
Perry resents the term “retarded” and focuses on his “number” being 76, not 75 or 70. “Challenged. I like that. We are all challenged. Challenged means you have obstacles to overcome.”
Gram observes that being slow is like being old, and it’s everyone else who is too fast for their own good. “With Gram gone I have to not forget. Not forgetting is hard. I have to work hard to not forget. Remembering is different than not forgetting. It is the opposite of. Remembering is like a little movie that comes back to you. It is something special and unexpected. Like when I remembered the first time Gramp took me sailing. A little movie. Not forgetting is business. Like you have to not forget that your laundry is in the dryer or not forget to pay your bills. Remembering is fun. Not forgetting is hard. Writing helps me to not forget.”
I still have to do my wash on Wednesdays, but it is only my clothes and not Gram’s. I only have two small loads. I used to do four loads. I would have sheets, towels, Gram’s underwear, and her pajamas. Those are the whites. My shirts, jeans, and Gram’s dresses are the darks. Thinking of this makes me sad, so I have to cry again.
“My clothes are dirty. The washer is broken. There’s water all over the floor. I have nothing to wear. Gram is dead and there’s no one to help me.” I cannot stop crying and get the hiccups. “You let me know when you need help like this. You hear, Per?” Keith has to clear his throat three times. “You getting a cold, Keith?” “No, Per.” Adjust means that you have to change because things are different. When things are different, even though you do not like them, you have to adjust. This is true.
Social Security is a wage replacement program. Not that it completely replaces a paycheck (the average benefit is only about $1,100 a month), but it is intended to recognize the effect on the wage-earner and his or her family when the worker drops out of the paid work force because of disability, retirement, or death. If the family never depended on the wages of the stay-at-home mom, or at least hasn’t depended on her recently, in the last five years or so, then the family may feel a loss if she becomes disabled or dies, but it is not the loss of wages they will feel. This is a concept called “date last insured” and since they don’t teach you about it at school or on the street or during your career, it’s a surprise to many people. Similarly, consider a wage-earner on whose paycheck a spouse or an adult disabled child has depended for years. When that person leaves the work force, not only will they miss their wages, but so will everyone who has been depending on them and their income all along. Maybe a spouse (often having worked, unpaid, at home), children under 18, disabled children of any age.
So when Perry’s Gramp dies, right there on the dock, “he dropped like a stone,” they said, I can’t help but think that Perry might have become eligible for what are now called Childhood Disability Benefits (formerly Disabled Adult Child or DAC benefits). (Yes, this is how it is to be me. I am not very good at compartmentalizing.) Except that his biological parents were still wandering the globe, alive and well (though not working, the scoundrels). Turns out neither of Perry’s parents was equipped to care, or maybe cared enough to care, for their son, so that unexpected “second time around” fell to his grandparents. Survivor benefits do not automatically reach down an extra generation, even if the wage-earner has raised the child from the start. Good to know before you embark on that adventure they now call kinship care. As if anyone does this on purpose. I represent grandmothers my own age who testify, at their own disability hearing or at their grandchild’s SSI hearing, that they belong to neighborhood and church groups for grandmothers raising grandkids. Like Perry, those kids are lucky. Or luckier than they would be without their Gram.
One devious relative even went so far as to try to bribe Perry to sign documents with a case of Hershey’s kisses, his favorite (and mine). Not just a bag, or even a jumbo-big bag. A case. (Reminded me of the time years ago, before everything came in a dark-chocolate version, when I wrote to Hershey’s with my idea for “Kisses in the Dark.” Got a snippy form letter back from their marketing department assuring me that “all ideas are generated in-house, thank you very much.” I wasn’t expecting any money, but a case of kisses, now wouldn’t that’ve been something. Oh, well. At least they made them purple.)
“Careful,” warns Gram, first in person, then, after she dies, only in his mind. “Don’t be smart,” she warns (just like my own Gram), when he’s impertinent. When “evil arthritis” confines her to the kitchen chair and she starts to supervise his cooking, he reads the cookbook as faithfully as he does his dictionary every day, pausing to ask her, “What is ‘braising’?” “Cooking with liquid.” “Why don’t they just say that?” “Don’t be smart.”
Whether the case involves developmental delays or mental health issues, childhood disability benefits on the parents’ earnings record or straight Social Security Disability/SSI benefits on the individual’s own earnings record, I’m finding these cases harder to win in recent years. Maybe it’s because we didn’t used to need people with developmental delays and older workers to stay in the work force as much as we do now. Maybe we as taxpayers are trying to squeeze as much work (and Social Security taxes) out of those under 65 as we can to support the waves of retiring Baby Boomers. But as one father said to me some weeks ago, “It seems wrong to penalize the children of parents who do push them to work.” Social Security law reflects the idea that adult children who are able to work competitively and earn enough to sever their dependence on their parent, the main breadwinner in the family, must make their own way in the world. For those who obtain CDB or SSD/SSI benefits first and then try to work, the system’s response to their work efforts is kinder, more generous. Social Security eligibility guidelines and work incentives are designed to make benefits hard to get and easy to lose. I’m sure Perry in the book was making SGA (substantial gainful activity) levels (now $1,000/mo.) at the marine supply store where he worked, and that only by documenting the special accommodations and supports provided by Keith and Gary, the friends of his grandparents, might he have been able to draw Social Security benefits (on his own earnings record) and—something the book’s emergency room scene is silent about—health insurance. After all, not everyone wins the lottery.
“I like working with Gary and Keith at Holsted’s Marine Supply. But I do not know if they will make me stop working. Maybe there is a rule when you win the lottery you have to give your job away to someone who needs it. I hope not.” I have clients that we (the parents or the siblings and I) have to reassure about their job, their bus-ride, their life, not changing if we “win” at the disability hearing.
“You gave the money to them? Why?” the TV interviewer asks Perry. “Because I didn’t need it, and they did,” I tell her. And he really doesn’t. He has his job, his share of the business after he shows just how differently abled he is, and his secret savings account (thanks to Gram’s advice both before and after Perry calls 911). “When a person dies, their body goes away, but their voice stays. I hear Gram every day. Every day I hear her voice.” And Perry has true friends and genuine supporters, better than any group home or waiver program could provide, and listening to the CD, I’d wish we were all in the book-world, I’d wish all people with disabilities could enjoy that kind of life…. Then—traffic noise suddenly louder than the book narrator—and I’d have to quick get over so as not to miss my exit!
“I can help you make a will,” says the only good lawyer in the book. “Who would you like for your beneficiary?” “My what?” “Who do you want to leave your money to when you die?” “When I die? Am I going to die?” I look at Keith after I say this. I am worried. “Do you die right after you make a will?” We encounter these issues all the time at our firm. It’s called “capacity,” in legal jargon. Testamentary capacity. Perry had it. Even if he didn’t have the timeline quite right. When a guardianship is unnecessarily restrictive, financial and health care powers of attorney, and even a will, become the responsible way to go, if the person is “okay.” Don’t quote me on this, every case is different, every person is different, but in my experience, if the person insists he’s okay, or worries about whether other people think he’s okay, or cares about whether he really is okay—he’s probably okay. Okay enough to decide who should get his stuff or make decisions for him if there ever comes a day when he’s not okay.
Where do we go? Where do we go when we die, Gram? She grabbed me tight to her chest and said, “We go into wind and rain. We turn into the sea and fog. That’s where we go, Perry. Each time it rains, think of Gramp. Each time the wind blows he will be there, and when I die, I’ll be there too.” I think that is true. I hear drips on the roof as it starts to rain. I think of Gram. And I wait for the wind to blow.
Perry inadvertently gave his power of attorney when they sold Gram’s house so he wouldn’t have to write his name 32 times. But after he wins the lottery and his friends rally around him and bolster his independence whenever they can, he resists giving away his “Power” again (like the Hulk, he says) to his scheming relatives. He is much too high functioning to be found incompetent or belong under guardianship, much to the dismay of, dare I say it, all the lawyers in the family, all greedy or knee-deep in debt. “My cousin-brother John said lawyers get people out of trouble. Gram said lawyers get people into trouble.” Later in the book, he recalls her saying, “A trust is something you don’t, Perry. You remember that.” (Uh oh. Maybe I won’t leave the book in our waiting room after all…)
Perry has such a solid, simple way of expressing his ideas. “I am responsible for Gram’s house until it is sold. … Being responsible means that you work for a thing that you love.” The man who read the book aloud on CD, Paul Michael, really captured the halting, contraction-less language so many of our clients use, the way our one neighbor in Lyndhurst, where I grew up, sounded, exactly the way I imagine Perry’s voice. A little mechanical, deadpan, but sincere. “Gram said I was suggestible. She always called me lucky and honest. Being honest means you don’t know any better.”
“Gram always said the most happiness you can collect is when you give things to other people that you love,” says Perry. Yep. Like that quote from Erich Fromm’s The Art of Loving about how poverty is so degrading partly because it deprives the poor the joy of giving. That’s why I do what I do and try to help people get their disability benefits. And to feed my family, which gives me joy.
After Perry’s family finds out that he won the lottery and starts pestering him for “checks” and his Power, Perry observes, in his quizzical way: “I did not need to be taken care of or watched when Gram died. But now I do. …When people are “concerned” about me, it means they want a check. …My family makes me uncomfortable when they call. They ask how I am, what I am doing, but before I can answer, they ask about the money. I hear something that sounds like trustmutualdividendsandinvestintaxshelterannuities. It is one long word and does not mean anything to me.”
I like the word the kids use now: “That’s so random.” It makes me think of Patricia Wood’s book now when I hear it. Perry, more from my era, would always comment: “That is so cool.” Whether marveling over Cherry’s hair-dye and tattoos and piercings, or wondering about “sad pills,” or watching Gram write “WE DON’T LIVE HERE ANYMORE” on the envelope from the school. Perry’s trusted friend, Keith, a Viet Nam veteran (who calls his truck Yo because the To and the Ta are rubbed off the tailgate), christened his boat “Diamond Girl,” from that Seals & Crofts song I remember from way back, before the lottery tickets I didn’t even know I held began to yank my own life in directions I could never have foreseen. Random. Fifty-plus years old, finding a way to combine my love of fiction with my love of the law with just plain love of life, such as it is. Imagine that. All leading up to this very minute—having been taught proper typing by my own mother at summer school at Hawken—at which my right ring-finger leaves the period key.