Three May Be a Crowd, but There’s No Choice

The other day, a friend asked a question I’d never been asked before: “What’s it like to have attendants?”

She was referring to those people who spend 24 hours a day, seven days a week with me. The men and women who have accompanied me through every crisis, every celebration, every happy, sad or indifferent time for the 20 years since I was paralyzed in a fall.

The one thing an attendant is not is a gorilla in a white coat who wheels sick people around. Nor are they ever-vigilant overseers who tend to my every whim.

As I write this, my attendant is in my living room watching TV and wearing a T-shirt and jogging pants. As a quadriplegic--paralyzed from the shoulders down--I need attendants for all my personal care, to assist me in dressing, cooking, putting in my contact lenses. They drive for me, take notes for me and throw the ball for my dog, Ichabod.

I draw the line at entering data into my computer because I can type 20 words a minute with a “mouth stick.”

And, of course, I draw the line with my fiancee.

If my friend had asked her question right after my accident, I would have grumbled: “Having attendants is hell!” Not only did my first attendants tend to my every physical need, they also had to deal with an angry 15-year-old.

Some of those attendants took to me like it was their calling. Carla, a 16-year-old, prodded me into eating in a restaurant for the first time as a disabled person.

This was the early 1970s when most disabled people weren’t as much a part of society as they are today, so I was convinced that being fed in public would draw much attention. The waitress got off to a bad start by offering us one menu and asking Carla: “What would he like?” I was about to leave when Carla responded incredulously: “Why don’t you ask him?”

Other attendants were not so perfectly suited. One attendant, Dennis, accompanied me on my first date. It was to be a quiet evening at a restaurant. I wore slacks and a sport coat, Lynn wore a lovely pink dress and pearls, Dennis had on old Levi’s and a T-shirt. The evening went downhill from there.

Lynn was very open to the idea of having Dennis along, thinking of him as a chauffeur or personal valet. Lynn and I were quite nervous--who isn’t on a first date?

But Dennis was nervous as well and had an unfortunate way of showing it.

I assumed that except for driving us and feeding me, Dennis would pretty much keep to himself; I was very wrong. He would not shut up! Despite our repeated attempts to quiet him.

In recent years, my attendants have become more like personal assistants--a sometimes awkward relationship where the line between employee and friend is vague. Experts recommend a strictly professional relationship, but I have found that to be impossible. It would be like living with robots. Most often we are pals hanging out together.

Now that I work as an actor/writer, their job description is more interesting. They accompany me to acting gigs. My work sometimes enables me to meet influential people, and I require a certain something extra from my attendants that they aren’t always able to deliver.

Some attendants have taken to the new aspects of this job very well. Victor, for example, was terrific at giving me background on almost any influential person I met. (At the International Special Olympics, he kept me from making a faux pas by pointing out that the woman I mistook for a Kennedy cousin’s girlfriend was Queen Noor of Jordan.)

Victor stayed current on all the latest gossip--who was married to whom, what company owned what studio, and who was No. 1 at the box office.

Other attendants have not been so adept. Before I was to meet Sen. Robert Dole at a fund-raiser, I prompted my attendant, Keith, on how to greet him. I specifically requested he say something like: “It’s a pleasure to meet you, Senator,” or “Nice to meet you, sir,” and shake his hand if he offered. Instead, after I greeted the senator, he turned to Keith, who ignored Dole’s extended hand and said: “So, how’s it goin’?”

I equate living with attendants with what English royalty must go through living with servants: If we don’t get along, it’s like a bad date.

They know everything. They are the first to know of any triumph or tragedy, of any romance or infatuation. God forbid if I ever tried to have an affair. In that way, I suppose, they do keep me honest.

I’ve had some attendants who care only about the money and some who gave back paychecks when I was broke. There were those who accepted that my disability was permanent, and those who thought I was lazy. There were those who were positive I would make it as an actor and those who insisted I couldn’t.

Because I can’t just get out of bed in the morning when I feel like it, I must create a specific time for them to start work. Neither can I stay out late at night without first consulting them. I must consider them before making any changes in my routine.

Ideally, I employ three people: one full time from 8 a.m. to 4 p.m. weekdays, one part time from 4 to 9 p.m. weekdays and one live-in who covers nights and weekends. I can’t be left alone.

Another scheduling concern occurs if I’m away from home when it’s time for the shift change. I must decide whether to drive home to drop off one attendant and pick up the other or stay and pay overtime to the one I’m with.

Holidays create another problem. On Christmas and Thanksgiving, I have a choice of bringing my attendant to my family’s celebration, which makes them uncomfortable, or attending their family celebrations which makes me the outsider. My choice varies, depending on the attendant.

More difficult still is when attendants move on. With some it’s a blessing, with others it has been the most difficult thing I’ve ever done. Saying good-by to a person you’ve been with nearly every day for two or three years can be wrenching.

Then comes finding a replacement. My ad goes in the newspaper: “Attendant wanted for active quadriplegic man,” and I hope for the best.

An ad like that draws everyone from medical students to drifters, from jilted lovers to criminals on the run. I have plenty of experience screening applicants; I’ve met with thousands over the years to find the nearly 125 I hired. I still pick a loser now and then--I’ve been left alone, lied to and robbed more times than I care to remember.

What makes it difficult is that I am unable to pay much. When I get work, I give bonuses, but during the stretches between jobs, my attendants live on very little. The state of California pays minimum wage, nine hours a day, seven days a week. I pay the remainder of the hours with a small special trust account.

Complicating things further are restrictions on my income. The more money I earn, the more money I stand to lose in state benefits. I must either make a tremendous amount of money to pay attendants, or make no money so the government will foot the bill. It’s not an incentive to work.

Over the 20 years I’ve been doing my quadriplegic thing, I’ve been asked countless questions: “What is it like to be paralyzed?” “How often do you charge your electric wheelchair batteries?” “Can you have sex?”

My responses range from “None of your business” to “All night long.” In answer to the question, “What’s it like to have attendants?”: I guess it beats the alternative.

My life with attendants has been a long, interesting, sometimes oppressive road. But along the way I’ve met many unique people and developed enduring friendships, among them: Susie, the woman I’ll soon marry. Victor, who saved me from Queen Noor, will serve as best man.