It was going to be a big night on the town. Dinner at a posh restaurant. A performance of "Cats."
The theater was packed. Our seats -- as far to one side of the orchestra level as you could get -- were in the specially designated handicapped section. Several people in wheelchairs filled the tiny space, joined by able-bodied companions seated in rather uncomfortable-looking portable chairs.
The performance, the music, the costumes were wonderful -- even from the far side of the house.
When we left, though, we made our way to the back of the theater so we could take a last look at the unusual set.
Right smack in the middle of the stage was the largest, fullest, brightest moon I had ever seen.
That moon never rose over my seat, and I was annoyed to have missed a major part of the production.
I wanted my money back.
So goes life in a wheelchair.
It ain't easy, folks, but it ain't that bad either.
There are all the normal elements like a career, motherhood, washing dishes, shopping, going to church, restaurants and even the theater.
There's also too much stress, too little money and not enough time.
But I sit just this side of the norm.
No, it's not because most people pay, say, $40 for a pair of shoes and I have to pay close to $2,000 for a wheelchair that breaks down far sooner than shoes require new soles.
It's the little things.
When was the last time you were studying cake mixes in the supermarket only to have a group of children chase after you and scream: "THERE SHE IS. THE LADY IN THE CHAIR. LOOK AT HER."
You don't study cake mixes? Well, lucky you.
I don't ignore screaming children. In fact I tried to find their parents so we could have a little chat about manners.
On my saner days, I wonder why life can't be just a tad easier.
Other times, I hate every architect who ever designed a building with stairs. And every bathroom where wheelchairs just don't fit.
Let me take you down the alternate route I have followed since 1950, when a bout with polio left me with legs that don't work, and a sense of humor that alternately breaks down or cuts to the quick.
At age 7, when I made my first Holy Communion, I was not allowed to parade up the center aisle with my class.
I sat at the side of the church with my mother.
I'm not sure why. Maybe the nuns feared I would slow up the procession. Or trip someone.
Whatever the reason, I hated them for separating me from the rest.
Fly by 33 years to spring 1990. I am a proud sponsor for a dear friend who is making her confirmation. The ceremony is held in a Catholic church in Kenmore.
I can't attend the sponsors' meeting because it is held in the school, which has stairs.
I cannot parade in with the candidates and sponsors because there are steps into the church.
After being carried up the stairs at a side entrance, I meet the procession as it enters the church, take my place in line and parade up the aisle (I waited a long time to do that).
At the ceremony's end, we parade out the church. I stop dead at the top of the stairs and awkwardly sit there until the church empties.
As the pastor nears, I say: "Shame on you, Father. There should be a ramp into this church."
"Insurance problems," he replies. The auxiliary bishop, standing next to him, pats me on the head.
Forty-year-old women do not like to be patted on the head. And they do not like to be carried into churches.
There is often shame involved in a family when a member becomes disabled.
My Italian grandmother was convinced that God was punishing our family by making me sick.
The theory made no sense to me; in fact I thought she was a bit off-track.
But she decided she had to do something about this so-called act of God, so she dragged me on hot summer nights to the traveling evangelist's road show set up at the edge of town.
Miracles happened there, I was told. People were cured.
When I think of these places, my blood turns cold.
There were screaming and preaching; promises and damnation. People fell to the floor. Others got up and walked. Crutches were thrown in the air. Cancer was cured. The blind were made to see. A lot of money was being passed around, too.
Always, though, the sweating evangelists would stand next to me, very, very close. They would look at me, pass their hands over my head, look deep into my frightened eyes.
Then they would apologize for not being able to cure me.
I hated it so much I wanted to cry, but instead I made myself think about the new dress my grandmother would buy me when we got out of there.
There are many well-intentioned service groups who take handicapped children to the circus.
I went many times and loved the popcorn and cotton candy. I loved the clowns, too, just like all kids.
But that's as far as it went.
The special seats for us "special" kids were right down in front. As close to the action as you can get.
Every time an elephant or horse had to relieve itself, it did so in front of us. In a very big way.
It was awful, and there was no escape.
To this day, I cannot make myself go to the circus.
Not long ago, some co-workers and I decided to have lunch at a restaurant in the Theater District.
We had all dined there when it had a different name and a different owner, and we were anxious to support the new venture.
In its first life, the restaurant had wheelchair accessible tables on the entry level off to the side. When it opened for its second life, the accessible seating was removed. For aesthetic reasons, I'm told.
There are steps down to the tables.
People who use wheelchairs do not want to be carried down stairs in order to dine.
That day, we ate elsewhere.
Meeting friends in Erie, Pa., last summer for a weekend visit, we made arrangements to stay in a brand-new (you could still smell the paint) motel.
I had to be helped up a very high curb to find out at the frontdesk that the motel had only one handicapped room. And one ramp next to that room.
Of course, someone already had rented the room.
We took another room (God only knows why) and looked forward to spending the afternoon by the pool.
There were steps to the pool.
I spent the weekend being hauled up and down. In and out.
I was not a happy camper.
Travel is always a Twilight Zone sort of experience.
I have come close to being thrown off airplanes (insurance risk, my dear). I have had to sit on big blue blankets in airplane seats (in case of an emergency, we bundle you up and drag you out). And, I've been told over and over NOT to sit at the emergency exits. (I do NOT make the seat assignments.)
I have missed connections because they can't: A) find the special chair that carries disabled passengers on and off the plane, or B) find the person who is supposed to do the carrying.
When I rent a car I request hand controls so I can drive it and a two-door model so I can pull my wheelchair into the back seat.
In Washington, D.C., in the late '70s, a car rental firm insisted it could only give me a four-door model. For a week I had to drag the chair in the front seat with me.
Also in Washington, I once attended a congressional hearing at the Capitol. There are a lot of steps into that building, but I was led to a ramp in the back that was built, I was told, for President Franklin Roosevelt.
At the top of the ramp was a revolving door. Wheelchairs do not go through revolving doors.
Cliched or not, a sense of humor is a requirement for survival.
No one, especially me, asked for all these "special experiences." Once in awhile I'd like a break.
Usually, that's not possible.
When I was giving birth to my daughter, I realized that the room was filling up rather quickly with people who didn't seem to have anything to do.
"What are they doing here?" I asked the doctor between contractions and pants.
"They want to see the disabled person -- that's you -- try to give birth," she replied.
After laboring 24 hours, I was in no mood for an audience. And in no position to kick them out.
So they stayed and watched.
I gave birth with no drugs, no Caesarean section and no screaming.
I was hurt when they didn't applaud.
Being a mother who is disabled has opened up a whole new world of wonderful and wonderfully disturbing experiences.
When I was pregnant, strangers did not hesitate to come up to me at restaurants or stores and ask how I intended to manage.
They got a snarl (on my bad days) or a smile (on my good days) as a reply. No pregnant woman, disabled or not, has a clue how she will manage with her first child.
Once the baby was born, the questions persisted.
"How do you manage with the car seat?" they asked as I was putting the baby into the car seat.
"How do you manage to pick her up off the floor?"
I'll figure that out when she gets to that stage, I would say. Right now I'm managing to change her diaper.
Parenting challenges are complex.
Want to take the kid to the park? It is either too hilly, too muddy or too bumpy. But explain that to a 2-year-old.
How about a day at the beach? Wheelchairs don't do sand.
Time to take the toddler tothe dentist? Find one who has an accessible office.
Need a day-care center? Good luck finding one that does not have entry stairs.
Want to send your child to religious education classes? They're in the basement, you are told, and you can't take her to the room on the first day.
OK, so it's not fun. But you find a way to deal with it all.
You go to the park only after long dry spells.
You ask another family to take her to the beach.
You make two dozen calls to find an accessible dentist who also happens to take your dental plan.
And you teach her about religion yourself.
There are days when a sense of humor is not enough. One must act.
I once had to testify in a felony trial. The judge decided that if the jury saw me push to the witness stand in my wheelchair, it might elicit sympathy for my testimony.
While the jury was dismissed from the courtroom, I was kept waiting in the hall. Once they were behind a closed door, I was summoned into the courtroom and told to pull up next to the witness stand.
The jury was then led back.
When the lawyers ended their questioning, the jury was again dismissed and once the door was closed I was allowed to leave.
Yes, I was angry. Enough is enough.
I was called back several days later to testify again, and we went through the same routine. Only this time, when the lawyers finished their line of questioning, I took off like a bat out of hell before the judge could send the jury out.
We won the case.
Isn't that what it's all about?