The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag. (Paperback)

"Babe, would you geth the egllaatrr buttten? Boy, I must really be beat."

We took the elevator up to physical therapy. By the time we arrived, an incredible imploding feeling had overwhelmed me. I'd lost my source of language. My world was shrinking as if I were falling into a deep well, with my wife's face at the top, getting smaller and smaller. Through the smallness and dimness I could see the panic wrenched on her face.

I'd been saying things like, "raghhitttifrmmdgg, son-of-a-bitch, sssxazzuttt." I could curse with tutored clarity but the rest was nonsense to everyone else. Only I could understand.

I could hear my love's frightened voice: "Please don't try to ask anything. Don't talk. Rest. Stay quiet, please."

qq"Ghrrappl drrrddippll cccoppykk?" I wanted to know what was going on. My head was a can of alphabet soup overstocked with consonants. Gibberish spilled out of my mouth with every r, d, and t, shaking my wife Cindy to the bone.

Cindy and a couple of therapists had stepped outside the partition for a moment, and I could hear their frantic whispers: "Get a blood pressure cuff! I think he's had a stroke!"

"Noooooooooooooo!" My fall was now at light speed.

"Please, oh, please, no; no, not a stroke!" I pleaded within myself.

A neurologist was waiting for me on the medical floor. "Can you count to ten?" he asked me.

"Four, two, nnnii . . ." I responded.

"Who is the President of the United States?"

My brain was a pinball machine. Amid the clanging and clatter, I kept waiting for TILT or Game Over. There was a disconnection of thought and language, and I squirmed and struggled for what could have been a month with the answer I wanted. Then, "Jellybeans. Jellybeans. Jellybeans. NO! Son-of-a-bitch! Goddamnit! No, jellybeans, no, no . . ."

Then the neurologist pulled the plug on me. "What's your wife's name?"

"Mary!" I blurted. "No, no . . ."

God! I'd called Cindy Mary! The mental implosion was complete: I was trapped in a black hole of the mind.

Cindy was at my bedside. Her face faded and cleared, faded and cleared, faded . . . She was trying to comfort me. But my calling her Mary wasn't reassuring either of us. I had a headache and tried asking Cindy (calling her Mary) for some Tylenol, but I had the letters jumbled like an anagram, so when it finally came out, it sounded like Nellyt. Naturally, she couldn't understand, which only served to infuriate me.

"Nellyt! Nellyt! goddamnit, son-of-a-bitchin' bastard!"

My swearing soon turned to crying, and Cindy's eyes were red with tears, too. Was this how it would end, here in the rehab hospital, in the darkness of my mind, my wife looking on helplessly?

Around 3 a.m., the nurse came in and asked me, "Who is the President?"

"Ronald Reagan. Ronald Reagan! Ronald Reagan!"

Oh, God, I thought, "One, two, three, four, five, six, seven, eight, nine, ten! Two times two is four! Four times four is sixteen! A hundred, a thousand, ten thousand! Oh, baby! George Bush! Walter Mondale and Geraldine Ferraro! Eight times seven is 56! Go tell Cindy! GO TELL CINDY!"

My 18-hour struggle with aphasia had been caused by a reaction to an antibiotic.

Irene, a "stroke patient," took physical therapy the same hours I did. Therapists at rehab had to do a lot of doubling and tripling with patients : time's money, you know.

Irene worked very hard in therapy. I was amazed at what she'd accomplished. She was doing it all : bed, bath, in and out of her wheelchair, starting to walk a little, on and off the toilet and I'd presumed her occupational therapy was going well, too.

Irene was quiet. Aphasia did that. It made her understand that others didn't understand; so silence, in Irene's case, was a method of dealing with her frustration. But she followed instructions like a trooper. I now realize I'm prouder of her in retrospect; in rehab, I was always secretly envious of those who could do more than I could.

Irene's husband and son came to visit her often, and I was happy the day I heard she'd soon be going home. But a few days later, I encountered Irene in therapy crying, and refusing to do any therapy. She was headed for a nursing home. She had not had a voice in her fate, though she'd spoken clearly through her actions and accomplishments that she was ready to resume life at home, her own home.

I overheard her husband talking to the doctor and therapist. "She doesn't understand a word I say. How can I care for her?"

"She understands me," the therapist insisted, as if she'd said it before. "Try to be patient with her. Help her."

"Home is the best place for Irene," the doctor told her husband. "It will give her an environment conducive to recovery."

"It's easy for you people," Irene's husband was protesting. "You don't have to take care of her day and night. I work. I can't. I'm sorry."

That's all I heard. All except the sobbing of Irene. It was a lonely sobbing, so much like the loneliness I'd felt, ever so briefly, two months earlier. I knew she was trapped inside herself, with tears the only residual of her hope.

I never heard what happened to Irene. No one seemed to want to know.

Aphasia is a devastating disability. It envelops the mind, giving it no access to the outside world. In this way, it renders the person devoid of any way to call out for her rights. Eventually, without support and understanding, a person with aphasia simply loses hope.

Society treats our disability movement as though it has aphasia. Our words, no matter how clearly we communicate them, no matter how many facts we marshall, regardless of our intentions to participate in mainstream society, for the good of all, are as if spoken clearly only in our own minds. It's as though we're making sense only within ourselves. Society hears it as so much gibberish.

How many times can we say, request, insist, proclaim, scream that we do not want pity; that we do not like the paternalistic attitudes of others; that we are disabled people whose physical disabilities do not make us lesser people; disabled PEOPLE; that we are neither heroes nor villains; that we are alive because we want to be, not because we are simply using life as a waiting room for an appointment with death? How many times before even a fragment of what we know to be true will be understood by society as something more than nonsense?

We become frustrated. Time and again we speak the words, demonstrate our worth in society (when given equal chance), only to be denied basic understanding, the understanding that must precede our being accorded basic human dignity and equality.

How many times have you tried to explain your feelings about disability, only to be greeted by the blank face of solace or bewilderment?

Those of us with the capability to communicate are finding that we can channel our frustrations outward to our brothers and sisters, who really DO understand disability.

I think it's that understanding that defines, for me, The Disabled Community. E pluribus unum is not some cutesy motto they decided to put on our currency; it defines common purpose. How many of us with disabilities have it?

I am often bemused by the statistics that say there are 30 to 40 million people with disabilities in this country.

Someone better tell 25 or 35 million of those folks that they're part of this big group because they haven't a clue. If you use a wheelchair, try going up to someone with a hearing aid and explain to them that you're both in the same community. Good luck!

Perhaps the Census questions should look at our understanding of ourselves as disabled.

Alone, each of us will end up like Irene, trapped within ourselves. We'll end up accepting a lesser existence or not wanting to bother with life at all. That's why it's critical that we reach more and more disabled people. Within our community, the disabled community, we can console, complain to, empathize with and care for one another.

Then maybe we can look back into society's eyes and say, "See, it's you who need help, not us. We will be patient but stern, repetitious in our discontent, angered at your indifference, relentless in our purpose. And in time, with our guidance, you may learn."

It's easy to succumb to futility when your ideas are consistently dismissed as gibberish. But despite the dubious statistics about our numbers, there are many who do understand, who are of common purpose: they are The Disabled Community.

They're out there to help us find peace in our thoughts, and give us a sense of excitement that will, by comparison, make my remembering President Reagan's name seem like a tranquil snooze.

Society has shuffled us around, not trying to understand us, not knowing exactly whom, or what, they're shuffling. If we don't vigorously acknowledge disability to ourselves and forge The Disabled Community, we will never be acknowledged.

August 1985