Straight talk from the disabled

Ever a reader of local journalism when we travel, I clipped a small op-ed piece I found in the Washington Post last month. The headline read, “It’s a Life, Not a Feel-Good Moment.”

In it, John Smith, postmaster and writer from Hood River, Ore., expresses his dismay that a university newspaper took up the subject of Smith’s son, Noah, who had been rock-climbing, kayaking, surfing, and paragliding during a 2½ -year hiatus from school.

The senior Smith says he has read dozens of such stories since a freak accident broke Noah’s neck and left him a quadriplegic in 2002. Although Smith says tales of people like Noah are poignant and inspiring, and while he doesn’t want to come off like a “parental ingrate,” he charges the able-bodied – that’s most of us – with defining disability in terms that make us feel good.

Somewhere, he says, there is a life between “living happily ever after in an amusement park of accessible activities” and “an endlessly grim continuum of incontinence and indifferent caseworkers.”

Smith believes that being around people in wheelchairs “unsettles” the rest of us. “The thought that life can change instantly shatters our sense of security and we able-bodied people are repulsed by this vision of vulnerability.”

Darrell Deeds, 42, knows something about this and through his writing has become something of an ombudsman for others like himself. The South Fulton County man was only 8 years old when a series of bleeding strokes took him from an apparently normal child to an adult with a severely twisted body and a nasal voice that is sometimes hard to understand. With 90 to 95 percent paralysis in his left upper body and 70 to 75 percent in the left leg, he uses a cane for balance. He is almost totally deaf in his left ear and blind in his right eye.

With no explanation for his catastrophic medical challenges, he suggests saying he is “paralyzed vertically from a series of strokes.” Darrell’s demeanor is remarkably cheerful, usually smiling, although sometimes a flash of bitterness shows through. He’s working on his autobiography and plans to call it “The Joys of Living.” This in spite of having been laid off from a company he loved.

With typical bluntness, Darrell is a man with a mission when it comes to the way people with disabilities are sometimes treated. He offers to speak on behalf of the 50,000 Americans who are challenged with some kind of disability. New spinal cord injuries – 11,000 per year – are the most obvious. There are also less dramatic disabilities, such as those cardiovascular impairments we call stroke or heart failure, plus multiple sclerosis, fibromyalgia, rheumatoid arthritis, and many others.

Everyone, Darrell says, has some kind of disability. He makes his case: “Who on earth is able to run a one-minute mile? No one has the ability to run a one-minute mile, of course….Therefore everyone has a disability.”

He believes the able-bodied society fears reality and labels the “society of the physically limited” disabled or handicapped.

“We hunger for only two things,” Darrell writes. “The first would be acceptance,…your understanding that life is fragile and filled with many painful realities. You cannot run from them nor hide from them. They will always be there.

“Those of us who make up the society of the physically limited understand that we are the true representatives of reality, struck head on.
\ Maybe we have lost a limb or two, have become paralyzed horizontally or vertically, or otherwise limited.”

How, he asks rhetorically, can the able-bodied conquer their fears and accept the physically impaired?

“This is how: We want you to put forth the effort to understand that although our bodies have been weakened physically we are still human beings, just as you are. We have character, personality, wit, along with many strengths you may not recognize.”

Darrell believes these strengths may be developed through the power of the human spirit.

“Those who are challenged more get more out of life,” he says. “If you would offer your acceptance you would learn one valuable lesson: You do not know what you have in life until you lose it.

“This is why we want to be known as physically limited people, not disabled or handicapped people. This is why we want you to focus on the individual, so that you can see our strengths and disabilities. If you concentrate on our limitations you will only see our weakness. The same goes for those who are mentally limited. They are not retarded; they are just mentally limited.”

John Smith is saying much the same, learned, no doubt, from his son. He is bitter about the Christopher Reeve Paralysis Act which was introduced in Congress in September, 2002. It would have enabled research groups to share discoveries and work efficiently together.

When Noah broke his neck three months later, the legislation was sitting in committee, and is still awaiting action.

“An audience’s desire for happy endings is reasonable,” Smith writes. “I’m okay with that. I want them myself. But the truth is that these stories do not end My son’s life goes on. I try to understand it in the context of what he shares with all who are paralyzed. They are not necessarily inspirational, but they are, every last one of them living extraordinary lives.

“They deserve something other than just a feel-good story.”