Commentary: Focus on 'able' in support for people with cancer

Priest Mario Moronta, right, makes a cross sign on Venezuelan President Hugo Chavez's forehead during a mass for Chavez's recovery in Caracas.
Priest Mario Moronta, right, makes a cross sign on Venezuelan President Hugo Chavez's forehead during a mass for Chavez's recovery in Caracas. AP Photo/Miraflores Presidential Office

Having cancer has helped me understand why a lot of people stay "in the closet" about suffering with the illness.

I've learned that friends, relatives and even strangers treat people with cancer differently. A famous instance is Hugo Chavez revealing that he went to Cuba to have a cancerous tumor removed last month.

Chavez is president of oil-rich Venezuela. He has strived to anchor socialism in that nation and rid Latin America of the United States' meddling. But the pelvic area surgery to fight his cancer throws into doubt his strongman status and whether he can stay in power.

It shows how having cancer carries a huge stigma and labels a person less than capable, less than whole. Until I was diagnosed with prostate cancer, I had been a bystander in how people with an illness are treated differently.

I had learned about such diversity issues from people like Jerry Armstrong and Sybil Noble with the Ark of Friends, an advocacy group for people with mental illness. Also raising my awareness to the stigma were Mark Ohrenberg, then with the University of Missouri-Kansas City Institute for Human Development, and Paul H. Levy, coordinator of Independent Living Services and founder of Whole Person Inc.

They said disparate treatment of people with physical or mental disabilities kept them from getting jobs, living in better communities, getting benefits such as insurance and being able to do what they wanted independently.

People always treated them as if they were broken or incapable. Levy, who died last year, used to telephone and send letters to the news media on the importance of word use about people with disabilities. He was right to do that.

Too often we used such words as handicapped, which stigmatizes people. Levy insisted on putting "people first" so stories referred to "the person using the wheelchair."

Having cancer has enabled me to see how the word "cancer" also triggers others' off-putting reactions. Some examples are:

  • People are overly sympathetic. It's as if folks think a person with cancer is as good as dead. A lot of breakthroughs have made it possible for people with cancer to recover and live normal lives. Some even become more active.
  • Total avoidance. It's as if a person with cancer has a communicable disease and anyone could catch it. Again, it's how people with mental and physical disabilities say they're treated. "Normal folks" don't know what to say or how to act, so they just stay away. It adds to the stigma and makes overcoming it more difficult.
  • Being seen as weak and vulnerable, which is different from folks being overly sympathetic and too helpful. In this instance, opportunists view people with cancer as prey for exploitation. Chavez has to feel this, but on a grander scale.
  • Exclusion. Instead of being included in groups and events, people with cancer get excluded because they're no longer seen as capable of participating or contributing. This is what people with mental and physical disabilities have repeatedly said they experience. They want to be included. They want a chance to prove they can participate and do the work. They just need others to stop treating them differently.
  • Depressing stories. Some people are compelled to share negative stories of awful outcomes of people with cancer or failed treatment options. Such downers don't help people fighting cancer maintain good spirits so they can overcome the negative effects of what they encounter. Again, the same often is true for folks with mental and physical disabilities. They need upbeat people around them to enable and not disable them.
  • Anything less causes people with cancer or disabilities to shrink back or stay in the closet. Instead of revealing how they are overcoming adversity, some may refuse to even seek treatment, fearing the reaction.

    That's not good for people with disabilities, and it certainly works against individuals who might have cancer. It's when people with cancer come out that there's hope for healing. They have to get the right treatment and then minus the stigma be embraced by others' kindness, care and enabling support that the people with cancer deem appropriate.

    We have to let them know that they are as valued as family members, friends, co-workers and people in the community as they've always been.


    Lewis W. Diuguid is a member of The Kansas City Star's Editorial Board. Readers may write to him at: Kansas City Star, 1729 Grand Blvd., Kansas City, Mo. 64108-1413, or by email at Ldiuguid@kcstar.com.