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They Want to Live, They Deserve a Life

June 02, 1996

It is disturbing to read of the continued ignorance and prejudice that confront those with developmental and other disabilities ("A Life Renewed," by Celeste Fremon, April 14). That Sandra Jensen's worth was judged by her alleged intellectual capability is a sad commentary. It is shocking that, 35 years ago, her mother's physician recommended placing her daughter in a state hospital. Sandra needed the love and nurturing of her family, not the specialized treatment designed for persons with behavioral excesses and deficits, or medical care not available in the community.

The implication that state hospital residents at Porterville and Camarillo have been "reduced to an undignified and vacant state" as a result of their hospitalization is flawed. The residents of Porterville are those who suffered significant damage in their development. They have been either diagnosed as profoundly or severely retarded or have medical and nursing needs that our communities have not been able or willing to serve. Camarillo residents are more generally those whose severe behaviors have resulted in judicial commitment when community agencies have exhausted their resources. Only a small number of those with severe and profound impairment remain.

Programming is focused on increased independence for these patients and their eventual placement within society. State Developmental Center populations have steadily declined for many years, despite a steadily increasing state population. And although, occasionally, some patients are sent back too soon, these occupancy decreases are testimony to the success rate of state and community agencies in returning disabled individuals to their communities.

James R. Teigen

Licensed Clinical Social Worker

Ventura

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Fremon noted that there were 69 heart-lung transplants in the United States last year and 201 people on the waiting list, 50 of whom will die waiting. Of those, I'm sure there are sad and courageous stories equal to that of Jensen.

The beneficiaries of heart-lung transplants should be those with the greatest likelihood of success and longevity. It is simply a triage situation.

Marjorie Mize Le Gaye

Santa Ana

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Jensen is an uncommon woman, and equally extraordinary is the story of her heart/lung transplant and what she and her family had to endure before it took place.

My youngest brother, now 45, has Down syndrome. But he works, loves his job and walks to and from home in all kinds of weather--which can be quite a challenge, since he lives just south of the Arctic Circle in northern Norway. His health has remained generally good, in spite of a stroke he suffered a year and a half ago; he recovered quickly.

Considering Norway's socialized medical care, I know that what Jensen and her family had to suffer would not have occurred there.

There are no throwaway lives anywhere.

Kari Angell Phillips

Westwood

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As advisor to People First of Alhambra, I was delighted to see an article on the self-advocacy movement among disabled adults, who are many and strong. I am a daily witness to courageous efforts such as Jensen's.

My disabled friends won't let this noble effort stop with jobs, decent homes and proper health care. They want relevant education, meaningful work and opportunities to contribute to community and political life.

Dolores Burlison

Artesia

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