A Disability Love Story – With Insights into Historic Failure to Cope with Dread Diseases
Dread diseases are complex and, often, horrible. Coping with dread diseases requires massive attention and perseverance. To date, the nations, ngos and corporations of the world have achieved only modest progress towards coping with the causes, effects, costs and horrors of dread diseases.
This NYT story by Jim Dwyer illustrates some of the horrors and a depressing example of a profound failure of institutional coping with dread diseases. The story, however, also is a love story as it tells a small part of the powerful story of a determined and loving couple both afflicted with cerebral palsy. They are Edwin Morales and Noemi Rivera, and one has to marvel at all they’ve done and accomplished. Sadly, she recently died, prompting the story.
The story of Edwin and Noemi includes a small part of the history of how poorly the U.S. – like other nations – has dealt with long term disability and dread diseases. The story includes a "kidnapping" vignette which highlights a small part of the horror of a New York "health care" facility known as Willowbrook. Ultimately, the horrors of the Willowbrook story were told by Bobby Kennedy and others – see this Wikipedia entry for an overview. The telling of the Willlowbrook story was part of the path to civil rights legislation.
Set out below is Mr. Dwyer’s brief telling of Edwin’s parents "kidnapping" him to save him from Willowbrook:
"The youngest of eight, Edwin Morales was put around age 4 into Willowbrook, an infamous dungeon for the disabled on Staten Island. He almost never was moved from his bed. Older children were tied into chairs. By the time Senator Robert F. Kennedy visited in 1965 and publicly deplored the place, the Morales family had liberated Edwin.
“My parents kidnapped —” Ms. Laracuente began, then stopped to steal a quick glance around the funeral parlor. She continued in a whisper: “My mother had a friend with a van. We signed him out for a picnic on the grounds, and when we got there, pulled the van over, threw him in and never looked back. We were so scared the whole way.”
Mr. Morales’s problems fell under the broad description of cerebral palsy, which includes impairment to the nerves and muscles, and in his case, the withering of his right arm and both legs. It was during a long hospital stay for surgery that he met Noemi, who had similar conditions."