Every summer for the past 100
years, Cradle Beach Camp has hosted children with disabilities. It offers them fun
in the sun on the shores of Lake
Erie in western, upstate New York.
In recent years, even children with very complicated health issues have been
able to enjoy the Cradle Beach experience. Sophisticated medical treatments and portable
equipment unshackle them from home and hospital.
The staff also does everything
it can to accommodate the children’s medical needs. That enables them to play
ball outdoors, swim in the pool, boat in the lake and sleep under the stars.
(In the interest of full disclosure, I was a camper, counselor and am now a
member of the Cradle Beach board.)
The challenge of caring for the campers’ physical needs can be daunting. Some,
especially those with severe autism, require one-on-one care and supervision.
Many need help getting dressed, eating, negotiating the grounds and engaging
in the daily activities. Their needs are a 24/7 responsibility. And that’s just
for a brief camping session.
Now, imagine what it must be like for parents who care for a child with severe
disabilities. They, too, have a 24/7 responsibility. But their responsibility
lasts for decades.
I thought of the children at Cradle
Beach, and their parents, when I read about Ashley, the 9-year-old with
severe disabilities who underwent medical procedures that would stunt her
growth.
Predictably, a controversy erupted over whether Ashley’s parents, and the
Seattle doctors who treated her, had the ethical right to remove her uterus and
breast tissue, and to give her large doses of estrogen so she would not grow.
According to news reports, shortly after Ashley’s birth, she had feeding
problems and showed severe developmental delays. Her doctors diagnosed brain
damage. She is unable to walk, talk, roll over, sit up or hold a toy. Her
parents told reporters that she is alert and smiles. But she doesn’t make
sustained eye contact.
Ashley is cared for at home. The medical treatments were performed to keep her
at a more manageable and portable size. And
they would prevent, the parents said, physical problems like bedsores, which
can result from being in bed most of the time.
Let us at least agree that
there are no easy answers for Ashley’s parents and the thousands of other
American families in similar situations.
However, it would be a shame if the complicated — and unique — ethical
questions surrounding Ashley’s care deterred reporters from pursuing the larger issues
affecting families who have children with severe disabilities.
Their personal challenges are
enormous and newsworthy.
Their children require, on a daily basis, costly and complex medical care,
medications, equipment, specialized educational settings and support systems.
These families are under great financial and personal strain to provide the
extra care their children depend on. And
the parents still have to find the energy to go to jobs outside the home, care
for the emotional and physical needs of their other children, manage the
household and find time to sleep.
They become masters at working the medical, insurance and educational
bureaucracies. They learn how to apply for aid from state and federal agencies.
But the money is never enough to cover their children’s needs. And the services
that would help often are not available.
Profiling families with children who are severely disabled creates compelling
journalism.
These stories examine the
social fabric of our communities. They focus on the quality of health care and
education.
Few of us have the life-and-death
challenges that these families cope with every single day. Few of us have to
work so hard to keep our children healthy and functioning.
These parents don’t want the media to feel sorry for them — or canonize them —
for taking care of their children, the mother of an adult child with Down
syndrome and other disabilities told me in an interview last year.
But they do want reporters to
shine a light on how many hurdles they have to jump just to get the medical
care and services their children require.
They would like the media to
explore why more services aren’t available, and why basic necessities like
medical equipment cost so much.
They live in our communities. They understand the stresses that Ashley and her
parents live under.
Their stories, even without
the highly publicized ethical dimension, also deserve to be told.
