Lisa Blumberg's "Playing Cards at Boston Children's Hospital" , (May/June) was wonderful and the timing was perfect. I was beginning to think I was the only one who has had horrible experiences at "great institutions" of "healing" (or at least that's what they want you to believe).
I thought your Jan./Feb. article "In Thrall to the Medical Model" was right on target as well. However, I was saddened to read Katheryn J. Ware's response in the March/April issue.
Ross Sweat's response to Ware in the May/June issue was well stated. Clearly our nursing institutions of higher learning continue to graduate nurses who don't know much about disability (I don't know of any research that suggests that having a child with a disability makes one an expert on everyone else's disability and the discrimination that disabled people routinely face in the community).
Most nursing schools that I am aware of continue to use "simulation training" as a primary method of teaching students about disabilities. The arrogance of that method is disturbing. Having gone through three nursing degree programs (BSN, MSN, and Ph.D.), I've yet to see anyone with a visible disability -- or anyone who identifies as having a "non-visible" disability -- in any of my programs. The message is that disabled people are patients, not peers or equals.
Nurses and physicians never seem to want to acknowledge that they too are high on the list as perpetrators of abuse and neglect for many people with disabilities.
Lisa Blumberg's article spread a greatly needed message: institutions and organizations, large or small, are heavily influenced by their own internal cultural bias. It is very helpful if consumers understand that right up front.
The most well-intentioned professional will have difficulty seeing the bias in her own organization if it is consistent with her own education and training. Certainly the source of funds will suggest possible internal cultural values. Within the organization we tend to repeat behaviors that are rewarded. It is good for all of us to be aware of that fact in our daily lives.
ROLAND P. BLAHNIK, President/CEO
Goodwill Industries of Kentucky
Today's witches and the right-to-die movement
Kind-hearted people like Dr. Kevorkian and Janet Good are today's witches ( "Self-execution for witches,", (May/June). Other physicians or family members who have secretly helped patients to avoid slow, painful dying, are the hidden witches. And I suppose people like me who work for legalization of help in dying are also today's witches, in the minds of some.
I am just a harmless old lady with a strong desire for personal freedom, for myself and everyone else. Others in the right-to-die movement are like me, fighting for freedom for everyone. There is no sinister plot against disabled people. There is no link to the Nazi Holocaust. That took place in a dictatorship, which the U.S. is not. It was an attempt to eliminate certain whole groups of people, the Jews being the largest. There are Jews in the right-to-die movement.
What did the accused witches of old do to make them so feared? Is there any evidence they did any harm? Today there is no evidence of harm by the helpers of suicides. Adults must have the right to determine if an action is harmful to them.
I am sorry that many disabled people are so fearful of the right-to-die movement. No fear is pleasant. Just remember that some of us fear being forced to wait out a long, painful dying. Palliative care, you say? It just doesn't work in some cases!
FRANCES A. GRAVES
Isn't there another choice?
Your magazine over the years has helped me to raise my son to be the young man he is. With that in mind, I have to say, "Excuse me if I quote you out of context, Kate Flaherty, but do I understand you when you say a couple is 'ripped apart by the news their child has Trisomy 12, 18, or 21,' and 'these babies are not "disabled" as it's commonly understood' ("Letters," May/June).
Couples are ripped apart not because their child is "disabled" but because we have a system that insists on medicalizing their care when unnecessary, and offering little positive affirmation and support. Parents perceive their unborn child as a burden placed on their shoulders alone, and are given a choice between keeping or aborting the child. They must make a decision without being given the opportunity to fully understand the dynamics of parenting a child with disabilities.
If the family values human life with all its irregularities, then possibly the child will be born. If the family sees the vague promises of a full life including a family member with a disability as too remote, then possibly the child will be aborted.
But isn't there another choice? What about the child who fights for life and wants to be born? Can't these children have adoptive parents? Why do we give the decision-making power to the parents as to whether a child should be born? Why can't the viability of a sustainable quality of life be ascertained by objective sources? Why can we not insist that the parents of infants to be born with particular disabilities learn about the disability from other families who include a member with the disability?
Once the child is born, if they still do not want the child, the child can be placed for adoption.
I too, Kate, have experience with disability. My child was born some fifteen years ago of a mother too young too have considered amniocentesis. If she had had one, my son most certainly would have been aborted. Instead he was adopted by me.
I was told that the baby would certainly die as he was failing to thrive. I was told he would never walk. I was told he would never speak in complete sentences. I was told he would never live on his own. I am now told he will never go to college.
My child is now fifteen and cannot read or write. He cannot tell you who the President is or what he is. Kosovo and Columbine are unknown. He does not know right from left.
But he is a happy, healthy teenager. He has friends, he has dreams, and he has promise. He has friends at his school and mine, at 4-H, at the Cycling Club, at the Community Center, and on the block. He has dreams of living in an apartment with a friend, getting a better job, having a girlfriend, going to college, and living a very full, active life. He has the promise that all his dreams will come true -- maybe not on the same time schedule as his peers, but I have every confidence that they will come true.
What right do we have to devalue my son (with Trisomy 21) by aborting children similar to him whose lives we deem untenable?
Debate over NDY, more
I am currently in a debate with an on-line friend about ethics and disabilities. We met on a preemie support list. Her profession is in the medical field and she's written a book. Both our sons have disabilities (her son's disablity is mild and he walks unassisted; my son has cerebral palsy and his disabiltiy is more severe). There is mental retardation in both cases.I>
The current issue we're discussing is whether life with a disability is worth living. She feels groups like Not Dead Yet are simple mouthpieces for the pro-life organizations, concerned with saving life at all costs, but doing nothing to help provide a supportive environment for people with disabilities.I>
We both, strangely enough, are currently undergoing tests for multiple sclerosis.I>
I feel that a disability does not define a person as much as the person defines the disability. She has been throwing studies and direct quotes at me that would prove her point that those with disabilities wish they had not had heroic measures done and that their life isn't worth living. I feel that the lack of a support system -- or a poor support system -- is the reasons for these feelings rather than the disability itself. A disability can be very isolating and people can be very patronizing to those with the disability.I>
I decided to go straight to the horse's mouth and ask if you have any "scientific" research that backs my view, and if anyone has personal comments in my support -- that you in fact find life is worth it.I>
With the possibility of multiple sclerosis in her future, I think she is simply running scared.
Editor's note: The following studies are posted online in various places and were provided to us by Not Dead Yet. They are online at www.accessiblesociety.org/bkgdkev1
- 86% of spinal cord injured high-level quadriplegics rated their quality of life as average or better than average. Only 17% of their emergency-room doctors, nurses, and technicians thought they would have an average or better quality of life if they acquired quadriplegia (K.A. Gerhart et al., Annals of Emergency Medicine, 1994, vol. 23, 807-812).
- No differences were found between 190 physically disabled persons and 195 "able bodied" persons on ratings of life satisfaction, frustration with life or mood (P. Cameron et al., Journal of Consulting and Clinical Psychology, 1973, vol. 41, 207-214).
- The duration of disability was positively related with acceptance of disability in persons with spinal cord injury-related paralysis. Severity of disability was of no importance in accepting life with a disability (F. Woodrich & J. B. Patterson, Journal of Rehabilitation, 1983, July-Sept., 26-30).
- 60% of paraplegics reported feeling more positively about themselves since becoming disabled (C Ray & J West, Paraplegia, 1984, vol. 22, 75-86).
- Interviews and tests administered to 133 persons with severe mobility disabilities revealed no differences between them and the nondisabled norm on psychosocial measures. In another study, no significant difference was found between persons with severe disabilities (requiring wheelchair use and daily personal assistance) and persons with no disabilities on quality of life measures (R Stensman, Scandinavian Journal of Rehabilitation Medicine, 1985, vol. 17, 87-99).
- In a study of life satisfaction of quadriplegics, fewer than a third of those who used ventilators expressed dissatisfaction with their lives. There is evidence that life satisfaction scores are higher in persons who have had more time to adjust to disability (J. R. Bach & M. C. Tilton, Archives of Physical Medicine and Rehabilitation, 1994, vol. 75, 626-632).
- Spinal cord injured rehabilitation patients were similar to the general population on self-ratings of depression, yet hospital staff consistently overestimated the patients' level of depression (LA Cushman & M P Dijkers, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196.)
- Three-quarters of persons with spinal cord injuries rated their quality of life as good or excellent. Amount of paralysis made no difference, but people who used ventilators rated their quality of life higher than those not needing ventilators (G. G. Whiteneck et al., Rocky Mountain Spinal Cord Injury System Report to the National Institute of Handicapped Research, 1985, 29-33.)
- Elderly paralyzed veterans rated their quality of life higher than similarly aged men without disabilities (MG Eisenberg & CC Saltz, Paraplegia, 1991, vol. 29.)
During 1994 I suffered an injury which, when added to those I sustained over 25 years of faithful service, caused me to be asked to retire on my vested disability pension. When I did, I had my government employer argue against my pension. I was terminated from employment of 25 years due to my "disability" -- with pension payments withheld. Not only have I had my life ruined but the lives of my wife and two fine elementary school children have been affected as well -- because I became a "disabled American."
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