What I'd give for a few enemies!
Katheryn J. Ware's letter in the March/April Ragged Edge ("Don't attack registered nurses") bothered me greatly. Deja vu, I thought. Another one of our "friends" is proving, again, that it isn't our enemies we have to fear.
I'm an SCI quadriplegic, with 34 years' experience, and credentials as a "fierce advocate" (to borrow Nurse Ware's phrase) that include the hiring and management of my own attendants for many years while I worked and earned my living as a rehabilitation professional. I've been a certified rehabilitation counselor and director of a state vocational rehabilitation agency; every experience of my life screams at this well-meaning mother of a child with disabilities, "No! You don't understand!"
Nurse Ware wrote in her letter, "Why didn't you mention that Śdelegation' of medical procedures to personal care attendants means delegation under a registered nurse. . . ." In other words, someone has to be in charge other than the person with the disability!
Ware assumes that the disability in question--whatever it is, whoever has it, wherever they may be--is a medical issue that can't ethically or legally be dealt with in any way other than those ways controlled by medical professionals. To her, and to many others in and out of the medical profession, this is a given.
I totally disagree. My reasoning is simple--even a medical professional should be able to follow it. It begins with the assumption that a person is no longer sick if they are as well as they are ever going to get and if the limitations that persist won't kill them at any time in the predictable future. In such a case, the person in question is merely disabled and needs only to find a reasonable way to get on with life in the most productive and satisfying way possible.
Since it is likely that the limitations in question may require the assistance of another person, the issue becomes, simply: who controls and directs that person's actions?
As an independent adult, having the action taken in my home, paying for it myself, I will not allow Nurse Ware or anyone else to get between me and my attendant. Just like anyone else (even Nurse Ware), I can do what I please with my body, in my house. No one delegates but me, and God help them if anyone of them tries to control me! I'm mean and nasty at such times.
The issues Ware's letter raises are the heart of the disability rights movement. The stereotype of the person with a disability is that of a perpetual child, asexual, capable only of simple decisions and in constant need of monitoring and guidance. Those of us who don't fit this picture aren't really "disabled" and shouldn't worry about those who do. We should just leave them to the benevolence of their caregivers.
This might be alright except for one small thing: Most of us can't get jobs, and without them we can't pay our own way. Which throws us back into a system that gives us support only if we accept the premise that we are incapable of exercising control of our lives because of our disabilities and need someone else to make our decisions for us.
Which leads us back to Nurse Ware and Dr. Kevorkian and the attorneys general of the states that have joined Georgia in the Olmstead case and lots of other well meaning "friends" who are anxious to help us. Friends like Adolph Hitler and those other Nazis who decided some of earlier brothers and sisters were a useless drain on society. Remember them, anyone? They were the first ones to be slaughtered in the gas chambers, with the willing assistance of their doctors, nurses, parents, and others who wanted to help them.
Lord what I'd give for a few enemies. I'd like to find someone who wouldn't get their feelings hurt when their ideas and actions piss me off!
Time to reclaim our lives
I live in Minnesota, in a house for those on ventilators. There are 4 of us who share rent on a house and have shared care, to bring down the costs.
We still have one-on-one ratio of disabled and worker. Self-directed care is implemented. Though we are stuck with 2-3 nurses, we still have personal care attendants and CNA's trained to suction guys on vents. We call them Respiratory PCA's. They get paid 40 more cents per hour than the average PCA. Our PCA's can suction and do irrigating. We are still being subjected to the state cutting our money.
Time to straighten out these jerks and reclaim our lives.
We'll continue to use pro-se
I must agree with Amy Robertson's assessment of the pro-se project ("The Pro-Se Project: A dissenting view", Jan./Feb.). The real problem, however, is the dishonorable, greed-filled legal profession that leaves our community only a pro-se water pistol to enforce the ADA with.
I think the pro-se project is more a statement of the dismal performance of a legal community that has not found a way to significantly profit off of our civil rights.
Amy Robertson said, "Šif you have a good case, you should be able to find an attorney." Lawyer World is a nice place, where dedicated officers of the court are skillfully engaged in a serious heartfelt search for the truth to uplift the downtrodden and bring peace and love to all mankind. But here in Memphis we will continue to use the pro-se complaints. The real heroes are the advocates that are willing to charge into battle armed only with their pro-se squirt-gun and a passion for equality.
The Memphis Center for Independent Living
Advocates from the Memphis Center have won some significant battles using pro-se; see DR Nation online June 1. --ed.
'I am not interested
in the broader social picture'
The problem with Lisa Blumberg's position ("The Bad Baby Blues", July/Aug.) is that it discounts the very real, personal dilemmas expectant parents find themselves in when the results of prenatal tests are poor. It is always a devastating personal situation, while the impact of any single situation on society is negligible.
Obstetricians suggest testing for high-risk couples because they see firsthand what the woman goes through who delivers the anacephalic child. They see when a couple is ripped apart by the news that their child has Trisomy 13, 18, or 21. Or when the child's internal organs are all outside its body. Or when the baby has no kidneys.
Those babies are not "disabled," as it's commonly understood, and to characterize them that way is an inaccurate euphemism. A significant number will not live to term, and the vast majority will not survive infancy. Doctors see this as a preventable tragedy, and they want to spare patients unnecessary pain. It has nothing to do with intolerance of diversity.
As a woman who was in this situation two years ago with a very much wanted baby, I can assure you that the vast majority of expectant parents seek prenatal testing not to "weed out˛ a problem but to be reassured that their baby is healthy. And for the vast majority of them, the news is good. When I was shown the mandatory video at the prenatal diagnostic center, it featured dozens of women talking about what a good experience it was to learn that their baby was healthy. There were no examples of poor diagnosis. But before I left the center that day, I knew that if my child survived, he would be severely physically and mentally disabled. Because of the timing of the tests and the legalities of pregnancy termination, this is always a decision that must be made quickly.
I am not afraid of disability. Twelve years earlier, my youngest sister became quadriplegic after a fall from a horse, just like actor Christopher Reeve. She recovered sufficiently to become mobile in a wheelchair and attend school. While her body was paralyzed, her mind was sharp, and she constantly strove for self-improvement. She also hoped for a cure for spinal cord injury, and with every operation she made sure that if such a cure became reality, she might walk again. I cheered her grit and determination, and wanted more than anything to see her succeed at her goals. I became familiar with the considerable daily care it took to keep her alive, and how people reacted to her disability. The rest of my family did as well.
However, in 1990 she became septic, and entered the hospital. After two months of heroic efforts by my parents and the doctors to save her, she suffered irreparable brain damage and my parents made the decision to let her go. They had watched and supported her struggle to live for five and 1/2 years, and the time had come to stop fighting. She died 15 minutes after the respirator was removed.
The point is that quality of life is, at times, an issue that must be decided on behalf on those we love when they cannot do it themselves. I loved my sister, who I knew for 27 years, and I loved my baby, who was my heart and soul for the 18 weeks he lived.
If I thought he had a fighting chance for a quality life, and if I felt I could protect him from the pain he would endure, I would have continued the pregnancy. But I knew I couldn't. I and the thousands of women who have also faced this decision are not interested in the broader societal picture and would not have cared at all about what some legislator thought we should or shouldn't do. We all know how damaged our babies were, and it makes us all the more compassionate, not less, for people we meet who live with disabilities.
Readers may be interested in reading about a "wrongful birth" lawsuit in DR Nation online June 1. --ed.
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