Don't attack registered nurses
I've been a big fan of Ragged Edge, but I was alarmed at the viciousness with which you attacked registered nurses ("In Thrall to the Medical Model" Jan./Feb.), making them sound money-hungry and insensitive. Why didn't you mention that "delegation" of medical procedures to personal care attendants means delegation under a registered nurse--that means if I delegate tracheostomy suctioning to a PCA, and that PCA kills the person, then I can lose my license!
I've worked too hard and too long--I'm due to graduate in May and have worked four long years for my R.N.--to allow a person with very little or no training to make me lose my license.
I have a four-year-old son with cerebral palsy, mental retardation and epilepsy; I consider myself a fierce advocate for my son--I volunteer for the Board of Directors for ARC Suburban in Burnsville, MN and am on the Parent Advisory Council of St. Paul Children's Hospital.
You talk about "quality of care" and "standards of care" as though they are irrelevant. Have you taken a look at the quality of home health aides out there today? Some of them cannot tie their own shoe, let alone suction a tracheostomy. My friends have been sent PCAs for their children who are under house arrest, with electronic monitors around their ankles. PCAs have stolen from, invaded and abused people with disabilities. These are people we should trust with sterile and life-threatening procedures? A person's body has places that are sterile--your bladder and the urine in your bladder is sterile until it passes through the urethra. Do I trust a PCA to maintain sterility of procedure? No! If a person is willing to allow a PCA to perform these tasks, it's their decision. But don't do it under my license! I will not take responsibility for those situations.
You say the nurse practices act [in Nebraska] forced Tim Kolb into an institution? I say the state of Nebraska forced him into an institution. Nebraska should cough up the healthcare dollars to pay for an RN to care for him at home. The CEOs of all the HMOs forced him into an institution by pocketing all the money!
I agree with your position that people with disabilities should be allowed to stay in their homes and receive care. It is where you are assigning the blame that is in error. Nurses work hard. Good nurses work even harder. The pay nurses receive is not outrageous. The professional fee of registered nurses is not so great, given the work they do. Should anybody be allowed to do any and all jobs performed by an RN? Why should nurses have to take years of anatomy and physiology, microbiology, chemistry and nursing classes? Hospitals are hiring more nurses' aides and fewer registered nurses and training the assistants in insertion of foley catheters and other things. This doesn't mean a decrease in your hospital bill, though--quite the contrary: Your hospital bill will keep going up and administrators will pocket the profit. The HMOs do not want to pay an RN $20 per hour when they can pay a nurses' aide with three months of education $7 an hour.
There is more to nursing than the "procedure"; there's assessment of how that procedure has affected the client as well as the need to interpret data and seek a doctor's help when appropriate. RNs are overworked and underpaid. I agree that assignment of procedures is a better idea--that way the disabled person can be responsible for their own care but not responsible for maintaining my license.
If your premise is that "anybody should be able to perform RN procedures," this scares me--not because I want to get that professional fee, but because I feel that a registered nurse can provide that care much much better than any PCA or CNA.
Katheryn J. Ware
Inver Grove Heights, MN
Our media problem
Living here in southeast Michigan, Jack Kevorkian's stomping grounds, I have long watched the local media's approach to coverage of disability issues, including the physician-assisted killings of the Kevorkian/Feiger circus ("Feeding the Beast," Jan./Feb.)
In virtually every instance, the press has taken the stance that it is covering current events for an able-bodied audience. Topics must be of interest to the able-bodied, and coverage must be from an able-bodied point of view. It would seem that the idea that there are 54 million people out there that might, for one reason or another, have a different point of view has not crossed the editors' minds.
The Detroit Free Press sporadically carries a "Disabled in America" column; in recent years, its authorship has alternated between writer Kevin Robinson and Ann Arbor resident Yvonne Duffy. While the two writers have distinctly different styles and approaches to the column, both succeed in creating articles that have a lot to say to both the disabled and the able-bodied populations. The column is usually relegated to the inside pages of the "F"section of the Sunday paper. Frequently, the column is omitted. I have written to the editor of the paper on a number of occasions about the frequent absence of the column and its unfortunate placement, and have never received a response. I'll keep writing.
A week ago, after several weeks of no disability columns, Duffy's column was given a prime location on the front page of the "The Way We Live" section. Why? Duffy, who recently suffered lung collapse and is now using a ventilator, wrote a column about Chris Reeve's performance in his television drama, Rear Window. This was something that might catch the interest of non-disabled TV viewers, who might not give a damn about crips. When Dr. Death hits the front page, it's not about crips, it's about the "right to die," an AB control issue. When they report about ADAPT picketing Gov. Engler's home, it's not about disability rights, it's about the governor's frightened wife. (Frightened of what?)
If we want to impact the media, we have to offer the press something "sexy" (whatever that is), that AB editors and producers will see as being about them. Not until we have the spotlight ľ and control of the microphone--an we talk about what really needs to be said.
Afraid to face reality
What is it about disabilities that has people so afraid to face their reality? I truly believe people like Raspberry would be happy if the physically and mentally disabled were still hidden in back rooms so he wouldn't have to see us ("Raspberries to Raspberry," Jan./Feb.) I believe people don't like to see disability particularly because of its randomness--people don't want to realize it could just as easily happen to them.
If people would simply take a moment to examine the ADA and things like universal design they would see that all would benefit. More people wind up disabled at some point in their lives than people want to realize. We must make them understand that inaccessibility is just another way to discriminate. Accommodation is not a matter of convenience but a matter of law, and it is about time it were enforced.
Linda A. Cronin
Cedar Grove, NJ
More on William Raspberry's column will be online April 15. --ed.
On covering disability issues
News accounts of civil rights issues today are different than they were thirty years ago, probably because the events and their respective contexts have changed. The bus boycotts, the lunch-counter sit-ins, Ms. magazine, the Stonewall riot--these were watershed events which were groundbreaking. Their profound social impact is only enhanced by television, which not only brought these events live to a worldwide audience, but repeats them as history at any time since then. Since the statements of those times have been made, understood, and accepted by the majority of the generation born since then, more current events intended to be a "statement" by some, such as Louis Farrakhan's "Million Man March," appear more like a publicity stunt instead of advancing a big issue.
If a call to action can mobilize such a large number of African Americans, women, any ethnic group, or gays and lesbians, can the same call to action bring the gimp nation to the Reflecting Pool? At this time, I'd tend to say no. Our vast masses, 54 million strong, might yield a few thousand. The advocates we all know in DC will come. They are local, so it's easy for them. A few others with the money and the transportation will make it. You won't see people who live segregated lives; after all, our rights mean the taking away the livelihood of the segregators, and they won't allow that. You won't see the people who don't know that there is a Gimp Nation or that we are even defined as a group. If we try to have simultaneous local marches all around the country, would that be enough? Would a TV station in Peoria make the connection between the six marchers who show up there, the three in Scranton, the fifty in Manhattan, and the ten in Tampa?
The CILs are the closest thing we have to an NOW or the NAACP, but they aren't generating the same kind of group identity the way ADAPT does. Consumers tend to come and go, and membership rolls lose people as they try to gain others.
The changes come slowly. Before we had Mainstream, Accent on Living, and the Disability Rag, there was nothing. Now we have these and a few more, and we are finally on talk radio with Greg Smith's On a Roll. These are our creations, from within. The other movements did this too, but they were able to reach further so that Jennings, Rather, and Brokaw don't need to defer to a reporter who represents the constituency and still present a relatively unbiased point of view. Our media problems can be solved if there are more of us in the media. Hockenberry should be one of many instead of just one.
For the time being, we should expose as many reporters, editors, news directors, and producers to our magazines so they can read about us and, occasionally, how we feel about them. At the same time, we must look to the high school and college students who will become the Ed Robertses and Judy Heumanns of the future and steer some of them toward careers in journalism, or maybe start a scholarship fund.
Do whatever it takes
Jennifer Burnett asks, "should we trust that the media know how to spin a story to attract viewers?" They do; but in the quest for ratings and advertising dollars, the entire point of the story--or any good that it might do for the disability community--gets lost in the shuffle. It's the old "lowest common denominator."
At the local network-affiliate level, the media are much more accessible. If you have a topic that needs exposure, call the station, write letters--whatever it takes. Be concise, be polite, but stress the importance of your agenda.
Try local access television. Many cable companies offer classes free of charge in how to produce a TV show, and volunteers to help with the technical side. You write your own script. Its true that not many people watch local access channels, but if you do enough publicity (word of mouth, handouts, ads in the local paper) someone will see it. You'll also have videotape that you can show to other local media.
Activity at the grassroots level is the best way, I believe, to get these issues across to the public.
Name withheld by request
The 'which is worse?' game
It's impossible to force reporters to be informed, but it's important to try. What choice do we have? Its true that the ADA is often covered in a prejudiced way, but I face discrimination because of my illness, class, gender and sexuality, and I don't know that one outranks the other. I realize that ableism is insidious and often unchallenged, but so are the others. I think that the "whiny, ungrateful" comments are very often made about anyone with a low income. Anyone who is homeless or lives off the system also faces that bizarre charity mentality that says it's okay to eat scraps but not to demand what you truly deserve.
I don't say this to underplay ableism--it's deadly--but to say that I try not to get in the habit of figuring out which is "worse." I think it leads to trying to figure out who is "worthier," when really we all deserve a hell of a lot more than we're getting right now.
Not intended to offend
Many are the times I have read the "In case of fire, do not use stairs" signs while waiting for an elevator ("We wish we wouldn't see . . . " Nov./Dec.) and wondered just what I would do if there were a fire in the building and someone actually turned off the elevator. Should I head for the nearest stairway, hurl myself out of my wheelchair and roll down the stairs? Should I yell for help and hope some kind people come and carry me down the stairs?
I am grateful to Evac+Chair for coming up with a solution to this dangerous problem. It's obvious to me that their postcard was not intended to offend, but merely to inform. The caption they used on the postcard ("glad I'm not disabled!") was, I think, intended as a bit of barbed humor, directed not at people with disabilities but at the thoughtless people who design buildings and elevators with no other means of egress in case of fire. They were simply trying to make a point.
The caption "Glad I'm not a woman!" could be used to make a point inoffensively. Several years ago at a local university, the student newspaper ran an article pointing out that at the main auditorium there were an equal number of men's and women's restrooms, but since the men's restrooms had more urinals than the women's restrooms had stalls, and because men don't have to contend with clothing as much as women do in order to use the facilities, there was always a long line of women waiting to get into the restroom at intermission, while there was only a short waiting line, if any, to get into the men's restroom. The article would have been more eye-catching it if had been illustrated with a cartoon showing the two restrooms--the women's restroom with its long line of women, and a man about to enter the men's restroom (with no waiting line), glancing at the waiting women and saying to himself (you guessed it!) "Glad I'm not a woman!"
It is possible to be too politically correct and overly sensitive.
I'm a big fan of your publication, and I applaud your militant stand on most issues, but maybe it's time to drop the "We wish we wouldn't see" feature. Much of what you print in that column is only mildly--and unintentionally--offensive and easy to shrug off, and some of it is actually silly or downright funny. So lighten up a little, folks, and let's not be so thin-skinned. Life with a disability can be difficult enough--must we increase our level of irritability by being constantly on the lookout for things that offend us? Why don't we save our indignation (and our energy) for more important issues, or at least choose our targets more carefully? I don't agree that the Evac+Chair Corp. deserves the bad press you gave it. The life they save could be mineľor yours.
Playing politics while people die
Federal legislators recently subverted democracy by refusing to tally the election results on Initiative 59, after nearly 70% of Washington D.C. voters decided to allow medical marijuana in their district. By appealing to a constitutionally specious law which forbids them to spend any money on relaxing marijuana policy, our legislators are playing politics while people with cancer, AIDS, glaucoma, and spinal cord injuries are suffering. They refer to legalistic obligations, but the past decades have demonstrated that some officials are willing to break the law when it serves their economic and political interests. If "conservative" Republicans want to "get government off our backs," they could start by hopping off the back of the quadriplegic I provided personal care to.
I personally witnessed the benefits of medical marijuana on this Vietnam veteran. He experienced painful spasms from retracted tendons and atrophied muscles, but after using marijuana the spasms completely subsided for the remainder of his physical therapy. It does not serve the cause of justice to deny relief to the sick, or to deny voters the right to democratic due process. When will our government prioritize compassion and democracy over paternalistic control and arbitrary morality? It seems inconceivable that we throw people in prison, strip them of their right to vote, confiscate their property, destroy their families, allow patients to suffer, and subvert democracy, all because we cannot tolerate a natural herb which has no fatal side effects, was used medically for thousands of years, and is less harmful and addictive than tobacco and alcohol. Our descendants may one day mock our folly.
Christopher Jon Largen
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