From: jaiarose@msn.com
To: jaiarose@msn.com
Subject:
Date: Sat, 11 Feb 2012 06:32:34 -0600
After I demolished my car, I lie comatose for a month and have a traumatic brain injury. As a consequence, my sense of balance was pretty much destroyed, I have double-vision, delayed reactions to possibly harmful events is huge. Thus, I have been in too many the emergency room and have return hospitals from coast to coast on several occasions, mainly due to this vitally important loss. Logically then, I should consider myself as a fan of medical procedures and innovation. However, I have had a lifelong distrust of the medical establishment and this was only compounded by my disability. I have been arrested bamy disability. Thankfully, the whole episode was fairly comedic but the issue at the core is not funny and this writing is not meant to undermine.
- My four younger siblings and I were all born at home so from the age when I could judge where certain events took place, I automatically saw birth as a natural process which did not necessitate surgery and thus, a hospital. Currently, most infants are delivered in a hospital-setting, where access to surgical medical tools and obstetricians is immediate. Our country's cesarean rate is at 25% and this is ridiculous. Women have had babies for thousands of years where a surgeon was not necessary, but because much more money can be made when a baby is produced this way, the rate is what it is. As she has delivered over three hundred babies as a lay midwife, and only saw a handful of cases where the woman in labor needed to be transferred into the care of a "backup doctor", I have always been keenly aware that often traditions do not portray real need and standardized medical journeys are not always beneficial.
- Because of an illness, injury, or something which accompanied them at birth, thousands of United States citizens have been placed in nursing homes (aka, long-term care facilities, residential facilities, etc.) Many of these places are lovely and provide things that spending days in one's own home could not. Plus, there are family and medical reasons for placement. My remaining grandparent lives in one of these centers, says that she enjoys it, and having visited, I can attest to the fact that it is lovely and she is comfortable and happy. As her son lives nearby and keeps in contact with her, the entire situation seems positive. However it is a privately-funded home and she is in her nineties.
- On the other hand, residents of some facilities which are funded by the government or people who rely upon government funding, are of all ages and the environment is often not so serene. They are dependent upon others to assist with a daily need and some were abandoned by family. In a few situations, abuse or neglect occurs. The alternative is usually preferred and consists of leaving an individual in his or her own home and having an assistant or aid visit for a few hours a day or week, providing care. Since I now have a traumatic brain injury, this is personal. Placement in any environment where my status of dependence on others put me at risk of neglect or harm is unacceptable.
- My disability is a traumatic brain injury and when it began, a lifestyle which, among other things, tremendously impacts my coordination and balance. Hence, I also use a walker, but that is usually my mode of assistance on more private occasions, when an explanation is rarely necessary. Hence, I rarely walk without some kind of assistance and often it is a scooter, which is commonly used by the elderly. Actually, many aspects of my life are also common for individuals of different ages, so it is not odd that my concerns would vary from those of most forty five-year olds. Admittedly, this is an odd way to live and although my family and I should be experts at predicting probabilities and possibilities, even we are still learning and accepting. Some of our other deficits symptoms are in the cognition and memory categories and deficits in these areas are also found in some elderly people.
- A nursing home might also be called a residential (long-term care) facility and it is important to say that many are incredibly well-run and offer enjoyable experiences. Like everything, there is an alternate side and many, especially some run by the state, are nothing more than warehouses which remove many of our constitutional rights. Abuse has even been reported and sadly, the residents of those facilities are usually prevented from speaking of these experiences. Therefore, it is the responsibility of unrestricted citizens who are concerned to demonstrate their dissatisfaction.
- An easy-alternative to living in a residential facility is in-home health care. When this situation is in play, a worker enters the home a few times a day and provides whatever care that for which the individual needs assistance, whether it be food preparation, bathing, help to run errands, dressing (obviously, the list goes on). This type of care is, of course, much preferred by most, is much less expensive, a is not the usual option of families in need of help. Nursing homes and residential facilities employ many people and are usually backed by a medical system that has tons of resources. Thus, when recognizing when an individual requires help, the usual course of action is placement in a nursing home...regardless of age.
- Residents of long-term care facilities have few freedoms and seldom have a choice of how they spend their time. Unlike prison, no offense has been committed. As stated, normally residents who are forced to live in these places are in their seventies or are older. However, since many aspects of a disabled person's lifestyle mirror that of an older individual, in some cases, institutization is the forced by the state. Currently, the national bias makes institutionalization the immediate choice. The other (more humane and economically solvent choice is community-based attendant care. In these situations, an attendant or aide stops by someone's residence for a few hours a day and provides the necessary care, whether it be meal preparation, assistance with personal care or medical service. Of course, actions and needs vary but I have lived alone and just employed an attendant since grad school. Thus, I am incensed over the fact that people my age are often placed in nursing homes, although their only crime was to be born with something or to, like me, get into an accident on an icy bridge.
- After dealing with the trauma of getting a disability, or after being released from a long-term care facility, there are a myriad of skills to learn. Although my support and education came from college and my family, soon after my last move, I learned of centers for independent living. These centers individually help folks with disabilities to successfully live independently and are part of a national network called NCIL, are located in most urban ares, are staffed by individuals with and without disabilities, and find varying degrees of success, try to meet the needs of an undeserved and largely impoverished population and are underfunded. However, they do what they can and a while after I began my time of being on the board of directors at the local C.I.L., I learned of ADAPT, an organization started by a man named Bob Kafka. It seemed pretty clandestine and exciting as it collected folks from all over the country to protest various unfair actions and laws. Additionally, it actually freed people from nursing homes! Many of the living conditions at these places looked deplorable. Hence, my involvement with ADAPT seemed like the right course of action and I introduced myself to Bob via email.
- I should repeat the fact that this group did not meet in my home state. Hopefully, there is some connection now, but good change often takes a long time and I am involved with other worthy non-profits. Plus, I have this problem called a traumatic brain injury and it's pronouncement in my life has slowed me down and given my a number of more pressing issues to tackle. However, at the time of this episode, I very excited about possibilities and Bob seemed happy to hear from me and so began the trip that led action which began My Time At The RNC
- .
- Bob reported that the next national action (protest) of ADAPT would be at the in Washington D.C. The Community Choice Act gave in-home care preferred status over residence in nursing homes. It had been signed by Barack Obama and Hilary Clinton, but had yet to feel the pen of John McCain. Thus, we were to meet at the Republican National Committee to request that he sign. A lifelong Democrat, I have always felt a bit fearful and disgusted by the very name the Republican National Committee. Although I've now been there and have seen that it's only a big, concrete building of lawmakers and defenders, I remain quite surprised over our antics in this building.
- First, we tried to speak with the secretary of Health and Human Services. After discovering that the secretary was out, we gathered at the headquarters of Republican National Committee. Honestly, I have a fairly dim recollection of the actual event but I do remember that we had the support of the teamsters' union and many honking semis drove by, adding to our calls for McCain's appearance and answer as to why he had yet to co-sponsor. After a few hours, we were warned that our arrests were imminent if we did not vacate the premises, but I am doubtless that everyone felt as resolute as myself.
- After meeting only one other individual who had sustained a traumatic brain injury and hearing his story, I realized my good fortune. For one, my mother was able and willing to retire from her part time job. Needing to live outside my family's home was never even a consideration, much less a threat. Additionally, I had gotten my masters degree and come from a family who will always be able to help me live on my own. Most Americans with disabilities live in poverty and are reliant upon state-subsidies. I enjoy Medicaid and Medicare but my primary financial assistance comes through private means. While most of my life has been forced to take a completely different route, I cannot complain of being unhappy and I am confident that few would offer me much pity after learning my family, travels. education, and the joyful potential of my future.
- However, due to partially paralyzed vocal chords, unless you claim to be my sister, it is to ALWAYS understand me. My voice was once a beloved highlight of my life and led to a part time job as a radio announcer and secured my placement in the chorus and on the speech team. Because of balance issues, I have entered the emergency room about twenty times. Because of a history of "locking" my left knee and screwing up my leg, I currently have this painfully arthritic knee and need to fasten electrodes to it that provide enough electronic current to it for it to be useful. As a favor, I will refrain from mentioning the other insults I derive from my body on a daily basis, but I need to state that I fully realize how dependent I am and how few are the factors that separate me from institutionalization. Yes, I was determined that John McCain sign the initiative.
- So, after our large group of mainly wheelchaired-people would not cease loudly chanting slogans like, "our homes, not nursing homes" and "we want choice NOW," we were threatened with arrests. Calmly, Bob spread the word that being arrested was fine...we had attorney-help to navigate our way to easy-release. Although it has been established that I should never trust my own judgement, I believed Bob. After hearing of ADAPT, I learned that their actions frequently resulted in arrests. Whie being handcuffed with several other in chairs was new to me, it was old-school to ADAPT.
- A large factor in the determination that it was acceptable for us to be arrested is simple and architectural. The jailhouses in Washington D.C. are inaccessible. Thus, we would not be plunged into some dank cell to face other criminals of the District of Columbia. It was thought that we might be taken to a park or some other large, publicly-owned spot which was one level. Unlike the police officers near my home, the majority of officers surrounding our group of protestors was pretty young and good-looking. The prospect of spending a large amount of time looking at the faces of a bunch of cute guys was not a bad fate.
- Our group was getting lots of attention and the question of how to proceed was in the air. After a fairly short amount of time, one of the members of the N.R.A. private security squad, an office worker or some random senator must have reminded someone in charge that there were some spacious rooms IN the building that might be useful, because in short time (I'd say "immediately," but a large group of people in wheelchairs don't do anything "immediately") we were told to relocate to a certain room in the interior of the building.
- As the day promised to be long and I love to drink coffee (vanilla lattes are my favorite), after wheeling past a few workers with mugs and snacks, I realized that there was a cafeteria and I requested that we stop. After being given the nod, I began to feel a little better about my incarceration. This vibe became even warmer when the officer reached for his wallet. "Is this really happening?" was my initial though. Although this episode happened years ago and a few of the other details might be a little fuzzy, I firmly recall that thinking those words.
- Once the transaction was made, the officer who had taken me to the cafeteria pushed me down the hall and steered me to a spot in the rear of the long line of wheelchairs. As most individuals who utilize wheelchairs are SPINAL CHORD-injured, almost complete independence is achievable once the person is in his or her chair. As my brain was the lone organ injured in my wreck (accident) and the brain controls every muscle and function in the body, way too much was injured for many things to function...including the ability to walk unassisted. If the injury occurs to someone's spinal chord, it's always a loss, but the main question is "where?"or "at what level." Damage occurs AT the point of injury and affects (paralyzes) everything beneath it. If the harm was exacted at a low point in the column and only two of the person's limbs are paralyzed, the person ends up being a paraplegic ("para" means two). If the injury occurs farther up the on the column, one has a greater opportunity of being a quadraplegic and all four limbs are impaired ("quad" means four...but you probably figured that out).
- As stated, my brain was my lone organ to be injured and every single brain injury differs from every other. Various cells, synapses, and spheres control all function. Not only is each individual hurt at a different location than another, but each person responds differently. That being said, there are, of course, things that we all have in common. It is usually interesting (if a little annoying & embarrassing) to view another with the same injury and to not only truly understand many of the issues and difficulties with which they deal, but also how he or she is coping with the differences and how that person's support-team is helping. For instance, hopefully, my readers recognize the name "Gabrielle Giffords." She was a senator from Arizona who was shot in the head. When her injury occurred and I heard of it, I was sad and wished her luck, but failed to give it much attention. Recently, I saw her on television and recognized many of her characteristics as ones that I have. They were announcing her retirement from the senate and I am happy to hear that she has finally faced reality. "A senator? Seriously? Most of us don't have the where-with-all to realize that dessert is the final dish of the meal and someone told you that you could maintain the type of job which creates the laws that govern thousands? Ouch." As I returned to a prestigious college following my injury and went on to earn my masters degree when my neurologist doubted that possibility, one might expect me to have the belief that the advice of neurosurgeons and other specialists could be ignored. However, along with my degrees, I have also been a witness to the million of negative effects that show when this type of injury occurs. For example, I have never met anyone who did not speak of memory deficits. Having ataxia (shaking limbs) is also common among us. People always beat the odds. Sure, but I bet most folks who are blind don't necessarily count on seeing anytime soon. There are things we just need to accept. It may take years...it may never happen...or it may take years." There are those people, like my friend, Mike, who quickly adjust and just seem to be immediately ready to adjust to an entirely strange, new life. Mike may be one of the very few or he may be hiding his real issues from me...a girl and his peer. Long ago, I was with a group of people who had been both spinal chord and brain injured. After several other question, they were asked which type of injury was worse. The consensus was definite. "Brain injuries because they are totally personal. With spinal chord injuries, society has to figure it out. They just have to accommodate ME. Having a brain injury is definitely worse. It's personal." That, too, has never left me.
- As all of those involved in the action were in wheelchairs, the chain of events that transpired that day went at a sluggish pace. When regularly-paced needs are accommodated to be useful to members of society who are in wheelchairs, action usually happens at slow rate. As I had been disabled for about fifteen years when the arrest happened, I had a little foresight. Hence, I asked for coffee. Before a friend or my mother and I leave to do errands, I try to bring some reading material along. This is done so that I always have something to do which I enjoy. As I readily agree that getting me, my walker, or my wheelchair out of the car for every little errand upon which one embarks is not a good use of time, others understand and even help me locate the reading material. After entering, we were told form a line to be fingerprinted and, naturally, there were problems. Someone was allergic to all types of ink, another person had to use the restroom and the one closest was not accessible. I got the opportunity to listen to several members of the movement who told wonderful stories of other actions. Unfortunately, a depleted memory is a staple in the diet of those of us who are brain-injured. If Ms. Giffords felt fully able to create the laws by which thousands, more power to her, but I'd probably just I giggle and wonder if she could recall any of those mandates the next day.
- As is probably known, we elected Obama. Thus, the bill is a federal law, but since states are primarily in charge of this type of funding, it is not Obama's decision. The day did create a good memory for me though. I fondly recall being asked out. As I am forty, it's been done on other occasions, but my Miranda rights were never involved. After I was fingerprinted, there was still some ink left on my thumb and after my the bottom of my thumb was coated on a dark ink pad and then carefully placed on a legal document, I had all of this residue. After looking around for a towel, one of the cops hurried to my aid and produced one. Being new to the whole world of "the criminal," I was kinda embarrassed so when the cop in question ask me what I was doing later, I was definitely not trying to be coy or appealing. I replied that I had no idea to which he remarked that he and some friends would be at a certain bar on the Hill by nine and asked if I would join them. He, then, wrote down the name of said bar and once again, I remember thinking, "Is this really happening to me?"
- Sadly, I didn't even bother to take a cab to the bar. I forgot. As I have this brain injury-thing and "forgetting" is typical to one who possesses my type of injury and is the nature of the beast. Although, he was very cute and it makes me grin to recollect the events of that day, I have done much, much worse. Still, I do regret that I forgot to meet that cop, not because some incredible romance would have occurred, but because he was nice and cute. It might have made him smile too. However, the dude is not locked-up in a nursing home. Thus, it is fairly easy to keep my sympathy at a low-volume.
- The entire experience is fairly fluffy and amusing; flying to D.C protesting, being handcuffed and arrested, being asked on a date, forgetting said date, blah blah blah. Like many things in life, the reality of WHY you are really angry or the exact reason behind the scene seems rather existential and a pretty light. However, life and fate got together and decided that I needed to be cognizant of the reason for ADAPT and their "lawless" behavior. Then, I got to discuss things with Katie.
- Soon after she and I met, I became aware that she had been a resident of an institution. However, not until recently was I able to have a long conversation with her and to realize the magnitude of the Community Choice Act's influence on people's lives. As she was born with her disability, the transition to an out-of-state college resulted in depression which led to a few attempts at suicide. Katie admitted herself to a residential care facility where her social security payments were used to cover treatment and rent. After she was abuse, she was transferred to another institution where she was not harmed but where all of her activities were monitored and her agenda set by the staff. As Katie is about a week younger than I am, the very idea of this type of dictatorial living condition is as grotesque as it is horrifying.
- After release from this totalitarian-like environment, Katie relocated to an apartment building and is a success story of the independent living movement. All humans are assisted along on our journey. Thus, although a home health aid stops by a few times a week, Katie she makes all of her own decisions, has a plethora of friends, drives and partially owns a car in a Co-op. She also keeps close contact with her family, is employed in two locations, never relies upon the permission of others and co-owns her own home. As I amble about my life, others regularly tell me that I'm their inspiration or their hero and I usually just grin, nod and take the compliment. However, I always think of Katie. Getting asked out by a cop pales with the feeling this act has given her.
