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MANUSCRIPT- A LIFETIME ON WHEELS, ONE MAN'S POINT OF VIEW by Toppy L. Carter, III In memory of Toppy L. Carter, Jr. I LOVE YOU DAD

A Message To The Reader This book or booklet, whatever it turns out to be, is mainly for the ambulatory public. Anyone" who wonders how a disabled person such as myself goes through life and how he deals with certain situation. This book contains papers that I've written throughout my education and feelings and opinions that I have realized throughout my lifetime. It tells you how I feel about being in a wheelchair. I hope this book will help young disabled people and their parents avoid some of the problems I've had. It is also my hope that this book will be used by special education teachers. As well as people working in the field of rehabilitation to gain a better insight into the physically disabled people they work with.

I'm also doing this book as a therapeutic tool for myself to get some things off my chest. To start off with I would like to say I was raised in a normal family. As you will be able to tell, I had a hard time accepting my disability. Through this booklet, I hope you will realize how I evolved both emotionally and mentally and came to accept my disability.

I don't like the word handicapped most disabled people these days think of themselves as handicapable. When you use the term handicapped that brings to mind an image of a person with a cap in hand asking for a handout. As if to say "hey buddy can you spare a dime." If you must use the term handicapped please but the word physical or mental in front of it to distinguish between the two types of disabilities. Some people think that if you have a physical disability you also have mental problems as well, that is not always the case. Each individual you talk with will have their own feelings thoughts and opinions about their individual disability, I'm only giving you one point of view. I hope that after you read this manuscript you will go out and talk to other disabled people and make up your own mind and draw your own conclusions. Use this book as a tool to break the ice.

I have cerebral palsy, which is caused by an underdevelopment of the brain. For those of you who don't know how cerebral palsy can come about I'll be happy to explain. If you look at the first part of the word, which is cerebral, remembering if you had anything about the brain back in high school. The cortex is part of the brain. That should tell you where my

disability starts. It is due to damage in part of the Cerebral Cortex, that part pertaining to the motor function. Which means I cannot do certain things, such as walk, which the general ambulatory public takes for granted.

By ambulatory, I'm referring to the general public in this case the public that can walk around and take care of their own physical needs, as it were. As far as I'm concerned I need more help in getting up, getting dressed, being fed and being helped. I have to have someone put my clothes off and on, and put me in and out of the shower. I also need some help with my physical needs, in as far as using the restroom and I also use a urinal.

I am what is classified as a super quad, which means I have limited motion in all four parts of my body. There are also other types of cerebral palsy that can affect other part of the brain.

I have one of the most severe types. Fortunately, for me, I do have the ability of speech. So I am able to make my wants and needs known to anyone that is helping me day to day. There are also other types of disabilities and certain specifications for the areas of disabilities and the type: it runs into a long drawn out list.

I'm not a medical person, or I don't have a doctorate, or a medical background. I'm just an average ordinary everyday PAGE 2 quadraplegic, with no special medical training.

So, I'm just relating to the general public and letting you know how I grew up. I hope, because I'm doing this. That you will be able to see some of the things that a disabled person has to go through and put up with day by day, in order just to make it through life.

To start with I was raised in a normal family, my brother and sister, mother and father are ambulatory. Growing up I was never really treated any differently from my brother and sister.

We were all treated the same. Fortunately, I grew up in a type of close knit caring family. Our family is very close. For a better idea, to see how I made it through my early years and how my family has helped me through so far, the following article, which I wrote in my last years of high school, in 75 or 76, describes my early feelings and attitudes I had growing up. " If it is against the law to love your teacher, they may as well lock me up and throw away the key. Janie is a teacher at my school who takes the place of the big sister I haven't seen in quite awhile. She is a warm, outgoing person and besides her concern for her students, she has one other attribute - She is very pretty. She takes a special interest writing and in my feelings. She pays no special attention to

the fact that I'm in a wheelchair. I dislike being in a wheelchair. Instead I like to think of myself as a normal person."

The fact that I am disabled makes no difference to my parents who treat me the same as my brother and sister. We go places and do things together.

One summer, for example, we got an idea to go camping at Goldhead State Park. My father made screens to fit the back of the station wagon because my brother's pup tent would sleep only two. The arrangement was for my father and brother to sleep in the tent on the ground, my mother and sister in the back of the station wagon on a mattress, and yours truly crosswise in the front seat. However, I objected to sleeping in the car with the women. I wanted to rough it like the men. This only lasted about five minutes during which time I uttered what became immortal words in our family, spoken by five year old, "Jesus, I wish I were home in my bed." I wound up sleeping next to my sister and my mother was left wedged in the front seat.

The trip was quite a fiasco, but not because of my disability. During the evening, we left the camp site for awhile and when we returned we found evidence of vandalism. Groceries stored in the tent were strewn about by raccoons who had visited while we were out. The next day we hurriedly left in a thunderstorm.

A few summers after that, my parents came up the idea of sending me to Camp Challenge, the Easter Seal Camp. At first I enjoyed it, but then I began to feel as if someone was robbing me of my independence. Remembering experiences with non-handicapped people, while seeing people around me in wheelchairs, made me shrivel up inside and wish that I were home again.

This was back in the early sixties when I was about 11 or 12 years old, I went to Camp Challenge for the first time. I didn't like it very much then. For me attending Camp Challenge was like putting a square peg in a round hole. But I just made a return visit to Camp Challenge a few years ago to give my Mom a couple of days off from caring for me and my physical needs.

Now that I'm older I can see more clearly the need that Camp Challenge fills. It's for people that live in congregate care facilities. It breaks up the monotonous routine and everyday dull living schedule that these people go through. It gets them out in the fresh air and gives them a change of scenery even if it is only once a year.

As for me, its only strengthened my resolve that I will do my best not to wind up in a nursing home facility and it's made me realize how lucky I am to still be at home with my family.

When you talk to some disabled people at camp you don't realize how severe their disabilities are until you hear the way they talk and the manner in which they talk. Then there are those campers who can't talk at all and you don't know whether they're thinking of you as a nice person or a dumb idiot. Because there's no way of telling what the severity of their brain damage is.

Chris Walsh was one of the counselors at camp. He has been doing this kind of work with the campers for 25 years. He was even there the first time I was. He's had the most experience at being a counselor and providing physical care for the campers. Then there are others, young college students, who seem to the pretty capable. But then there are a few that I observed who

seemed to be rather immature and didn't seem to care that much about the needs of the people they were supposed to be helping. In my particular cabin, we were pretty fortunate. All my counselors seem to perform there tasks to the best of their abilities.

As for me, I don't think I will ever be returning to Camp Challenge. But, as a member of disabled society in the world today, I'm glad there is such a place to provide this kind of service for disabled people to benefit from whenever needed.

In closing here are a few articles from the Camp Challenge newsletter.

[Note the following articles are in the authors own words nothing has been changed.] " A HAPPY A AT CAMP CHALLENGE " By: camper Billy Gunn The happiest day of my life began when I arrived at Camp Challenge on they 29, 1994. I have enjoyed participating in all the activities here this summer, especially arts & crafts, where I made a crossed and a plastic fish and a mask for a costume ball held in the dining hall a few nights ago. I also participated in a bowling tournament held at Sports Games, and won the tournament for our cabin Timucuan. I attended one session at Nature, and took a hike on the Nature Trail.

My counselors this summer are my old and best friend Chris Walsh who has been working at Camp Challenge for a long time, Chris Guerriri, a new counselor who is the senior counsel of the cabin. Mark Brandao, who is also new this summer, and is also one of the lifeguards for the whole pool and last but not least, Shawn Willoughby, who is a new counselor. All of them are hard working and are doing a heck of a good job. I

wish to thank my mother for funding the money for me to come to camp this summer.

[Please note, The term Nature used in this article refers to a kind of petting zoo, where the campers can go and have their own close encounter with some of mother nature's creatures.] " CAMP CHALLENGE: BY SECOND HOME" By counselor Chris Walsh Camp Challenge was a place I came to back in 1964. It was a job that I wanted to try, since I had aunt who was handicapped I wanted to get some experience working with these people. I started working at Camp Challenge in the summer of 1964 from June 5-August 15. I attended staff trading week, to learn all about taking care of physically handicapped children and adults L. Paul Murray was the Director of Camping at that time Paul taught me a lot about working with these people, and being patient with them.

I learned how to help with feeding them lifting them from wheelchair to bed, and bowling toilet and shower them. Plus I learned how to communicate with them especially those who could not answer back.

My first year was somewhat scary, because I didn't know anyone. After awhile, sessions started a little easier. I started making friends with fellow staff and campers.

As of now, I have been coming to Camp Challenge, for nearly twenty-five years. I am forty-nine years old now, a lot older and wiser. I still enjoy Camp Challenge, even today. [the previous articles was written in the summer of 1994.]

Here is the address for Camp Challenge if you're interested CAMP CHALLENGE Florida's Easter Seal Camp 31600 CAMP CHALLENGE Road Sorrento, FL. 32776 But for me back in the sixties when I was 11 or 12 years old actually the situation in the world of normalcy was not an improvement. A few times people on the street would hand me money, feeling pity I suppose. This was not the encouragement I needed or the acceptance I wanted from society. Now that I am older, I find some people are willing to accept me for what I am and ignore my physical disability.

I first met steve when my mother put a notice on the bulletin board at Florida Junior College, advertising for a sitter to stay with me while she worked. Steve was chosen from the

many applicants who answered the ad. I used to get a kick out of going out in the front yard and watching him wash his motorcycle.

Our friendship did not stop in the afternoon. I went out to his house and got to know his mother and father, and went to their parties on occasion. We got to be inseparable buddies He has moved to California, but, I am still close to him and his family.

I latter had another sitter, Minnie, who stayed with me. She was from an agency and told wonderful stories of her childhood on a Georgia farm with many brothers and sisters and a father who was a strict preacher. Minnie also quilts embroiders, and makes cookies for friends. She remains a close personal friend of the family.

Mrs. Sandy took me from school on her bus since I was in first grade. I didn't get to know her well, however, until about the seventh or eighth grade, when she started staying with me after school. we spent afternoons in front of the television comparing soap operas, and she made laugh me at tales of her experiences in bowling alleys around Jacksonville as she explained details of her bowling feats.

All these special people have made me feel like a regular person. My goal for the future is to be as independent as possible, to have an apartment of my own, have a companion to help me with my physical needs and to chauffeur me wherever I need to go.

I have a friend who has this independence and is now married. His family was quite well off and it was easier for him to achieve these goals, whereas I realize I will have to work hard to have the type of life I want.

My parents are toying with the idea of making our garage into an apartment for me, but if my friend could get out on his own, why can't I.* As a follow-up, for those of you who might be interested, Minnie Doolittle, the sitter, which I spoke in the article has since passed away. ___________________________________ *Published: Jacksonville Journal, September 12, 1975 The lady referred to as Mrs. Sandy, is Louise Sandefur. She has since retired from driving a bus, after the death of her husband, about six to eight months previous to this writing.

Steve Rogers is out in California and has a wife and a little baby girl. About all I get from him these days is a card at

Christmas, but we still write back and forth to one another when we get the chance.

Ms. Abercrombie, Janie Abercrombie, is no longer a teacher.

She did work in the library at Sandalwood School for a little while. After leaving Sandalwood she became a stewardess with one of the major airlines. The last I heard she was up in Boston, somewhere.

My days at Sandalwood Junior-Senior High School were really an eye opening experience.

Previous to that I had been in a special grammar school for disabled children. It was actually an annex to Lovegrove Elementary. The annex was called Lovegrove Exceptional Child Center. It was comprised of ten or twelve rooms, or maybe more, I don't quite remember, of nothing but hearing impaired, physically disabled and all types of children, with all types of disabilities.

Let me tell you the story of Billy The Dog Boy. My best friend George who I met at Lovegrove those many years ago and who is still one of my best friends today. Told me the story of Billy the dog boy one day when we were sitting around swapping old memories. George has a reading disability but when he was about 10 or 11 years old the doctors didn't know how to diagnose his problem. So for some stupid reason they stuck George in the class with the hard of hearing and mentally impaired children. There was one kid in the class named Billy who acted like a dog.

He would bark and crawl around on all fours and act like a canine almost all the time. George Was in Mrs. Smith class at the other end of the building probably because they made so much noise. Sometimes when my class was taking tests at the other end of the building we would have to call Mrs. Smith class and tell them to shut-up. Or send someone down there in person to give them the message. Billy the dog boy seemed to the ring leader in the class. That class was such a handful that none of the teaching assistants wanted to work with that class. A week before to after the beginning of the school year the teaching assistant for that class quit and nobody would work with that class. So because my buddy George was the only other sane person in the class besides the teacher and sometimes we even wonder about her Mrs. Smith asks George to put his desk up against the classroom door and she would sit up against the other door so the animals wouldn't get out. She and George would just let the other kids run-a-muck that was all they could do. You could not control those kids each of those classrooms at Lovegrove had a back door that was supposed to be used in case of fire, but I'll bet Mrs. Smith used the back door in her classroom as an escape hatch when she couldn't take it anymore. My buddy George got the assistant zoo keepers job weather he wanted it or not.

When I was back in grammar school and still living at home with my parents, in my youth, I led a kind of protected existence. You know, Mom and Dad and the family were there to do things for me. THE BIG GUY At school there was a man attendant who would help all of the boys with going to the restroom, Sid was also the center's janitor but he would do whatever was needed when ever we needed him. Sometimes organize a wheelchair bean-bag football game bean-bag football is where both teams are in wheelchairs and we use a bean-bag interested instead of a football because it's easier to hold on to. Sometimes I think Sid made the rules up in his head as he went

along. It really didn't look like a football game it looked more like a demolition derby. You always knew you could count on Sid, the big guy.

When I was at Lovegrove we had a teacher that took a little getting use to because he wasn't like the other female teachers he wouldn't kiss our boo-boo's and make it all better he would pick us up dust us off and tell us to move our butts. To the kids in his class Mr. A. was like no other teacher we'd ever had before because he didn't treat us like babies, he treated us like fourth and fifth graders because that's what we were. This was back in the sixties when drugs were just becoming prevalent in society Mr. A. gave us a test on drugs and their symptoms and how to identify them this kind of test was usually given to college students but most of us in his class past it. A few days later after we took the test Mr. A. told us that a friend of his who was a high school teacher gave the same test to her class and they failed it. Mr. A. also taught us woodworking, and one time he decided he wanted to build a bar to serve drinks on at home so we helped him build a bar at school and then he borrowed a truck to take it home when it was finished while we were building the bar at school we would keep it on its side and whenever the head teacher came in the room we told him it was a doghouse for Mr. A's dog Mickey so we wouldn't get in trouble. Mr. A. drove his motorcycle to school everyday and we would wash it for him almost every week he would also teach us small engine repair while we helped him work on his bike I'll bet we were the only class at Lovegrove who had a poster of Peter Fonda sitting on his Harley Hog hanging on the classroom wall. ( Harley Hog nickname for a Large Harley-Davidson motorcycle.) On days when it was to hot to go outside, Mr. A. would take us to the physical therapy room which was hardly ever used and since it was big enough we would play indoor basketball they would put something called a climbing tower at one end of the room and they would put me at the other end of the room beside a garbage can sitting on a chair. during one of these basketball games my buddy George got stabbed in the head with a pair of buck teeth a tall girl named Ann was fighting with George for possession of the basketball and because she was taller when

they fell down George got her two large buck teeth right in the middle of his head. I guess you could say that's one basketball game that will be carved in George's memory, We call that the buck tooth basketball game whenever we think about it. Mr. A. would also do special projects with us, one day he told the head office that we weren't going to the lunchroom and he took us to the kitchen area in our wing of the school and we brought different ingredients from home and we made chicken and yellow rice for our lunch one day. There was also a kid in our class named Ray, we always thought of Ray as a human garbage can because whenever we went to lunch we would always give Ray whatever we didn't want from our lunch tray then he would put it all in a pile and eat it all at once no matter what it was bananas black-eyed peas fish mashed potatoes whatever. Ray is deaf but we still communicated with him by pointing to different things and using our own kind of sign language but the kids in the class got along fine with him. We had some good times when Mr. A. got their but it was still kind of a protected environment there.

Sometimes I felt it was more like a kindergarten than a school. At least I made it through that. we liked Mr. A. back then because he treated us like regular kids in our age group he didn't teach us much reading writing and arithmetic his was not the typical classroom but he did teach us some good life lessons. When it came to teaching us geography we helped him plan a cross country motorcycle trip. That was just a year or two out of my time at Lovegrove.

I left there in about the late sixties or very early seventies. I went from there to Sandalwood Junior-Senior High School. I started out in the seventh grade over there and went through the eighth grade.

When I was in Sandalwood I went through a process known as mainstreaming, where they gradually take the disabled student out of the special classes and put them into regular classes with ambulatory children. "Normal Children" I guess you could say. This was an eye experience for me, like I said, and it was for the other children. They had to get used to me and I had to get used to them. I was immature when I first started out over there, but, you know how it Is in high school. When you start talking about the facts of life and all that with your friends, in the hallways between classes, and when you have free time at school, you grow up and change your attitudes about things rather rapidly, This was the case with me.

Nowadays, I'm glad to say, I think society has become more accepting of the disabled person and is trying to make a place for them in the normal everyday "work-a-day world", as it were.

WRONG!!! In 1990 President George Bush signed the Americans with Disabilities act into law. I was told that the new was designed to even up the playing field and make it easier for a disabled person to get a job, but it hasn't been easy for me. The way I see it, the more job

experience you've had the easier it is to find work and I haven't had much experience in workday-society. I think it also depends upon the severity of your disability and how well you are able to overcome that disability. I'm still struggling to find a way around my disability so that I can find my proper place in the work force.

In junior high and high school, Back in the early 70's when it came to taking tests however, I did most of my written work and tests or examinations at home, because there wasn't really that much time to have anyone write for me, or to have me explain the test to the teacher. This became kind of awkward with high school and junior high teachers. It depended on how well the teacher accepted you, or me in this case. I made it most of the time because most of the teachers were understanding and would try to help me in every way possible.

After I graduated from Sandalwood in 1976, I then attended Florida Junior College, south campus. I found things to be somewhat easier over there. By this time, my parents had bought me a van with a hydraulic lift and I was able to put an ad up, on the bulletin board, for a driver.

That is to say, someone who would bring his car over to my house, park it in the yard and then this person would drive himself and me to school. We would meet later, he would drive us back to my home. He would drop me, get me set up by the telephone with a cold drink or whatever I needed. Then he would be off on his way. I would watch T.V. or do whatever I was able to do for myself, until my mom got home.

In junior college it was easier because they had an office in the counseling department at F.J.C. with one specific person that was there to help the disabled person with his physical needs, such as the restroom, lunch and whatever else might be necessary if an emergency was to arise.

It was about this time that I myself began to accept my disability and learn to live with it a little better. I finally realized one day. -I looked down at myself-in the wheelchair and said to myself, "Well it's here, there's nothing I can do about it. It won't go away. I'll just have to figure out ways around it and that type of thing. I started having those types of thoughts, then I got this idea. My Aunt was teaching nursing at this time in St. Petersburg and she asked me if I would come down, to speak to her class, and talk about what it was like to be disabled, how I made it through life and explain some of the equipment I use. So, I went down and that entire class was for a full afternoon. I really got a kick out of it. Something up there, a little voice, went off in my head and said, "You ought to do more of this and explain to the ambulatory public the "normal public", more about what it is like to be disabled, and to help society understand.

When I was winding up my term at F.J.C. (Florida Junior College) south campus, I then, as one of my final papers, set up a special class with my counselor as the teacher. at least, that is how it went through on the computer, as a special class. The requirements for a special class were: I had to write a paper about what it was like to be in a psychology group. By this type of group, I guess, I mean individuals with the same type of difficulties, in this case it was disabilities, who sat around and voiced their feelings and opinions about being disabled.

It so happened my V.R. counselor Carol Daniels, had had word that one of the V.R. counselors, on the other side of town, was setting up a group of disabled fellows to go out to a Dr. Coberly's office in the Barnett Bank Building for an hour, once or twice a week, and just sit a group and discuss what it was like to be disabled. My counselor and I, My F.J.C. counselor, that is, had figured out a way for me to do a paper on this group and also get a grade for it at the same time.

In a sense I felt kind of like a James Bond, in this case. I believe Dr. Coberly and his assistant knew what I was doing. Only those two gentlemen and myself knew that I was writing a paper on the group for a grade. It came out to be a pretty good paper. I believe I got a B on it.

While I was in the group I discovered that some of these guys had been asking themselves the same questions, from the time they were first injured, the same way I had when I first began to deal with the realization of my disability.

Questions like: what is a life on wheels really like? Each person was probably asking himself what he would do in different types of situations.

How would he deal with facing life on four wheels instead of two legs like he had been used to?

I realized that I was going through a normal process for a disabled person, but I had not realized it until then. Listening to these folks describe their different situations, I was able to compare some of the things they went through with some of the same type of situations that had happened to me. I was able to come up with my own conclusions and ideas.

After junior college, I went to the University of North Florida. Things over there, I found to be a little easier for the disabled student, except for finding people to help me with lunch and type of thing. When I had to stay all day at U.N.F., I could usually get the nurse or one of my friends from the Skills Center to feed me lunch on occasion. It would depend on how the day went and if I was able to find help or not at both F.J.C. and U.N.F. I didn't stay all day very often, and I lived on milkshakes the few times I had to stay on campus at U.N.F. For example, I have to rely on my parents to me get up in the morning and get me dressed.

Another example is my interest in T.V. production. I am still working on putting one project together. I have been working on it for a year. part of the problem is, I have to find people who will voluntarily give me the time and the physical assistance that is needed to put my program on video tape. I also needed physical help to put this book together, for which I am very appreciative.

Around 1980. a new program came into existence known as Cathedral Court. Cathedral Court was a one year independent living facility. You could live there on your own for one year and she staff helped you with any assistance that you might need. It was also set up as a training program to train a disabled person to live on his own and be as independent as possible.

It was set up by the Cathedral Foundation. I believe it is the Episcopal Diocese here in Jacksonville. It was also a joint effort between the Episcopal Diocese and the rehabilitation program of Florida.

It was decided mutually, between my parents and me, that I should give this program a try, take a shot in the program, experience for myself what it was like to be on my own. I learned a lot in that year, some good and bad. in my case, I had to have almost everything done for me, getting up in the morning, showering and someone to cook my meals and that type of thing.

I also participated in their group meetings. It was kind like Dr. Coberly's group.

The group consisted of residents of the Court sitting around discussing the same type of things we did in Dr. Coberly's group. I began to see what it is like for the people who were not born disabled, the things they had to go through to accept their disability. I began to realize that this was sort of like what I was going through at first: denying the fact that I had a disability and then gradually accepting it and now learning to live with it. I realize you can have the same feeling whether you are born with a disability or in an automobile accident, a motorcycle accident or whatever. Any disabled person has these same types of feelings.

This is where I gradually learned to accept my disability a little more. The Cathedral Court program, as far as the residents were concerned, was set up on a graduative type levels. You started out needing a major amount of help, I guess you would say: then a person would gradually progress further up the ladder as he learned to do more for himself, the less and less attendants would have to be called on to

help him.

We had people learning to cook, learning to transfer themselves in and out of bed, learning to dress themselves, learning to deal with their bowel care, such as giving themselves suppositories and transferring on and off the toilet. When you were fully versed in all the aforementioned topics you were then classified as an Independent. You could take care of yourself and do things on your own. You were still required, however, to participate in group activities, such as the group therapy sessions I described above. seeing these other disabled folks go through the program around me, I began to notice a change in some of them as they progressed through the program. They developed a sense of being more confident in themselves, showing more self assurance and having a better opinion of themselves, as they progressed through the program.

As far as I was concerned, in the Cathedral Court program, I realized that I need aid. So about six months after I learned a little bit about attendant management, that is to say, instructing somebody as to what I needed, when I needed it and how to go about performing the duties, it was decided that while I was still under the care and under the umbrella of this program. I should start looking for an attendant to live with me. In that way, by the time the program was over, I could look for an apartment on my own.

I began advertising for attendants. We put an ad in the paper, with the help of the Cathedral Center for Independent Living, which is now no longer in existence. With the center's assistance I advertised for an aide and eventually I got one.

It was the idea of the director of the Center for Independent Living that I find someone with a slow learning problem, someone who couldn't quite make it in today's society without a little help and reassurance. After interviewing four or five applicants I got one someone from a local half-way house.

I'm not going to go through all the gory details. I'm just going to hit the highlights. I would hope that the reader, from my descriptions, will be able to see what a rough eperience this was for me.

Everything went along O.K. for two or three months, then the individual that was living with me and helping me began to act rather strange. He would not take showers. He was taking better physical care of me then he actually was of himself. The whole time that he lived with me at Cathedral Court, Apt. #3, I only remember this individual taking two showers: one on his own, and one I had to have someone ask him to take, because he was becoming somewhat odoriferous.

Let's call this guy Sam. I'd rather not get into the nitty-gritty of these difficulties. All Sam would do all day was just sit around on the sofa in the living room, smoke cigarettes and stare into space, unless I needed something or wanted him to meet me at a particular time. He would not go anywhere on his own and finally one evening he didn't even go to work. (He had a job at the rehabilitation center around the corner.) He just sat there smoking his cigarette, he began acting a little weird, talking to people that weren't there, spinning around and around in circles, tapping his foot in a very rapid motion, laughing to himself out loud, brushing his teeth, wearing

the same clothes two and three weeks at a time. Even to a laymen, this is more than a little weird.

Finally, one night I went over to the office, which was right across the hall from my apartment and called my parents. I told them of Sam's strange behavior and my dad came down and talked to Sam. Sam didn't say much - just sat there smoking a cigarette and wanted everybody to leave him alone. He wanted to mind his own business. For the next two or three days he rarely left the couch. He just sat around smoking, thinking and stinking, because he wouldn't take a shower.

Finally, after telling the director of his strange behavior that I had seen Sam exhibit, I went home and spent a couple of days with my parents and tried to get my head on straight It was really bugging me and screwing me up mentally, as well as physically. My stomach was upset because of mental anguish and worrying so much I suppose.

I had set a lot of hopes pined on the guy living with me and getting out on my own, but after this occurred I could see all my hopes and plans and dreams going right down the tubes.

After spending a couple of days at home I finally had to go back to the Court and fire Sam. The half-way house and the rehabilitation program that Sam had come from would not take him back. I learned that Sam hadn't been taking his prescribed medication, like he was supposed to.

I found out that this was typical behavior for anyone in Sam's situation. After getting along pretty well on their own, those individuals often decide for themselves not to take their medication anymore. Gradually they revert back to the psychotic behaviors they displayed before they were on medication.

I found out that Sam had medication to take, but he had not been taking them, and that was the cause of his problems. I then began to realize that I'd been taking a big risk, letting an indiviual like that be responsible for my physical needs. If he had "gone bananas" and attacked me. or

something, while I was in bed, during the middle of the night, that would be "all she wrote".

Now, people we talked to afterwards, and maybe sometimes before, said, "Oh, I don't think Sam is the type of individual that would hurt Toppy" or "hurt you anything." But they didn't have to live with him like I did. They didn't see the things that were happening.

I realized I was taking a big risk. After the incident, I had to go back and complete my time at the Court. I began locking my doors. Before, I used to like to turn up my radio and sit out front in the evenings, listen to my radio, sitting in the breeze, but not anymore.

I no longer felt comfortable living in that neighborhood. I had my father put a second dead bolt lock on my door. I began locking my doors and whenever there was a knock or a sound at the door, you used to practically have to scrap me off the ceiling; because I thought it might be Sam coming back for a visit. He did come back once or twice and I got uptight and nervous. He wound up being a street bum, living on the streets of downtown Jacksonville. looking back on it now I suppose I should have tried to get another aid and tried it a little longer on my own but this experience scared the hell out of me and my parents were scared for me, my Dad said I should come home.

Since this incident occurred, I have become more wary of the street people, downtown.

Whenever I'm in the area of Cathedral Court or the old rehabilitation center, I make a point of looking over my shoulder and double checking to make sure I don't run into Sam, or any other threatening individual. I realized, through this situation particularly, how vulnerable to physical assaults disabled people really are.

The way I see it a disabled person like myself has to make two three or four times as much money as an able-bodied person. Now you may be asking yourself, why would a disabled person have to make so much money and I'll be glad to tell you. Because for me to have the kind of life I want, I will need to pay a staff of attendants to live with me and take care of my physical needs like dressing and so on. When one of my staff needs time off I would have to hire a backup person to take over for the attendant that took time off. When ever you employ someone to live in your home with you. You also have to pay workmen's compensation and any other type of insurance and employment taxes that may be required when you hire someone to work for you. Because they are your employee. I'd also like to travel a lot in a specially designed motor home.

I'd also need two or three attendants to travel with me. That's just one of my dreams for the future I have a few others. When you hire someone to take physical care of you,

you should screen the job applicants very carefully. Because I've heard stories of attendants robbing the people they are hired to take care of steeling food from the refrigerator and other personal and household items. If the disabled person can afford it I would suggest they higher an investigator to do a background check on the job applicant. Check out the new employee any way you can! Because we are talking about the personal safety and security of a disabled person and that person might be yourself or a special friend or loved one. I say the hell with invading someone's privacy, we are talking about a disabled persons personal security and safety!

I finished my time at Cathedral Court and had to go back to living with my parents. After Sam left, however, there was a newspaper reporter, Elaine Morgan, who included me in an article she was writing for the newspaper.

Through the years I've seen some of my disabled friends get married and have families. Some have married other disabled folks, in wheelchairs. For two wheelchair people to get married, I don't see how they can make it as far as their physical needs unless they have an aide to help both of them. I would ask the reader for their opinion, as far as two disabled folks getting married, severely disabled that is. Wouldn't it be compounding their problems and make things a little more difficult? On the other hand, I have seen some of my disabled buddies marry able-bodied women and I have seen disabled women marry able-bodied men.

The type of individual who marries a disabled person, to my way of thinking, at least, has to be a very understanding, open-minded individual and has to be prepared to take a lot of things upon themselves, as far as helping their spouse with their physical needs. Insisted it takes a special person to marry or to agree to take care of a disabled person.

Being disabled-a person in a wheelchair wants the same type of things in life as does the ambulatory or "normal person ". The typical American dream, I guess you would say is a little white house, a picket fence, kids playing in the back yard, in a sandbox or on a set of swings. It is achieving this that is the hard part. I'm just like these folks, I want that little white house and a picket fence and a sandbox and kids in the back yard. Rather than say --well, I just haven't found the right lady yet--I just like to look at it for myself--that the right lady hasn't found me yet.

The right lady may not have found the because I don't get out as often as other people. I haven't had as many worldly experiences. I don't think I'll ever get married, because I need to much physical care and it would not be fair to the

other person in the relationship, in my opinion.

I could ask my parents for suggestions but the procedures for meeting a member of the opposite sex has changed in the past thirty or forty years. I couldn't ask my brother living in Orlando because the phone bill would be astronomical. But things are changing for me these days. I hope that some day the right lady and I will be able to find each other never say never. however I don't know how many times I've heard a lady tell me "OH LET'S JUST BE FRIENDS." I've heard that phrase so many times it makes me sick, any time I've tried to have a meaningful relationship with a woman they flip out. When I try to work up the nerve and tell her that I would like our relationship to progress and move to the next level they don't take me seriously they start gigging with nervous laughter and then leave the area faster than a speeding bullet! I guess the idea of a relationship with a wheelchair guy scares them. If I get married that would be great, but if I don't I'm going to worry about it.

I hope that through writing this booklet, that it will help the able-bodied or "normal" person to see what it is like for a disabled individual going through life. I can only speak from my point of view, other disabled persons might have other points of new. They might see things a little differently. I'm just describing to the reader the way I feel, my own personal opinion. I hope this booklet has helped the normal able bodied individual to see what it is like for the disabled person:, of the feelings and opinions that we detail develop, day by day, and how we interact in society. I would like to leave you with a little piece of advice. Anytime the person reading this book sees a disabled person or a disabled child go up and ask the parents what its is like. If they are any type of person at all they should not mind answering your questions. But leave it up to them, if they feel like not answering your question, they will tell you. As I told you at the start of this story.

Going on a bit, I meant to mention the director of Cathedral Court, Mr. Jeff Rawlston, who is also a paraplegic with an ambulatory wife. He is one of today's modern day success stories, due to the fact of how well he has overcome his disability. He was the founding director of Cathedral Court, he organized it period. He also set up a program of the same type in Tampa, I believe it was called Self Reliance.

Life at Cathedral Court became rather monotonous. It was the same procedures, the same thing day in and day out. It not only became monotonous for the staff but it was and probably still is monotonous for the residents. So much so, that looking back on it now, I'd say it was a good experience and a nice place to visit but I would hate to live there permanently.

Mr. Rawlston, let's say Jeff, even Jeff got tired of it, he got tired of doing the same thing day after day. He pieces decided to take a job in Atlanta and go back and get his P. H. D. in counseling. So even the director left Cathedral Court because it became so monotonous with the same routine day after day. I admire Jeff. Jeff was and is like everybody' s big brother. When you had a problem you would go to Jeff. Regarding my incident with Sam, my attendant, Jeff helped the through that a lot.

Someday very soon, if things work out for me I hope I can become as independent as Jeff, or as possible for me or as self-assured of myself. I'll have to do that as soon as possible.

I can see my parents getting older day by day these days. I think it is about time for me to put the shoe on the other foot, so to speak. They have been taking care of me for quite awhile. I think that it is about time that I should cut care of my parents as soon as possible, and try to do the best I can for them. They have done the best they can for me, for allot of years.

I'm happy to say that the disabled person and today's society is gradually being accepted into today's business world. A good example of this would be my two-part internship. Part 1 was at the Duval County Courthouse and part 2 was served at the United States Marshal's Service, Middle District of Florida office. At the courthouse the Judge display explained to his staff that I was just their to observe courtroom procedure and gradually he and his staff got used to seeing me day after day, and they accepted the as a normal fixture in the courtroom.

Because my time at the Marshal's office meant so much to me and since it is probably as close to a job in law enforcement as I'll ever get please let me share the experience with you.

When we hear the words U. S. Marshal, we usually think of the old TV show Gunsmoke, and Matt Dillon cleaning up the streets of Dodge City with his trusty Colt 45. But the modern day Marshals aren't like that. In my opinion a person who works for the United States Marshals Service shows a special feeling of pride and integrity that comes from within themselves. In 1983, I had the privilege of serving part of my college internship with the U. S. Marshals Service here in the local office. The people in the local office accepted me quickly and I really enjoyed the time I spent with them. It's something I'll always remember. On Saturday July 13, 1985, Jack E. Moore, Chief Deputy for the Jacksonville office of the U.S. Marshals Service, was shot and killed and the circumsnces surrounding and reasons for his death may never be fully realized or understood. The Marshals Service not only lost a fine officer, but I also lost a friend. So long Chief you will be missed.

The following is part of the final term paper I did for college.

OFFICE of THE UNITED STATES MARSHALS SERVICE. The first United States Marshals were appointed by George Washington, one for each of the 13 states, to attend to federal courts and enforce their laws. This is still a function of today's United States Marshals Service (USMS). Gradually, after service under many Departments of the Treasury, war, State, and interior, it is now controlled by the Department of Justice at the direction of the Attorney General. Full bureau status was given in 1974. While marshals are still operating appointed by the President, deputies are now employed under merit system procedures. 1 The duties of the modern-day USMS include servicing summonses, civil and criminal subpoenas on behalf of courts; executing arrest warrants; the movement and custody of federal prisoners; protection of witnesses to organized crime-seizure and disposal of property under court orders; security of federal court facilities, judges, jurors and other trial participants; serving as an alternative to military intervention in civil distance, riot or mob situations; and collecting and disbursing federal funds largely used as witness fees and prisoner expenses.

Seldom involving any risk, The serving of subpoenas does sometimes involve riot surveillance and lengthy research.

1. U.S. MARSHAL SERVICE, THEN AND NOW: Office of the Director, The United States Marshals Service, U.S. Department of Justice, Washington, D.C. 1978.

On the other hand, serving warrants for arrest may be complicated by potential for escape or evasion and makes this was of the more difficult duties of the USMS. Usually the individuals being served are probation and parole violators or fugitives who fail to appear in court. In the local office part-time help often does this job which can be as simple as checking an address in the city directory or, as in the recent case of a known evasion felon, require the services of the marshal and two armed deputies for backup. An incident which occurred while I was in the Jacksonville office of the USMS in the Middle District of Florida, was the case of Gordon kahl in North Dakota. Kahl had protested against and received a conviction for non-payment of federal income taxes. In Medina, North Dakota, two marshals who blocked his car in order to serve a warrant for probation violation were shot and killed by Kahl. He is still at large.

Responsibility for the transportation coordination and custody of federal prisoners from the time of apprehension to delivery to prison facility for a sentence has always been a major function of the USMS. They use a fleet of vans, buses, automobiles and aircraft dispatched by means of a centralized communication system.

Locally the marshal's office contracts with a city or county facility to house federal prisoners nights and weekends while they are going through the legal process. An early loading morning run is made to pick up prisoners who are required to be in court on a given day.

Until his scheduled appearance in the courtroom, he is detained in a holding cell in the federal building. He is escorted to and from the courtroom by courtroom marshals. Meals are obtained throughout the day for the prisoner until he is driven back to his cell in the County or city jail.

Long distance transportation is more involved when commercial airlines are frequently utilized and reservations, travel time, and agents available for travel must be considered.

Authorized under title 5 of the Organized Crime Control Act of 1970, witness security (WITSEC) gives personal protection to witnesses whose testimony is against activities of organized crime. Sometimes a change of address and identity are necessary: passports, birth certificates, marriage licenses, school records, and all other identifying data are provide for whole families. A method of communication for the families of such relocated persons is to mail a letter within a letter to an office of the USMS, which in turn forwards it to another office until it is delivered to the original addressee. By the same method, family meetings are set up by arrangements through the USMS which result in the protected persons being escorted to and from a neutral point of meeting I. e., a motel room or apartment.

During trials, WITSEC provides witnesses with round-the clock protection with the assignment of shifts of deputies until threat is over. These deputies have been known to do personal errands and escort the witnesses to another city for recreation or shopping.

Seizure and disposal of property-lands, goods, and ships with their cargos-has been a task of the USMS since 1801. An example was the auctioning of Timothy's Restaurant (formerly known as

"Abbott's) in Jacksonville, the USMS also s seizes ships involved in federal course cases.

During prohibition, seizures of liquor and its distribution was an important activity.

Court security is a highly technical and complex function of the USMS. This involves the use of electronic detection equipment and intercommunication devices. In the trial of the 14 members of a motorcycle gang, a metal detector was

used outside the courtroom to screen each person entering or leaving in order to prevent a weapon from falling into the hands of one of the defendants or some friend of his who might be a spectator.

Two weeks before the assassination of Federal Judge John Wood in San Antonio, Texas the judge who had been under the protection of the USMS during a highly-publicized narcotics trial, requested that the security provided him and his family be with lifted. It is the opinion of a local deputy marshal that the judge would still be alive today had this protection not been removed.

After the judge was shot, the party allegedly responsible was tried in Jacksonville and elaborate precautions were taken to secure the courtroom and all the participants involved in the trial because of the defendant's alleged connection to organized crime. On hand to oversee the handling of the defendant's personal security was United States Marshal William Jones of the western District of Texas.

The USMS now appears to be more acutely aware of the need for personal security for members of the judiciary, especially since a local judge has been the recipient of several deaththreatening letters. (In this particular instance, however, it was felt that the sender who is serving time in a state prison, was using this as a ploy to bring about a change of environment and thus break the monotony of his confinement.) The Whiskey Rebellion of 1791 was the first notable instance of the USMS involvement with civil disturbances. Other incidents include labor disputes and disturbances such as those at Little Rock, Arkansas in 1957, in Montgomery, Alabama in 1961, and wounded the South Dakota in 1973.

A highly trained Unit known as Special Operations Group (SOG) was established in 1971 it is comprised of regular deputies subject to round-the-clock call, who have completed rigorous training emphasizing physical endurance and use of specialized weapons, tactics and techniques.

The U. S. Attorney General has in the past requested their participation and domestic security, wartime activities such as alien administration programs, and the apprehension of selective service violators and military deserters. They are also called upon to provide security for domestic transportation of nuclear missiles, to oversee installation of security at National Guard armories, and to insure compliance of federal security regulations at financial installations under the bank Security program.

Collection and disbursement of federal law enforcement funds was first designated by president Thomas Jefferson. In the Jacksonville office of the USMS, vouchers enable witnesses to collect to travel expenses plus compensation for the time away from a job, for food and lodging.

Expenditures related to witness protection and the costs of prisoner maintenance

and transportation are disbursed by certain designated office personnel who are also deputized for specific duties as needs for such services arise.

The rigid requirements for the performance of the duties a of the USMS are most challenging, involving irregular hours, exposure to violence, personal risk and severe conditions; much physical exertion, and considerable travel. There exists a feeling of fraternity among the members of the USMS throughout the country. Common risks, attitudes, an loyalty to principles Contribute to this comraderie that is prevalent across the nation.

After the North Dakota slaying of the two federal marshals, the local office received a wired communication being directed to all branches of the USMS. It stated that a fund was being set up for the families of the two slain marshals. The response was unanimous and a generous check accompanied a signed sympathy card which went out to the North Dakota office for transmittal to the proper parties.

The members of this agency whom I met were most businesslike an dedicated to the performance of their duties. Their consideration an humanistic tendencies were also apparent and indicated to me characteristics and well-rounded personality necessary for a position in the United States Marshals Service.

UNITED STATES MARSHALS SERVICE, THEN AND NOW. Office of the Director, The United States Marshals Service, U.S Department of Justice, Washington, DC. GPO, 1978.

Even at the Marshal's office there is a feeling of close friendship between the folks that work in the office. Even they eventually accepted me into their family circle. They asked if I would like to stay on for as long as I liked. Since I was serving no useful purpose that I could see, I felt that it was better for me to leave and look for paid employment elsewhere.

I still hear from the folks at the Marshals Service from time to time and I've developed a great deal of respect and admiration for them and I will fondly remember the time I spent with them.

I guess what I'm trying to at ask the reader to do is when you talk with a disabled person, try to think of their capabilities instead of the persons disabilities. Try to look at the person behind the disability.

I feel doing this book has been not only a tool to help ambulatory persons see what it is like for disabled persons, but it has also in a therapeutic tool for me. It has been a way for me to get some of my feelings off my chest. I hope

it has helped the reader gain a little insight into what it is like for a disabled person. One last question for the reader, this is something to think about. Please describe the physical sensation of what it's like to walk around?

1996 My father died in 1994 of cancer, but a few must months before he past away he told me to get my act together and be sure and look after my mother, because I think my father new he was going to die soon. How am I supposed to honor my fathers wishes when I can't even get a job?

A few years ago Vocational Rehabilitation [V.R] purchased a 1800 dollar voice activated computer for me, the text you are reading now was composed with the help of the computer.

Now that I have the new computer I hope I can find some paid employment, but no luck so far.

Even with the help of an expensive peace of machinery like this I'm still getting very discouraged about finding work. These days I'm trying to talk V.R. into getting some upgrades for my computer. You know it's funny I've had four different computer tutors helping me figure out different problems with my computer and they each tell me something different. I have to get help because I can't physically program the computer myself I can't put the disk in and that kind of thing. I thought up a good joke the other day, question-[How do you drive four computer experts crazy? Answer-[Give them a computer problem to work on and lock them in a room for two days and they would probably kill each other before the time was up. My sister says computer people like to practice on other people, and she's probably right.

In 94 I was going to the local office of cerebral-palsy to something they call their job club. But most of the people in there have other problems besides cerebral-palsy. Most of the folks wind up with jobs flipping hamburgers at MacDonalds. The job search for me is going slower then molasses. I don't think I fit in to well over there.

Remember back a few pages when I told you I did not want to wind up in a nursing home or any other long care facility? I would rather be dead!!! I also know a few people that feel the same way they say that if it wasn't for their spouse they would already be in a nursing home. As it is now they are only one step away from a facility like that if it weren't for their wives and if it weren't for my mother. I know how they feel, it's like having one foot in the grave and the other foot on a banana peel.

When you live in a nursing home or a long term medical facility like that, I think that if you're not nuts when you first arrive you soon will be if you stay there long enough.

I think it's somewhat like the Stockholm syndrome. The

experts say it's what Patty Hurst went through back in the seventies when she was captured by the SLA. Simply put its when you start agreeing with your captors in order to stay alive. But in this case you could start taking on the characteristics of the more retarted residents in order to make life easier for yourself, if this occurs it might lower your intelligence quotient or IQ. Then you'd be just like everybody else in the place. That's what being in a nursing home would be like for me. I told my family that if they ever did that to me I would take legal action against them, and I mean it!

I hope this book will help the reader see a little bit of what its like to live with a disability, after you read this I hope it makes you stop and think. Don't be afraid to ask questions, how else are you going to learn anything new?

My Best wishes to all who read this.

Sincerely, Toppy L. Carter, III I wrote this to the State a while back to try to explain things from my point of view, but the politicians in Tallahassee are so dumb, I don’t think they get it.

1

February 22, 2005

Shelly Brantley 1317 Winewood Boulevard, Building 3 Tallahassee, Florida 32399 Dear Ms. Brantley, Below is a copy of my letter that I give to anyone who keeps a file on me. I am almost fifty years old and have been through Vocational Rehabilitation twice. I have been turned down

by Goodwill Industries probably because my IQ level isn’t low enough. I have even tried to send a copy of my book, which explains my life in detail, to the governor. I think all he did was send it to another department. I understand why you are proud of your program; it may work for some people, but not everybody. We all have our own individual life stories. My life is my job!

To all who read my files!

I've been told by those who help me live independently that now and then they must up date the records. Nothing ever changes for me and if it ever does I'll be the first to tell the world!

Wheelchair guy with CP (super quad). Date of birth 9/19/56.

Would I like to work?-yes, but I am not able to. Why? Because-1.I need to much physical help, 2. Age any starting pay these days is peanuts that would not do. 3. I would need to make 6 to 10 times your pay now to support a rotating staff of six. 4. Because my life is a job, I'm work for the health care staff that get me in and out of bed, any time staff is late I'm late and so on. Also some of the staff I get are not so bright, understand?

For legal matters-see Lawyer Bill McMenamy phone 904/354-8080..........

More information on me? See the person with this file.

Sincerely, Toppy L. Carter, III email TCarter371@aol.com