Manual Ignored, Shunned, and Invisible: How the Label Retarded Has Denied Freedom and Dignity to Millions

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For the last three or four weeks the boy has been having a very severe headache every day. These headaches lasted for a very short while. It seems that John is very calm and harmless until his blood pressure goes up. Hunter says that when this happens he becomes very angry and seems to want to hurt something. It etches a wonderful picture of people willing to give generously to a child who desperately needed to be accepted and cared about. It also shows that they had reached the limits of their abilities to help and understand him. In there was no help available to them outside the institution to which they sent their son.

There was simply nowhere else for them to turn for assistance. Congenital syphilis was again mentioned as a reason for his problems. Polio infantile paralysis is introduced as a reason for the physical limitations on the right side of his body. On his fourth day in residence there he was seen for a psychological evaluation. Recommendation: Sterilization seems to be feasible since his foster-parents are anxious for him to be furloughed for short periods of time.

Simple training in manual tasks combined with recreational therapy are about all that can be offered. He began his examination with Simple Simon, the nursery rhyme. Trent reported, in fact, that simpletons were a known and expected part of the farm and village life of early American culture.

He went for water in a sieve, But soon it all ran through. And now poor Simple Simon Bids you all adieu. The idiot was diagnosed by the inability to speak, and the imbecile could speak but was clearly incapable of transcending a childlike state. The moron was considered most dangerous because this person often escaped notice during childhood and adolescence and became an irresponsible and antisocial adult.

These forms and levels of what was known as feeblemindedness implied pathology and required containment. That containment was provided through the social and political creation of residential institutions. Institutions as the appropriate place for people diagnosed as being mentally retarded came to dominate the public understanding of them for many decades. How can society best be protected from the ills these people create? He found that the goals of care and control were often commingled in the missions of institutions. What was provided as care for people who were judged not able to adequately manage for themselves was also rationalized as being of service to society.

It provided economic and social protection. Trent observed, however, that what was done in the name of care and protection often diminished the resources, status, and power of institutionalized people. By being institutionalized their economic and social potentials receded; they became dependent and powerless primarily because of their institutionalization rather than retardation. He described the impact of the judgment of chronicity on the lives of people considered to be retarded. The system designed in the name of caring for people described as being mentally retarded emerged clearly, and on the contrary, as a mechanism for the protection of others.

In her letter to him she explained my concern over whether John really had the ability to understand the full meaning of the decision and whether he was genuinely capable of giving informed consent for the order. She worded her letter in keeping with my assumption that John had never been declared incompetent and, therefore, may not have been helped with the decision by a guardian or advocate. She enclosed a copy of the release form that John had signed for me a few weeks earlier granting us access to his records. Just over a month later the attorney wrote saying that she had not received a reply from the physician or the Burrell Home.

She also informed me that she had resigned her position and that my case would be reassigned in a few weeks. I suspect that the resources are simply not available to these agencies to adequately meet the needs of those who call on them for help. As I later learned, he had actually received some of the information requested from the physician by the end of July. I secured these releases, sent them to him, and waited to hear something.

No word came. I wrote again in September asking to be advised on the progress of the case. I received no reply. I wrote in October, and again in November. In January I was informed that this lawyer had left the agency and that my case had been assigned to yet another attorney. John Gifford, my third attorney, pursued the matter aggressively and capably. He kept me informed of his actions and the results. He has my thanks and respect. He said that in response to John having severe headaches a CT scan of his head had been ordered. The examination revealed an infarction, an area of dead tissue, in the brain.

The letter continued: In March of , Mr. Lovelace became more lethargic and I became more concerned about our course of action if he were to sustain a cardiac 40 Ignored, Shunned, and Invisible or respiratory arrest. I then attempted to locate any relatives or next of kin to discuss this situation. However, I was informed that there was no record of any next of kin and that Mr. Lovelace was handling his affairs. I discussed with Mr. Lovelace his medical condition, the CT scan report, and.

I then asked his desires in the event of cardiac or pulmonary arrest and the maintenance of life systems following such. Lovelace indicated to me that he did not want resuscitative measures in case of cardiopulmonary arrest. I concurred and indicated on , to the. If questions remain regarding Mr.

Lovelace and these steps, please communicate with me. More importantly, how could it be that what appeared to me to be a glaring inconsistency had not been questioned? The no-code order was written on March 24, , in part founded on the stated fact that John had no next of kin. The documentation for the order that had been included with his letter, however, was dated March 25, I have also taken the liberty to see if Mental Health Services had any such records and they also have no record of any next of kin.

In writing this letter the social worker had gone beyond what had been requested of her; she had checked with at least one source outside of the Burrell Home for possible information on relatives. Still, the search was certainly not vigorous. Most striking, however, is the unmistakable fact that the order was issued the day before there was any documentation that there were no next of kin on record.

Before I contacted John Gifford about this issue, however, I received a call from him with even more startling news. John Lovelace was no longer living in the Burrell Home in Roanoke. There had been concerns at Burrell about his increasing behavioral problems, and he had been transferred temporarily to a psychiatric rehabilitation center.

There it was determined that placement in the Burrell Home was no longer appropriate for him and he had been discharged. He had then been moved to a small adult home in a rural area just outside of Roanoke. The dynamics of the move still remain a puzzle to me. John Gifford continued to pursue the matter, and his inquiries continued to uncover more surprises.

It revealed a troubling new revelation. This is the copy of the orders that. All heroic measures should be attempted in the [case of] cardiac or pulmonary arrest. On May 5th he received a response: This letter serves to clear up any confusion that may exist over the wishes of John Lovelace regarding heroic resuscitative measures. Lovelace was a patient of mine several years ago, who initially decided that in the event of massive brain hemorrhage or other medical catastrophe, he did not desire heroic resuscitative measures. Because there was some confusion regarding this documentation on his.

Burrell Home for Adults Nursing Supervisor. This was duly noted and documented in his chart. Subsequent to this, Mr. Lovelace left the. Burrell Home for Adults and my care. To my knowledge. The physician who wrote this letter was part of a system that was designed and functioned for purposes other than the care for people like John Lovelace.

It was important, however, that I shared with you the name of John Gifford. I wrote to him on May 23, 42 Ignored, Shunned, and Invisible Thanks so much for your recent letter and the copy of. I also appreciate the copy of your letter to Bob Williams [the owner of the small adult home where John was now living]. I visited John at Little Ponderosa [his new home] two weeks ago. The size 17 men , the country atmosphere, and the apparently positive relationships among people there makes it appear to be a much more positive environment for him.

I talked with Bob Williams for a while and came away feeling that he has a genuine and personal concern for the residents of his facility. As always, I appreciate the energy and commitment you are giving to the concern we share for John Lovelace and the larger implications of his case. Take care. In early June John Gifford wrote saying that he was pleased that things seemed to be better for John Lovelace in his new home.

Most importantly, however, he said that he was leaving the Department for Rights of the Disabled effective the same day. He expressed best wishes for John and said he was glad to have been able to work on his behalf. Instead, it is an autobiographical account of the life of a young African American man. Through his narrative he relates his experiences of social and personal isolation in segregated and racist America.

I am invisible, understand, simply because people refuse to see me. That invisibility to which I refer occurs because of a peculiar disposition of the eyes of those with whom I come in contact. A matter of the construction of their inner eyes. Ellison demonstrated that the meaning of ethnic differences has often been constructed by powerful majority groups in ways that have resulted in the oppression of vulnerable people. There has also been a long history of the social construction of the meaning of disability. These constructions have created the invisibility of people with disabilities analogous to the invisibility created by racism.

It is also important to understand that people with different disabilities may experience different degrees of invisibility. People with intellectual disabilities have been among the most socially invisible of all people with disabilities. The life of John Lovelace is a testament to this tragic fact.

John Lovelace was loved and nurtured by his foster mother. She understood his differences and embraced him as an individual of worth from his infancy into adolescence. Her love made him visible as a person. She also believed that she was doing what was best for him when she committed him to the institution in Lynchburg.

She could not have known, of course, that her loving act was the beginning of his journey into invisibility. The medical notes for Patient at the Virginia State Colony begin on the day he was admitted, October 14, John Lovelace at age 18 was found to be in fair physical condition. No health problems were found. On November 16, just over a month after his admission to the institution, John went home to Martinsville on a day pass. The notes indicate that seven days later his pass was converted to a parole in the care of his foster mother until January 1, In December his parole was extended until February 1.

The note for February 1 reads: Mother of patient returned him to the Colony today and reported to Dr. She asked for an extension of the furlough and this was granted through March 1, This furlough was again extended until March 31, when Mrs. Hunter returned John to the Colony. The notes for that day indicate Becoming Invisible 45 that it was her hope that she would soon take him back to Martinsville again.

Letter request for return of parole. Hunter, Martinsville, Virginia, custodian of above named patient. Patient pleasant, immature, clean, neat, tidy, in excellent state of health, free from evidence of infectious disease or somatic malady. Camp [the lumbar camp] removed to other area. Hunter reports excellent community adjustment, patient for reevaluation, and recheck dental, physical, X-ray and psychology; and hopes for recommendation of indoor mill employment under direction.

Patient readily and cheerfully goes to Hospital Ward. Two weeks later, John was again paroled to the care of his foster mother. At this point he had been on the rolls of the institution for seven months but had been in residence for only six weeks. Letters Mrs. Hunter wrote to the Colony help explain why John was only partially institutionalized.

They are printed here as they were written. The grammar and spelling must be understood as expressions from a poor woman with limited education but, as will be evident, a wealth of compassion. Harrell Jr. Dear sir in Regards to my son John R. Lovelace that I have at home on a ten day visit he seems very well and so Happy to be at home that I am asking if you will Extend his visit for some time and if he does not get a long all Right I will Braing back there.

I will be Responsible for him untill you think it best to braing him back there. Yours very truly Mrs. Hunter wrote several other times requesting the parole extensions that John was granted. One letter, written after she had returned him to the Colony for examinations and evaluations is particularly revealing of her concern for her son. Dear sir I did Return John R. The medical staff at the institution recommended this, of course, and Mrs. Hunter agreed that it was a good idea. John was discharged from the Lynchburg facility in March In fact, he had been in residence there for less than two months during that period.

Most of the time he had been in Martinsville with the person who seems to have cared more for him than anyone else did or ever would, Mrs. February 20, Martinsville, Va. I do not see any reason why my son John R. Lovelace should not be discharge from the Institution as he has not given any trouble in any way since he has been home and has been working with the Lester Hardwood Flooring Co. Yours very truly The social worker must have followed up on this letter with a visit or telephone call.

I talked with Mr. Hunter, Foster Parents, of the above named man. It seems that he has a job with Lester Lumbar Company and is doing well in this work. He does not make friends easily, but he and his father are getting along much better and they attend movies and church together.

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He pays his mother so much a week toward his room and board. He has remained well physically since he has returned, with the exception of an appendix operation, he has had no illnesses. They are real pleased with his being home and hope that they will be able to keep him. I am convinced that she deeply loved her foster son. John knew that he had been born to another woman, but he also knew that it was Mrs. Hunter who was the source of his nurturance.

Davis and Coroner J. As he passed through the kitchen and started out the door, he attempted to unbreech the weapon, and as he did so, it accidentally went off, the discharge striking the woman who was nearby churning, the bullet entering the right side of the abdomen. The 48 Ignored, Shunned, and Invisible woman died within a minute after being wounded. A sister of the youth, Virginia Turner, was washing dishes and barely missed being in the range of the bullet.

Young Turner said he was unaware that the gun was loaded, that he was in the act of unbreeching it when it accidentally went off. Etta was described in the article as being the daughter of the late John Lovelace, whose obituary, in fact, appeared in The Daily Bulletin on April 1, He was pleased with this idea. Two days after her death The Daily Bulletin reported that the Turner boy had been cleared of any charges in the killing. Technical charges of manslaughter were dropped after the case was heard in the county court. The article also mentioned that Etta had been living with the Turner family ever since the death of her father.

John was so young when his mother died and his contact with her so limited that his memories of her were naturally vague. He was not able to tell me whether he saw her often. Hunter instilled in him the memory that Etta was killed by a boy with a gun. Whatever the case, that was all that he had to remember her by.

Her death did not seem to be a traumatic recollection for him.

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In contrast, the only time I saw John weep openly was when he told me that his mother had been killed by a car. As I sorted out my confusion concerning the two stories of the gun and the car, I came to understand why he was so moved by the latter story. There were no reports to the contrary. Then he lost the most important person in his life, the one person who cared deeply about him. The Bulletin report said: Mrs. Zenia Leslie Hunter, year-old North Martinsville resident, was killed early Tuesday night when struck by an automobile.

Hunter was believed to have been waiting by the roadside for the Rocky Mount-Martinsville bus when she saw a motor vehicle approaching from the north. In attempting to cross from the eastside to the westside of the highway, she was struck. Hunter died en route to the Martinsville General Hospital.

How the Label Retarded Has Denied Freedom and Dignity to Millions

Death resulted from head and internal injuries. Hunter, born in Greyson County in , had made her home here for the past 27 years. Surviving are her husband, William I. Hunter; one daughter. When Mrs. His mother, his advocate, the one who most clearly saw him as a human being, was gone. They were also people of impressive character and deep compassion. One of my mentors was Ignacy Goldberg.

As all outstanding teachers do, he often shared stories from his own life with his students. One of his stories that I have frequently recalled, and perhaps altered or embellished in some ways, is of his experiences while working in an institution for people with intellectual disabilities in Indiana. They could not survive without the help that was given to them by other people often including help from the normal retarded and the minimally gifted.

The normal retarded were those people who constituted the mainstream population of the institution. They cared for themselves for the most part and functioned in a relatively independent fashion within the institutional culture. They were often given the most basic and unpleasant chores to do by the staff. Their rewards varied from cigarettes, to special privileges, to money, and other favors. The quality of life and the standard of care for many of the other residents frequently depended on the abilities, sensibilities, and compassion of the minimally gifted. There were distinctly different populations of people in the institutions designed and operated for the retarded, a supposedly monolithic group.

I have often thought of Dr. I believe I have seen the scenario of the three castes of retarded people in those institutions played out a number of times. Recalling his portrayal of the hierarchies and population differences in institutions helped me understand some of the social dynamics and individual behavior that I have observed. It was written from the perspective of a resident in a state mental retardation institution in the early twentieth century. London admired the work of the eugenicists, and his philosophy included the assumption that many of the mental and physical limitations found in individuals had racial and social-class origins.

Ignored, Shunned, and Invisible

On the other hand, London has Tom explain the ways in which he is superior to others within his institutional world and how they rely on his abilities for their well-being. I like 52 Ignored, Shunned, and Invisible to feed the droolers. They are very low-grade. I can walk, and talk, and do things. You must be careful with the droolers and not feed them too fast. When a new nurse comes I show her how to do it.

Dalrymple says I am, and he ought to know. But I am a high-grade feeb. Dalrymple says I am too smart to be in the Home, but I never let on. You see that house up there through the trees. The high-grade epilecs all live in it by themselves. Low-grade epilecs are disgusting and high-grade epilecs put on airs. His description of the characteristics and prognosis associated with each diagnosis is interesting and, in some cases, moving. Do you know what a micro is? But they never grow up.

They always die. He was given a new patient number, The admission form indicated that he had been living in a rooming house in Martinsville prior to his admission. He was delivered to the institution by Mrs. On the admission questionnaire she indicated that she was not related to John.

On another form she did indicate, however, that she was a friend. John was, in fact, admitted on a petition by Mrs. She said that he could not care for himself and that he had no living relatives. The same was true for Etta Lovelace when she was institutionalized for the purpose of sterilization. He diagnosed John as having cerebral palsy and associated mental retardation.

This is consistent with what I know of and observed about John. John had seizures most of his life, not an uncommon accompaniment to cerebral palsy and mental retardation. His seizures were fairly well controlled with medication in the later years of his adult life, and no seizures were noted during the period when I knew him. The rest of the time he was on parole with Mrs.

This time John would spend 22 years in the Lynchburg Training School and Hospital, with only a few days lived outside its gates. He was 27 when he was committed. He would be 49 before he left. During those 22 years he would become completely lost to the world he had known before. All his ties of relationship 54 Ignored, Shunned, and Invisible and friendship would be lost. Early in his stay in the institution a psychologist noticed that John was sensitive about his speech. She said that he apparently tried to conceal his speech impairment by talking in a voice too low to be heard. When he speaks in a usual tone, he is able to communicate rather well.

When asked to repeat, he not only becomes upset and lowers his voice but actually seems to get confused on what he is trying to say. These characteristics, of course, interfere with demonstration of his actual functioning level. Communication continued to be a problem throughout his life. It was very frustrating to him when he was not understood, even after repeated attempts. I often wondered just what John could tell me in depth about his life if only I could have understood him better.

The records indicate that he spent at least a week each of those two years sharing the holiday with Mrs. The third year he did not go home for Christmas.

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He received a package. It has been several years since John Lovelace has had a vacation away from the institution, and he has asked if it might be possible for you to have him for a short visit during the Christmas holidays this year. It would mean a great deal to John to be able to be in a home for a few days, and we would appreciate very much your taking him. John has money and could pay his own transportation by bus. We are enclosing a vacation form and a list of furlough instructions to help you in planning a trip for John, and we look forward to hearing from you.

As a result of the letter, John went home on a bus and stayed for a week. This time there was a different response. Nagler, It is impossible at this time for me to have John home.

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The way that I am working there would be no one home all day and John would be by himself. I think Christmas would mean more to him there with the nice Christmas program you have set up. Maybe we can have him home during the spring vacation. I will be on vacation and be at home with him. I am very sorry that I have to say no at this time. Letters continued to go out for several years around the holidays suggesting a visit home for John. However, there was never another response. We are writing to bring you up to date on Mr.

He was promoted as a result of his continued good behavior. We feel that he is making progress. He seems to understand why he must learn to deal with anger in a more constructive manner than acting out at others. We hope he will continue to work with us. Family contact can be used to encourage appropriate behavior. We urge you and other interested individuals to visit and correspond frequently.

You are invited to meet with us to discuss the programs Mr. Lovelace is enrolled in. We hope to hear from you soon. Rather, it is offered as an example of a systemic tendency. Institutions for people with mental retardation, like other residential institutions, have functioned to separate and isolate their residents, even from their own families.

They tended to be forgotten by the society from which they were removed. The longer they remained colonized, the greater the risk that the ties to family and community would be weakened. If they stayed long enough, the chances were great that the ties would be severed completely. There is a very good reason why most mental retardation institutions have their own graveyards. People who lived in these 56 Ignored, Shunned, and Invisible institutions for most of their lives were at high risk of outliving their connections to the external world. When they died there was no one to claim them, no one from the outside world to grieve for them.

They did not escape the colony even in death. Some families maintained interest and contact and continued to care, but maintaining ties across institutional walls is extremely hard work. It takes a very strong family, or friend, or community to withstand the wearing away of the bonds of relationship by separation and isolation. It is no accident that most of the large mental retardation institutions were built in out-ofthe-way places.

The facilities were not intended to be a part of society. They were intended to be apart from society. The same was as true of the occupants as of those buildings. It continued to be so for most of his life. Hunter to have him institutionalized. The shock of that separation from her may have been one of the reasons for his dramatic and positive change, and his quick parole and discharge.

I suspect that after her death he engaged in angry outbursts, which may have led to his second commitment into the institution. I think I can understand his anger. I imagine that if I had grown up with the physical, social, and psychological cuts and bruises that he lived with I might be even angrier. When I came to know him, I saw him at times react with anger when he did not know what else to do— when he was frustrated, frightened, or hurting. Anger is a basic and strong emotion, one readily available to us. He used it, I am convinced, as a way of trying to survive.

Unfortunately, he used it at great cost. He was usually the one who suffered the most from his angry outbursts. This number may only be the tip of the iceberg. Loosened teeth, abrasions, lacerations, and stitches were commonplace in his life. His poor balance and lack of coordination did not serve him well in these confrontations. He was also punished for his involvement in these altercations. Discipline: Lock up on ward 22C, for three days.

That proved true in my own experience with him. He liked to be busy and useful. He liked to earn money. Having a little pocket money seemed to be important to him as one of the few available symbols of independence in his life. To have the opportunity to work has often been an earned privilege in institutions of varied kinds. Whether it be the inmate, patient, or institutionalized person by some other name, it is considered an elevation in status to be trusted to work. The more able patients, as observed by Dr. Goldberg and Jack London, often did work that was assigned to the paid staff.

In return they received cigarettes, privileges, praise, and tips. In other cases there were formal work programs that provided patients with rewards or minimal monetary return for their efforts. His angry outbursts sometimes were incompatible with his working role. This was part of the growing movement toward the de-institutionalization of patients who could be prepared to live in the community.

John was involved in what was called the Work Activity Center. Again, tension apparently existed between his ability to do good work and his behavior problems. Lovelace has been suspended from this placement several times because of his abusive behavior. It is reported, however, that Mr. Lovelace is a good worker and has been given added 58 Ignored, Shunned, and Invisible responsibilities because of this. He later worked during summers at the Jefferson Car Wash in Lynchburg and did yard work for a local physician.

The idea that people with disabilities should live in communities rather than in institutions was embraced in both professional and political circles. People were moved out of institutions in large numbers. John Lovelace was one of them. He also went to work at a sheltered workshop there. Plans began to be formulated that after he completed training at the workshop he would be placed in a job elsewhere in Martinsville.

After a few months he was described as having made a very good adjustment to his new job and home. Professionals at the Lynchburg Training School and Hospital, and at Kennedy House, agreed that the time had come for John to be discharged from the institution. On November 20, , John received a letter signed by his social worker and the director of the Lynchburg Training School and Hospital.

If you remember from my last visit with you, this will mean that you are now completely free from Lynchburg Training School and Hospital. You can live and work in Martinsville, forever, just like all other men in our country. Please remember to try and save your money, and to listen to what Ms. Robertson, the nurses, the aides, and Mr. Poole tell you. They care a lot about you and want to help you do what is best. All of us here at the Lynchburg Training School and Hospital are very, very proud of how well you are doing in Martinsville.

We are very happy to be able to give you your discharge. I have enjoyed working with you, and will come to visit you again when I am in Martinsville. This book, originally published in , was a popular bestseller for years following its release. In , the philosopher and educator John Dewey ranked Looking Backward as one of the most important books published in the preceding 50 years. West awakens to a United States that has abandoned war, abolished political parties, and obliterated poverty. When West expresses surprise that what he refers to as charity has become so prevalent in 60 Ignored, Shunned, and Invisible the United States of , an intriguing exchange takes place between the two men.

Repeated Dr. Did you suppose that we consider the incapable class we are talking of objects of charity? Why naturally, I said inasmuch as they are incapable of self-support. But here the doctor took me up quickly. Who is capable of self-support? He demanded.

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There is no such thing in a civilized society as self-support. As men grow more civilized. Leete continues with an assertion of the fundamental equality of all people, regardless of individual needs or limitations, or in independence and productivity. Leete answers that each generation in a society essentially inherits most of what it knows and possesses. He asks of West and his world of How did you come to be possessors of this knowledge and this machinery which represents nine parts to the one contributed by yourself in the value of your product?

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You inherited it, did you not? And were not these others, these unfortunate and crippled brothers whom you cast out, joint inheritors, co-heirs with you? What I do not understand is, setting aside all considerations of justice or brotherly feeling toward the crippled and defective, how the workers of your day could have had any heart for their work, knowing that their children, or grandchildren, if unfortunate, would be deprived of the comforts and even necessities of life?

The eradication of what are considered diseases, disorders, and defects may become a reality before the end of our new century. Are disabilities, from this perspective, defects or human differences? Is disability a condition to be prevented in all circumstances or is it part of the spectrum of human variation?

Depending upon the answer, what does this say about the status of people with disabilities in a democracy? What does it say about their fundamental equality as people? The danger that people with disabilities will be further devalued as genetic intervention techniques become increasing available is illustrated by recent remarks made by James Watson. In his capacity as leader of the effort to map and sequence the genetic makeup of human beings, Watson also advocated careful consideration of the ethical, legal, and social implications of the Project.

Then, in an amazing contradiction, he advocated what might be termed parental eugenics. He asserted that the truly relevant question for most families is whether anything good could come from having a child with a major handicap. In the past, at the time of the Eugenics movement in the United States and in England, and during the reign of racist thoughts in Nazi Germany, there was very little genetic knowledge.

Most decisions then were made without solid genetic evidence. There were many prejudices, but almost no real human genetics. Now we have to face the fact that we soon will have real facts, and how are we going to respond to them? Who is going to take care of those people who are disabled by the genes they have inherited? How can we compensate them for the fact that many individuals are not as equal genetically as other people? It was in no way evil for Hitler to regard mental disease as a scourge on society.

And what would be the consequences of isolating genes that give rise to the various forms of dyslexia, opening up the possibility that women will take antenatal tests to see if their prospective child is likely to have a bad reading disorder? Is it not conceivable that such tests would lead to our devoting less resources to the currently reading-handicapped children whom now we accept as an inevitable feature of human life?

While it is still being presented as an economic and social issue, eugenics is also being presented as a matter of parental responsibility or irresponsibility. Although less overt, eugenics in its new form may be even more powerful than the earlier eugenics movement in its impact on the lives of people with disabilities. They believed that evolutionary theory and science could provide models for social ethics. Ultimately, the moral horrors of the Holocaust evolved from this philosophy. He was told that he was now a free and equal citizen of the United States of America. John was discharged in November He was back at the Training School in four months.

The Social Skills Center specialized in working with people with mental retardation who also needed help with controlling serious behavior problems. Central State is a large mental hospital. John was admitted there on the assumption that his violent behavior might have been the result of a psychotic episode. Unfortunately, there was no place to send him. His release summary on April 18 was positive: If respite was for an extended period of time, placement on a unit less restrictive than the Social Skills Center [would be recommended].

John was noted to interact well with his peers and to be cooperative with staff members. He participated in unit activities and classes. After a short stay there, he was placed in a large adult home in Roanoke. Two years later, he was moved to yet another adult home in that city, where he lived for two and a half years. Then after spending about a month in the Roanoke Valley Psychiatric Center, he was placed in the Burrell Home for Adults, where he was living when I met him.

The movement toward what was called community-based living for people with intellectual disabilities was a promise that had not become a reality in his life. In fact, probably because of his angry outbursts, his diagnosis was changed during this period from mental retardation to mental illness. It was evident, however, that he became more desperate and disoriented in his behavior, and that he was being perceived by those around him as more and more of a problem. Despite having been de-institutionalized six years before I came to know him, John had become re-institutionalized in the adult home system.

In that re-institutional system there was no campaign to protect people or to ensure that they were actually in community environments. Ironically, this system was a product of the theory of deinstitutionalization that never reached fruition in practice. They were receptacles with an institutional character but, ironically, with far fewer services and safeguards than had been provided by the institutions from which their residents had been discharged.

It had the look and smell of the institutions I had visited for years. They typically had brightly colored walls and windows with curtains or drapes. Others were decent if not inviting. This was different, appalling different. The Burrell Home was unabashedly institutional.

It was drab and full of rough edges. I knew nothing in advance of its size, history, or organization.

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When I pulled into the parking lot, however, I was amazed. As I mentioned earlier, I had known the building I saw earlier by another name. I had passed by it often during my childhood and adolescence. I was born in Roanoke and lived there until I left for college. These same people could clean the hospitals, including the one where I was born, but they were refused care in them. The Burrell Home was the new manifestation of segregation in an old building that had served that purpose in a different way before. The word home connotes for me a personal place, a place belonging to its inhabitants, and a place where the value of the individual is paramount.

It is a place of closeness between people even when they do not live in complete harmony. The use of the word home for an impersonal place, a place of detachment, a place where people have little control over their own lives, is a disturbing contradiction. The home that I visited that Sunday afternoon was nothing like a real home. As I approached the front entrance, I met the gaze of people sitting on the porch and standing on the lawn and around the doorway.

As I have found in similar places, they appeared to be surprised, if not startled, when I spoke to them. They seemed to expect that they would be unnoticed, not seen, to be as socially invisible as Ralph Ellison described in The Invisible Man. The real problem of being African American, or poor, or old, or having an intellectual disability in the United States lies in not being seen as an individual human being.

It appeared, in fact, that I was the only visitor. He was not there. There I found several people sitting in the thick smoke of a small room. The others took little note of me as I entered the room. It was a few seconds before John looked up. When he did I called his name and reminded him of mine. He immediately became more animated: Camp Virginia Jaycee is a very happy memory for most who have been there. John seemed happy to have a visitor and was more than willing to give me a tour of Burrell.

Now I realized that I was the only visitor in the entire building. That reality was sharpened for me as we encountered other residents of the home. Many of them wanted to talk, to show me their belongings, particularly pictures. John wanted to keep moving, as if having a visitor was too precious to share. Its residents simply had nowhere else to be and, for almost all of them, nobody who cared. Sunday afternoons were particularly lonely at the Burrell Home. John and I ended the tour in his room. The only decorations were the crafts he had made at Camp Jaycee.

We sat on his bed for a while and talked. I explained that I wanted to know more about his health, and about what should be done if he became very sick. I then asked if he would be willing to sign a form that would allow me to see his records at Burrell. He readily agreed. I am certain that his willingness had more to do with his memory of me at Camp Jaycee than with any real understanding of what I was trying to explain to him.

His vision was poor even then, and he put his face close to the paper as he signed. When his name was complete he sat back with a look of relief. For more than a decade I had been lecturing to students on the progress of the de-institutionalization movement and the promise it held for bettering the lives of people with intellectual disabilities. I arrived at my home, my genuine home, that evening saddened and perplexed. It would have been easy to condemn a place like the Burrell Home for Adults and decry its manner of operation.

It would have been easy, and perhaps satisfying in a way, to blame the problems that John was encountering on particular facilities, programs, and people. To assign blame in such a simplistic, direct fashion is tempting. It is also a mistake. Mike Hudson was just completing an extensive study of the adult home system in Virginia.

These were mostly small, mom-and-pop operations averaging about 24 residents each. The character of these businesses changed dramatically in the s when state institutions began to open their gates outward, releasing thousands of their residents. As they left these facilities, the resources that had previously been allocated to the institutions by state and federal governments for their care, and that were needed to support their lives in the community, did not follow them.

By , adult homes ranged from 4 to residents, with an average population of A common denominator for most of them, however, was poverty. It is no wonder that the quality of life for the people living in these adult homes quickly became problematic. Hudson found that licensing for adult homes was based on very low standards. Most of the private homes that housed people on public assistance paid their workers minimum wage and provided them with no real training for their jobs.

As a result, poorly prepared and inexperienced workers were often responsible for caring for some of the most disabled people in our society. At the time of his study in , Mike Hudson found that approximately 20, people were living in adult homes in Virginia. Homes found to be in violation of meeting the low standards were rarely penalized. The only penalty on the books at the time was revocation of license, and that was rarely done. The reality of the disabled and poor as an unwanted class of people was never more clear.

After the resident kicked him in the stomach, the owner pulled a gun and shot him. A few weeks later, he was charged with murdering a 59year-old resident by pushing him under scalding water. At Cardinal Home for Adults in Botetourt County, a mentally ill resident threatened to commit suicide. They are victims of a weak-kneed welfare system that has largely failed to police these operations. The report estimated that 1 million Americans lived in 68, licensed and unlicensed homes. In California, we investigated the murder of seven residents by an ex-felon manager [of the adult home] who then cashed their Social Security checks.

In Maryland, an owner continued to house 11 residents in her burned out home—one resident was robbed of all of his possessions. In the District of Columbia, a bedbound elderly woman was found by Subcommittee staff lying in her own urine, begging for food in her roach-infested three-story walk-up room. In Virginia, we found 11 former mental patients, two of whom required skilled nursing care, warehoused in an old row house. The tragic answer, as later pages will attest, is that little has changed.

It is about another one of his former students. The story has strengthened and sustained my belief in the critical difference that one person can make in the life of another. It has served to remind me for many years now of the importance of hope, sensitivity, and innovation in the work that we do and in our relationships. I have shared this story with generations of my own students, and I am pleased to share it with you.

Amy, a special education major at a small college, had reached her senior year. She told her advisor that she very much wanted to do her student teaching in a nearby residential facility for adults with mental retardation operated by the state. Amy explained that she preferred that kind of placement rather than student teaching in a public school.

Her career goal was to teach adults with developmental disabilities. So her adviser, later my professor, made the arrangements. Amy had also requested that she be assigned to work with people with more severe disabilities. Accordingly, she was given a small number of people with multiple disabilities to work with on an individual basis.

She was assigned the task of developing and implementing programs for four people during the week period of her student teaching. He had severe cerebral palsy and had been diagnosed as being severely mentally retarded. He was in a wheelchair. He had no control over the movement of his legs. He had some voluntary movement in his arms, but he could not control them very well. He was also able to move some of the muscles in his neck and face.

He could not, however, speak. The assumption noted in his records was that he was unable to speak because of his retardation. After Amy started working in the institution, something about this man, whose name was Bill, gave her the impression there was more within him than had been recognized. There was something about the way he moved his eyes, she said. The ebb and flow of social policies and practices regarding people with disabilities will be examined through the lens of his life experiences.

The book is also a story of our society, of our parents, friends, and teachers; those who in many cases encouraged us to be kind and generous to others. It is a story about the society that continues to promote values that sometimes inspire us, sometimes challenge us, and sometimes tell us to look the other way when facing unsettling human differences or disturbing human need. The isolated person, the metaphorical island to which each chapter will return, is John Lovelace.

He lived 70 years, and for all of his life his identity was that of a person who was mentally retarded. I use. An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while. David Smith. No cover image. Read preview. Synopsis A gripping exploration of mental retardation told through historical vignettes and through the life of one man, Jonathan Lovelace, whose life was marred by needless institutionalization and sterilization, and his experiences after being sent back into a world for which he was unprepared after 25 years of institutionalization.

Excerpt No man is an Iland, intire of it self; every man is a piece of the continent, a part of the main.