“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Friday, December 28, 2012

Entering into the suffering of others

We are in the midst of the Christmas season.  To the Christian, Christmas is about God "emptying himself and taking the form of a servant" (as it says in Philippians 2).  To use human terms, Jesus as God was having this perfect existence as God.  But He saw the desperate condition of His creation and came to them to save them, to give them hope, to be with them as they are.  Once again as Philippians says, "He didn't think equality with God was a thing to be grasped" or held onto.  He left his perfect existence to help us who have no perfection.

I have been thinking about this idea a lot.  I know very little about suffering compared with probably most of the rest of the people in the world.  I have a perfect family, a perfect job, dear friends, have never known hunger or want.  Yet all around me are people who for a variety of reasons experience all forms of suffering.  If I am to follow the example of Christ, I will recognize that perhaps I am not experiencing suffering, at the moment, so that I can support and come alongside of those who are.  As my son has told me, he has wept over suffering, but not his own.  Rather it is the suffering of others that he has entered into.

Hurting people are a morass of difficulty sometimes.  If we try to dance around them with platitudes we may help a bit, but we will not know their suffering.  People's lives are often a mess, and you cannot help if you do not get messy yourself.  A homeless man that I know has often told me that I want to take "an arm's distance approach to helping" meaning that I am not willing to dive into the difficulty that is his life.  I am sure there is some truth to that.

1 Corinthians 12 talks about the body of Christ as a metaphor for the church.  It says if one part suffers the whole body suffers.  I don't think that is true.  Perhaps that is the way it is supposed to be but I don't see that being practiced to the degree it should be.  In order for me to suffer with you, I need to enter into your suffering in some significant way.  For you to suffer with others, you must enter into their suffering in some way.  I can't really tell you how to do that, for you, but you won't have to look to far to find hurting people whose lives are a mess.

Follow the Christmas message of Christ who although He was in the form of God did not hold onto his right to be left alone as God, but humbled himself and took the form of a servant.  Why he would want to enter into the sinful muck that is our lives is unfathomable.  But He did it out of love which is a good motivation for us as well.


Wednesday, December 12, 2012

A Nation of Scrooges?

In light of the holiday season, I thought I would post part of an article I wrote based on a presentation I did back in 2001. Please forgive some of the outdated language. I have cited it a couple of times in the past, however, here is a larger excerpt. For the entire article, go to this address Scrooges article.

A Nation of Scrooges?

In Charles Dickens’ famous A Christmas Carol, Scrooge is approached by agents of a charitable foundation. In response to their request for a donation, he remarks,
“Are there no prisons? . . .And the Union workhouses?” demanded Scrooge . . .”Are they still in operation? . . .The Treadmill and the Poor Law are in full vigor, then?” . . . “Oh! I was afraid, from what you said at first, that something had occurred to stop them in their useful course,” . . .”I wish to be left alone” . . . “since you asked me what I wish, gentlemen, that is my answer” . . . “I help support the establishments I have mentioned – they cost enough: and those who are badly off must go there.” (p. 18, 19)

These words helped to establish Scrooge as one of the most infamous villains of western literature. The label of “Scrooge” is used as an insult, implying one lacks generosity and caring. However, in America, Scrooge’s assumption that because he pays taxes he is therefore removed from any individual responsibility to the disabled or disenfranchised, may have become the standard operating procedure, the accepted practice, the “state of the art.” Like Scrooge, Americans may assume that their taxes are adequately providing for those in need. Scrooge’s problem was that he had no direct contact with the poor (in his case). Now if the poor were regularly in his midst, if they were somehow a part of his life, if he developed relationships with poor people, then he would have recognized that the state only provides a subsistence level of support. Scrooge would have seen that much more is needed. As Dickens’ gentleman noted, “ . . . they scarcely furnish Christian cheer of mind or body.” This knowledge might also have caused him to be held responsible on some level, for their well being.

Has America become a nation of Scrooges? From the White House to the Congress to Main Street, Local Town, Americans have substituted personal concern for their neighbors with the an Orwellian notion of government as our big brother who looks after us and provides for us. It seems human services are the government’s obligation and our right. If I am not being cared for properly, I can blame my congress person or the president as it is his or her responsibility. Community responsibilities are scarce at best. Communities have been replaced by political power bases, caring community members by professional service workers or service providers, dependable friends by acquaintances or chat room regulars. The notion that my local community has some responsibility for my well being, solely because I am a member of the community is tantamount to foolishness. In fact, the move toward personal peace and individualism described by Robert Bellah and his colleagues in Habits of the Heart has even invaded the family to the point that individual family members are more concerned about what is best for him or herself than what is best for the family.

Even in Scrooge’s day, the local community was largely held responsible for its own disenfranchised. The Poor Law, established in the 1500’s coincided with the change over in Britain from Catholicism to the Church of England. This secularization of religion, caused a change in deference from Pope to King. The result was also a secularization of the religious charity which had been carried out by monks as well as individuals within churches. Parliament then assumed the position of influencing how local churches should care for their “dependents.” Laws were passed giving local parish officials the ability to increase church contributions (freely made in the past), with taxes in order to serve the needy. This early secularization of human services found its way to the United States with new world settlers.

Scrooge’s workhouses, also know as almshouses, were institutions often built upon humanitarian principles where the poor could go to both earn a wage and learn vocational skills. Clearly the predecessor of currently embraced work programs, they too found their way to the United States. The Poor Law was one of the earliest permutations of welfare. Lieby (1978) states that these English patterns remained our fundamental provision for the needy until the Great Depression of the 1930’s.

Secularization also influenced the professionalization of human services. The 1800’s witnessed the birth of professional societies whose exclusive focus was pauperism, its study and prevention. But secularization is not an evil to be opposed. Religious groups themselves led the way in advocating for governmental social services, as it was thought that only through government, would adequately funded social services be developed.

Even this brief overview demonstrates how human service delivery progressed from local church based groups, to organized charitable groups, to state delivered supports. With each step in this progression, while something was gained, something was lost. What has been gained is a variety of dependable services provided to individuals, largely at no cost to them. But what was lost is caring and community connectedness. The individual helper was replaced by the government, and the mindset that it is some highly trained person’s responsibility to help my neighbor. The reality of the situation is that both are required, both are necessary.

It was Alexis De Toqueville in the late 1700’s who stated, “Under democracy’s sway it is not especially the things accomplished by the public administration that are so great.” The main attribute which De Toqueville praises is democracy’s ability to get out of the way while facilitating the citizen good works. Later in Democracy in America, he speaks of a “restless activity . . . superabundant force . . .energy never found elsewhere” which can indeed do wonders if given free reign to act. Additionally, it will only rise up to act in the absence of something better. That is, it can be stifled if it perceives it is not needed.

You are reminded of my contention that the standard operating procedure for most Americans relative to the needs of disenfranchised individuals is Scrooge’s original response; that of an infamous villain of western literature. “I pay taxes.” In other words, “It is the government’s responsibility, it is not my personal responsibility.”

I remember a woman at my church who’s husband was jailed for embezzlement. As a leader in the church at that time, I was contacted to help her. In an attempt to excuse myself from responsibility, the following words came out of my own mouth, “I have no training in working with families of felons.” The words had hardly been spoken, before I realized how indoctrinated I had become. I had bought the lie that it was some trained individual’s responsibility to help this family. This was in spite of the fact that help that was needed was obvious. There was the need for emotional support, babysitting and help with finding a job. Special efforts needed to be made so that the family would not be ostracized. Yet there I was, hesitating to help as I thought about the governmental services to whom I might refer the family.

Other examples quickly come to mind. If an acquaintance is out of a job, I think of how I might help him. However, if he is in a wheelchair, I wonder if he has contacted the Department of Rehabilitation. In a real life situation, I knew of a disabled woman who had been raped. However, her care provider just took her back to her group home after the incident because it was after hours, and the Department of Developmental Disabilities was not open at the time.

Without De Toqueville’s superabundant force, the end result is a tax funded human service system which is top heavy. A human service system which is over-professionalized and specialist dependent. Being top heavy and thoroughly professional, it is overworked and understaffed. It’s face to the public, however, is that you need us to live your lives.

Three Quotes

The interaction between Scrooge and the charitable agents reveals a great deal. Using three subsequent quotes from the dialogue between Scrooge and the charitable agents, let us briefly examine the plight of the disenfranchised and what has become the American response. Please also consider how faith groups might contribute to the solution.

“Many can’t go there; and many would rather die.”

The first observation of the men collecting for charity, is, “Many can’t go there; and many would rather die.” That is, for whatever reason those in need often shun help. The question to ask is whether they are shunning help, or simply help in the form in which it is offered. Clearly there are those with mental illness, addictions or other issues who as a direct result of their disability cannot recognize assistance.

I am acquainted with a homeless individual who’s mantra is, “I need a program.” On one point, several people rallied around him and developed what they thought was a very good program. Their approach included leasing an apartment that was actually a small house for him over a six month period. They then linked him with psychiatric assistance where he was evaluated and given a regimen of counseling and medication. Others provided furnishings for the apartment and food staples, down to cat food for the man’s cat. In the end, the man refused the psychiatric help, refused to take the medication, turned his apartment into a storage unit to the point that he couldn’t even enter the apartment to use the facilities. He was ultimately evicted partly because he used his yard and the basement of the adjoining building for further storage. When confronted about his lack of cooperation with the help provided, he responded, “You don’t get it! That approach was destined to fail from the start. The psychiatrist didn’t know what he was doing, and renting only contributes to the coffers of the city’s wealthy, destabilizing America’s economy. I need something more than an arm’s distance approach. I need someone to roll up their sleeves and do something. I need someone to take me into their home, to let me live with their family.” It is debatable as to how many people this man represents, but clearly he would virtually rather die than submit himself to the kind of program (a program which seemed great to me) that was developed for him.

O’Henry made a similar observation in his story, “The Cop and the Anthem.” A homeless, perhaps mentally ill man named Soapy, seeks to be arrested so he can spend the winter at the island (jail) and out of the cold. O’Henry writes,
“. . .And now the time was come. On the previous night, three Sabbath newspapers, distributed beneath his coat, about his ankles and over his lap, had failed to repulse the cold as he slept on his bench near the spurting fountain in the ancient square. So the Island loomed big and timely in Soapy’s mind. He scorned the provisions made in the name of charity for the city’s dependents. In Soapy’s opinion, the Law was more benign than Philanthropy. There was the endless round of institutions, municipal and eleemosynary, on which he might set out and receive lodging and food accordant with the simple life. But to one of Soapy’s proud spirit the gifts of charity are encumbered. If not in coin you must pay in humiliation of spirit for every benefit received at the hands of philanthropy. As Caesar had his Brutus, every bed of charity must have its toll of a bath, every loaf of bread its compensation of a private and personal inquisition. Wherefore it is better to be a guest of the law, which, though conducted by rules, does not meddle unduly with a gentleman’s private affairs.” (p. 61)

These two vignettes raise an interesting question. Do some people choose to be disenfranchised? I am confident that the overwhelming answer is no. However, there are those who like my acquaintance described earlier, choose homelessness through decisions they make. Deep down we resonate with Soapy’s independence. His cheeky ability to manipulate the system causes up to shake our heads and smile. However, until Soapy gets help, he will continue on in his homeless existence. His life will ultimately end as a victim of violence or disease. He will probably never know family. But like Scrooge, we may be so self-absorbed that we can see past our own front door. If such people do cross our paths, we dismiss them as incorrigible, stubborn or crazy. “Why doesn’t somebody do something?” we say. It is not until we make the effort to find out, that we recognize the quiet desperation of their lives. Ignorance truly is bliss. But life is hard and you might know it. Why? Not to live your life steeped in guilt, but rather to make a difference in the lives of others.

Our culture has placed a high premium on freedom. The idea of submission itself is untenable to many. However, submission is the correct word relative to therapeutic relationships between helpers and those being helped. Therapy is power, although not necessarily in the negative sense. Systems must make demands on those they are endeavoring to serve if they are to have any hope of changing them. A critical aspect of the helping relationship is the recognition that one individual in the relationship has the power to help, but cannot do so without the cooperation of the individual needing the help. This has been referred to as the “quid pro quo theory of human services.” That is, people must be deprived of their liberty in exchange for treatment and habilitation.

Ken Kesey’s damning indictment of human services in One Flew Over the Cuckoo’s Nest warms the heart of the non-conformist. The paranoia-induced evil of Chief Bromden’s combine is evident at every turn. The McMurphy character is masterfully developed as the savior of hospital residents, many of whom relinquished their liberty in the hopes of being made well. In the end, McMurphy delivers many “chronics” from the tyranny of Nurse Ratched, however, in reality it is a rare individual who finds healing through a battle with human services. There is some evil in human services, because therapy truly is power, and as the adage goes, “power corrupts.” However, there is also great good that has resulted in change and empowered lives. In the story, the corruption of the good led to McMurphy’s lobotomy. But lets be honest. The goal of human services is to lead the client to independence. Human service providers cannot keep rehabilitated individuals on their caseloads when waiting lists pervade. The struggle for power between McMurphy and Ratched should have been recognized as a sign of McMurphy’s mental health; the goal of human services is not to break a client like some wild horse. Neither is the goal to develop dependence on the part of the client. But the goal might be the social insertion of a disabled individual into the community, which results in community membership. Case workers are also rewarded for successful placements resulting in a termination of services. Only a deluded caseworker would hold onto clients for reasons of familiarity, as her caseload continues to grow. Connecting an individual to a community of his choosing should be the highest end.

“If they would rather die,” said Scrooge, “they had better do it, and decrease the surplus population. Besides – excuse me – I don’t know that.”
Scrooge’s reaction is typical of many Americans. That is, if they don’t know something, either they don’t need to know it because it’s someone else’s responsibility, or they think they already know it, or they simply don’t care. Scrooge in his haughty, wealth induced, confidence is used to bullying people. His wealth has brought him a level of respect and community standing which has gone to his head. There is nothing that can be told to him.

Upon embarking on a career as a professor, I was told by a non academic friend, “When you speak to a professor, always begin by saying, ‘As you already know . . .’ because many professors don’t like to be put in the position where they either don’t know something or have to admit they do not know something.” If this in the response of the most highly educated members of our society whom one would think would be less threatened by not knowing something, what of the rank and file members.

But the “I don’ know that” part of Scrooge’s response is not the most disturbing. It is the “If they would rather die, they had better do it and decrease the surplus population” which cuts us to the heart. Are the disabled and other disenfranchised groups “surplus population?” One might think so.

A local Los Angeles radio program once aired an interesting talk back/call in program. The setting was the Christmas holidays. The topic was, “Why do you hate the homeless?” For a full hour, the talk show host took calls from people who unabashedly called in to give their reasons why they hated homeless people. What was particularly poignant, was that while the diatribes went on, the host played instrumental versions of famous Christmas carols like “Silent Night” or “O Little Town of Bethlehem” in the background, while an angry caller described the foul stench or the ugly disheveled appearance of these gross dumpster divers. Without any more encouragement than the question of the day, callers clamored for the opportunity to relate why they wanted their community rid of homeless people.

This type of response to disenfranchised people is not unusual. Claiming it is the most humanitarian response, we pass laws to allow disabled people to commit suicide. Distraught human beings without hope, come to us wanting to take their own lives and we respond, “Sure.” We make the obligatory gesture of interviewing them to make sure they are of “sound mind,” and then we fulfill their wishes. Clearly, there are people who are in significant pain, or who would request that no superhuman effort be made should their lives be threatened, but as a friend of mine, Dr. Rick Langer states, “We are talking about people who if their lives are not taken today, will go out to McDonalds, or go to the movies.” This is an entirely different proposition.

Baby Doe made a huge splash on the political scene during the Reagan administration. If you will remember, some babies with down syndrome have an accompanying condition of esophageal atresia. That is, there is a constriction of the esophagus such that food cannot move from the mouth to the stomach. Although it is arguable that no surgery is routine, repair of esophageal atresia is routinely done. That is unless you are an infant girl with down syndrome in the 1980’s. The medical response was to tell parents that the individual would have a “poor quality of life,” ostensibly because of the down syndrome, and allow the baby to starve to death without surgery. After all, she will suffer with down syndrome the remainder of her live, right? I personally have know many people with down syndrome, perhaps hundreds, and can say unequivocally that very few if any at all suffer from down syndrome.

Christopher Nance, the Los Angeles television personality relates the story of meeting Ray Charles, the famous singer, at a party. After a while, Christopher asked Ray, “What is it like to be blind?” Charles’ wise response was, “What is it like to not be blind?” Obviously the life experience of an individual is his only personal experience. Perhaps he might dream about something, like a blind man wishing he had sight. But in reality, he doesn’t know what he is missing.

Individuals with down syndrome don’t suffer from down syndrome because they don’t know what it is like to not have down syndrome. If they do suffer, it is because of the society around them that treats them like surplus population.

Why do we condone, or at times even encourage these perceptions? Well, if they would rather die, let them do so and decrease the surplus population. Then there would be less of a drain on Social Security. After all, I don’t want it to run out before I am eligible (to be a drain on society). Then our community won’t have to be bothered by the homeless, or look on the disabled. Then we won’t have to park fifty feet further away from a front door, or be bothered by our elderly relatives

. . . And as Americans, you might know it.

“But you might know it,” observed the gentleman.

The third observation the solicitors made to Scrooge was that he “might know it.” That is, he might recognize that many cannot participate in the government programs, and for a variety of reasons, many would rather die than submit themselves to what they perceive as a treatment worse than the disease. It is not unusual in our society for program eligible individuals to shun participation in a program because of the rigamaroll they will have to face. However, because of Scrooge’s cocooned existence, he is able to live on in his misconceptions about how the poor live. The distance between Scrooge and those potentially benefiting from his help is so great that he is unaware of their situation.

What is required is some means whereby those individuals needing support can intrude upon the sheltered haven of those having the genuine potential to provide assistance but are not. One must believe that most people if confronted with a problem will attempt to be a part of the solution rather then contribute to the problem. Individuals will often dismiss their responsibility, however, using the trite response that they don’t know what to do. “I would love to help, but I don’t know where to start” they say. Referring back to Scrooge, after his interactions with the Christmas ghosts, he immediately grasped a hold of a course of action. The ghosts brought him into direct contact with Bob Crachit’s dilemma. He therefore used his resources to purchase a goose, buy toys for the children, assist with medical services for Tiny Tim, etc. Additionally, he sought out the agents of the charitable foundation and made a generous contribution. Scrooge recognized that individually he could help by supporting persons with whom he had direct contact while concurrently augmenting state benefits by contributing to the coffers of organizations providing services to supplement the state benefits. This course of action is obvious to the reader from the beginning of the story. The reader sees these acts as the unmistakable solution. However, what is obvious to one, apparently is not always obvious to another.

Scrooge really didn’t need the intervention of the spirit world to see the course of action he ultimately took. Perhaps the spirits, particularly the ghost of Christmas future, helped to break the bonds of his greed, but the solutions he finally adopted were nothing particularly novel. He came up with common sense solutions to the needs he observed.

I once provided an inservice training to a large group of special education teachers who worked with children with severe disabilities (severe physical disabilities and mental retardation) of various ages. The focus of the inservice was the “state of the art” in the education of these students. One of the basic premises of such educational programs is the effort to integrate students with and without disabilities together. At break, several teachers came to me decrying the fact that general education teachers with whom the worked were less than willing to integrate their nondisabled students with students with disabilities. Although I agreed that this was indeed an issue, I decided to poll the special education teachers about their own social interactions with adults with disabilities outside of work. I asked, “How many of you have regular social interactions with adults with disabilities outside of work?” Of the nearly 500 teachers in attendance, perhaps 20 raised their hands. I then asked, “How many of you have children of your own, who know the names of adults with disabilities with whom your family socially interacts?” Even fewer hands were raised. In this situation, we arguably had a group of trained professionals having significant experience with disabled individuals who were themselves unwilling to become involved in the lives of adults with disabilities. Yet, these same trained professionals expected those with less knowledge and less experience to be the ones to lead the way in the integration of individuals with disabilities into the community.

In reality, it is often the common-sensical community solutions which are the best. Professional services can be distant and too generic, while local support is more responsive and caring. Professionals also have solutions limited to their personal realm of experience or menu of services, at times overlooking real supports that are actually occurring. This professional bias was once graphically illustrated to me in the review of a grant proposal I submitted to the Office of Special Education and Rehabilitative Services, of the Department of Education. The reviewer wrote, “Why is the church viable as a focal point of integration in Southern California in the 1990’s.” Although the grant proposal never implied that the church was “the focal point” of integration, the reviewer, not being able to see past his own bias, couldn’t recognize the potential of the church (in this example) as a participant in the solution to community integration of individuals with disability. This is in spite of the fact that a significant portion of the population do indeed attend church.

Dr. Julian Rappaport took on this notion of bias through a discussion of multiple solutions and convergent versus divergent reasoning. Picking up on arguments by E.F. Schumacher, he observes that there are at least two very different kinds of problems in the world.

One type, convergent problems, are those characteristic of inanimate nature. For such problems, many solutions are offered that gradually, overtime, converge toward the right answer, one that turns out to be stable, if improvable over time. Problems of this type are either solved, or “as yet” unsolved. There is no reason, in principle, why unsolved convergent-type problems should not be one day solved forever. It is obvious that this attitude is very effective in the material world, whereby through the choice of problem, exact measurement, and quantification, all problems chosen can and will be solved . . .It is far from obvious that social problems are of this type.
"What if, rather than converging, we find that equally clear, logical answers, which are exactly the opposite of one another, are developed by equally clear, logical people; that is, the solutions diverge rather than converge?"

"This is, in fact, the case in social science over time . . .as new solutions are developed and institutionalized they become one-sided, and other solutions not seen before, and contradictory to the first, emerge . . . If we are dealing with problems that are dialectical in nature, then they will necessarily yield many divergent solutions rather than one convergent solution, not only over time but even at the same moment in time. That may be one reason why social science seems to have no single dominant paradigm in the Kuhnian sense. Usually we lament the diversity of conflicting paradigms. It may be that the nature of the phenomena are such that a diversity of paradigms is a true reflection of the things studied, which may be best understood in more than one way."

We must avoid the trap of behaving as if there can be a single best solution for a particular human service problem. We cannot be like the child whom when given a hammer thinks everything is a nail. Over generalization of solutions will result in inadvertent negative effects. This principle was illustrated in the United States during the deinstitutionalization movement of the 1970’s. Clearly the conditions of many of the institutions for mentally retarded adults were deplorable. However, a wrong solution was to simply close down the institutions, cutting the residents loose with the promise of monthly social security monies. Surely the institutions needed to close, but surely many of the sorts of supports provided within institutions needed to be provided within the community. This was an example of an issue with a paradoxical nature. If we do recognize a paradox, there will be a greater likelihood that we will be useful in solving the problem. However, we might also say that paradoxical problems are solvable, although solvable in a variety of ways.

The problem of supporting disenfranchised individuals in the community is clearly a divergent one. Yet our solutions have become convergent. Governmental agencies will only support individuals according to a specific menu of program options. Potential, existing, community, support agents are disdained or not considered because of dubious philosophical positions. In referring to the U.S. system, L.D. Park (1975) has gone so far as to say, “A confused value system by a confused government makes normalization for the handicapped virtually impossible.” Entire segments of the helping community remain unsupported or supported only with accompanying “strings attached” which may frustrate the successful manner in which community groups do their business.

This has been dramatically illustrated through the church and state separation issue. In the past, the government has interpreted the notion of church and state separation in such a way, that certain aspects of faith based community supports had to be eliminated in order for a group to receive any governmental support. Such an approach, at once evidences the type of convergent thinking we should disdain. Additionally, such decisions are made independent of a group’s success rate (in the case of faith based programs, at times above that of non-faith based support groups). In the end, individuals needing support may be faced with submitting to programs having demonstrable less success than other programs. Governments wring their hands at the societal problems they face, while at their doorsteps stand various successful programs which their philosophical bias will not allow them to consider.

Please understand my position, however. First, I am not saying that faith based programs, for example, should be the only support options available. Such a position would be no different than that excluding faith based options. No reasonable possibilities should be excluded. For example, through frequent interactions with individuals who are homeless and mentally ill, it is observed that this type of individual is difficult to serve, particularly in the community. Might it be that this individual would be better served in some type of institutional facility? It is difficult to say. Having spent time working in an institution for individuals with severe and profound disabilities in the 1970’s, I am slow to even approach institutionalization as an option for services. I directly observed the horror of state institutions, and was a vocal advocate for their closure, but was I short sighted in my advocacy? I arrived at a solution which simply converged outside of the doors of the institution, and that was foolish. Many of the programs that are touted today for the support of individuals with disabilities, will ultimately be seen as equally foolish. The range of options must be broadened to include nontraditional options that have never been attempted as well as traditional support systems which have been forgotten or progressively abandoned.

Yet, if it weren’t for the various charitable foundations, the state would truly be inundated and overwhelmed by the level of need. These so-called “natural supports” have always existed in the community to a greater or lesser degree. In fact, it was many of the natural supporters who originally pushed for the government to get involved in providing services because natural supporters were unable to meet the needs on their own. Interestingly, after the decades of governmental support provided through various human service agencies, we have come full circle. The natural supporters were overwhelmed and turned to the state. The state is now overwhelmed and is turning back to the natural supporters. But it is not as simple as that.

G.C. Stone (1979) once observed that the state provides services when what is needed is caring. This sentiment is echoed by others (McKnight, 1985). This is in no way to imply that state human service workers are uncaring. The reality is quite the opposite. Caseloads, agency regulations, and funding all impact the involvement of case workers with the individuals they support. These constraints began with the original movement away from natural support. Unfortunately, the move to bureaucracy of government support also began a move away from caring. This was not a part of the original plan, but the sheer numbers of individuals being served put the state on a road which could lead it nowhere else.

You yourself might think you have had little involvement with the state in terms of the human services it provides, and that the services are not that bad. However I need only mention two sets of letters, two acronyms, which will give you some indication of the experiences of those who are dependent upon state services: IRS and DMV. Perhaps your experience is different from mine in your interactions with these agencies, but it is suspected that the experience is generally the same. One would prefer to have no more interaction with the IRS than to receive a tax form in the mail and send it back filled out, with check, etc. (although it would probably be preferred to not even have that interaction). I have personally gone to the extend of paying cash money to people to have my taxes prepared in order to even limit the pain of this minimal interaction. Likewise is the DMV (Department of Motor Vehicles). Now maybe the attitude of the workers which is sometimes experienced there is a reflection of the clients they must deal with. It is suspected that it is a combination of the clients themselves and the sheer volume of them. However, I for one do not look forward to going to the DMV. How interesting that the American Automobile Association (AAA) has as a selling point that they will take care of registration, title transfers, etc. for their members; a significant selling point. We who are not living on a government check from month to month bemoan our interactions with the state. Why would the experiences of other individuals with other agencies be any different?

(large section skipped here)

So in conclusion, are we a nation of Scrooges? If we rely exclusively on governmental services, yes we are. If we look to someone else to help our neighbor when we have the ability to do so, yes we are. But lets get more personal. If I believe it is the government’s responsibility to take care of someone, perhaps I am a Scrooge. If I cannot name people I am helping, people who are disenfranchised, in my own live, perhaps I am a Scrooge. If my children cannot name a disenfranchised person known to my family, then perhaps I am a Scrooge. Scrooge was a villain in the 1800’s. Is he a nation today?

Merry Christmas,


Tuesday, November 13, 2012

Cause for Life

Cause for life is a program of the Joni and Friends organization's Christian Institute on Disability. 
Their website says,
Cause 4 Life Global Missions and Internships prepares today’s emerging and next generation Christian leaders for ministry, missions, advocacy, and justice for people affected by disability around the world.
Just recently, they have made a video describing opportunities for internships.  It is a very powerful video for an amazing program.  The director of Cause for Life, Rev. James Rene is a man with a passion for Jesus Christ, for the training of interns in the heart of God, and the development of ministry to persons with disabilties.  View their amazing video at the link below.

Tuesday, September 25, 2012

"Segregation feeds self-interest and integration fights self-interest"

At the meeting of the ministry directors of Joni and Friends today, Doug Mazza, CEO, made a very powerful statement.  He said,
"Segregation feeds self-interest and integration fights self-interest"

Such a powerful statement that cuts to to the quick about what are too often the motivations for segregation.  If I don't have you with me, you cannot make demands on me, so I can continue on in my own self-focussed self-interest.  I can claim that your segregation is in some way what is best for you, but in reality it is all about me. I will not need to change to accommodate you.  I will not be inconvenienced by you and your need to have me do something for you.  I won't have to change my programs, or my schedule, or make room for you in my car.  I don't need to find out about your life, the challenges you might face from agencies or the community and that makes me happy because I am focussed on self-interest.

Integration truly is the enemy of self-interest because if you are with me, I have to consider your wants, your needs, YOU, in the things that I do. Your presence, integrated with me, will make me feel uncomfortable about my affluence if I you are poor.  Your presence, integrated with me, will make me worry about whether you are being treated well by the community.  Your presence, integrated with me, will make me wonder whether you have friends and whether I perhaps could be your friend.  I start thinking about all kinds of things that take my mind off of myself. 

I have heard people at times complain about their inability to worship when people are present who are typically segregated because of their social skills, or behavior, or even appearance.  This should point to the fact that even worship is at times all about self-interest, once again.  I should be able to worship in the manner in which I have become accustomed because you have not been with me.  Don't know where you have been, but it is better for me if you are there.  Rather than coming to the inclusive definition of worship that would come with integration, I prefer the self-centered notion of worship where you are segregated.

When I think about the example of Jesus and the people who crowded him, the people to whom hs spoke, the people he interacted with and healed, I can only think it must have been a very integrated, third world group.  Yeah, people would tell others to "Shut up!" but Jesus would call their name and ask them to come and meet him.  I want to be like that.  I want my life to be integrated as much as I am can: not choosing to segregate myself from others out of my own self-interest.  I wish I was better at that then I am.  I want my lifestyle of inclusiveness to be a soldier that is truly fighting the battle of defeating my self-interest because anything that can help me to do that, will make me more like Jesus, will develop my faith, will model the reality of how life should be.  In the same way that devalued people need to be with me, I need to be with devalued people.  Not because of what I can do for them, but for what they can do for me in defeating my desire for comfort, desire to be left alone, desire for my own self-interest.

Memorize Doug's phrase.  It will impact your day to day life and how you understand the life of the Church,


Friday, September 14, 2012

"Rights without opportunity is meaningless"

"Rights without opportunity is meaningless" is how Zola (1988) characterized the issues he was discussing in reference to independent living for individuals with disabilities.  However, the same could equally characterize the right to religious freedom purportedly given to those with disabilities who live in residential facilities.
"Sure, you have the right to religious freedom, but I am not taking your to church."  Or as I have heard recently, "We are taking a break from church."  How can someone who is responsible for the lives of persons with disabilities in a residential setting say to people who have been expressing religious faith by the attendance at a church, "We are taking a break from church?"  I am about to press the issue with a particular home, but it indicates the depth of the problem.  People can be attending church for a long time (in this case, probably 10 years) and suddenly have that opportunity taken away from them on a whim by their "care providers."  Where is the state protecting their religious freedom?  Do their agency workers even know that they attend church?  If community integration really was a desire of human service workers, be they the directors of a group home or those who monitor the group homes, or those who are the social workers for the persons living in the group home, they would want to know whether those who have chosen to attend church are actually doing so.  That they don't know or care is a part of the problem.
Those who run homes have pervasive power over the lives of those who live in the homes.  I don't believe this is how the system was meant to be.  If it was meant to be this way then it needs to change, and change dramatically.  I have seen the individuals who are hired as group home "parents" and not all are great people.  I remember one home where several women lived, where the man who was the "parent" would at times show up at the front door in his boxer shorts.  Yet these are the people who are making decisions about what a person living in a group home may or may not do.

But thinking again about religious freedom, if you have such freedom, but are never given the opportunity to attend a religious group, never have the opportunity to meet people who attend religious groups, never have the opportunity to hear or learn about religion, then you truly do not have religious freedom.  In reality, you are largely trapped as the person who exited school and entered the home by the plan that was developed for you at that time.  How many of you who are reading this blog are the same person you were when you exited High School?  In these plans, there seems to be little expectation for human growth and change.  How many of you have not explored other ideas which have influenced the way you are as more mature adults today?  Additionally, the life of a student in public school, even if in special education classes, is much different than that of a disabled adult in the disability care system.  In school there was at least the possibility that you would see nondisabled peers.  Chances are the increased time you spent with your family would allow you access to people with whom you could be integrated.  However, the adult service system is almost entirely cut off from community integration, relegating people to a segregated existence with those who are paid to be with them.  Unfortunately, I think that is how people in human services want it to be because it is easier for them.  I think too many group home providers would prefer to not have community members in the lives of their residents because they bring the dangerous ideas of autonomy and rights, and the things that cause a person to have a real life.

If we truly believe that those whose lives are regulated by people who are regulated by agencies deserve rights and freedoms, then we must provide opportunities for them to exercise those rights.

Otherwise, as Zola states, rights are truly meaningless.

Friday, August 10, 2012

The centrality of disability exclusion

Imagine I was the pastor or leader of a church.  One of the members of my church comes to me and says, "We need to reach out to white (or black, or brown or yellow or whatever, for the sake of this example, lets just say white) people.  There are white people who would be a part of us if we would welcome them and include them."  Imagine if I responded, "We don't serve white people.  White people are not a priority for ministry."  That statement would on some level now be the central issue in my church.  I would now be the leader of a racist church because I would not serve people of a particular skin color.  I might have a wonderful homeless ministry, or support poor people.  But because of that stand, I am now the leader of a racist church.  There is no logical reason for me to not serve people on the basis of that personal characteristic.

Well, there are churches who will say, "We do not serve people with disabilities."  Or they may say, "People with disabilities are not a priority for ministry."  This now becomes a defining characteristic of this church.  They are known by the fact that they will not serve people with impairments.  However, this has not become a characteristic that separates one church from another because too many of them take this position.  If every church is racist, then a racist church would not be called out about their racism.  If every church is excluding people with disabilities, then an exclusive church will not be called out on their exclusion.

But in the same manner that the civil rights movement (a movement that changed society in a morally positive direction in contrast to many movements today which are taking society in a morally negative direction) called attention to racism, movements today need to call attention to exclusion of persons with disabilities such that that form of exclusion gets called out and confronted.  It should be that the exclusion of people with disabilities in a local church is something that people should see as central to who a particular church is.

"How can that church claim to love Christ and not include disabled people?" should be the kind of question that people should be asking.  "They may have a good homeless outreach, but don't try to be a disabled guy there.  They want nothing to do with those people." should be a condemnation that hits hard.  "They sure talk a lot about being prolife, but if you have a kid with autism and want to go there, well they get quiet then."

Can you see how this type of exclusion is not a choice, at least should not be a question of choice.  If I get this wrong, if I exclude people because of their impairments, it indicates I get the most basic of all Christian foundations wrong...I get love wrong.  That, therefore, makes the exclusion of people with impairments a central issue in evaluating churches.


Monday, July 09, 2012


I am an advocate for people with disabilities.  I will do my best to convince you of my position on a variety of issues, hopefully with logical argument.  However, I am not what might be called a "tolerantist."  To me, that is not a kind label for someone.  I will not force you to be tolerant.

Tolerantism in itself might feel nice.  Tolerantists want to ensure that we all get along, all respect one another and so forth.  I hope for that as well.  However, there is a difference between wanting people to get along, trying to convince them of your position, whatever it might be via solid argument and forcing them to be tolerant.  In order to force people to be tolerant, you must have no values of your own other than the goal of no values.  For to even force you to be tolerant, implies that I am imposing my values on you, my values of tolerance.  The value relativism that is enforced falls in on itself.  How can I be both tolerant and force you to be value relative?  How can I say values are relative and force you to be tolerant?  It sounds nice, but the end result is no values.  So in reality tolerantism in the name of harmony forces people to have no positions, no values, no morality.

In spite of what you might think, our government is not in favor of tolerantism because it does not believe in value relativity.  I was just in Seattle.  I promise you that I feel that I have a right to park where I want, and the government should not force me to not park where they want (I hold this value pretty much). But if I don't follow the signs that are everywhere, I will get a ticket and will have to pay it.  They do not believe in value relativism.  Most times I will surrender to their lack of tolerance of my parking values.  But there are also times when I will not surrender to their lack of tolerance.  I would say there are also times when I will surrender to their forced tolerantism and there are times when I will not surrender to their forced tolerantism.  The myriad issues to which this applies, political and social, surround us in this present time.  Increasingly because of the lack of values in our government and social institutions, I am being forced to engage in what Foucault calls "acts of insubordination" because I do not believe in tolerantism and what it attempts to do to me and other people who have values.

Right now in our society there are a variety of issues that are currently on the table.  As a Christian, my views are immediately suspect, are a lightning rod for attack because I have taken solid positions, I stand for a particular morality, I believe there is such a thing as right and wrong.  Those of us who have taken moral positions are criticized by those who may not have, as being intolerant.  Interestingly, their intolerance of both me and my positions are sanctioned whereas my intolerance of their position(s) is not sanctioned because values whatever they may be result in intolerance. 

Have Christians been intolerant or continue to be intolerant.  Of course they have an are.  However, interestingly the Judeo-Christian ethic, that was the basis of much of what America is, allows for dissent.  To borrow a quote from the Matrix,
"Damn it Morpheus, not everyone believes what you believe"
"My beliefs do not require them to" (interchange between jason Lock and Morpheus)
A critical aspect of the Christian position is choice.  People are able to choose God or not choose Him.  The lack of choice is not a Christian principle at the most basic level. 

So for people to impose their position on others, even if, or especially if it is a position of tolerance is not a Christian principle.

Now clearly I will advocate for laws that support my position.  In these and other areas I will engage in dialogue to try to convince others of my position.  I will win and I will loose.  I will choose to follow what is imposed upon me and at times I won't.  It is interesting in our time that our own federal government will choose which laws it will follow and which it will not.  I don't entirely like that, but they have on some level opened the door for people of principle to do the same.


Thursday, June 28, 2012

Social genocide

Joseph Barry is a student in the Disability Studies MA program at Cal Baptist university.  He's a sharp guy.  In a recent paper, he wrote the following.

Wolfensberger states, "We need to take a stand against the genocides of our time" (p. 101).  Not only should we take a stand against the documented genocides of past and present, but we should also continue to stand against the social genocides that exist as well.  The placement of values on persons with disabilities based on their disability status and the resulting objectification of them continues to have damaging effects on such persons.  The Church can be a leader or a hindrance in this battle and its role cannot be under emphasized.  Not only should all of us address basic issues one at a time, we should do so without wasting another minute." (Barry, J. Objectification and Value Assignment: Christian Responses to Disability, 2012).

Barry's statement is perceptive and powerful on so many levels.  We typically think of genocide as the outright taking of life, but the term might be tweaked in the manner in which he did.  Social genocide is a form of life taking that too many societies either overtly or purposefully have participated in.  Clearly I should do what I can to influence society such that it doesn't destroy people socially.  I need to do that.
But his comment about the church is straightforward.  The church can be a leader or a hindrance.  I believe at times it has been both.  I believe now it is being both.  The first step in change is awareness.  I have often stated that the first step in churches developing what has been called disability ministry is repentence.  I don't want to be a part of the problem.

I am reminded of the Luke 14 passage about the master telling the servant "Go out to the roads and contry lanes and make them dome in, so that my house will be full."  Earlier the master has said, "Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame."  The servant is told to make them come in (other versions say compel them to come in).  Perhaps they need to be made or compelled because they have been the perennial victims of social genocide.  How many times must I be killed socially before I no longer believe you?  Or perhaps I am just socially dead and need to be awakened socially in order to drag my socially deadened self to a place where there is social life.

If someone were to look at your life, would you be on the side of the social killers or the social life givers?


Tuesday, May 01, 2012

Lausanne Movement - Global Conversation Project

Received this as an email today from my colleague, Brian McKinney at Joni and Friends.
Check out the free account option and join the conversation!

"Beginning today, Joni and Friends will be initiating a month-long conversation on the website of The Lausanne Movement – an organization dedicated to international evangelization – focusing on evangelism to people with disabilities. The Global Conversation Project is designed to spur the local church into action and to emphasize selected portions of the Cape Town Commitment, which resulted from the Third Lausanne Congress on World Evangelization held in Cape Town, South Africa, in 2010. 
“We at Joni and Friends are passionate about taking the Gospel to people with disabilities, and we want to highlight the section of the Cape Town Commitment called ‘Christ’s Peace for People with Disabilities’ during this month,” said ministry founder and CEO Joni Eareckson Tada, who has for many years served as senior associate on disability concerns for the Lausanne Movement." 

"The Global Conversation Project is designed to get Christians all over the world involved in discussion on issues that require a global response. Conversations are conducted in eight different languages so that individuals from many nations can be involved. This week’s focus is “A Culture of Life Ethic“ featuring Joni Eareckson Tada’s acceptance speech, “Sanctity of Life and Disability,” which she gave upon receiving the Wilberforce Award at the Wilberforce Forum on March 30. Following Joni's speech are two response articles by Dr. Kathy McReynolds, Director of Academic Studies for the Joni and Friends Christian Institute on Disability, and Dr. Rick Langer, Biola University’s Talbot School of Theology professor with a focus on the integration of faith and learning. Sign up for a free account to get involved and enter the global conversation and involve all your “friends” and “followers” on social media!"

Wednesday, April 25, 2012

Culture by exclusion

When experts in disability studies discuss disability as a concept, they will at times discuss various models.  Minimally there will be three; the medical model, the moral model and the social model.  In both the medical and moral models, disability is totally focussed on the individual.  The medical model largely sees someone with an impairment as someone to be healed or corrected.  You own your impairment and my interactions with you are geared toward addressing your problem.  The moral model says that your impairment is due to something that you or your family or parents did.  You are to blame for this thing called impairment that has happened in your life.

If we believe either of these models are the reality, it will cause us to do things in relation to people with impairments in particular ways.  Chances are, one aspect of treatment will  be segregation.  As a student of mine, Sarah Slayman, once wrote in a paper, "Segregation centers disability within the individual."  If I follow one of these two models (medical, moral) I feel limited responsibility toward the person with the impairment, other than perhaps, some sort of therapeutic or rehabilitation based interactions.  Your life experience with an impairment has nothing to do with me.  So I even perceive my segregation of you, on the basis of your impairment, is based on something about you not something about me.

The model that emerged in reaction to the medical and moral models was the social model which takes the perspective that disability is not due to impairment but is entirely based in society.  Disability is actually the result of societal response to impairment.  It is not difficult to make the connection between how those with some form of impairment might feel in reaction to the medical or moral models and the treatment that followed and the reaction of saying that the entire experience of disability is caused by the environment. 

The connection between these ideas and the church is that if I segregate persons with disabilities, I am once again, centering disability within the individual.  I create a somewhat new class of people called people with an impairment, who are a culture to themselves.  If they are a culture to themselves, it is because the larger culture(s) have isolated them to the point that they find themselves together in an isolated group.  I may find myself as a member of a culture of excluded people, my characteristic being society's reaction to my impairment."  This experience, particularly from a Christian perspective, should not be sufficient to isolate me. Culture by exclusion is not something to be celebrated.  I make you become your own culture by distancing you from myself.   The excluded culture's characteristic being something imposed upon them by the dominant culture in more of a  moral model kind of way in response to a personal characteristic.  If we then celebrate the excluded group by providing ministry to them on the basis of their "culture" we support the devaluation and segregation by society.  In order to fight culture by exclusion, we must instead refuse to recognize the culture by exclusion and instead insist that we are one in Christ.

We therefore need to be exceedingly careful if we are involved in any activity that segregates people on the basis of any characteristic.  When we do so, we are saying that a person's characteristic and their life experience as a result of that characteristic totally resides within them and that we agree with society's way of interacting with them and isolation of them.


Tuesday, April 17, 2012

Questions and answers about friendship

5 questions…
How would you define friendship and the relation of this definition to the lives of individuals with developmental disabilities?
There are many definitions of “friendship.”  Miriam-Webster says, “one attached to another by affection or esteem.”  In relation to individuals with developmental disabilities, I would argue for the addition of the phrase that one “chooses” to be attached to another by affection or esteem verses one who “is paid” to be attached to another.  If I choose to be with you, I may be your friend.  If I am paid to be with you, I may be friendly, but under this definition I am not your friend.  There is a huge difference between being paid to do something and choosing to do something.  This is not to imply that human service workers are unkind, are unfriendly or are even unprofessional.  It is simply to say that there is a big difference between someone who is paid to be with me and someone who chooses to be with me.
How might friendship be used as a measure of the community integration of individuals with developmental disabilities?
There are several criteria that might be used to define community integration.  These could include physical integration and social integration.  It is impossible for someone to be socially integrated with others without some degree of physical integration.  Yes there are the social relationships which might occur via the use of technology, however, these types of social interaction are often not accessible to individuals with developmental disabilities because of the nature of their disabilities.  For one to be integrated into a community, most often the person needs to be physically present in that community.  Even if a person is physically integrated into a community, they still might not be socially integrated.  This has been seen in relation to integration between persons of different ethnic groups who, although they might be present physically in the same community, are not socially integrated.  Few people would look at the simple presence of a group home in a community as evidence that those living in the group home are socially integrated with their neighbors and those living on their street.  However, if an individual living in a group home could name specific individuals who are their neighbors, describe events that they participated in with neighbors (birthday parties, barbeques, etc.), talk about times in which neighbors came by for coffee, etc., one would then probably agree that those who live in the group home in the neighborhood are actually socially integrated into the community.
One might also look at participation in other activities of the larger community in terms of social events, knowing names of community members with whom one has a relationship, local stores or restaurants that have been visited, etc.  Each of these imply that community participation in the form of the activities that might indicate friendship has developed.  If I know your name, chances are that I have had ongoing interactions with you.  If I know the name of a restaurant, chances are that I might have visited that restaurant with friends, etc.  If I know the name of a particular faith group in the community, chances are that I have attended that group, know the practices of the group and know members of that group.
One other criteria might be the degree to which I am known by members of the community.  For example, if a group of people who are not paid to be with me know my name, my interests, my favorite food, my birthdate, etc., this would integrate that on some level they are my friends and on some level I experience integration with the community of which those individuals are a member.
What is the relationship between community integration, friendship and a “real” life?
It would be the unusual person who would be considered integrated into a community if the only friends that that individual had were persons who were either 1) paid to be with them, to be in their network, or 2) simply a member of a group defined by the services they needed by a governmental agency.  This is not to diminish either the caring and professionalism of those paid to work with individuals with disabilities, or the importance of friendship among those with disabilities.  It is simply to state that to truly be integrated within a community, there probably should be some non-zero chance that a person could have a relationship with people who are not residents of their adult living facility, workshop, or other government provided service.  They are simply other community members who are not regulated in any significant way by state agencies.  People who choose to have a relationship with someone simply because they see them as interesting people, worthy of friendship.

                                                                                                                                                        Where might people with disabilities go to find typically developing friends/peers in the community?
The short answer to this question is that they would go to the same places that anyone would go to develop friendships.  However, because of the regulated nature of the lives of individuals with developmental disabilities, there is the need for those doing the regulation to facilitate opportunities for natural relationships with community members. 
One place for potential relationships is with the faith group choice of the individual with disabilities.  Those in human services need to understand that 1) people have the right to such participation, 2) they should be provided a choice for the group they would choose to participate in, and 3) this opportunity impacts the manner in which support plans are either developed or understood.  Regarding number three, if a person will only have the opportunity for faith group participation if it is written in their plan, then their choice is minimized by those making plans for them.  If in planning, this form of community participation is not considered, chances are there will be little opportunity for this form of community participation in the future.  It is recommended that the potential for faith participation be a part of every plan.  Not that all would choose this option, but that at least this form of participation would not be restricted by virtue of the fact that it is not in an individual’s plan.
Second are participation in various community settings were people congregate such as work out facilities, bowling alleys, and various social groups.  There is at least the potential that people with disabilities might meet community members in these settings as they would be gathering with others having a common interest.
                                                                                                                                                                 What is the responsibility of the case worker, independent living provider and others in paid positions in the life of a person with developmental disabilities to facilitate the development of friendships?
Because of the regulated nature of the lives of people with developmental disabilities, aspects of life which might occur more naturally for those who are not regulated must be facilitated.  Those without developmental disabilities, move about the community in self-directed ways.  They visit settings they desire to, choose friendships and relationships as they please, and participate in social groups that appeal to them.  These same opportunities are minimized when one is regulated by agencies restricted to some degree by a menu of services that they are permitted to provide.  So those with responsibility must walk a line between free access to the community for those in their care, including the potential risks that any person faces who has access to the community, and limiting access to the community with the concomitant removal of real life opportunities that come with that regulation.  While service providers should perhaps not provide unlimited access to the community on one level, there needs to be reasonable access such that people experience similar risks that typical community members face.  The only way to completely protect someone is to totally restrict their community involvement to little or nothing.  However, a completely protected life is not a normal life and it will be difficult for people to develop natural relationships with community members if community access is regulated to the point that there is little or no involvement with regular community members.

Tuesday, March 06, 2012

"What would you change about yourself?"

If the average person were to look upon someone with an intellectual disability, they would see that impairment as perhaps the defining characteristic of that individual's life.  They would also, no doubt, see that impairment in myriad negative ways.  Hence the fervor for prenatal diagnosis and abortion of people having the characteristic of intellectual impairment.  One only needs to consider the "impairment" down syndrome to see this fervor.  But, how do people who have this characteristic called intellectual disability feel about themselves? 
Surely they would agree with those with "normal" intelligence that their lives are terrible because they have that characteristic. 
Surely they would do anything to not have that characteristic. 
Surely they see themselves as the pitiable souls that they are.

Or do they?

You know, it would be instructive to ask them how they feel about themselves.  If we were willing to understand how they feel about their lives, could that possibly impact how those of us with typical intellect might also feel about them?  One would hope so. Think about other people who have been or continue to be devalued.  As a man, should I simply project on women how I think they feel about their lives because they are not men?  Surely they all wish they were men like me.  How about people of different races or ethnicities than myself.  Should I project on them how I think they feel about their lives because they are not the same color as I am.  Surely they all wish they were the same color as me.  Those two statements are very offensive and no one in their right mind would state them. 

However, those of us without intellectual impairments think we know how those with intellectual impairments think about themselves.  We think we know how much they would desire to be different then they are.  We can get away with those projections on this particular devalued group, because it is OK to see people with disabilities in a negative light.  It is OK to project my perceptions on them.  It is OK even to take their lives on the basis of my projections of who I think they are and how I think they perceive themselves.  I can't get away with such pronouncements in the other areas mentioned above, but regarding people with disabilities there is no condenmation for my perceptions.  Why?
Obviously they are suffering, right?
Obviously they wish they were more like me, right?
Obviously they would choose nonexistence over being born or living with an intellectual disability, right?
I mean it is obvious, right?

If you really think those things, click on the link below and have your eyes opened.
I wish we would listen to people to find out what they think instead of projecting on them what we think.
May God forgive us...

Monday, February 27, 2012

Disability and the Church

The Disability Studies Institute of California Baptist University is interested in creating a snapshot of the current status of the Christian community's interaction with people with disabilities. To that end, a survey has been created to elicit input from various parties. This brief survey is available at http://www.zoomerang.com/Survey/WEB22EPTEFHACK . We are hoping that individuals and representatives of church, parachurch organizations, or other Christian faith-based organizations will participate in this study by completing the survey. It is our desire to have as broad a representation
as possible so please forward this survey link to anyone who might be interested in being involved. We appreciate your participation in this foundational study of the Christian community's interaction with people with disabilities.

George White
Jeff McNair

Tuesday, February 21, 2012

6 minutes


A friend of mine sent me this link.  It is very simple, nothing special going on in the video.  But it is also incredibly powerful in its simplicity.

The video shows a boy in a wheelchair in a crowd of children.  He is just sitting there, looking around, perhaps attempting to get attention with his looks at the other children.  However, for the entire video, no one looks at him, interacts with him, talks to him.  He might as well be a piece of furniture.

In the society of that school, that classroom, he is ignored.  I guess it is OK to ignore someone like him.  Perhaps he is perceived as having nothing to offer in terms of friendship.  Perhaps he is deemed to be too difficult to communicate with as he does use some sign language at the end of the video.  It appears obvious that he can understand speech from the way he interacts with the person who speaks with him briefly at the end.

We only see the boy for 6 minutes, and my hope, my prayer is that this was an unusual occurrance.  But I suspect it isn't, as society is reflected in that 6 minutes.  I don't accuse the children or even the teachers because I know how I am.  I know how I get busy and ignore those around me.  I have a friend with whom I should spend more time and he always provides my excuse for me when we are together.  "I know you are busy" he says, forgiving me for not being present.  Easy for me to forgive myself when I am not present to others who would appreciate my presence.

But when you see it portrayed as it is in this brief video, and see yourself in those ignoring the boy, it is difficult to forgive yourself.  Not a word, kind or otherwise.  Not a look, not an invitation to do what they were doing.  Nothing.  As if he wasn't there.  He might as well not be there from the perspective of those in that enviornment.

I, we have to do better.

Tuesday, January 31, 2012

a life filled with "almost friends"

That is the phrase one of my students in the California Baptist University's Disability Studies MA program, Jennifer Baca, used to describe the too often experience of people with disabilities.  It is a powerful phrase, that is damning in its implications.  Many people who experience disability have lives filled with people who are nice, perhaps because they are paid to be caretakers, or social workers, or teachers or some other role.  They are nice and perhaps they are even friendly.  But they are NOT friends.  If I am a person with a disability I need to understand that...
  • People who are paid to be with me are not my friends. 
  • People in my life who are forbidden to be my friend by their organization, their profession, independent of how nice they are to me, are not my friends. 
  •  Experts who interact with me when they are on the clock and will not or cannot visit me when they are not on the clock are not my friends.
  • People who worked with me, then worked with someone else, or changed jobs but do not now interact with me are not my friends.
All of these people are "almost friends." 
But there is a huge difference between friends and almost friends.
  • Almost friends interact with me on the basis of a menu of services.
  • Almost friends see me as a part of their caseload.
  • Almost friends do not choose me.
  • Almost friends don't recognize the potential damage they do to me by submitting to human service standards that provide a distance.
I would hope that almost friends would recognize who they themselves are, but they actually don't.  In reality, they cheapen friendship by referring to themselves as my friends, they cheapen me by thinking that I need them to be almost friends in my life perhaps because they either don't think I can have real friends, or are perhaps so unaware of my life situation that don't know that I really desire true friends.  I wish almost friends would help me find real friends and not be confused about who they are.  They may be good and caring and helpful and professional.  But that doesn't mean they are my friends, and although I need good, caring, helpful, professionals in my life, what I most need is friends.  It seems my almost friends do not understand that.

My almost friends don't seem to get that.


Wednesday, January 25, 2012

The Bible and people with severe intellectual impairments

"Should we teach the Bible to those with severe cognitive disabilities?" is a question that was asked in a weblog entitled "The Works of God." I really appreciate this blog raising this question not because it necessarily is a question in my mind, but because it is the question in too many pastor's minds (assuming the question is even considerd).

I remember a pastor once saying to me,
"No one stays awake at night thinking of how to teach the Bible to people with intellectual disabilities."
I responded, "I do!"

The larger question is how we facilitate faith development in individuals with severe intellectual disabilities and are the current content based strategies for faith development of those with and without disabilities actually doing what we think they are doing. The integration of people with and without disabilities is an important step in the faith development to all.
Anyway, I was invited to provide a response to this posting for the Christian Post, and they did a good job editing my response. You can see it here Christian Post link .
The critical question in faith development, Bible "learning" is not whether, but how. Additionally as I have stated elsewhere, the changes that need to come to the church that would facilitate faith development for all, will largely result from a change in the entire church environment, not just in figuring out some way to teach the Bible to people with intellectual disabilities. The discussion begins with the statement, "Yes, we want people with severe intellectual disabilities integrated into the church in as many ways as possible."

Once we make that statement our real goal, we will find that we will change our structures such that Bible instruction of persons with disabilities is no longer something else we do, it becomes a significant aspect of who we are. We, the church body have changed from being a church to the Body of Christ with all that that entails.

At the moment, I am not sure we really want to become the Body of Christ because we will have to change the way we do things such that we respect people we have devalued.

This morning, I was part of a meeting that began with a devotion from James 2 about favoritism largely on the basis of wealth/poverty issues. The same applies with impairment/disability issues. For me to ask the question, "Should we teach the Bible to those with severe cognitive disabilities?" on some level implies that I am justifying what I am not doing. On some level it is a way of saying "I don't want to change." It is a way of saying, "I don't want to be inconvenienced." However, if it is an honest question that I want an answer to, then perhaps I should be asking, "How can I teach the Bible with those with severe cognitive disabilities?" It is easier to try every instructional approach and even perhaps fail then it is to prove that people cannot be taught the Bible. We are way too early in this awakening of the church to the presence of persons with disabilities in the community for us to excuse ourselves from facilitating faith development in those who we have ignored.