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

Wednesday, July 27, 2016

Programs, relationships and people with disabilities

Programs may lead to cultural change. When there are programs where once were no programs, this is a change in the culture. Whether it is a positive change or a negative change, one that excuses us from doing what is really necessary or one that puts us on the path to further cultural change is the question that must be answered.

There are programs that teach about the change that needs to occur and lead to that change. But there are also programs that are seen as the actual change, as achieving the goal. We must be careful to distinguish between these.

If there is a disability ministry in a church that didn't have one before, it has the potential to begin the cultural change that needs to occur. Excluded people are now present, perhaps spoken about when they hadn't been before. Rarely, however, do churches start out reflecting the maturity that ministries should aspire to. An aspect of that maturity is the recognition of the limitation of programs, by themselves, in achieving maturity. As has often been said in this blog, our desire is to facilitate the changes that come with relationships. But relationships can be very difficult and very demanding on individuals. As a result, we develop programs.

What we are seeking is a cultural change within the church. Programs may help to lead to such change, however, there is much more that needs to surround those programs. Any organization can develop respite programs and recruit volunteers and many secular and religious programs do. This is not to demean these programmatic components. However, the larger question for the church is how these programs are a part of the larger cultural transformation that needs to come in the church.


Tuesday, July 26, 2016

Societal perceptions about relationships with persons with disabilities and what they do as a result of those perceptions

Here is an excerpt from an article I am working on with my friend and colleague, Bryan McKinney. This is an excerpt from the latest draft.

"When confronted with the possibility of certain types of relationships, the social environment responds in a variety of ways. Let us consider a continuum of responses from the environment then look at how human services have been setting the tone for a significant understanding what disability is, particularly as it relates to relationships. Society has responded in the following ways.
1. Euthanasia
A 2016 article in the New York Post entitled, “Europe’s ‘cure’ for autism is euthanasia” made the following statement,
In early childhood, the Dutch psychiatric patient known as 2014-77 suffered neglect and abuse…He suffered terribly, doctors later observed, from his inability to form relationships…they treated 2014-77 for one more year, determined his case was, indeed, hopeless and administered a fatal dose of drugs (emphasis added).
Doctors observed suffering due to an inability to form relationships. It’s surprising that doctors evaluated interpersonal relationships. Did they then work to facilitate the development of relationships? The authors agree that the inability to form relationships could lead to personal suffering. However, if people “suffer” from the inability to form relationships, on whom can the blame be placed for that experience? If the combination of your impairment leading to social skill deficits (difficult to perhaps impossible to change) and my discriminatory eschewing of relationships with you (potentially changeable via addressing someone’s attitudes), leads to your being alone, shall we exclusively place the onus for change on you, the person with the impairment, and when you cannot change, take your life? If someone is suffering from social isolation to a significant degree because of my attitudes, this should not be the response to their suffering.
2. Abortion
Weil (2006) observed, some parents choose not to be in a loving relationship with a child with a particular characteristic, specifically disability. There are those who chose to avoid such relationships through prenatal diagnosis and abortion. As Rothman (1993) states, “decisions to continue or terminate a pregnancy are never medical decision. They are always social decisions” (p. 63). When faced with these “social decisions”, “About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion” (Harmon, 2007). Reinders (2000) relates that if a person is suffering from down syndrome, it is often due to the way they are treated by society. So if they do suffer because of society’s discriminatory treatment, our response as a society is to kill the individual with down syndrome via abortion.
3. Segregation into institutions
The development of institutions for persons with disabilities was initially based on the idea that they could be educated to the point that they no longer experienced disability. Over time, it was realized that persons in institutions largely did not improve appreciably and ended up living a life of incarceration under inhuman conditions. However, for several generations before the horrors of institutions came to light, doctors would council parents of a newborn with severe disabilities, “Don’t hold or look at the baby. It will be better for you both if she is placed in an institution. Interactions had the potential to lead to relationships which might cause a family to not place their child in an institution (Scheerenberger,1987). As has been stated,
 “Social skill deficits in persons with disabilities has arguably been the reason for exclusion of persons with disabilities. But if the traditions of those without disabilities leads to the exclusion of those with disabilities, then one must wonder who has the social skill deficits?” (McNair & McKinney, 2015 p. 43)
4. Segregation into community residences
McKnight (1989) has written,
If one would say to the average citizen, “I want you to take five men and buy a house in a neighborhood in a little town where those five men can live for ten years. And then I want you to be sure that they are unrelated in any significant way to their neighbors, that they will have no friends, and that they will be involved in none of the associational or social life of the town.” I think that almost every citizen would say that this is an impossible task. Nonetheless…systems of…community services have managed to achieve what most citizens would believe impossible-the isolation of labeled people from community life even though they are embedded in a typical house in a friendly neighborhood in an average town.
 (McKnight, 1989, p. 2)
When the experience of life in an institution came to light, people were shocked. They demanded that the institutions be closed. As people were exited to community settings, the meager government financial assistance caused them to live in places plagued by poverty. Arguably those responsible were interested in protecting vulnerable individuals from the community. As a result, the type of arrangements typified by McKnight’s description above, were then and continue now to be pervasive. Persons in community residential facilities have a difficult time forming relationships with regular community members largely because they are being protected from the community. Additionally, those vendored to provide such services fear litigation should they allow access to the community and the community access to the residents.
This has been the situation for decades and in spite of concerns voiced about this arrangement, human services appear to be satisfied with these arrangements simply because they continue and minimal effort appears to have been made to alleviate fears of litigation should residents be allowed access to the community.
5. Paid relationships
Human service agency personnel might be enlisted to be in paid relationships with persons with disabilities. Baca and McNair (2013) described the paid agents in these relationships as “almost friends.” They also found severe problems with both agency understanding of friendship and what was permitted, as well as what was or could be done in the development of relationships, particularly friendships between people with disabilities and community members. We will discuss this further, later in the paper.
6. Relationships with other clients
One might also facilitate relationships with other persons with disabilities, particularly those under the care of state agencies. Issues related to this are discussed by McMichael-Pierce (2015). She describes how activities such as several group homes getting together for an activity or two sheltered workshops participating in a party together are considered community integration. These are evidence that state agency level and local human service providers lack understanding about what community integration is (that leads to integrated, unregulated social relationships).
7. Support families in relationship
It is arguable that there is an overreliance on families to be the providers of social relationships for persons with disabilities. Society, even within the church, appears to believe that persons with disabilities are the responsibility of families almost exclusively. Typical society members have bought into this perspective thinking if they pay taxes, programs will be developed and they have no personal responsibility. That this learned behavior is common is sad. That this same behavior exists within the church in spite of Biblical passages about the church as a body (1 Corinthians 12) and our responsibility love our neighbor (Matthew 22:39 and Mark 12:31) reflects the degree to which the church reflects patterns of the world when it should not (Romans 12:2).
8. The development of programs
Related to number seven above, society inside and outside of churches will choose to develop programs over engaging in relationships. Instead of developing friendships with persons with disabilities and their families, we develop programs to meet the needs that friendships would typically meet. We see this, for example, in respite programs. When families need a bit of a break, they will typically ask friends to watch their child and then at another time return the favor. Respite programs are created perhaps because families of children with disabilities do not have sufficient relationships with friends who will watch their child. If there is a program, it removes responsibility from me to develop a relationship which might make demands on me. Respite programs may undermine the kinds of support that grows out of or leads to friendship. Disability then is not addressed by relationships. Disability is addressed with programs, even within churches. Relationships remain unchosen in favor of programs which do not demand relationships.
9. Social skill development
One might also work on social skill development in an attempt to address impairments within individuals which could lead to difficulty in social relationships (Snell & Brown, 2014). This might be considered a medical model intervention (Silvers, Wasserman & Mahowald, 1998). The success of this training might be evaluated on the degree to which persons with disabilities are engaged in and chosen for integrated relationships.
10. Social ramps (universal design for social environmental change) leading to inclusion has been described as an intervention by McNair & McKinney (2015). The goal of this intervention is to help social environments to do the right thing (Wolfensberger, 1998). This might be considered a social model intervention (Oliver, 1990; Shakespeare, 2002).
11. Cultural change
Perhaps the ultimate way in which relationships impaired or unchosen would be addressed is through cultural change. This implies broadening what might be called typical in understanding relationships, and seeking a cultural change in what would be chosen. From a Christian perspective this would be no longer conforming to the patterns of the world (Romans 12:2). The renewing of one’s mind which is also mentioned in this verse would be to reflect a Biblical understanding of who people with disabilities are. This understanding should lead to a cultural change in which they are seen as created in the Image of God, having a purpose, being gifted and under the sovereignty of God for themselves and for the larger body (McNair, 2015). This perspective causes a change to chosen relationships and no relationships truly being seen as impaired. This is not to say that difficulties faced by people who have severe disabilities do not create relationships that cause significant effort, it is just to say that people can learn to see these relationships as desirable, beneficial, and depending upon one’s experience, even typical. The result is that they change to being chosen relationships. The authors have experience this change through efforts to be in relationship with persons with severe disabilities."

This article is in preparation for the Journal of the Christian Institute on Disability. Be looking for it, hopefully, in the Fall 2016 issue of the journal.