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

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.