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

Tuesday, July 23, 2013

Friendships are not utilitarian

In a conversation with students this past week, we talked about friendship.  When we discussed why someone develops a friendship with a person, in particular with a severe disability.
I asked "Why would someone choose to develop a friendship with someone having a severe intellectual disability?"  Responses related to how much one could learn from such people, how much they have to give, how their life impacts those around them and so forth.

I then asked several of the students, one at a time,
"What is the name of your best friend?" 
A typical response was, "Ginny." 
"What do you and Ginny like to do together?" I then responded.
"We like to watch movies, drink coffee and just hang out." was a typical response.
I then wondered aloud, "Why must a friendship with a person with a severe disability have a utilitarian component when your friendship with your other friends is just based upon being together drinking coffee or watching movies?"

I admit I didn't plan on the discussion, it kind of just happened, but as I thought out loud, I recognized that the criteria for friendship for some reason seemed to be different for typical friends in comparison to potential friends with severe disabilities.  It was like the same criteria would not work for a person with a severe disability that might work for someone without that characteristic.  For me to have a friendship with a person with a severe disability, I must identify something that you have to give to me (utilitarianism) as a reason for the friendship.  Perhaps because I have bought the lie that a person with that characteristic has nothing to offer me, so I have to find something that they may have to offer in order to justify friendship.

I thought of my friend, Doug, a neighbor who will just stop by my house unannounced.  For some reason, I never expect him to show up.  He drives up on his 4 wheeler (I live in the country) comes in, we have a cup of coffee or dinner if he hasn't eaten yet.  We talk about what he is doing or what I am doing or maybe just sit and watch whatever Kathi and I happen to have on the TV.  I love it when Doug stops by unannounced.  Sure he has helped me do things at times and I him, but 90% of our time together is just typical hanging out that friends do.  I am not his friend because of how much I can learn from him, or how much he has to give, or how his life impacts those around him.  We just enjoy hanging out together.

One of my best friends was a man with severe intellectual disabilities.  It was funny that I just started visiting his group home because I wanted to do something nice for the men who lived there.  I would go by with a bottle of soda and something to munch on and hang out for an hour.  Increasingly I found that Thom and I connected.  He liked me and I liked him.  He would tell me about his day program, how he wanted to marry his teacher, about his brother in whom he was so proud and about the Angels, Dodgers or Lakers.  I would tell him about things I knew he would be interested in,. like my horses or that I had had a barbeque, or how he was my friend.  He would often say to me, "I am nice to you, Jeff." and he was!  He passed away about a year ago and it was interesting to me to find that I didn't have the same desire to visit the group home as I did before.  Why?  Because my friend no longer lived there!  I liked the other men and women who live there, but Thom was my friend.  He was my friend in the same way that Doug is my friend.  Not because of what he could do for me, but because we enjoyed hanging out together.

No real friendship is truly utilitarian.  If you are looking for utilitarian relationships, you are probably not looking for friendships.  As you consider befriending those with the characteristic of severe impairment, do not attempt to make the relationship anything different than the relationship you have with other friends.


Wednesday, July 17, 2013

A "form" of physical integration

A student of mine was recently writing about opportunities for persons with intellectual disabilities to be integrated into the community.  He describes a scene where people are in the community but are largely being "protected" from the community.  The presence of "care providers" both facilitates isolation while communicating that the care providers are care providers and not people with impairments like those they are providing care for.  In discussing this with another friend, he reminded me of how in most any food court in America, you can sit and watch people with disabilities being brought into the setting, as a group, with their care provider/protector, being physically present but without any possible opportunity for social integration with the community.

I made the point with my student that he must be clear in speaking about forms of physical integration...being present physically but not present socially.  Perhaps the requirement of the agency for whom the care providers work is that people have the opportunity to physically be in the community.  Their assumption, I would assume, is that because there is physical proximity, there is also social integration going on.  This is a very foolish assumption.  Now obviously it is difficult to be socially integrated with someone if you are not in the same enviornment with them, but physical integration is completely different from social integration.  Some groups make no effort to physically integrate people because of the way they perceive those with disabilities, all but indicating that there is something about them that makes them unworthy or at best ineligible to be socially integrated.  These people are fools who should not be given any responsibility relative to the support of persons with disabilities.  Unfortunately, our secular models for the delivery of human services seeks people who see persons with disabilities as unintegratable which makes the segregationist models for human services more administratively convenient.

I mean imagine care providers truly taking people to the food court such that they will meet and integrate with others in the community.  As soon as unregulated, community members have access to persons with disabilities, there is the risk that relationships might be built.  Once you have a relationship with me as a state regulated person with an impairment, you might become concerned about the treatment I am receiving.  You might show up at my group home or my sheltered workshop, or even at the food court where I am eating.  You will see those managing me frustrating any efforts on my part at social integration, and you might start to complain.  How much better if you would not care about people with impairments, leave their care up to those who are "trained" and go about your business.  That is the form of physical integration which is most likely desired by those providing services.  The involvement of community members in the lives of people who are regulated is simply too messy to manage.

As the church and Christian community awaken to persons with disabilities in the community, they will experience significant push back from those who manage their lives.  Push back will come in the form of prohibiting things that they really don't have the right to prohibit.  Limiting choices about choices that shouldn't be limited (my daughter told me of a man consistently given a cheese sandwich for lunch when he wanted waffles, which of course was quite unreasonable untill a lawyer showed up).  Limiting relationships through the desire to regulate everyone in the life of someone with an impairment.  These are the kinds of behaviors which influence the experience of physical integration of persons with disabilities.  It is not in the best interest of the state, of agencies, of care providers for people with disabilities to be truly physically integrated leading to true social integration.


Monday, July 15, 2013

Wading into messy lives

There is a degree to which in a situation where everyone has largely perfect social skills and where few people look to us to solve their problems, we are able to do our programs in our own strength.  As we increasingly involve ourselves in the messiness of people’s lives, whether due to their choices, impairments, etc., we have less confidence about what we should do and therefore are driven to rely on the Lord for assistance.  This, in the end, is good for both those with difficult lives and others around them.  As we wade into their difficult lives in order serve them, 1) we share in the suffering of others in their messy lives, 2)  we learn service and 3)  we learn a reliance on the Lord in the midst of these extreme difficulties as neither we nor they are able to solve the complex difficulties of the lives of others.  We are compelled to dive into the scriptures to understand God’s mind and also end up in desperate prayer to seek God’s wisdom, God's direction and even God's direct intervention.  Someone very dear to me has told me that when he has cried in recent years, it has been because of the pain of others that he has sought to support.  He truly has suffered with other parts of the Body of Christ.

Although I experience this at times, I do not experience it sufficiently enough in my life.  This reveals to me the types of people I have in my life.  As I read one of my favorite passages in the Bible, 1 Corinthians 12.  Verse 26 says, "If one part suffers, every part suffers with it..." and I think to myself, "I don't think so."  To me that seems more like an aspiration for the Body of Christ.  Maybe in some existential manner we all suffer together, but I don't sufficiently and the Church doesn't sufficiently feel the suffering of those in the community who suffer, in particular those who may be suffering with aspects of their experience with disability.  Obviously, not all people with impairments suffer, however, the social isolation, the comments that "I have no friends" and even the dealing with pain or other aspects of impairment, these things the church is not sufficiently aware of.  In fact a statement often given by pastors or others within the church when confronted with the reality of this experience is that "I didn't know."  How can I suffer with those who suffer if I don't even know who they are?

Our American society allows us to make a lot of assumptions about the experience of people in life.  We are aware of the presence of various human services and assume that they are sufficient to meet ALL the needs of those who use them.  As I have referred to a hundred times, we are like Scrooge replying that we pay our taxes, implying that I have no further responsibility for my neighbor because I have had money taken out of my paycheck against my will to support them through government programs. 
I would argue that not only are these government programs insufficient, the models they are based upon are so wrong that the exacerbate many of the problems they claim to be addressing. 
But I will never know that unless I wade into the lives of those who are living on what appears to be a different side of the sovereignty of God than I am.

When I wade into the problems of others, and feel overwhelmed like they do, and feel hopeless like they do, and feel alone like they do, their experience guides ME to total reliance on God and perhaps through my reliance on God, guides them to reliance on God.  We should suffer with those who suffer so that we can become the Body of Christ described in 1 Corinthians 12.

May God give us the desire us to become his body.