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

Wednesday, September 10, 2008

Compartmentalizing disability

I am a person who became interested in persons with disabilities, particularly intellectual disabilities because of the way they drew me in, accepted and loved me when I was a college freshman.  As a result of that group of adults back in 1974 with whom I just played basketball, or soccer or whatever else they wanted to do when we met on Friday nights, I have now spent over 30 years working to educate people with similar disabilities, working to educate those who educate them, and working to see they are full members of the community including the local Christian church.  I have no family members who are disabled so that my involvement with people with disabilities has been a choice on my part.  In contrast, many people that I know have had the life experience of disability thrust upon them by virtue of having a disability themselves or being the family member of a person with a disability.

But even in the best of situations, because my involvement is a choice, it can result in a kind of compartmentalizing of disability.  I have the luxury of compartmentalizing my life, such that I am able to include or not include with people with disabilities in my life.  In that regard, I am probably a part of the majority of people.  I started to think about that idea of compartmentalizing disability.

For myself, I visit friends at a group home once per week. I involve myself with people at church every Sunday and at times when there are other events (which is pretty often). But it occurred to me that my "disabled life" occurs largely on Wednesdays and Sundays for about 7 hours a week. Often I talk with friends on the phone and other times we meet together just as friends do. With effort I get together for coffee once a month with friends, sometimes initiated by me and sometimes initiated by my friends, and I try to help people with problems as they arise. I understand that many people, particularly parents and people with disabilities themselves cannot compartmentalize which is a huge difference between them and myself.  I can become unavailable if I want to for some reason, they must always be available.  Groups attempt to provide respite care for parents such that they can explore other aspects of their lives, but even when they are benefiting from respite, they are still "on call" such that they are only physically absent for a brief while.

The question I have for myself is, how can I reduce the compartmentalization of my life in relation to people with disability?  I have tried to make myself available in the midst of a busy work schedule and phone calls help to blend aspects of my life together.  But I struggle with how, short of adopting a person with a disability, or having some with disability living in my home, I can live a more integrated life.  I am not foolish enough to think or imply that life with disability is in any way easy, although I have learned that people do become accustomed, become used to their lives as they are lived.

I also wonder, at times, whether life with people who are intellectually disabled, when it is a choice because they are disabled, is little more than philanthropy? That implies a one way street in the definition of inclusiveness. I think that perception is the reason why many efforts to facilitate inclusive programs fail.  Those without disability may see it as all giving on their part.  They don't see the involvement as mutually beneficial.  Until they do, efforts at inclusion are destined to live or die on the basis of philanthropy.

For myself, my efforts to break down the compartmentalization of disability in my own life are in part based upon philanthropy, I must admit, however I also have other motivations.  I meet with my friends because they are truly my friends.  I laugh with all of my friends, I am interested in what they are doing, I enjoy being with them, they enjoy being with me.  When I am away from all of my friends I think about them.  When I am away from friends I worry about issues I know they are facing in their lives.  I try to defend them when I perceive them being threatened.  I guess I recognize the impact all of my friends have made on my life and that is the reason why I don't want to compartmentalize them, but want our lives to blend.  I freely commit myself to relationship like I do to any relationship and that commitment makes demands on me which I also freely embrace.  At least that is what I hope to attain.  It results in a blurring of the lines between characteristics of people.  I see this blurring through the eyes of my intellectually disabled friends in the way they see people with and without disabilities and it is a very refreshing characteristic that I hope to learn.



Anonymous said...

Living truly inclusive lives is very difficult. I find that few people are inclusive with any but their immediate families. How do can you be totally inclusive without losing your identity? Or should we?

It could have something to do with how we really see humanity and being human. It could have something to do with our own feelings of doubt about our own worth.

I guess if we are to lose ourselves into Christ, one way to do that is in relationships. When we find the humility to be in right relationship with everyone and everything, then we will find shalom and an inclusive life. I think that Henri Nouwen wrote about that experience in "Adam".

As we go through life we will make decisions that may lead us away from our present relationships, at least temporarily. I have friends that I see often, and others that I don't see frequently. However, when my heart leaps at the thought of them or when I do see them, these are true friends. It doesn't matter whether it has been 2 days or 2 years, we can pick up right where we left off. Anyone else is a colleage or just someone I know.

I guess the point of this ramble is that when we talk of inclusive lives, we are talking about several things. One is relationship, another is inclusion, and the other is refusing to participate in exclusion.

Who do we long to spend time with? When we plan a party, who do we decide to invite, and who do we decide to omit? Do we have events that include individuals that have disabilities and others that do not and why?

Anonymous said...

I think I understand what you mean. Your involvement with persons with disability is a matter of choice; dedicated, inspirational, and committed, but a personal choice, all the same.

You sell yourself short when you worry that that short of bringing a person with intellectual disabilities into your own home you are not committed enough to advocating the issues surrounding life with disability.

I would love to have the time and availability to commit to developing relationships with friends living in group homes,or other life style arrangements. Because I have person's with disabilities in my home, developing those sorts of relationships is not only difficult, but harmful to my efforts to nurture my own family because our lives are just so effortful (By comparison to others I know we have it so easy).

I think you have made a mistake; or perhaps I am missing your point. You say your work on behalf of disabled persons is based partly on philanthropy, a one way street of giving. I don't think you are particularly philanthropic, as much as altruistic. In the first case there may or may not be issues involving personal ego; in the second there is not (Phil.2:4-6) Your work and model clearly falls into the second case.

We all compartmentalize our lives to the degree we are conveniently able or, by necessity, must. Where the rubber meets the road is the exact place we decide to draw our own personal line of tolerance, commitment and service.

It is as Arthur says, if we are going to throw a party just whom do we wish to invite (which also defines who we exclude). The Master commands us to "...Go out at once into the the streets and lanes of the city and bring here the poor, the crippled, the blind and the lamme... so that my house will be filled (Luke 14: 21-23).


MJH said...

I agree with Mark in that we all compartmentalize our lives regardless of the issue. I share some of the same issues you mentioned in that I have the option to be "too busy" when I don't feel like hanging out with one of my friends with a disability. However, to make my business about their disability only reinforces this otherness and in a sense blames the person for my shortcomings. The truth is that I compartmentalize my life. I have friends (both with and without disabilities) that I should reach out to and allow them to reciprocate; however, because I am guarded, selfish, vain and more, I fail to do so far too frequently. The issue is my heart not mirroring that of Christ.
On a broader scale, I tend to compartmentalize my love, compassion and service to the broader world and community. How often have I developed a relationship with a person just for some personal gain? Probably more than I would like to count.
I think the ultimate issue is to continue striving for just and good relationships across the board, but honestly giving ourselves fair feedback when we fail to do so.

Anonymous said...

Perhaps the reason you are effective is because you can compartmentalize your life. I adopted a child with a developmental disability. My decision wasn't based upon some philanthropic pursuit. My situation was brought on by pure ignorance. Adoption is never a selfless act. My "healthy child" has fetal alcohol syndrome.

I have been dreaming of a time when I can compartmentalize my life a little bit. My daughter is a teenager and wants more than anything to have the abilities and freedoms of her same age peers. But, my daughter has poor executive functioning. Her brain doesn't have the ability to plan, direct, predict and consider consequences. We have clashed in ways we never have before. It has been difficult to know how much freedom to give her and still keep her safe. I am getting tired. I am having trouble living in the today and fear for her future.

I have asked for respite care. Even just one day a month might help me cope the rest of the month. So far, I haven't found anyone willing to provide it. But, truly I dream of a time she can live outside of my home. Yes, I will still be her mom/life coach. I have become comfortable with the knowledge that I will be parenting an individual with a disability for the rest of my life... but I don't know how much longer I can do it full time. Because our school district could not meet her needs, we homeschool. So, I really truly never, ever have a break. It is exhausting. And, I can't say right now that I enjoy her.