Friday, December 12, 2008
The regular life
A friend of mine contacted me this week. She is a someone with a disability who told me about her feelings of loneliness and being stressed about regarding other aspects of her life that she is currently going through. Hopefully, I can try to do better in terms of calling or visiting, but it is difficult. I work full time, I have a family. These responsibilities force choices on my time that I often don't like to make but I must make nonetheless.
An aspect of the empowerment of people with disabilities whereby they take on typical lives are the consequences of living typical lives. My friend was living in a group home where there were other adults living. She was unhappy there because of many of the restrictions that go along with living with others, particularly in a group home setting. She made the decision to move out on her own. She is now living independently, and largely doing very well. However, when you live by yourself in an apartment, a natural consequence is that your friendships must be developed by you. If you want people to come to your house, you need to invite them. A natural consequence of living by yourself, is that if you do not make efforts to get out, to meet other people, to invite people to your home, you will be lonely.
This illustrates a critical principle in our efforts to facilitate regular lives for people who have been denied regular lives. That is, regular lives are not perfect lives. My presence in the community, living independently, does not mean that my life is suddenly filled with things that I necessarily would not have if I had less independence. A critical aspect of a regular life is that I am largely left alone. I find this in my own life. I have many friends, however, unless I invite them to do something with me, I spend a lot of time alone. Now I have the benefit of being married, but a regular life is a life of independence and aloneness if I rely exclusively on others to just come by on a whim. Those living regular lives who don't experience a disability don't typically expect such a thing, so what does it imply about the "regularness" of the life of a person with a disability if they expect to be catered to in a way different from those not experiencing a disability?
I am acutely aware of the restrictions on the lives of those who experience less independence. They have neither the ability nor the understanding of how to facilitate friendships with people outside of the facility in which they live. I therefore make an effort to come to them to bring the regularness of a friend stopping by for a conversation. I go, for example, to a group home for adults with intellectual disabilities and have a coke and some ice cream while we just talk about what is going on in their lives. If someone didn't do that, then their lives would largely be filled with people paid to be with them or people with equally regulated lives experiencing similar disabilities. My presence brings a wild, off the reservation, kind of regularness. When I visit, they stay up later, they eat foods that are fun (and not necessarily "good" for them or on the diet plan developed by a nutritionist) in larger quantities that they wouldn't typically eat, they may travel with me to someplace in the community they wouldn't otherwise be able to visit, they meet new people who are interested in them but not paid to be with them, have experiences typical to the average person, but not to people with regulated lives and so on and so on.
The person with disabilities living independently may live in poverty, but they are independent and pretty much have the opportunities to move about the community that anyone has. But I find an expectation in a subset of people with this experience that I don't see in those who live in more restricted settings and I admit that I am not sure what to make of it. I am confident that some do not know how to make their own lives less lonely. I also try to do what I can to enrich their lives and when someone tells me they are lonely, I feel a responsibility to reach out to them.
I guess I just also want to tell them "welcome to the regular life." Regular life is often loneliness. It is often making what you can of your own life. It is maximizing your opportunities and not relying exclusively on others to make your life for you. Obviously, there are people who have such significant disabilities that they have to have people in their lives, volunteer or paid, to do the simplest of things. However, if I have achieved a "regular life" and I simply wait at home for other people to make my life into something when I have the ability to do most everything for myself, I may be proclaiming that I do not want a regular life.