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

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.



Pilgrim said...

I heard Derrick Dufresne speak last weekend. He said people with disabilites die ten years younger than those without, from loneliness.

Pilgrim said...

I think people with disabilities also do not always have experience, and the confidence that comes with it, in entertaining. They have experienced a lot of rejection, and may fear invitations being turned down, being held at arm's length.

bethany said...

Thanks for this thoughtful post. It brings up many things I've been thinking about lately too. Since I've been going very regularly to a group home type place lately, and have become a part of the lives of the people who live there, I have seen a lot of the anguish that comes from people who recognize that they are adults, but yet still have to follow rules of behavior set by others (who may be 20+ years younger than they are). In those moments, I think they also long for a more independent life -- but in other moments, I hear them express real gratitude for those they life with (both with and without disabilities) as their family.

But I also resonate with the reality that when you live alone, you do end up spending more time by yourself. I'm unmarried and live alone, and realize that loneliness is sometimes just part of the package. And sometimes I am better than other times at reaching out. And, I would say that for anyone who lives alone, we need to learn how to handle our loneliness and how to reach out and how to find more richness in our solitude. And everybody seems to have a different learning curve when it comes to learning these things (it took me about 28 years to learn to reach out in times of loneliness, for example, and I don't have any specific "disabilities")! :) And I'm grateful for people who taught me these things, and feel like people with disabilities also certainly deserve to have someone help them along the journey of learning these things too.

Even so, there are times when my friends extend grace to me, and offer their company even when I don't do anything to merit or seek it. And, it seems like that's the kind of Christlike grace I also want to extend to my friends (those with and without any developmental disabilities) while they're still on the journey.

Whew...that was long-winded!

angel said...

Dr. McNair you are such an awesome person. Too bad there are not more of you so we could all experience your friendship in that way. I never really thought that disabled people are at times lonely just how non-disabled people can be lonely. Non-disabled people have the capacity to make a choice to go out and make friends so they will not be lonely. However, with disabled people it is difficult for them to make friends because maybe they do not know how or people are just mean and look at their disability instead of them as a person. I was thinking about the Lord as I was reading this blog and I was thinking how in what ways am I alone. I am a follower of Christ and at times I do feel all alone in this, but this is what the Lord calls of us and tells us. Jesus says that if we want to follow him and pick up our cross daily, well then we better be ready for persecution and to be hated and alone. Jesus prepares us for this life and says we are going to be alone, but the benefit of this is that we may feel alone, but we have other brothers and sisters in Christ to lean on for support and edification. Dr. McNair you are my brother in Christ and thank you for truly being a brother to disabled people. You encourage me to be a true sister in Christ to all.

Anonymous said...

I often find that most people struggle with loneliness. I know personally that I have felt lonely, even though I have a wonderful family and many friends that are part of my life. People and friends come and go, but only God can fill that loneliness inside of our hearts. Christmas is almost here and it breaks my heart to know that there will be many people out there with and without a disability that will spend Christmas alone. It saddens me to know that many people with a disability have family members, who do not include them in their lives. God's heart breaks for these wonderful people every day. I believe that it is our job as Christians to show kindness and to encourage people who feel alone or who are alone. I always try to help people or make them feel loved even if it is for a little while. I often feel selfish for having friends and people that love me because there are so many people out there who have no one. No one should be alone because there are too many Christians in this world that can simply extend a helping hand or a word of encouragement. We are God's vessels and we should be used. We should be selfless ready embrace the duties that God has given us. We should not neglect other fellow Christians that are part of the body of Christ. If we, as Christians, do not help or show kindness to disabled people, then who will?

Anonymous said...

This is one of the first blog posts I've read here that disappointed me. It's hard for me to understand how someone with so much insight on so many other levels can not see why many people with disabilities living in the community suffer from loneliness to such a significant degree.

I can try to explain from my own life experience of nearly 40 years as someone with a very visable and consequently isolating disability. I intially went into the world as a highschool graduate believing what I had been told my entire childhood. Achieve and you can earn your place regardless of your disability. Then I discovered as I completed college that employers were very distracted by my appearance and despite my achievements, my less accomplished/polished co-horts were moving rapidly up in the world career-wise, getting married, having full social calendars. The more attractive they were, they faster they climbed. Yes, co-workers were very friendly at work, but I was not invited out to the bar after work, could not access their homes because of physical barriers and there was always this social barrier because of my appearance. For a long time this depressed me to my core - the realisation that no matter what my performance, I would not escape this label.

The best friends I've had in life were made as a small child - a veil slowly clouded over my playmates eyes year by year until I was pretty much left on my own. I met my husband by virtue of the miracle of the internet - for the first time since early childhood, someone got to know me for ME, not what I looked like.

I am married now, yet still struggle with how to deal with how others interpret what they 'see' about me. Christ sure hit the nail on the head when he advised us all to 'become as a child'.

Anonymous said...

I really never thought of the loneliness that affects a person with disabilities and a non disabled person. Loneliness is very common for all people. It is amazing what you do Dr. McNair for someone with a disability. Imagine if we all took the time to talk to people, sit and have lunch it would me great. It is awesome that you take the time and get to know every individual and hear what they have to say. Together we can make a difference in the lives of many and put a smile on their face.