A/N: This post is raw and more of a collection of thoughts than a coherent whole. I’m posting here as a signpost to myself. It’s definitely intended to be a comprehensive commentary on the subject of independence and disability.
I. Theory, Background, Questions and Concepts
What is the relationship between being dependent and being independent? Certainly not the opposites that we assume at first glance.
There are common themes that you’ll encounter if you read enough autism parenting-related blogs and comments:
“My child is severely autistic and will never be able to live on their own.”
“My child is going to depend on me for the rest of their lives. They’ll never have the skills to live independently.”
The assumption that dependent and independent are opposing states is implicit in these types of statements. A person who lives on their own is considered independent by default; a person who needs the support of others to conduct their daily life is dependent. Little acknowledgement is given to the gray areas of reality.
Consider this scenario:
My elderly neighbor lives alone.
Based on this statement, you’d assume he’s independent, right?
How about this scenario:
My elderly neighbor, who lives alone, is in poor health. He has daily visits from Meals on Wheels and a health aide. A maid service comes every other week to clean his house, a lawn service keeps up his yard, and various neighbors drop by daily to bring in his newspaper and check on him.
Is he still independent? Dependent? Something else we’ve failed to consider?
Oh, wait, I know what many of you will say . . . we’re all interdependent. This is true. Few of us make our own clothes or grow our own food or generate our own electricity. Even those of us who are able to cut the grass or clean the house might hire someone who can do a better job of it.
Does that mean some of us are more interdependent than others? That independence and dependence are fictional extremes where no one actually lives?
The issue of dependence/independence/interdependence is one that is understandably surrounded by intense emotion. Parents worry (or in some cases seem to simply decide long in advance) that their children will never live independently.
Disabled adults assert (or attempt to assert) their right to make and direct their own life choices, regardless of the amount of support they need to carry out those choices, often in the face of strong objections or even physical peril.
Meanwhile, allies point out that we’re all interdependent so why hold disabled people to some fictional standard of being wholly independent.
Others, often the disabled themselves, say that independent living is a valid goal and one that every human being has a right to.
What does independent mean in the context of disability?
What it doesn’t mean is living alone, doing everything for yourself or having no supports. Though that’s the standard that many of us, especially those with developmental disabilities, are pushed toward as a defining goal of having achieved adulthood.
Independence, as an adult, means having control over one’s choices and one’s life. A person of majority age could choose to live with their parents or other family members and still lead an autonomous, independent life. How well that works would depend on a family’s ability to offer a support network while respecting the choices of their disabled family member. But a person freely choosing to live with their family of origin, a caregiver or supportive person is still an independent adult.
II. Practice, Introspection, Observations, Reality
If independent means freedom to make my own choices and direct my own life, what does dependent mean?
I depend on The Scientist for a lot. And that’s never been an issue for me in the past. I’ve always viewed us as an interdependent couple.
Over the years we’ve fallen into an efficient division of labor. Sometimes we jokingly say that he’s the “Minister of Foreign Affairs” and I’m the “Minister of Domestic Affairs” in our house. He deals with hiring repair people, negotiating major purchases and keeping the car in good working order. I make sure the bills get paid on time and we leave the grocery store with the necessary foodstuffs and the trash gets put out on the right day.
When it comes to household chores, The Scientist is as likely to make dinner, vacuum, do a load of laundry, wash the dishes or take out the dog as I am. We don’t consciously divide up chores and yet they never seem to be neglected to the point that one of us feels the need to point it out.
Recently, though, I’m becoming more aware of the balance of these tasks, and of keeping score in a way that I never have before. And not for the stereotypical reason of a husband who does too little around the house.
Instead, I find myself keeping score because I feel like I’m becoming increasingly dependent on The Scientist for day-to-day things. Wondering if he’s taken the dog out one too many times this week or cooked dinner too many nights in a row or done the dishes again.
That summary points to a personal definition of dependence: having to rely on someone else to help with or to do things that I previously did by or for myself.
There’s a clue in there, too, about the reasons I find myself chafing at the notion of dependence: Change. Comparison. Judgment. And of course the resulting guilt. Always the guilt.
I used to __________ but now I need someone to do it for me.
__________ used to be easy, but now I need someone to verify that it’s done right.
I’ve always been the one who __________ed, but now sometimes I can’t do my share.
In fact, the level at which I was able to do ___________ and the importance of ________ to my self concept is directly related to how much I resent needing help with it.
This shift from feeling interdependent to dependent is an uncomfortable one for me.
Where does this creeping feeling of dependence originate? Certainly not from a lack of independence. I’m free to make my own choices and do. I’m able to direct the course of my life as much as the average adult.
It doesn’t come from an inability to acknowledge that there are things I’m just plain bad at or need support to accomplish. That’s something I’ve made my peace with. (Though apparently those things are a very specific predefined set of things and anything that falls outside that definition is subject to a hostile and lengthy examination by my subconscious.)
Not from any illusion that I’d thrive living on my own, something I’ve managed to go a whole 46 years without ever doing for an extended period for time.
Increasingly I think it’s rooted in loss. Dependence is like a catch-all bucket, a place to toss the things I’d rather not examine more closely. The resentment I feel at “giving in” to whatever is happening to my language abilities. The anger at the parts of me I perceive as diminished, at my limits and how vigilant I have to be. The frustration that lurks in places that used to be a source of comfort. The fear that creeps in during quiet moments.
Dependence has become a proxy, an easy target. It’s so simple to say, “here are all of the little day-to-day events that make me feel dependent and if I can just do those things myself instead, all will be well.”
And that’s a convenient lie, because clearly I have bigger issues to work out than simply the strategic rationing of resources.
Which brings me back to where I started, unable to define a clear relationship between dependent and independent and no longer even trying. Having strayed far from my original idea, at least now I see the problem more clearly.
What I’ve been struggling with is not so much dependence, but acceptance.