So, new month, new post. Or is it? I’ve written so much about life skills in this blog, I’m starting to feel like the director of those movies that start out as a single film, but evolve into a trilogy. (And I’m listening to instrumental music inspired by Lord of the Rings as we speak).
Actually, we could probably all take a lesson from Tolkien’s world. If you look closely at Middle-earth, you will soon notice that humans, elves, dwarves, and hobbits live in it together. Perfectly and peaceably? Not always. That’s where problems with renegades like Orcs crop up. But they live together. They know the other races are there. And it’s natural. It’s their world. Not so with our world, especially when it comes to people with disabilities. But that’s NOT just because of segregation. Yes, that plays a major role. But what I’ve learned in the past almost-year is, Disability Land is a unique place to live and move, because unlike some other worlds, it doesn’t draw clear lines between what is benevolent and what is malevolent. Sometimes what looks malevolent is legitimate “tough love” (i.e., disciplining the child whose disability has, thus far, let him or her get away with everything). Sometimes what looks benevolent is actually the worst thing you could say or do to or for a person with a disability (i.e., the dying, but ever-present construct that says institutionalization is a viable answer to making sure these people are cared for).
Sometimes, constructs used in Disability Land are neutral. That is, everything depends on how they’re approached, planned, or implemented. One such construct is that of independent living. By itself, that term seems fine. The implementation of that term looks good on paper. But what is it, really? How can we–people with and without disabilities–learn to use it for good, not for harm? In fact, can this construct even be harmful?
You guys know me. I love to ask questions, which means sometimes, I have to remember to wait to have them answered, or make myself answer them one at a time. Let’s do that now. First question: what is independent living? As defined by Heward (see April archives, the statistics post), independence involves three things: gainful employment, involvement in social groups (making and keeping friends), and living with a spouse or roommate (s). So at least part of independent living involves living and functioning in daily life on one’s own. If one chooses to live with another person or persons, that’s fine. It’s encouraged, in fact. The key here is that (1) An independent chooses when or if to live with someone else, and whom those people will be. And (2) an indpendent adult may choose to live with others, but those people, in most cases, know to respect each other as individuals. Unless someone in this living arrangement is harming herself (i.e., drug use, heavy drinking, suicidal behavior, abusive behavior), the spouse or friends are not going to insist on controlling her decisions, her money, her food, or anything else. So to add to Heward, independent living appears to be the CHOICE to live with others or not–and pick those people–but still maintain one’s autonomy as long as serious physical, mental, emotional, or spiritual harm does not occur.
And yet, so many people with disabilities are denied this choice. Or they are given what looks like the choice (such as, if you want to live apart from Mom and Dad, it must be in a group home or other such community, with another relative, and so on). It’s independent living on someone else’s terms.
Of course, I know the arguments here. I can hear some of you using my own words to back yourselves up: “Well, you said as long as no serious harm occurs–some people with disabilities can’t function on their own because they WILL hurt themselves.” And yes, I recognize the presence of severe disabilities that might preclude that person from living totally alone. But you have not poked a hole in my argument. Instead, you have successfully segued me to the next, and more, important parts of it.
Question two: How does independent living *really* look? I gave you the accepted definition via Heward, plus my own addendums based on my belief that everyone has the right to choices of where, how, and with whom they will live. Now, let’s look at the societal construct of independent living. You might find it looks a little different.
If I had the opportunity to do a sort of “Man on the Street” interview, I might ask some random people–without disabilities, to back up what I’m about to show you–what they first think of when they think “independence.” Some things I might hear are:
- Ability to purchase and keep, or at least rent, one’s own home
- Ability to care for others because you have:
- Ability to physically care for self
- Here’s a biggie: The enjoyment of others, but without real need for them
See, that’s what gets me. People without disabilities, especially doctors, therapists, and the like, often look at people with disabilities, starting in childhood, and measure their contribution potential–might as well come out and say it, their worth–by whether they will be able to “live independently.” If your child’s prognosis includes “He will be able to live independently,” you are expected to be relieved and happy. If not, it’s a tragedy. It sentences you to a life of caring for someone who cannot give, only take, according to society. But what does that attitude truly say?
If we go strictly by how society has defined independence since its inception, successful independent living seems to turn on the fulcrum of the ability to live ALONE. By “live,” though, I don’t just mean, go home to your own place at night and be comfortable because you, and you alone, control the remote and pick out the ice cream. (Although that can be a perk). 🙂 By “live,” I mean “function.” Move in the world. Interact. Except, according to society, true independent living doesn’t involve interaction because if it’s successful, it’s done alone. You may have friends, but you keep them at a distance. You may even have roommates, but you all go your separate ways a lot. You may have a spouse, but it’s debatable whether you will see that person as a true confidant (e). You may have a social group (clubs, church, Mommy and Me, the gym), but you move through those in a largely singular way.
You don’t call on people when your car goes bust. You’re independent, so you’re supposed to fix the car yourself.
You call the doctor when you’re sick, but then you get the prescription filled yourself and, like an independent adult, tough the sickness out. You don’t ask for help, or accept the offers of care. You don’t need that anymore. Independent adults aren’t supposed to.
You don’t call your friends at four in the morning, even when you’re truly hurting inside and need them, because they have their own problems.
You have to learn to cook and clean, if you’re a girl (and yes, if you’re a guy, but this is a standard still pushed mostly on women), because it proves that not only are you an independent adult, but you’re ready to have others depend on you. Burned meals? Dirty floor? Not acceptable.
In fact, this construct of independent living assumes two negative, flawed things:
1. You can lose your right to be considered independent if something happens that you could’ve controlled (those burned meals, that dirty house, financial problems, and so on).
2. You are only allowed to reach out for help if a catastrophe occurs. But what do we consider a catastrophe? Among other things: cancer, broken bones, mono, and DISABILITIES. But if you reach out because you have a disability, you suddenly become the dependent object of pity, not respect. (When really, we should respect these particular people more than perhaps any others–see March archives on survivors).
I don’t know about you, but if that’s the way we as a society see independent living–that success at being an “adult” equals a largely solitary existence–then we’re more twisted than I thought. Think about it, guys. Who really wants to live the way I just described? Now, I’m not saying solitude is bad. I’m an introvert, and let me tell you, if I didn’t have my space and silence, I might literally go crazy. Some of my happiest hours are spent with me, myself, and I. But that doesn’t mean that’s the way I always want it to be. Nor does it mean that’s the way it should be, because I recognize it’s not healthy for me to function entirely alone. It’s physically draining, emotionally depressing, and spiritually dangerous for me. God Himself said, “It is not good for man (woman) to be alone”–and though He spoke of the male-female partnership, I’m convinced He didn’t only mean marriage.
So think about it. One, why are we telling people with disabilities, you’re ultimately successful only if you can live by yourself? And two, why are we shunning all forms of dependence upon each other?
Now, don’t get me wrong. Autonomy is a precious thing, and no one has the right to take it from another human being. The power of choice belongs first to the individual, not the group, the government, or the organization. Believing otherwise is often the seed of socialist, communist, or even fascist thinking. And yes, at times, a person has no choice but to stand on her own. The ability to do that is inordinately valuable and should be learned well. But when did natural dependence on others become bad? Why is it a sign of weakness to, when ill, call up a friend–or even Mom–and say, “I’m not feeling well; could you bring me some soup/cover for me at work/just keep me company?” When did it become “needy” to call your best friend and say, “Hey, you know more about X subject than I do–mind helping me out?” Why is it not okay for a woman to say, “Honey, I love you, but to be honest, I hate to cook?” Or a guy to say, “Honey, let’s hire a professional to build this gazebo?” Where did we get our “milestone” charts–not the ones for, say, health and wellness, but the ones that say stuff like, “Your kid’s five–why can’t he sit still yet?”
Helen Keller once said, “Alone we can do so little. Together, we can do so much.” Point of Grace has a great new song whose lyrics include “It’s like you gotta break down before you ask for help.” The message there: why is that?
Why are we still stigmatizing our people with disabilities (and that includes mental illness–we’re still stigmatizing the psychological help process, too) by making them feel “less than” because they reached out? I may be smart, but it makes no sense to me.
So, to question three: How to make independent living work? How to get rid of the guilt, shame, and “less than” feelings our population with disabilities often experiences? First, recognize that when it comes to independent living, nothing is impossible. No one–NO ONE–should be denied the choice to live where, how, and with whom they choose just because he or she has a disability. But second, recognize–as I am learning to–that independent living is one goal. It is not THE goal. It is not a God. In fact, it may not even exist. Maybe, instead of shoving “independence” down people with disabilities’ throats, and holding it aloft as the goal they will never reach (even though we demand it), we should say,
“My goal for you is that you would be able to live in such a way that your individuality is preserved, but you enjoy the benefits of a society whose people are dependent on each other.”