There are 4 kinds of knowledge in the universe:
1) The things you know you know.
2) The things you know you don't know.
3) The things you don't know that you know.
4) The things you don't know that you don't know. Sometimes these masquerade as category 2 pieces of knowledge, but it's usually the true vastness of your lack of knowledge that distinguishes this category.
Which brings me to my current, honest-to-goodness category 4, never-knew-that-I-didn't-know-it, deep thought: disability models. I had never heard the concept of a disability model, let alone the specifics of either the medical or the social model, and I have really only started putting any effort into figuring what they are and what they mean for us as a family adapting with Spina Bifida. And Hydrocephalus. And Chiari Malformation. And their secondary symptoms.
I'm over-simplifying, but here are some basic definitions I've come across. The medical model is a construct in which the disability or impairment is seen as needing medical intervention in order to bring the person to a state of "normal." The disability must be treated/addressed because quality of life is reduced as a direct result of not being "normal." By contrast, the social model makes a distinction between a disability and an impairment. It says that an impairment is the physical inability to do something like walking and is caused by damage, injury, malformation of the body. A disability, on the other hand, is a barrier created by society. A person who uses a wheelchair isn't disabled because they have mobility impairment. Rather, they are disabled by the lack of ramps/elevators in public places.
1) The things you know you know.
2) The things you know you don't know.
3) The things you don't know that you know.
4) The things you don't know that you don't know. Sometimes these masquerade as category 2 pieces of knowledge, but it's usually the true vastness of your lack of knowledge that distinguishes this category.
Which brings me to my current, honest-to-goodness category 4, never-knew-that-I-didn't-know-it, deep thought: disability models. I had never heard the concept of a disability model, let alone the specifics of either the medical or the social model, and I have really only started putting any effort into figuring what they are and what they mean for us as a family adapting with Spina Bifida. And Hydrocephalus. And Chiari Malformation. And their secondary symptoms.
I'm over-simplifying, but here are some basic definitions I've come across. The medical model is a construct in which the disability or impairment is seen as needing medical intervention in order to bring the person to a state of "normal." The disability must be treated/addressed because quality of life is reduced as a direct result of not being "normal." By contrast, the social model makes a distinction between a disability and an impairment. It says that an impairment is the physical inability to do something like walking and is caused by damage, injury, malformation of the body. A disability, on the other hand, is a barrier created by society. A person who uses a wheelchair isn't disabled because they have mobility impairment. Rather, they are disabled by the lack of ramps/elevators in public places.
(There's more to both theories and I would encourage you to read up on them and form your own opinions.)
There are elements of each that seem true to me. From the medical model, it seems obvious that when quality of life can truly be improved by medical intervention, then medical intervention should be sought out (or at least considered). If we break a leg or get strep throat, most of us would go to the doctor and seek treatment with the goal being to return the body to a "normal" (pre-injury/illness) state. I think the real flaw in this as a framework for treating/managing a chronic condition is in who gets to define what is an improvement in quality of life. Ultimately I think that should be left up to the person who has the disability, though, there are situations in which that person isn't able to decide, due to age or mental impairment or what have you. I have to admit that deciding what is/isn't in the long-term best interest of another person is one of the challenges of parenting that I dislike the most (yes, I think it applies to parenting in general, though there are more opportunities to question your motives when you are caring for someone who has a disability). I want Addy to have the best chance at an active, independent, happy, full life and I want any procedure or therapy to lead to that goal.
On the other hand, the social model with its almost defiant "there's nothing wrong with me; I was born different but different isn't bad" attitude is somewhat refreshing. What turns me off from it is the blame shifting that goes on. "I, as an impaired person, don't need to adapt. Society put up these barriers; society needs to change." That really rubs me wrong. It builds a lifetime of confrontation and aggression that, in my opinion, leads to wasted energy.
The social model also seems to neglect how we got to be a society of stairs and other barriers. Society didn't decide that multi-story buildings are a good idea in order to intentionally exclude people who use wheelchairs or canes. Stairs came into being as a way to efficiently use real estate. I'm not saying that we shouldn't all work diligently to remove barriers like stairs and be more universally inclusive. I'm just saying that perhaps a less angry and confrontational attitude might be called for when trying to navigate the world (which is very easy to say when you're someone who is able-bodied and hasn't faced a lifetime of stairs I couldn't climb.)
So what does this mean for us as a family that is adapting, navigating, and occasionally fumbling through life due to a disability/impairment? An excellent question for which I don't have a complete answer. Neither model truly fits me and my hopes for my family, but I want to draw on each to help Addy make sense of Spina Bifida. Certainly, as she gets older and is able to participate in her medical decisions, I'm going to encourage Addy to form her own opinions and to decide what will make her life better. And I definitely want her to know that different isn't bad and that there are likely more commonalities than there are differences between her and her peers. But I also want her to know how to adapt, how to look at a situation and figure out how to make it work for her, and to not take "you can't do that, you're disabled" from anyone. I want her to kick Spina Bifida squarely in the ass and have fun doing it. I want her to know that her diagnoses are part of who she is, but they don't define her and she can redefine them. Most of all, I want her to have a happy and full life.
And now you know some of the things that, until recently, I didn't know that I didn't know, but now I know that I don't know enough about them. Y'know?
