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| A gorgeous cover byPhoebe Kirk |
When I was little, I couldn’t pronounce my full name (Ruxandra is pretty tough for a toddler to swallow), so I called myself “Ada”. And since then, even though I use a nickname by which most of you know me, Ada stuck and that’s the name my family uses. So you can imagine that at first glance I felt a certain kinship to Adah from The Poisonwood Bible even though she spells her name the Biblical way.
Adah, in many ways, isn’t anything like me. She has hemiplegic cerebral palsy, and she’s often quite emotionless. But the deeper I got into the book, the more she fascinated me and the closer I felt to Adah; at one point, she says she’d rather be “Ada” with no “h”, to satisfy her palindrome penchant. The fact that Adah spent her entire youth physically limited by cerebral palsy fuels her lifelong craving for symmetry and balance, which she quenches through palindromes and a career in epidemiology.
In fact, Adah’s experience can be applied to many disabled children. I’m not going to go as far as to say that Kingsolver was trying to send a message that disabilities should be viewed in a certain aspect (because I don’t know her purpose exactly) but Adah’s story may provide some healthy advice by showing how Adah was able to maintain a sense of self-worth while dealing with the stigma of being seen as handicapped, unintelligent, and inferior.
An article from the Canadian Medical Association discusses two mindsets meant to eliminate the stigma altogether. One of the mindsets may actually be a little harmful in the long run (you might be able to guess which one and why).
- This mindset emphasizes person-first language, meaning that disabilities are disregarded on the premise that disabilities don’t define a person. When you take away the disability, the person is still human.
- This mindset acknowledges the disabilities, but recognizes that disabilities are a collective human experience. All people, even if they haven’t been diagnosed with a physical or mental disorder, struggle at some point in their lives. It would be unfair to judge people based on what they can’t do, so we should appreciate people by what they can do.
The article makes the claim that person-first language ends up suggesting that a) disabilities are inherently negative, shed a dark light on people, and must be overlooked; and b) a true “person” is able-bodied (i.e. a person with disabilities isn’t a true person). Of course, it’s important to remember that the purpose of this person-first definition is well-meaning; it seeks to ensure that people with disabilities aren’t looked down upon, because at the end of the day they’re as human as all of us.
I think Adah would definitely prefer the second option, because that’s how she constructed her life. Adah was able to accept herself and recognize her self worth, both when she had cerebral palsy and when she was healed. In a way, she actually felt that she lost a part of herself she had grown to like. She didn’t appreciate that people felt more open to her once she was healed, because she was no longer disabled, saying: “any man who admires my body now is a traitor to the previous Adah” (532).
Adah understood that her cerebral palsy was a reality, something she couldn’t deny, and she wouldn’t be the same person otherwise. Her condition didn’t make her weak, but rather stronger, as she was fiercely resolute and intelligent. I hope all children (and adults) with disabilities can take a page from Adah and embrace her empowering ethos. But more than that, I think the most constructive result of making a character like Adah is to expose people without disabilities to a brilliant teenager who happens to have cerebral palsy, but who isn’t held back by her physical limitations. That way, Adah engenders a sense of empathy that hopefully, little by little, will help break the stigma that disabilities are curse of inferiority.
Thank you, Barbara Kingsolver, and thank you, Adah.
Ruxi--I loved this post. Your personal connection is both refreshing and heartfelt.
ReplyDeleteAdah is a complex character, though she represents the intellectual snarky population among us. I think you really identified a universal truth here--we all struggle. Some choose to say we're all equal, but perhaps we're only all equal in that we all suffer. Maybe not equally, but we all suffer, leveling the playing field just a bit.
There lies a problem in treating people with disabilities the same as we would another person. Not that we should discriminate, but for example, we shouldn't expect a wheelchair bound person to climb the rope in gym class just like everyone else. In our attempts to create a level playing field, we still are changing the game.
I'm curious, Ruxi, do you think that one can truly treat someone different than them as an equal or as they do other "normal" people?
Thank you, I really enjoyed your post.
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DeleteTo answer your question, Toby, I think that is possible. Most of us do it every day; we understand that though people might be different from us, they have their own life story and we have no right to judge their life using our own personal truths. But in terms of disabilities, you're right, we can't expect a quadriplegic to do sports, and so in that sense they can't be treated as other kids. In this situation, I think what's most important is to maintain dignity. It's not their fault they have a disability, they didn't choose it, and it's not a reflection on their personality. They are simply unable to perform one activity, but there are probably plenty of other awesome things they can do. And by placing the focus on abilities, we can maintain their dignity, knowing that they're valuable people no matter what.
DeleteWorking with disabled children, teens, and adults is one of the most rewarding personal experiences of my life and it has required me to witness the traumatizing stigma you discuss. Disabled individuals understand that they are different and experience the world very uniquely; they expect to be accepted by society but they also understand they have certain limitations other individuals do not. In my experience, the stigma remains no matter how educated society is and no matter how well-meaning people are because often, we think of the term "disability" as an accurate definition of physical and mental conditions, when in reality, the term is too broad. There are many different disabilities and levels of disabilities composing this broad term, and people should make a distinction between the different conditions. Perhaps the first step to solving the stigma is distinguishing the different levels of disabilities. By changing how we define the term "disability", people can understand that disability does not mean inability!
ReplyDeleteRuxi–
ReplyDeleteI didn't knot that you and Adah shared a name; what a wonderful connection. I'm sure it made reading the book ever more enjoyable because you could compare and contrast yourself with one of the main characters, which is always desirable and positive when reading.
While reading the second mannerism you present in your blog, I was reminded of this saying from who knows what TV show or book: "One in four people have a mental disorder. Pick three of your friends; if they seem normal, it's probably you." I always laugh when I think of this, but after reading your blog I realize how this is true, yet how it is also false. Yes, mental illness is actually quite common. If we don't think about how certain "illnesses" are now recognized and "named" by practicing doctors, countless people are affected by anxiety, ADD, ADHD, and the like. Therefore, it can be assume that most people suffer from one or more illness at least once in their life. What high schooler hasn't been affected by anxiety? There are obviously high functioning people who are affected by all sorts of illnesses, so those who say that people with these disabilities are inferior, well, they themselves might just be suffering from something too.