I thought this was a lovely little post by a mother of a little girl with epilepsy. She writes to herself 10 years ago when her daughter was born.
Since I’m not longer on Facebook to announce anything to friends, I thought I’d just announce it here:
Looks like we’re moving to Toronto in a month or so!
A few things I’m looking forward to:
Lots of thrift shops and used stores
Having access to a huge library
Numerous choices in Farmers Markets for every day of the week
I’m going to miss the beautiful British Columbia, the friends we’ve made here, our church community, and being at least somewhat close to home, but I’m looking forward to new adventures in Toronto.
And for the family, who I’m sure is just dying to know if we’re still alive…and doing anything fun, here are some photos.
Oddly, I don’t feel at all qualified to write on disability even though my sister, Bethany, is mentally disabled. Perhaps that is because I haven’t done much of my own research on this until now, or perhaps it is because while I can relate well with Bethany, I struggle in relating to all other mentally or physically disabled people. However, despite my feelings of inadequacy, I intend to spend a few blog posts reflecting on some articles on disability from a recent journal on the topic published out of Baylor University.
I want to spend some time talking about the value of human beings and from where that value is obtained. Living in a society where independence, autonomy, and success are among the most important things in terms of someone’s value, it is hard to see how a disabled person can be of worth. Perhaps this is why abortion of disabled children is so prevalent – because society believes it is a merciful act for these children to not live so as not to undergo struggles and be a burden to those around them. If what we value comes from this ability to “do something with your life” then the disabled person has little hope of belonging in this culture.
And that is exactly what we are talking about here: belonging. There is a huge difference here than say “accepting” or “including.” John Swinton, who writes on this concept notes the differences: “To be included, one just needs to be there; to belong, one needs to be missed…To belong, people need to respect our world and take time to seek out its value” (“Many Bodies, Many Worlds”, 23). We desire not just to be a part of a community of people, we want to be an integral part, a needed part. We want to be part of a community where we can be of value to the whole.
When talking about the value of the disabled, we are also talking about the poor, the oppressed, the marginalized, the people we typically ignore or shun because we are uncomfortable in their presence. From where do they all obtain their value?
Thomas E. Reynolds, who is the father of an autistic child and author of the “Cult of Normalcy”, really wrestles with this issue of how we view the disabled. He describes how culture views those that don’t seem to fit in:
If a disabled body leaks and cannot be contained, it disrupts etiquette expectations and is shunned for lack of “normal” functioning. Indeed, it is commonly perceived as deficient, faulty, and lacking in qualities esteemed by a group. It seems to be a body gone wrong and in need of remediation through cure, healing, or rehabilitative adjustment to participate fully in society (“The Cult of Normalcy”, 25).
As Reynolds wrestles with this problem it leads him to fight against this cult of normalcy. He believes we have to move past the dichotomy of “‘us-them’ —especially as couched in terms of ‘normal’ versus ‘abnormal,’ ‘whole’ versus ‘incomplete’ or ‘faulty’—in order to undo the standard ‘ability-disability’ binary” (Ibid., 29). If we merely try to include those who are different than we perpetuate this “us and them” dichotomy which insinuates that while those who are normal have value to contribute to the community, the abnormal do not. Thus, we include them out of pity or kindness or some form of love, but not because they are actually able to contribute something of worth.
What then gives the disabled person value? If they cannot produce something tangible, if they simply need but (seemingly) cannot to give in return, where do they find their worth? In order to answer this question, we have to look at what it means to be human. This we will look at in the next blog post.
Reynolds, Thomas E. “The Cult of Normalcy.”
Swinton, John. “Many Bodies, Many Worlds.”
Both articles found in: Christian Reflection: A Series in Faith and Ethics. Disability. http://www.baylor.edu/christianethics/index.php?id=92612