This is another post that will likely attract ire. However, my own personal experiences - and the experiences of loved ones, friends, and students - compel me to speak up and counter what I feel is a dangerously distorted "theory" of the world whose accuracies are marred by much that is partially or wholly false.
Which personal experiences are germane to this discussion? When I was in my early twenties, I developed a severe, systemic, and rapidly progressive form of rheumatoid arthritis. It started with swelling and pain in the first two fingers of my right hand. Within months, it had rendered both my hands barely functional claws. Only a year later, I walked like an eighty-year-old lady, as the disease had taken out my feet, ankles, and knees. Fortunately, it was at this point that I was finally diagnosed and prescribed my first medications, and as a result, my condition now can be best described as "stable." I have never experienced a full remission and have never recovered full functionality, but at least the condition has been substantially slowed and I can actually move.
I know I am better off than many; I'm still basically ambulatory, for one. But there are limits beyond which my body cannot go and many ordinary activities that my body simply cannot do -- which is why I have often chosen to rent a cart for large conventions and why I have trouble at subway stops that lack elevators. I do know, intimately, how tough it is to navigate, say, Dragon Con when you're wheelchair-bound. I do know, intimately, that many spots in older cities are essentially inaccessible if you have mobility issues. I remember, vividly, breaking down one night after discovering that a certain retro party my friend wanted to attend in lower Manhattan could only be reached by climbing three flights of very steep stairs.
I also have two immediate family members who are in far worse straits than I. My mother suffers from an as yet unidentified immune deficiency that has left her open to a number of nasty infections, including one that has damaged a lobe of one of her lungs, one that has damaged her hearing in one ear, and one that basically destroyed what was left of her right knee (which had already been disabled by arthritis and replaced). She also has severe degenerative disc disease, which means, like me, she deals with limited mobility and chronic pain. My brother, meanwhile, was born albino and consequently has a vision impairment that has left him unable to do many things that we sighted folks take completely for granted.
Here's the thing: Matt's experiences and mine are different. I will never be able to see exactly what Matt sees with his eyes, and unless Matt also develops my disease (or something similar), he will never know precisely what it's like to walk around in my skin. But because we lived under the same roof for roughly twenty years and we care for each other profoundly, we both still understand, at least on some level, the challenges the other one faces. Over the course of our relationship, we've developed imaginations capacious enough to comprehend, imperfectly but still sincerely, not only the differences we find in each other but also the differences we find in others. This is what happens when love leads the way.
All of these experiences - in addition to others I have yet to share - helped to drive my deeply disturbed and even angry reaction when a self-described "disability activist" visited my blog and started pushing a very aggressive view of the relationship between disabled persons and the larger society that is influenced, according to his own description, by the "social model of disability."
Read more at the original post.
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