I'm rather emotional at the moment regarding the issue of nondriving and my perspective as a blind person vs. perspectives in the epilepsy communities. I'm trying to write with a reasonable amount of clarity about my emotions. I'm posting here rather than there for obvious reasons. There is also a little vignette about something that happened during my training with Meghan and how it reveals some layers of emotions about blindness and independence.
I just read a post on the epilepsy community from someone talking about their feelings related to losing their driver's license due to having seizures. The language people use to describe this is often very upsetting to me: words like "imprisoned in my house," "begging for rides," etc. I am trying to be compassionate and realize that this is language that is coming from people who are very emotional. Part of my "problem" is that this is the only lifestyle I have ever known. However, the other part of my "problem" is that I don't feel that my attempts at encouraging people in this regard will be received as encouragement. The last time I tried to post something in an attempt to communicate that it's possible to live an active life as a nondriver, my comments were frozen. It was as if I didn't understand since my inability to drive wasn't seizure-related. It was actulaly very hurtful to me.
I understand how debilitating uncontrolled seizures can be: I can have several each day when mine are not controlled, and I lived with someone who had too many to count on many days for a few years. However, most of these people who are losing their licenses are losing them because of one or two seizures. There is not really anything to prevent them from going out and doing normal activity, just in a different manner. The loss of driving privileges is a precaution.
I try so hard not to communicate in a way that comes across as bitter... I just really don't have much tolerance for language like "imprisoned" coming from people who have eyes to use when they walk out their front door to locate a bus stop or building. I walk 1.3 miles to campus on nice days, beg rides from seminary students or take cabs on other days, etc. I have never taken the bus again since it passed me by that day last fall. I am too afraid of standing on the corner for an hour, waiting for a bus that I didn't see drive past...
This is all I have ever known. Wherever I walk, I only walk because someone shows me how to get there. That can feel like imprisonment: knowing that there is more stuff around town that I could get to if I knew how to locate it. These are just facts; but if I present them in the wrong place at the wrong time, I am seen as bitter. Sad, yes. Angry? At times. But bitter is another story. If I was bitter, I wouldn't slog along. I wouldn't smile. I wouldn't reach out even though I feel at times like my effort may be in vain... It would be easy to become bitter; but it's not a choice I make. My life would go downhill very quickly.
I think that a good bit of the problem is about people feeling that there's not really any good reason they should not be able to drive: they have two working eyes whereas I don't, so it makes perfect sense that they should drive and I should not. So until they get past that "I should be driving" anger, nothing that I could say could ever be of any use to them. But they don't understand that deep inside, I feel that I should be driving, too; and I never even had the chance to start because I never had a pair of working eyes. I have always had to accept my nondriving status with grace--and on top of this, I have to endure a lot of ignorance about it. Once a taxi driver asked me if I ever wanted to drive in a parking lot... It's one thing for someone close to me to explore that idea with me for the sake of me understanding something about the physical mechanics of driving. But the real pain of not driving is about the inability to move around voluntarily, and I really don't like strangers assuming that this is all settled by a one-time driving experience. No one would ever ask a sighted person that, even if the person was taking a taxi. It would be considered taboo to ask why the person wasn't driving or bring up the issue of nondriving. But because my disability is visible, nothing is taboo. Nothing is private. I have never had the luxury of thinking, "I could be driving, if only..." I have never had the luxury of being angry. "I could be driving," if uttered in my parents' presence, would bring forth a response of, "Well, you can't." Mom had a saying for a while that I hated: "Put your big girl panties on and deal with it." I always hated hearing her say it; but it's always been my way. I may cry while I'm doing it, but I always do it.
When I went to train with Meg, i was told that I would only have to do a particular route once due to my arthritis. The next morning, I was called out and transported along with the rest of the group to the site for the second go-round. When I questioned what was going on, the instructor said, "I think you can do it. It's just one time.
The problem with the route was that there was a rather long, somewhat steep hill about halfway through it. By the time I got to it, my ankle was smarting badly, and all I wanted to do was sit down and wail and beg the instructor to pick me up in the van. He was behind me with another student, and I knew that I couldn't have what I wanted. So I trudged along, my mouth open in silent sobs, tears streaming down my face. I was ashamed of myself for crying in public about a silly walk; but I couldn't stop. I was not conscious of what was beneath those sobs. To tell the truth, I never have been fully conscious of it until this moment. It had too many layers. If anyone had asked me, I would have said that I was crying about the pain and the fact that I had to walk a second time and I was afraid I couldn't make it. But deep inside, where I was not at all aware, I was crying about anger that was incompatible with "the big girl panties." If I didn't have arthritis, I could walk this route with no problem. But if I could see, I wouldn't have to walk it at all. I could drive it. ... And I was crying about the guilt that came with those feelings: for if I could see, I would not have the pleasure of knowing this sweet, absolutely wonderful dog. And how dare I think such things?
It is partially the guilt and the mixed blessings that help me keep going; but feelings buried alive don't really die, and every time I read those posts from the epilepsy communities, they resurface with a vengeance. Having my posts frozen was just another burial of my feelings--a burial performed by someone else. It reinforced all the reasons I have for burying; and it gave me a few more. Don't talk. Don't feel. You wouldn't understand anyway. We don't want to hear from you. You have a valid reason not to drive. We don't. That's the message I got, whether it was intended or not.
But I do understand, I want to cry. I understand better than you realize! For me it's not about the disabilities being similar or different. It's about not driving. Not driving is not driving. I could just not mention the reason why I don't drive; but in that sense, the disabilities do matter. They have an advantage that I don't. They can locate the buses, walk freely around the streets, figure out that the taxi is letting them off in the wrong place... My perception is that understanding that someone lives actively who doesn't drive and can't do these things might be encouraging. But based on my past experience, my perception is incorrect. It only makes me look bitter. So I don't speak. All I can really do is pray for them, that the people who can truly encourage them will find them, and keep living my life in the way that I do and let it encourage whomever it's supposed to encourage. It just makes me sad, and it hurts to be misunderstood.