Log in

No account? Create an account

Previous Entry | Next Entry


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.


( 15 comments — Leave a comment )
Mar. 3rd, 2007 07:53 am (UTC)
I saw this post you're talking about and it seems to be a common response to having your license taken away temporarily for seizure-related reasons. The thing is that...your advice and perceptions offered SHOULD be encouraging to people that haven't lost as much as they think, but the tough part is that I think they're often still in shock and truly feel as though their own world is just crumbling down. Just as you say you have known no other way than to not drive, these people HAVE known another way. And while they should be grateful for that, absolutely, what they feel is that they are suddenly experiencing a loss in the life that they are used to. And I think this is where their wording and everything comes from.

I was unable to drive for about 9 months...I was initially diagnosed with epilepsy and went on a 3-month driving hiatus, was good to drive for 2 weeks and then had a breakthrough seizure due to an infection. This caused the doc to require a 6 month driving break instead and I was frustrated. I was absolutely frustrated BOTH times that they told me I could not drive, but the frustration was worse initially. Once I got over it, I realized that for me it was a blessing. I met some friendly and amazing bus drivers. I walked the 3 miles to school on occasion..just listening to music and enjoying the fresh air. I realized what it is like to try and find independence outside of my vehicle.

I had moments or days when I absolutely felt exactly what these people talk about -- I begged for rides and I HATED it. I felt like a burden. I didn't really feel imprisoned in my house because I had access to a bus, but I did feel imprisoned in a certain part of town as the bus didn't travel across town. At NIGHT I felt imprisoned in my house because the bus service stopped at 6 pm. But I learned how to make things work and it developed some healthier habits for my life...I learned that I actually really enjoy walking places or taking the bus. But the problem is that so many people are too hung up on the fact that something was "taken" from them...they can't even stop to smell the roses for a second.

If they could stop to smell the roses, then your advice and perspective (which is wonderful) would be taken to heart. I wish more people could appreciate what they DO have.
Mar. 3rd, 2007 08:32 am (UTC)
Thanks for your comment. I tend to have an easier time when the person posts something about their actual situation that gives me a clue that there is real hardship involved that is very difficult to overcome (e.g. being a commuter or living in a rural area with no reliable public transit). I've lived in a town with a one-car taxi service and no bus, and the one car would often take three hours to get to me; so I do understand that not driving can truly be a headache and if you've had the ability it can feel like banging your head against the wall to lose it. But i also know that people are extremely kind if they know you need something, and much of the time the "imprisonment" comes about because people are too proud to reach out for help, feel too stigmatized to admit they have epilepsy, etc. Life is too short for that, and I got over that stigma a long time ago. Having all my hidden disability-related problems blamed on blindness and getting mad about it helps a lot: I'd rather people understand what the real "problem" is, and if they're going to be jerks about it then I move on. I don't have time or energy for pretending to be healthier than I am, and I have found that overall people are respectful of that because I'm doing as much as I can and they respect that. I figure that if people need to say no to me, they are capable of doing it and if they don't then that's not my problem to feel guilty about.
Mar. 3rd, 2007 07:56 am (UTC)
*hugs* You articulated my feelings on this subject so well. I'm feeling particularly stranded and a bit bitter right now; I'm home for spring break, and walking and public transportation are just not options in this rural of an area, and friends still don't get that I can't hop in a car and come see them anytime I want.

Just because we never knew what it was like to drive doesn't mean we still can't miss it.
Mar. 3rd, 2007 08:35 am (UTC)
I go through major bouts of depression when school is out because I don't have contact with people. I'm trying to think up ways to circumvent this during the summer; but a lot of it is going to depend on people being responsive to my calls and requests for company. It's very frustrating, but I'm going to have to try because it's all I know to do.
Mar. 3rd, 2007 09:27 am (UTC)
This was such a good post - thank you for making it. You certainly struck some chords for me with the 'big girl panties' ideology!

I think one of the major differences that goes a little beyond the basic 'congenital vs. acquired' distinct you make is the notion that to a certain extent people who have had lifelong disabilities have been able to consciously make decisions about what limits and freedoms they choose to have in their lives. For instance, I've decided that although I'd like to live in the bush here in Australia, the lack of public transport and taxi services doesn't make it viable. I hate even having to make such a choice, but I've had a long time to come to terms with it and my life expectations have been planned around that choice. On the upside, I'll always be able to travel independently and I have access to a wider pool of skilled jobs.

I suspect that someone suddenly losing their ability to drive not only has to face that loss, but a broader loss of life choices. Maybe that's why these people are so angry. It's not just that they have to use the bus or a taxi, it's that they wanted to live somewhere further out from the city so they can afford to buy instead of renting, and so their kids will have lots of room to play in a safe neighbourhood.

There are a lot of broader life choices based around the assumption that you can drive. You assume you'll only have to carry your groceries from the trolley to your car boot, and from the car boot to your kitchen bench when you get home, so you shop once a week in a big run rather than making smaller, more frequent trips. You live further away from the shops, your children's school, and your extended family on the basis that it will be easy to get to those points in your car.

We've had a lifetime to weigh up the checks and balances in those situations. How important is it that I can get to the supermarket with the better fruit and veg, versus a local doctor I like? I know I'm not always well-reconciled to having to make such decisions, but mostly I just accept that it's a less desirable part of my life and move on. People who've driven all their lives are used to not even having to think in those terms, so losing their license taken away is a loss of choice, rather than of independent travel.
Mar. 3rd, 2007 09:47 am (UTC)
some more thoughts
Interestingly, one of the reasons it's easy for me to identify with the commuter or the person living in the rural area is that these are things that are difficult for me to escape even though I know that living in a metro area would be better for me practically speaking. Once a blind person in the States lives in an inaccessible area and is unemployed--or never employed to begin with--it's very difficult to change the situation, even when willing. Some of my specialist doctors are a 45-minute drive away, and I can't get myself there. There is no inter-county transport as there is in areas like New England. So when someone talks about commuting to school and losing the ability to drive, I understand that this is disabling for them... Getting rides could mean locating total strangers to take them, and that takes a lot of guts. I've had a lot of time to learn to deal with this, and perhaps that's my primary advantage. (It will be interesting if lorifran57 weighs in on this...) I'm somewhat of an old hat at this assertiveness stuff by this point in my life, partially because I have to ask for assistance with so much in addition to transportation. It forces me to become comfortable with the very idea of asking for help--and the idea of receiving it.

I need to thank you all for the dialogue. Please do keep it going. This is good for my soul in many ways. [hugs] everyone!
Mar. 3rd, 2007 01:14 pm (UTC)
Re: some more thoughts
I'd agree with you on the asking for help thing. By no means am I always good at it or always happy about it, but I am used to it now. I can only compare it to the issues I went through when I had to get people to interpret for me while I couldn't hear at all; issues of not wanting to be a burden and suddenly feeling as though I was. There's a place between 'being a burden' and 'disabled person accessing fundamental rights to participate in society' where my emotions usually sit when I'm asking for help, but getting a more severe dose of a preexisting disability unseated that.

The concept of 'inter-county transport' is foreign to me. We don't have the idea of counties at all, really - local government areas might cover it, but they don't have the same level of control over things like transport. Public transport is run at the State level in Australia, so taxi subsidies, public transport discount fares or free travel is statewide. It's still quite difficult to access public transport or community transport if you're in a town without a train station, though.

In Australia, if you're a blind or vision impaired kid looking for a university education, chances are you'll move to a large city after high school. We don't have the concept of 'college towns' here at all, and most of the good universities are in the capital cities. Once you've moved it's easier to stay; you have personal networks and some government support mechanisms if you need them. The people who pursue TAFE (our version of community college, I think) or apprenticeships in country areas would definitely have a harder time of things in terms of moving to cities or getting transport and jobs near where they live.
Mar. 3rd, 2007 11:45 am (UTC)
You are so eloquent (more than I could ever hope to be) and I hope you haven't given up on expressing your opinion on this topic to the people who may benefit from it regardless of how they will take it.

Yes, the fact that they are losing something that you never really had may make a difference on how everyone sees it. But, that doesn't change the underlying reality. And isn't this much of the problem which can arise between people who've been disabled since birth (or very early childhood) and those that acquire a disability later on in life. You made a lot of good points, and I urge you not to give up on expressing yourself and your opinion on this and other matters in those communities.

The guilt you mentioned feeling about being upset about the inability to drive is normal. I so often stop and rebuke myself for being upset about something that I know someone else can't take for granted. And while recognizing that it is something you need to be thankful for, it doesn't mean that your feelings of guilty and anger are invalid.

I have no idea what I'm trying to say. Your entry makes a whole lot of good points on so many levels but apparently I'm not very eloquent at 6 in the morning. I guess I just really want to encourage you to keep putting your two cents in where you feel you can. Even if they don't listen, maybe someone else reading will and see something there that makes perfect sense.

(Wow I make absolutely no sense, but no matter.)

Take care. Big hugs!
Mar. 3rd, 2007 02:48 pm (UTC)
what I did
I did post a comment. I tried wording it very differently from my last attempt at talking about this in the community--I tried to be very intentionally aware of the other person's emotions. It helped a lot to have had the dialogue here first and confronted my own emotions.

Here's what I said:

I'm sorry about the loss of your license. Hopefully it will be a very temporary dilemma for you. The commuting issue sounds very frustrating. How far is your commute? Are there other people from your area commuting to school? How is your school's general enrollment? Is there a possibility that there are commuters you aren't acquainted with personally?

I am a nondriver for other reasons--my seizures had onset in my teens secondary to another disability, and I've never driven. So while I don't have experience with losing a license, I do understand the issue of trying to live actively as a nondriver. It can be done, but it takes some self-disclosure and persistence. It can be a very emotional thing at times to not be able to do your own driving; but often people are very willing to pitch in if they know you need help and if you can be a bit flexible with scheduling. I get stuck on campus for many extra hours a week sometimes due to trying to work around the schedules of people who give me rides. I keep things with me so that I can study, work on papers, etc.

Hope this is helpful.

So far there are no other responses to the post. I feel kind of badly for the girl. I thought her post would generate a lot of discussion, but I guess maybe everyone is afraid to touch it because no one can discuss it safely. Then again, maybe people just aren't night owls over there...
Mar. 3rd, 2007 04:42 pm (UTC)
You know, this is similar to what I experienced in my rehab-counseling job. What I mean is, my views on how people could live actively with blindness were dismissed by some of my clients because I had always been blind and therefore could not possibly begin to understand what they had lost. I think it is human nature sometimes to kling to the feeling that no one could possibly understand.
Mar. 3rd, 2007 06:43 pm (UTC)

Mar. 4th, 2007 03:12 am (UTC)
I understand what you're saying. So much value is placed on driving, and there are days when I'd give my right arm to be able to do it. Life would be so much simpler, convenient, nonstressful, and all of that, if only I could drive.

I guess the difference is, as people, who were born blind, we've had a lifetime to adjust to the fact that we can't drive. When I was sixteen, everyone I knew was getting their license, but not me. The following summer, I got my first dog, which was awesome, and I made that be enough. They might have cars, but I had a dog.

Anyway, people freak out when things they take for granted are taken away from them. Often, they don't stop to think about the ways in which they can still live their lives. The loss is all they see.

I'm sorry people treated you badly, when you were trying to be supportive. That was definitely uncalled for, and I can understand your reluctance to share your feelings with those people.
Mar. 4th, 2007 04:02 am (UTC)
Wow. So well said. You're awesome. Hugs.
Mar. 4th, 2007 06:10 pm (UTC)
I've learned alot from reading this post and have much to chew on. Don't quite get what happened between you and the poster who had you banned(?) from some board. The driving issue struck some chords with me though.

I'm 29 and I don't drive because I'm afraid to. I'm deaf in one ear due to a car accident where I almost could have died. The Lord has provided for me in that I've always lived near a very close and good bus line. My last job I was able to walk to work between 10-15 minutes! Praise God for that! Still though my not driving has cost me a social life. Because I don't drive people have disappeared from my life and I've also been told by freinds and family that visiting with me is inconvenient for them due to "how far away" I live. If it were not for the computer I sometimes think that I'd not even exist.

It's interesting that you mention living in New England and the lack of public transportation there. When my husband and I spent the 2 weeks touring there that was one of the first things we noticed. My husband pointed out, and still does from time to time, that if we ever were to live there then I would have to be able to drive. HAVE TO. And so I see my dream is coupled with my biggest fear.

Still though I know I sound like a whiny brat compared to you and your life. I hope I did not offend you in any way with sharing what I did. I will pray for you about all of this. You are very brave. :>
Mar. 4th, 2007 08:19 pm (UTC)
the background on the nondriving issue
A long time ago, there was a nondriving post on the epilepsy community... I replied to it, trying to offer some suggestions about ways to cope with life as a nondriver, and I mentioned that I didn't drive because I was visually impaired. I was treated very rudely, and eventually the person froze my replies so that I couldn't speak on the issue. It was obvious that what they really wanted was just a bunch of commiseration and "poor you, you can't drive, what a bummer" responses. Several other people said the same types of things I was saying, and eventually the entire thread was deleted. So when someone posted recently about losing her license, I wanted to reply and say something to her because I do care; but I was afraid that my post would be taken worng. So that's the background...

New England has sort of good transportation in many areas. I live in the Midwest, though, and we have very bad transportation--actually none between towns.
( 15 comments — Leave a comment )


Sarah Blake LaRose
my personal site

Latest Month

August 2016