Driving with Usher Syndrome.
compiled from conversation on the Deaf-Blind List
One of the many issues parents of young adults with Usher Syndrome and
other conditions that result in low vision face is whether or not to let
their son or daughter get their driver's license. This topic was discussed
at great length recently on the Deaf-Blind List. Because I benefited so
much from this discussion, I thought it would be worth sharing excerpts
with our SEE/HEAR readers. My thanks to all of the Deaf-Blind List members
who participated in this discussion and who were willing to share that
discussion with those who do not have access to the List. The discussion
in its entirety is available through the Deaf-Blind List archives if you
would like to read more. You may access those archives at
DB-Link at http://tr.wosc.osshe.edu/DBLINK
For many parents of children with low vision, deciding whether or not to let their son or daughter get a driver's license or attempt to drive is a difficult decision. Even though some individuals may have substantial visual field impairments at an early age, they may still be able to pass the Department of Motor Vehicle's (DMV) eye exam since a visual field test which checks peripheral vision is not a part of that exam. Additionally, the driving portion of the test may not take place during the evening hours, so night blindness may also go undetected by the examiners. Students who go through driver education generally do have to undergo part of their driving during twilight conditions, which can create problems for the student with Usher's and some other eye conditions. As you will learn from this discussion, there does not seem to be a "right" answer. For parents of children with Usher Syndrome confronting this issue, I encourage you to:
Discuss your child's visual functioning and prognosis with your ophthalmologist or low vision specialist especially as it relates to driving; For the child with Usher Syndrome, discuss "daytime only" driving as an option; Have a frank discussion with your child about his or her vision and the possibility that there may come a time when they can no longer drive; and Contact adults with Usher Syndrome and other parents through support groups or the Usher-List and discuss your concerns with them.
Dorothy Stiefel writes: This is the problem at hand with all young drivers who already know they have compromised vision but "think" they are careful enough. This is denial of another kind. Some really believe their vision is still okay for driving "just in the daytime." Others are hesitant but drive anyway because no one has said they shouldn't be driving. Can we fool ourselves? Usually no, but in the case of peripheral loss, it is so subtle that the would-be but should-not-be drivers do it anyway, mostly because what they are "seeing" that feels like all they should be seeing with. Do you get my drift on this?
Most all of the important mobile activities and contact sports a person engages in, is through the use of the vision's mid-periphery where both cone and rod cells reside. Night vision is governed by the outer perimeter of your field (rod cells), and of course, all detail, acuity and color vision is the responsibility of central vision (cone cells). So, translated here: many episodes of bumping into, knocking down, missing the ball, stepping in holes, etc. are caused by your field of vision having been narrowed past the mid-periphery of sight toward that "tunnel vision" we all talk about. So, if you've been having mishaps out and about on foot, with no explanation for them, what do you think will more than likely happen behind the wheel of a car? Please think carefully on this one.
If a young person has already been diagnosed, becoming a driver may be okay if his field of vision is closely monitored and well within the range of acceptable peripheral sight . . . And, yes, enroll in a driver's education course for people with vision impairment if one is offered in your area. DO NOT drive at night, period; and realize that your driving days are numbered.
The automobile is considered a rite of passage for young males in particular. . . It may be more difficult to deal with quitting what a young male driver has enjoyed for a short time, only to have it taken away from him, than it would be never to have attempted it in the first place.
As Dorothy points out, an important consideration for parents and the student is whether or not they are prepared to lose their driving privileges later on. As you will see, this experience can be quite devastating.
Mary Dignan shared some excerpts from her personal journal of the period when she was coming to terms with life without a driver's license:
It hasn't been that bad, a week without driving. In a way, much better than waiting for the inevitable smashup and possible major and even moral injuries. What HAS been bad is the grief and the depression, and the tunnel, which I don't see ending. `You have all kinds of options,' a friend told me. `You just can't see them right now.' He also said that I am not handling things very well that the issues I have to deal with right now regarding my sight and hearing are so overwhelming that it would be good for me to get some help. He specifically mentioned my anger and the way it is spilling out exploding everywhere. Well, I AM angry. I have worked all my life in a world that is not mine, and striven with all I have to communicate with it on ITS terms. Now I look at the television car commercials, and all of a sudden I boil, thinking, damn it, in a world where cars are essential and mobility is success, I now have to figure out how to deal with the world all over again.
I'm tired of this anger, I'm tired of this depression, and I want out. The fact that I don't drive anymore isn't important. The fact that there are options out there is and it is time for me to claim them. . .
So driving, not driving that is, isn't such a big issue. I told my brother last night that I don't miss driving so much as I am missing the ease of mobility. It's not a bad case of restricted mobility, as Andy is an obliging chauffeur. Too much so, in fact to the point that my independence from him is an issue, but it's resolvable.
It's also part of a more basic issue, that of my perception of success and image of myself. I said something about mobility "mobility is success" that is a core belief, one that I'm beginning to rattle and shake around, get the dust off, give a reappraisal. There was another one, "cars are essential" I believed it was. That I've already begun to throw out. Personally, driving a car does not necessarily equate with mobility or success. The relationship of mobility to success, on the other hand, is a whole other issue.
From Webster's I note the following significant definitions of being mobile: capable of moving or being moved (movable); changeable in appearance, mood or purpose; adaptable, versatile. Webster's also notes having "opportunity for or undergoing a shift in status within the hierarchical social levels of society." And success is the favorable termination of a venture (i.e. "the attainment of wealth, favor, or eminence"). To succeed is to "turn out well" and to "attain a desired object or end."
The bottom line definition of success, then, can only be a personal definition. Define what it is you want to achieve to venture and if you do it well, then you're successful. So, I'm capable of moving and being moved; I'm changeable in appearance, mood and purpose; I'm arguably adaptable and versatile, and as far as I'm concerned I have all kinds of opportunity to "shift my status within the hierarchical social levels of society." But more significant, I have opportunity options to shift my status, period, not just in terms of hierarchical social levels. And that's it, right there. Equating mobility with success isn't such a bad thing to do, but it's important to realize that the definition is mine, and it is important to know the definition for what it is. . .
Randy Pope writes: I was diagnosed with Usher II, less than 10 degree (visual fields) total, at the age of 37 back in 1990 of January. Little did I know that diagnosis would change my future forever in a massive way. The doctor told me that I was legally blind and asked me to stop driving. I was stunned and did not know how to respond. Luckily I had a friend with me to drive me home after the eye exam. The shock of the news was overwhelming . . . I could not even talk to anyone, not even my family. You can't even imagine the feelings I was going through. When the initial shock stage had passed, I knew the time had come to carry out the death sentence of my driver's license.
That day ... I left work around 9 a.m. on a sunny day. I only had to walk about a half of a mile to the Department of Motor Vehicles (DMV) . . . it was the longest walk of my life. The DMV building looked like death row. The door seemed like that big heavy steel door in a prison. I opened the door and walked in; funny, for some reason I heard that door close with a loud bang even though I am almost totally deaf. As I approached the desk, the clerk looked like a witch ready to destroy me. . . My whole body was shaken with fears and my mind was whirling like crazy. Tears were running down my face as I gave the clerk my license. She said out loud, but without any passion or feeling, `What was my problem?' I screamed and cursed at her with unprintable language, stating that I was going blind. The other clerk heard me and asked me to come into his office. He listened patiently while I explained my situation with tears and anger. He explained to me that I was making the right decision to protect myself and other drivers on the road ... my freedom was executed on May 1st of 1991.
... My young friends on this list, if you are thinking about getting your driver's license knowing you will lose your vision some day, please don't. The pains and suffering are not worth it. Feelings about losing the license are still there for me. You would be better off not to get it ...
Jeffrey Bohrman agrees: The Great Hippie (Randy Pope) said it loud and clear to the young potential drivers. I was one of the lucky ones who never learned how to drive and I still maintained my independence. It really broke my heart to see many of my friends with Usher's crying when "forced to give up" their licenses ... The pain of becoming blind, losing a job, changing communication modes are bad enough, and I sure didn't need another issue to add.
Still many people feel like Heather Schoenwald feel that the experience of driving was worth going through the loss: I started to drive when I was 15 years old. I enjoyed every minute of it. I worked damn hard to earn my driver's license and after all that work, I was so proud of myself for accomplishing a goal. After I graduated from high school I decided to buy myself a brand new truck. Driving was a big deal to me because it was my freedom . . . I traveled all over and got to see many different things.
When I turned 21 years old I started to have problems seeing in the dark. So I thought . . . all I need is new glasses. . . . The doctor told me that I had Usher's syndrome and he told me to stop driving. I told him that I was going to continue to drive . . . like it or not. I could see just fine during the day, but at night it was hard. . . . I got to drive one more year. I had to stop driving because I became fully blind (as a result of optic neuritis) for three months. I still had my vehicle sitting in the driveway, wondering if I was ever going to drive it again.
One day my parents were not home and I thought it would be cool to just sit in the truck, blast the radio and enjoy it. I was wrong. I got so upset, crying so hard, because in the back of my mind I knew I would never drive again. I started to have nightmares about driving. I was driving; I hit and killed that person. I woke up sweating, heart pounding 100 mph, and I was crying so hard. I told my parents, `Please help me sell the truck, I can't drive anymore.' My parents flipped out and told me that I would get all my vision back and they were not going to sell it. Later my vision (stabilized) and I knew I was finished driving. Finally my parents realized . . . what they had to do. It was very hard for my parents to see something valuable go, something that I worked so hard for.
I am now 24 years old, learning to have a lot of patience with myself and learning to use public transportation. I do miss driving, but I am very happy that I had the experiences of driving. I'll always keep the fun, good memories of having that freedom.
If your child can see, then let them have the experiences of driving . . . if they don't see at night, driving then is not a good idea.
Janet Sand adds: I started driving at age 17 and drove for about 12 years before quitting 20 years ago. I never did drive at night, and the last few years I drove to only three specific, close-by locations . . . I am very glad I did the amount of driving I did. It (1) gave me a feeling of independence and confidence which is still with me; (2) permitted me to develop a sense of direction from a driver's point of view, enabling me to give better directions; and (3) gave me an understanding of automobiles, automobile travel, and the art of driving, all of which are important parts of our culture.
. . . I fortunately never had any kind of accident, and was always aware that my concentration was intense when I drove. I almost never drove other people around because it detracted from my concentration.
My personal feeling is if (a person) is reasonably mature (though 15 or 16 is still pretty young) and has an appreciation for his physical limitations and the responsibility involved; then he should learn to drive and drive regularly if it seems to work out. He will know, of course, that at some point he will most probably have to stop driving because the risks are too great based on his declining vision.
Which brings me to Randy (Pope) and his strong grief over having to stop driving. I really feel that a lot of this comes from his finding out rather late that he had RP (retinitis pigmentosa) and (at the same time learned he) would have to stop driving. The grief over his driving was enmeshed in his grief over the RP as a whole. This is not the case with (your son) and a lot of the others of us who knew from a young age that our vision would decline over the years. I knew that I might some day be blind, but I wasn't then and was capable of driving well (carefully and only in daylight). I expected to have to stop some day . . .
Above all, examining the risk to themselves and to others must be a part of any decision making process:
Tom Peters notes: (One friend in Connecticut) gave up her license just 3 weeks after ... she had a scary, small accident from the late afternoon sun. She tore up her license and sold her car. She said it is not worth carrying the guilt for harming others.
Rich McGann shares this story: (A friend) told me that when he was 16 ... his parents let him drive during the daylight. But he did not know he had Usher's. His parents told him he had to get home at 7 sharp during the spring. When he was at the shopping mall, he met deaf friends and chatted with them. He lost track of time ... it was 10. He tried his best to drive home, and he managed to get home safely ... (Kids) should be given details (about their vision) before they make decisions about taking driver's education.
Randy Pope: Do I want to risk the family's financial situation? No way!!! ... Do you think the insurance will cover the damage resulting from an auto accident? Not necessarily. Worse yet the family whose loved ones get serious injuries or is even killed can sue you way over the limit of the insurance policy if the insurance decides to pay at all.
There are alternatives to being a driver. Here are a few that were mentioned:
Carolyn Alflen notes: If my vision becomes worse, I still need my car because someone will drive (me) ... like an SSP (Support Service Provider) ...
C. C. Davis shares this solution: I have another pair of blind friends, a married couple, who seem to enjoy having their own car. They maintain the car and like to offer it to their friends who drive when they all go out together, or need to run errands. Of course, most of their transportation is public transportation.
Who knows what the future brings? Some of the dreams of those individuals who commented on this topic underline the extreme importance we place on this activity in our society:
Rich McGann suggests: Maybe it would be neat to have electric eyes (on cars) so we can let the computers do the driving and we will feel like we are driving.
Kerry Wadman elaborates: You know those fantastic guiding systems used in missiles ... could also be used in cars ... actually if there were special cars made that would do the guiding for people, then with the exception of software and mechanical failures there would be no accidents even for those who could drive without visual disabilities . . . autopilots do that kind of thing ...
I think Randy Pope sums it up best: Yes, we all should live life to the fullest, like I am doing right now. Most of all losing the driver's license is not the end of the world. I finally learned that. It's tough to live (without a driver's license), but life is not a bed of roses. I am dealing with this pretty well. In fact this experience has taught me quite a bit about life, making me stronger than before. . . By the way, when that dreaded day does come, I will be here along with the others. Giving up your license does not mean you are defeated. You are making a giant leap into the world of courage, strengths, and wisdom where most people will never enter. It will be tough, but you will definitely be stronger than most people.
If you would like more on this topic write to me or contact some of the other resources below.
Texas Deafblind Outreach at TSBVI
Mail to Kate Moss, Family Support Specialist, Texas Deafblind Outreach, Texas School for the Blind and Visually Impaired, 1100 West 45th Street, Austin, Texas 78756. Phone numbers include: (512) 206-9224 (voice/voice-mail), (512) 206-9188 (TDD), or (512) 206-9320 (fax). Email: <MOSS_K@tsb1.tsbvi.edu>.
Send an email with the message that reads "Subscribe Deafblind firstname lastname." to <email@example.com>.
Send an email message that reads "Subscribe Usher-List your email address." to <firstname.lastname@example.org>.
Some individuals who would be happy to visit with you by email regarding this issue:
Dorothy Stiefel at <dstiefel@INTERCONNECT.NET>
Randy Pope at <CalHippie@AOL.COM>
Jeffrey Bohrman at <Jsb4@CRIS.COM>
Carolyn Alflen at <103447.3431@COMPUSERVE.COM>
Tom Peters at <funnytom@MEGAHITS.COM>
Janet Sand at <Sand_Boxxx@AOL.COM>
Ryan Bondroff at <RNB4x4@AOL.COM>
Rich McGann at <rkmcgann@NETCOM.COM>
Kerry Wadman at <ortckw@OISE.UTORONTO.CA>
Heather Schoenwald at <heather159@JUNO.COM>
C.C. Davis at <CCFUTBOL@AOL.COM>
Access this wonderful website by surfing to <http://tr.wosc.osshe.edu/DBLINK>. They have a wealth of information on Usher Syndrome and many other topics as well as links to many other helpful websites. For non-Internet users, write or phone DB-LINK at 345 N. Monmouth Ave., Monmouth, OR 97361, (800) 438-9376 (voice) or (800) 854-7013 (TTY).
Last Revision: May 12, 1998
URL of this page is: http://www.tsbvi.edu/Outreach/seehear/winter98/driving,