We Can Be Killing Machines

i’m probably going to get a lot of comments regarding this entry. it could either put me in the hot seat with my deafblind community of usher’s compadres or get a whole lotts respect for speaking out.

i have a beef with people who have usher syndrome and drive. driving cars while they know they have a genetic disorder that allows their sight to deteroriate over time and eventually at end of the phase at any age, time in their lives, they’ll go completely blind. i’m one of these people who have accepted the fact sight will just be a pleasant memory and a precious part of my life when one day i see nothing but feel/taste/smell so much more. back on the track here. i read someone’s entry recently – that person has usher’s and talked about saving up to get a new car. baffled, i posted a comment on said’s site and asked “why are you getting a car when you know you have usher’s? having a car with your limited vision is turning it into a killing machine” – more like along the lines.

it infuriates me to hear so many usher’s drive. don’t get me wrong – a lot of us have loss of vision in entirely different intervals, levels and amount. no one is like me. but i know enough of the dangers it would pose to others walking on the street or driving in a car north/south/east/west of the car that an usher’s so confidently drives.

i have my reasons for being against this. in spring of 2005 i was in a car with someone who had usher’s. of course when i got in, i asked him bluntly: why are you driving a car while you’ve got usher’s? he replied by saying he can see well more than anyone thinks he can and that i should just trust him. okay. so off to eastern market we went. it got dark, and we hopped in his rental car back to gally. we passed 7-11 on md ave and enroute, i saw a black guy jaywalking the street and suddently turned to look at my friend. his face was strained, as if he was trying to ‘see’ in the dark, and the color of the guy’s skin made it even difficult to distinguish even under orange street lights. horrified, i realized he could not see the black guy so i slapped his arm to stopppppp the car. he did and the headlights shone on the black guy. he was standing a mere 10 inches from the hood…. his eyes like deer. it was so horrifying. i told my friend to immediately bring me home. that was the last time i rose with someone who has usher’s. never again.

he said he could see well. hundreds of usher’s say they can see well. hell, a few years ago i said i could see well. it’s all part of denial. we do not want people to know we’re hurting so bad. we don’t want to give up the luxuries we’re used to. driving, travelling, taking off by ourselves, being independent and being able to see. we never want to give up all that. so we just focus on what’s in the middle of our tunnel vision and claim we see well. i now can tell you… it’s unpredictable. only you (the usher’s) can know how well you see. no one else.

but are you willing to pay the price? by hitting someone? a young five year old girl who runs on the street to get a ball – any sighted person would have caught her except you. an elderly lady slowly crossing the road but you’re too busy looking out all sides your tunnel vision misses her and hit her. knowing that there are usher’s who drive, i am terrified to death because being usher’s myself i cannot get out of the way like any other sighted person.

in louisiana, many usher’s drive. because of lack of reality and education. louisiana usher’s drive in the country. so what? they kill tons of squirrels and not even know it. but what happens if they go into the city? the placid vast horizon of the country becomes a noisy, crowded street in the city. anything can pop up. the state of lousiana passes out driver’s licenses to usher’s as if it were coupons. ‘oh they can see in front of them, that’s good enough for me’ and tada the dmv passes these lucky cards out. an ushers told me that an elderly lady who works for the dmv just handed it out like it was candy and didn’t give second thought to an eye test. oh my dear jesus. she’s handing out licenses to kill.

i don’t have a driver’s license. i was told i had usher’s at eight years old. so i got the education i needed. two close canadian friends/siblings of mine don’t even drive either. no license. they know. ontario outlaws people with usher’s to drive. but for many out there who don’t even know they have usher’s until it’s noticeable, it’s bound to happen but it’s up to them to sacrifice the luxuries including driving a car so they can focus on their well-being and happiness in life instead of dwelling on what they’re going to lose. for many usher’s out there who acknowledge it and own a car… it’s time for you to let go. because it may be too late….

never underestimate how much you can see. it can cost you your life. it can cause a domino effect of grief and anger. no family should bury a loved one knowing the person responsible for this could have prevented it by giving up driving. think about it.

so my position stands as is. no usher’s should drive. period. there are support services, friends, family and cabs who can drive you anywhere. in ottawa, i’m affectionately known as the cab girl.

tactile love and make sacrifices, even if it means admitting the hard truth to yourself.

This entry was posted in Advocacy, Rants. Bookmark the permalink.

15 Responses to We Can Be Killing Machines

  1. Anna S says:

    Interesting blog. Thanks for sharing. A tip, it probably wouldbe better for the readers to see “a guy” or “a man” was jaywalkking. The color or race neednt apply to the context of the blog of yours. Just food for thought. SmiLe!

    Anna S

  2. It is VERY relevant to this blog since it was night time and the color was black… even more difficult for Ushers to see. But thanks for pointing it out.

  3. Dianrez says:

    Tactile has a very important point. People with Usher’s have varying levels of vision loss and in some it is slowly progressive so that it is not noticeable. These people have the responsibility to have their eyes checked every year or two and have the night vision and field vision checked each time.
    On the other hand, elderly people who are nearly legally blind from other causes are also allowed to drive if they pass vision tests much less demanding than those at the eye doctor’s. These people are more numerous and far more dangerous because they feel they have nothing wrong at all.
    Everybody who has any reason to question one’s vision is morally responsible to have it checked.

    By the way, it may not be PC to mention race, but Black people should remember they have a real disadvantage being seen at night, especially if they also wear dark clothing. The law is clear: wear white at night, no matter what race you are.

  4. i says:

    hi you have a valid concern about people with usher’s driving. not only with usher’s, some people should not drive, for example, certain elders usually with poor sight, people who are driving or taking drugs that affect their driving, so on… they can be killing machines too. that is my 2 cent.

  5. u r right about elderly people, people under the influence…
    this blog is entirely about usher’s but it can apply to similar situations.

  6. For a moment, I thought you were advocating letting deaf and ushers syndrome folks join the military! 🙂

    As a firefighter in a fairly suburban area, I haven’t had the misfortune of dealing with a pedestrian being struck at a high speed since this town has very few (jay)walkers in the first place. I know some guys who have had to literally shovel people’s remains from the roadway and then wash the road down.

    However, I’ve had to deal with the aftermath of car accidents where people are distracted by cell phones. I’ve seen fatal accidents that were ENTIRELY preventable if someone had taken the time to slow down, or put the cell phone away, or whatever else.

    Being deaf, I often chafe against the restrictions I have to deal with being in this business but I often place those restrictions on myself simply because this is a dangerous business, just as dangerous as driving on the roads today! Folks, if you THINK you should stop driving, you probably should!

  7. Melly says:

    Hi Christine,

    I have Usher type 2. I drove a car until just before I turned 36. I was
    pregnant at the time and made the decision to not renew my driver license. I
    never drove after dark after the age of 25, period. My father taught me how to
    drive defensively before I got my license at 16. He taught me how to drive at
    night too. He said that I was the best driver out of all my siblings because I
    used my eyes. For awhile it helped but not for too long. I wasn’t dx’d with
    Usher until after I had my first baby at the age of 25. So I drove for ten
    years more. I crashed into the rear bumper of a truck that had suddenly cut
    across four lanes of traffic right in front of me to make a left turn onto a
    side street. That jerk probably would have been smarter to ease over into the
    left lane before turning left, even if he had to drive a few extra blocks to do
    this. I was not at fault. That was it! I have to give my dad credit but I
    also knew when to call it quits. I asked myself that same question: what if I
    ever killed anyone while driving. The answer was easy. I simply did not renew
    my license. The funny thing was that other people who could see better than I
    were the ones hitting other people! We need to acknowledge that any number of
    conditions besides having Usher’s — people who drive under the influence of
    drugs or alcohol, or any number who are distracted by cell phone calls while
    they’re driving, or any number who suffer serious medical problems, even bad
    weather conditions — all of these have the potential to turn a pleasant
    outing into a deadly one.

    I would strongly advocate a set of guidelines that need to be used to
    determine when it’s no longer safe for someone with progressive Usher’s to drive.
    I’ve heard it said that people who lose their peripheral vision first are the
    least safest drivers and those with macular degeneration who still retain
    their peripheral vision while losing their central vision are safer drivers. Can
    you believe that?

    I can understand how shocked and angry you were when your friend nearly ran
    the black guy over. That would have been traumatizing, no doubt! It’s so hard
    when you’re young and yearning for freedom and independence! It’s hard for
    most young people to let go of that dream for independence — and there is no
    better symbol of independence than driving your own car. The next best thing
    is to own your own car but to have a designated driver willing to drive you
    wherever you need to go. I know that Rich here does that, and he pays for his
    own car insurance too, smile. We already have many alternatives to driving and
    it’s time we took advantage of those public transportation services that are


  8. Ade says:

    “…it’s unpredictable. only you (the usher’s) can know how well you see. no one

    Coco: Good for you, girl! Yeah, many of Usher folks may know of another Usher who still possesses car keys and drives. Unnervingly scary! I quoted you, see above, and would want to add that the Usher does NOT know how well they see, but the person who does know is their eye doctor. I’ll share something about

    I drove until I was forced to stop. I knew that I had cataracts building up and that driving in rain or dush into dark was not an option for me. How advanced my RP was, I didn’t know. I felt that as long as I could operate the family car
    and could see decent enough, I should keep driving simply because my family needed me to feed them (got to grocery store), clothe them (shopping for clothes), and anything else that goes on as being a mother and wife. I’ve had some close calls but they all ended up quite minor and really nothing to worry about. Then, one day our family were going to travel a 5 hours’ trip to visit my and my husband’s fathers…both were quite frail in health. While he was driving, my husband asked me if I could take over some driving because he was developing a headache.

    Okay, so I got in the driver’s seat and had our 10 years old son next to me in front. Driving along a two-way highway with narrow shoulders, I approached a slow moving vehicle. As I kept behind this slow guy, I kept looking for an opportunity to pass him. Finally, I felt it was clear to pass him. As I moved into the oncoming lane, I asked my son to verify that there was no vehicle approaching was far down the highway road. “Everything’s okay, Mom!” I began to accelerate to pass the slow moving vehicle on my right side and halfway passing him, my husband yelled, “GET BACK!! GET BEHIND HIM!!” I carefully pulled back the car and moved back behind the slow moving car and kept moving toward the narrow shoulder and stopped the car.

    I look at my husband and demanded what was wrong… He said, “You were driving
    that poor old man into the shoulder while passing him!” I looked down the road and realized what happened. Apparently, I DIDN’T move our car into the passing lane. I started to but as I kept my eyes on the lines, I apparently ended up on
    the driving lane….driving closer into the slow moving car and inch by inch making the old man avoid sideswiping us! Inch by inch, I was forcing him to drive into the shoulder and eventually end up losing control and rolling himself
    into the ditch!

    I gave out a huge sigh of thanks, gave my husband the car keys and said, “I’m not driving again unless I get an okay from the eye doctor! Time to make an appointment!!”

    A week later, I had a full exam and was told that I was more than legally blind!
    My right eye was 18 degrees and the left eye was 12 degrees. My doctor told me
    that I should not have been driving for several years already!!

    So, again, RP is very sneaky and it can fool everyone easily.


  9. Tom says:

    Big hello, Christine!!!

    HIGH FIVES to you for SPEAKING OUT against driving privileges for people
    with Usher Syndrome or RP no matter how wide or narrow their field
    visions are! That’s why my wonderful, honest eye specialist who
    diagnosed my Usher Syndrome at my age of 12 and half years on November
    14, 1959 SAID BIG NO NO after I asked him if I could take driving
    lessons at my age of 16 years in 1963 that disappointed me, but I HAVE
    COME FIRST, PERIOD!!!! Now I’m 60 years old and can still see central
    vision on daytime, but narrowing field vision. I RETIRED from bicycling
    at my age of 31 years and MISS it so much, but I HAVE TO SACRIFICE my
    LOVE of cycling, but I CAN WALK MILES with my white and red cane. I
    walked 2 and half miles this afternoon and I feel so GOOD!!!!

    Two of my Usher friends ALREADY GAVE UP driving, because of their MINOR
    accidents and they feel good for sacrifice for SAFETY!!!

    WHY NOT AADB contact Congress or Senate for the bill to BAN driving
    privileges in ALL 50 STATES for anyone with less than 120 to 150 degree
    field visions for SAFETY REASONS to avoid UNEXCUSABLE ACCIDENTS as VERY
    INTOLERABLE!!! Accidents are MURDER!!! Yes, there are more and more
    ROAD RAGES that make us very angry!!!!

    What would anyone with Usher’s IN DENIAL do if he or she be passed by

    Karen and I felt disgusted at the Louisiana DB retreat, when someone
    said that the Usher guy drove a schoolbus being owned by the Catholic
    Church, because schoolbus drivers MUST HAVE STRICT, exhaustive driving
    exams before getting the commerial driver’s licenses as NOT EASY!!!!!
    Right now, State of CT demands more screening for schoolbus drivers,
    because some of drivers hit children or elderly people due to lack of
    their experience plus some of them are former prisoners, ouch!!!

    Two cents for SAFETY CONSCIENCE!!!
    Tom Peters

  10. I am with Christine and Tom on people should stop driving once they find out
    they have RP/Usher.

    I am still haunted by a letter written to the RP List by Eileen (not a
    member but a member who was her friend did it for her) who ran over a 6
    years old neighbour’s daughter. The child died three days later, Eileen
    being charge, loosing her home/job/friends, etc. Eileen purposes of writing
    was in hope people with RP would think twice before starting driving, or if
    driving TO STOP DRIVING. Her friend email again to tell everyone that in
    the end Eileen had taken her life.

    So if anyone who has RP or Usher and is still driving PLEASE STOP DRIVING
    NOW!!! It WHAT YOU DO NOT SEE that can cause tragedy.

    I had kept those two emails in my folder to reread or to pass on to anyone
    who wishes to read it.

  11. Jennifer Keener says:

    I AGREE so much with this. I nearly got hit in 2005 in the parking garage at Gallaudet’s Hanson Plaza by one of the students with Ushers who was leaving the parking area and didn’t see me walking along. Thankfully I saw her first and leaped out of the way, but the incident left a STRONG negative impression of those who choose to drive with ushers. She never knew she almost hit me, and attempts on the part of mutual friends to persuade her to rethink driving with Ushers were met with a stone wall of denial. I wish doctors would immediately revoke the license of people diagnosed with any kind of severe and uncorrectable vision impairment since they cannot be trusted to do the right thing on their own persuasion. (Same goes with older people, but that’s another chat.) Driving is a PRIVILEGE, NOT A RIGHT! There are just too many details you HAVE to see to drive safely. Will it take the death of someone before this girl gives up her keys?

  12. Jennifer Keener says:

    Another thought: this makes me so angry! The denial…it just boggles my mind. SHAME on the DMVs for giving out licenses to these people. SHAME on the parents for not sucking it up and realizing Jack and Jill will not be able to drive. How do these people even get their licenses to begin with? Where is the outrage? The cries for limits to be placed on licensing or legislation to be passed? It’s like “Oh you shouldn’t do that…but I’m not going to help make sure you CAN’T do that.”
    *%*Stamps foot…gumbles…steam hissing*^&

  13. Shari says:

    I have Usher Syndrome Type 2 and I was driving until last summer. I knew it was time. It was just so hard to give up the independence. I am still struggling with that loss, but I know I am doing the right thing. And I know I am not alone and that there are many people who have had to give up driving for other reasons.

    This website has all the visual field and acuity requirements for licensed drivers in the USA. http://www.lowvisioncare.com/visionlaws.htm

    It’s shocking how much the requirements differ.

    Also, the DMV needs to watch for people who shouldn’t be driving. Someone I know once said that an old man came in to renew his driver’s license. He had a hard time with the testing that was done. The DMV worker encouraged him to try again. He was clearly not passable. But the DMV worker passed him. The old man slowly got out of the parking lot with his car. What do you think of that? Maybe something needs to change in the testing done at the DMV office? Better screening. I had no problem with the 3D test. (which road signs are closer?) Nothing wrong with the central vision. Just a thought.

    I like what you are doing here. 🙂

  14. Megan says:

    Great topic – it is always a hot topic on the RP email list. The question of when to quit driving is a tough one for people who are gradually losing their vision.

    One problem is that many of us with RP or Ushers do not find out about it until we have already been driving for some time. It depends on when the vision loss starts becoming noticeable. For some, the RP or Ushers is diagnosed during childhood or the teen years, but for others, it is not discovered until the person is in their twenties or thirties or even older. For the person who is older, they have probably already been driving for some time and are so dependent on driving to get to work, take their family places and so on. In this situation, the denial is even worse than ever. Of course, that does NOT make it ok to continue to drive!
    Another problem is that many of us with RP or Ushers have very good central vision for a long time after our peripheral vision gets pretty bad. This creates a huge sense of denial too, the feeling of having much better vision than they actually do have.

    Sometimes there can be a difference between men and women, when it comes to having trouble giving up driving. It may be sexist to say it, but a lot of young men grow up almost equating being able to drive a car with manhood. In some ways, taking a guy’s car away is almost akin to cutting his manhood off. He can no longer drive to pick up his dates or if he is married or has a girlfriend, he has to depend on the woman to drive him where he needs to go. On the other hand, for women, it can be very hard too, especially if they have a family and need to drive the kids places or drive aging parents or grandparents. For both sexes, the need to get to work is often a HUGE issue when it comes to giving up driving. For both sexes, it is crappy to be dependent on others to drive them places. When you can drive yourself, you have control over where and when you go. If you need someone else to drive you, you are dependent on them and they are now in a position to decide when and where you go places. I have heard of many relationships becoming very strained over this, where one person effectively has control over another person’s ability to go where and when they want.

    I drove a car and motorcycle until I was 22 years old. I didn’t know that I had Ushers before then. I started noticing my vision changing in different ways. I was having a harder time seeing at night for some reason, so I avoided going places when it was dark. I was starting to have trouble when facing into bright sunlight. When I was driving, cars were all of a sudden appearing alongside me and I wouldn’t see them at first and this really spooked me out. So, I went to see the doctor, got my eyes checked, had a series of different appointments. I quit driving before the doctor even told me I should because I knew something was wrong and I was scared to death of harming or killing someone.

    The bottom line is that we all have the responsibility to not endanger others. We do not have the right to put other people’s lives at risk, no matter how tough it is for us. Driving is a privilege, NOT a right. There are choices we can make to lessen the impact of not driving. We can live in areas with good transit systems. We can live in areas where most of the things we need are within walking distance, such as grocery stores, banks and so on. We can work out reciprocal arrangements with friends and family members, where we do something for them in exchange for them providing us with rides when we need it. Nothing is worth killing someone else due to our own denial and selfishness. So, if you have RP or Ushers or other condition that makes it unsafe for you to drive, PLEASE stop driving. There are other options – learn what those options are!

  15. donetta says:

    My Son is 6now and we are watching him for Ushers. He is adopted out of Russia and we dont want to loose the insurability so we are doing all the quartarly test but have not done the dna etc.
    I am so proud of you!
    In life independance a great responcibility.
    The loss of it can be tradgic.
    Inter-dependance is also a great gift. Many have no ability to recieve from others this is also a tradjady.
    We have gifts that are ours alone and even the ones like the ushers have a silver lining to them.
    Mrs J.

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