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.