You Don't Need That
THOUGHT PROVOKER 104
You Don't Need That
Constance visually scanned her ophthalmologist’s crowded waiting room looking for an open seat. “Hah, bet these people straight ahead are thinking I’m looking to sit by them. Sorry folks, it’s the lucky ones to the right or left that I see.” Spotting an opening off to the right, she headed that way, using her new cane to assure herself that the path between seated patients was clear. “Hah, I think I’m getting use to this thing; don’t have to be constantly looking down at my feet, can look around me for the larger things in life…Hah, what a profound statement that was! Well hmm, like the blindness peer support group gals say, ‘Gotta look at what you can see and face what you can’t’.”
Seated, Constance still held onto the shaft of her upright cane. “Humm,” she thought, “Best do something with this thing….” Using both hands, she fumbled with the unfamiliar actions of the folding cane, pulling apart its joints, the elastic center cord resisting, making her efforts to guide the sections awkward. “There…geesh! My extra eyeball has a mind of its own.”
Placing the now folded cane on her lap, fingers caressing the smooth metal tubing, Constance thought back on her experience with it. “Hah, one of those classic love-hate relationships. I hate what blindness has brought into my life, taken away…loss of ease of reading, loss of all my familiar ways in the performance of most daily tasks, and then there is independent travel.” Fingers tightened on the cane. “But…what I am discovering, this tool is going to change that.” Recalling earlier in the day, meeting her friends for lunch, descending the flight of steps down to the restaurant. “When my vision started to go, how frightening a trip up or down a flight of steps would be; not being able to see enough detail to always distinguish individual steps. Leaning over so far that if I wore a hat, it would have fallen off! I can’t believe I had actually thought about not going to church…steps to go up to the front door, steps to move from one event to another.
And oh, bright sunny days! Not always being able to see curbs. Then there is the identification the cane lends me while crossing busy streets and dealing with bus drivers. No more ‘What’s the matter lady, can’t you read!’ Then, going from daylight into the dimmer lighting in the interior of most buildings…the restaurant at lunch! Once in, going to our table, I walked slower, but it was my probing with the cane that saved me. Bumping into someone or something is SO embarrassing and, God, I don’t want to fall again!” Shivering with that thought, she started sorting through an untidy stack of magazines, picking up one with a glossy front cover, which appeared to frame a headshot. Holding it before her, angled to catch the light, looking more at the edge of the cover, she judged what she saw to be the face of a woman.
“Constance?” They called her name. Picking up the bundled tubing of her folding cane, she grasped the handle, allowing the rest of it to fall free. It snapped into straight rigidity. Shown into a small examination room, she seated herself to again wait, leaning her cane up against a small equipment table next to her.
It was only a minute and in came the doctor. To Constance he appeared to be looking down at a chart that he carried in his hand, then in looking up at her he froze. “What are you doing with that?” he said, his surprise being total. “Has something happened?”
“Nothing has changed since my last visit as far as I can tell.” Then touching her cane, Constance smiled. “I’m learning to use it.”
“With your condition you should never go totally blind and should always have travel vision. You don’t need that!”
RESPONSES
**1. This new Thought Provoker reminds me that I was once told I was not blind enough to learn Braille, that my remaining vision would cause me to cheat. Until recently, I didn't know how much that comment affected me. Now, however, I'm facing the same fear as I go through a guide dog application process. Are they going to tell me I'm not blind enough? So, thank-you for getting me to face my fear.
Regards, Ann Chiappetta Marriage & Family Therapy 914-393-6605
**2. This TP hit home for me. I am a "high partial" who has had cane training. Before my training in 2000, I thought you had to have virtually no vision in order
to use a white cane. My instructor had told me that this is a common misconception. Yet, I had reservations about using the cane and the social worker
at the center told me that it is good to have "just in case". (Sadly, nearly 6 years later, I am still hesitant to use it for fear of being treated as
if I was completely blind). My point is, this TP points to a great need for public education about those who use the white cane and that many of them actually
do have usable vision. They are using it "just in case".
Christine R. Hines
**3. This is pitiful! Absolutely PITIFUL!!!
This ophthalmologist is an outright QUACK! You'd think he should know better! He seems to think that a person isn't truly "blind" unless that means total,
pitch-black darkness. (I know that is possible, but it is relatively rare.) Any eye doctor should know that "legal" blindness could still detect light;
but things could be so blurry, even with corrective lenses, that a cane would be needed to avoid hazards. (Remember the characters from the last two Thought
Provokers? They sound like they fit that scenario. Rhoda Laval certainly does.)
When I went to the N F B Convention in New Hampshire, I met a man who used both corrective lenses AND a cane. Apparently, the lenses allowed him to see
well enough to get by on a flat, empty surface, but I knew he still needed the cane. I knew, because the man asked me about my eyesight. I told him I wear
ordinary glasses. He was facing me, but couldn't see them on me.
As for the woman, my first guess was that she had Retinitis Pigmentosa, and that her central vision was the first to go. I recall reading about a little
girl who had that very form. Her central vision faded, and she "looked" by turning her head and using peripheral. I guessed that's why Constance did that.
But, after reading the whole story, it sounds more like some kind of macular degeneration.
But that doctor's reaction was a bit chilling. Constance is not stupid! She KNOWS what she needs, and if she thinks she needs a cane to avoid accidents,
I wouldn't question her or prevent her. Ever since I began to research the topic of blindness, I've read a number of real-life testimonies just like this
story! Some person was suffering a gradual vision loss, and tried to learn Braille and/or cane travel. BUT! The "experts" gruffly (and, I might add, cruelly)
insisted they didn't "need" it. That's foolishness! How can I trust this quack to give a correct prognosis? How do WE know for CERTAIN that Constance won't
go totally blind? WE DON'T! Nor does SHE! But Constance prefers to err on the side of caution.
Good for her! Down with the doctor!
David Lafleche Thundermist04167@aol.com
.....FROM ME: In this TP, as I will in most of these short-short stories, I try to get the most mileage by not being specific on some points, like in the nature of this ladies eye condition. There are a few eye conditions that will produce this result and I wanted the reader to not get hung up in the particulars of just one reason for vision loss, but to zero in on the principle of what and why she and the doctor were doing what they were doing.
.....FROM ME: Here is David's response- Dear Mr. Newman:
I kind of figured you didn't want to "get into details" about specific causes of blindness in these stories. The reason I did is to show people that
the sighted are not all as ignorant as that "doctor," and that we do have some understanding of the science and the issues. This is absolutely necessary
in order to establish trust. (Conversely, would you trust that doctor? I wouldn't!)
The tough part is to convince people that we do have some understanding; yet at the same time, not come across as a "know-it-all," if you get my drift.
David Lafleche (If you like, please put this message directly below your response. Thank you.)
**4. Doctors know all about the conditions in the eye that cause blindness, but I suspect they know nothing of the actual effects and results. Perhaps the cane symbolized a certain level of failure on his part.
Peace & friendship, Nancy Lynn
**5. Man Oh Man! I use a cane and I can see some, but I’m just as blind as I am sighted. Long ago I made the hard and at that time I felt distasteful decision to start using a cane to augment my vision. And I might say, this was truly in opposition to my ophthalmologist’s advice and it was the best move I have ever made since I started going blind from macular degeneration. Yes, once I allowed my restricted vision to restrict my life. I use to not leave my home unless the lighting was perfect and the destination I was bound for was a known one. I could not trust that I would see all the drop offs and obstacles in my path, and so I needed to optimize my chances for seeing what I could around me and I only wanted to travel on paths I knew. And so I lived, tied to a string and afraid to venture into new territory. I wanted to avoid further twists of my ankle, falls off curbs, ventures into dimly lite buildings, and oh the frightening look of a flight of steps! Yes, I have gotten hurt since I began losing my sight from traveling with my reduced level of vision. Now I choose to use the cane, this new tool , my cane and I now seldom make a miss step. I can watch out for myself again.
Henry ByWater
**6. Wow, do I have comments on this one! I had more than one eye doctor act afraid of my cane when I was certainly blind enough to use it. It was as if my carrying it made me "look blind" to the eye doctor and he would seem to see me as one of his "failures." EW.
Several times in my life, others have told me that when I am walking with them, I don't need my cane. I've had to remind them whose cane it is and who makes decisions about the use of my cane--me!
Several times in my life, when I've been involved in pictures, some people have wanted the cane out of the picture. My former in-laws took my cane away before I could speak and the picture was snapped and then I had to explain about whose cane it was and who made decisions about it. This issue even came up at the wedding but my former spouse and I simply used them anyway and laid them down on the floor during the ceremony.
These kinds of situations don't seem to happen to me anymore. I think this is because I am older, more used to the cane myself, and people who know me know I'm going to protest when someone else tries to decide for me when I use my cane or not. Our canes are not anything to be ashamed of and they are not merely signifying that we are blind; our canes are useful tools of independence. Sometimes new cane-users still have problems with how they personally feel about their cane and that ambivalence gets projected onto those around the new cane-user so that sometimes they are afraid to assert themselves when others want the cane to be hidden.
I take my cane with me at all times and my husband carries a support cane most of the time and that is that, nowadays.
**7. Smart lady! she no longer wishes to gamble with her life. She appeared to be an older person and we know how as the human body ages it weakens and it is wise to avoid situations where you may break a bone. the Doctor in this story did not appear to know his patient well. Doctors need to take the time to talk to their patients and learn how they feel, how they function and more. The best health care comes when the whole patient is considered.
Sam Park USA
**8. Though I have one of those folding canes I cannot use it. I travel in a wheelchair in fact I must be in a wheelchair unless I'm sleeping or bathing. It sounds like a cane is a tool for most blind persons just like my chairs are tools for me! I would say the doctor was wrong. The cane gave her confidence in her ability to get around. Wouldn't it be the blind persons choice not the doctors or am I way off base here?
Diane Victoria B.C.
**9. My response to the "Constance" article. Question: Should we "blame" ;docs for not knowing very much about how limited vision affects people and their abilities? I've found my doc only knows about what he sees in my eyes.
That said, I think it's time to give docs the education they sorely lack.
Constance and all the other Constances need to do this. I've done it in anger and frustration when my doc said it was ok to drive after I was legally blind. He took NO responsibility for informing patients of the physical/legal consequences. Now at least he knows there are consequences.
In the last analysis, if the visually impaired don't inform their docs, who will?
Anita
**10. For those of you who do not know my name is Jannel Morris and I am from St. Joseph. I respond occasionally to the Thought Provokers.
My first reaction when I read this was unhappiness with the doctor. First the doctor was concerned, but then became judgmental. Doctors and others who
work with people are ethically bound not to judge or force their beliefs on those they work with.
My second reaction is this. Doctors are wonderful people and have done a lot for the world and for people. Doctors save people, give us meds to make us
better, tell us things that we do not want to hear about ourselves or loved ones, doctors answer questions that no one else can answer, and so much more.
There is a but to this and here it is. Doctors and especially ophthalmologist are not in our bodies. Doctors cannot see what we see, feel, hear, taste,
smell or don't see, feel, hear, taste, and/or smell on a minute by minute basis. Therefore they can only assume and use words such as should or should
not. Just because this doctor feels that Constance should not need a cane, should not go totally blind, and should have enough vision for travel does
not prove to be a hundred percent proof/truth that the reverse will not happen.
We can only hope that in this and the many other cases out there the visually impaired/blind person can be an advocate for themselves and others and educate
the doctor.
Jannel Morris, BSWSt. Joseph, MO.
**11. Well, what an interesting doctor. If that lady is happy with her cane, she shouldn't have to go around struggling without one. Maybe she does have travel vision, but she has a hard time with certain situations. He sounds like the kind of person who, if he had a hearing problem, he wouldn't get a hearing aid until all his hearing was gone. That's too bad for his family and him too.
Leslie Miller
**12. This story reminds me of a similar situation that happened to me many years ago.
I was living in Des Moines Iowa, and I went in to the ophthalmologist for a regular exam, as well as a field exam, since I have Retinitis Pigmantosa.
I was seated in the room with the chair that the eye doctor had people sit in for a field exam, which resembled a dentist's chair, by the eye doctor's assistant I put my cane on the floor, and it rolled under the large base of the chair and the doctor did not see it during the exam.
After the exam, he turned on the room light, and indicated that the exam was over, and I got my cane out from under the chair.
The doctor said to me,
"You don't really think you need that do you?"
and I said something like:
"I wouldn't be using it if I didn't"
This was an eye opener to me, as I then realized, at a young age, that eye doctors may know about the eyes, they know nothing about Blindness.
But what continues to bother me, is how they in general, as well as other types of doctors, seem to think they know what a Blind person should or shouldn't be able to do for themselves, and unfortunately have a great deal of influence on our independence, until we are fortunate enough to be educated about Blindness.
Glenn Ervin
**13. I've found that the medical profession is trained to handle acute illness or trauma they can cure. Diseases with no cure make them feel impotent, and sometimes they take it out on their patients. Also, chronic conditions, in their eyes, don't exist. They don't want to be bothered with accommodations for a disability when dealing with another issue.
More than once, when I came to an ophthalmologist's office for a visit, I was taken ahead of other patients so they wouldn't have to look at a blind person in the waiting room. I suppose their worst fear is they'd end up like me.
Most of the doctors I went to probably should have recommended a cane. They didn't because they'd never seen one, and wouldn't know what to do with it if they did.
There's got to be a better way. Educating medical students is probably it, if they'd even listen to us.
Abby Vincent ACB-L listserv
**14. I have also had a couple of comical incidences while in my doctors office.
One of them was when I had gone in to my MD for a yearly exam. It had always been my doctors nature to do a very thorough exam even though he knew that I also saw specialists on a regular basis for things like allergies and eye care. Without thinking, he turned the lights down and shone his light in my eyes to get a look at them. First he looked at the left and then the right. Then back to the left, and back to the right. After repeating this quite a few times, (I was having a super hard time not bursting out in
laughter) he turned the lights back up and said to me - "I can't seem to get any reaction out of your left eye." His voice was very puzzled and concerned. I started to grin and I told him - "No probably not, it's a prosthetic eye."
Another time when I was in the waiting room at my doctors office (the same MD), my daughter had driven me there and sat next to me in the waiting room.
Across the room from us were a couple of elderly women who were talking to each other out loud (very loud) about all the people in the waiting room. I had folded up my cane and put it under my chair next to my purse. My daughter and I were listening to the two women talking and I realized then that they had started talking about me. They said, "Wow, she's kind of young to be blind." "How do you know she's blind?" "Look there, she has one of those blind sticks." Then I realized that I needed to turn off my cell phone before I was called back and I reached down and pulled it out of the pocket I keep it in inside my purse. The two were pretty quiet until I had turned it off and was putting it back in my purse. They started again, "Did you see that? She must be able to see some. She knew right where those buttons were on that phone..." I, this time also, was having a hard time keeping a straight face. Then my name was called and I grabbed up my cane, opened it up and proceeded to walk into a chair that was not usually there. Guess I showed them, huh?
I find that it is usually better for me and others to have a sense of humor about things like this. Of course, I am human and I can be insulted just like anyone else...
Julie ACB-L listserv
**15. I'm surprised the doctor didn't rip the cane out of her hand. I would think Constance knows very well what she needs, and if a cane is helpful to her, the
doctor should applaud her being able to face the reality of her situation. I wonder how many more doctors there are out there with such a proprietary
attitude. Quite a lot, I should think.
Carolyn Gold Clearwater, FL
**16. Interesting: as a person born totally blind and active in the disability movement, I always associated difficulty with stairs with wheelchair users, not with us.
Karen in Berkeley
**17. As far as I'm concerned, if Constance feels more assured about her being able to travel with the use of the cane, then she should, by all means, continue to travel with that cane. Sure, the ophthalmologist may be right that her vision won't get any worse or any better than it presently is, but the doctor is not the one in her body; Constance is. She is the one who has to live in her body. She's the one who has to deal with the day-to-day good and bad things that happen regardless of whether it is blindness-related or not. The doctor, on the other hand, gets to go on examining other patients, drive himself to and from work, and do all the other things he wants or needs to do that he can do by sight. It is Constance, herself, who is experiencing first-hand what it means to be blind even though she may have some vision, not the doctor.
What I conclude from reading the narrative and my analysis is that the doctor either doesn't want to admit that Constance really needs to travel with a cane, and/or the doctor is ashamed of blindness and, thus, doesn't want her to become dependent on such nonvisual techniques as cane travel, braille reading, etc. To be using nonvisual techniques is to show that you're weaker because you're blind, and the doctor wants to avoid this at all cost. Though not related to blindness, I've had relatives tell me that the medical things I was suffering from wasn't as bad as I was perceiving it to be. They either didn't want to admit that there was something wrong, or they just didn't understand all that I was going through. I would like to believe the latter, but I think that it was the former. I think that in the doctor's case with Constance, shame of blindness and not wanting to admit that Constance might actually need to use nonvisual techniques are the problems.
Linda MI
**18. That was a terrific posting. Not wanting to generalize ... there are some great vision MD's out there (and I have several) ...
but sadly, this still is the state of mind of some. That last part really hits home and provokes a lot of introspection.
Kind regards, Steve in t.O. RPlist
**19. Thanks for the great post.
This brings back memories when I was diagnosed with RP at the age of 28. Of course the Doctor thought I had RP but I had to go through all the tests. I was waiting on pins and needles waiting for the Doctor to get back to me.
Finally he calls me and I go in for the appointment and he told me I had RP. I asked a few questions and he was short and to the point and finally he says well you are 28 you've seen enough of the world!
I no longer drive but I still go when and where I want to go!
Well now I'm 42 and I am still seeing the world so Doctor please get a different profession! LOL!
Thanks for the great post Robert.
Jim Carpenter RPlist
**20. I read Jim's initial post to this thread, and if I read Ade's reply correctly, I detected the same kind of thrill that I got when I read it. I always feel hopeful when I hear that one of "our kind" is out and about in the world, living a full and rich life without holding him/herself back. I tend to hold myself back.
So when Ade asked Jim how he does it, I was eager to hear his answer. I must admit my hope was a bit deflated when I heard that he does these things assisted by friends and his wife.
Unless I be misinterpreted, I must say that I am not speaking out to rag on Jim. I merely want to share my thoughts and feelings with you all. I don't know how many of us are single, live alone, not dating, and have no family in the area. But that's my situation, and I don't feel sorry for myself. Well, most of the time I don't.
As I said, when I read Jim's answer I felt deflated. I felt this same kind of deflation years ago when I lived in Memphis. The company I worked for was planning to move to the exurbs, far beyond the reaches of the Memphis public transit system. I called one organization in Memphis to try to find transportation that would allow me to keep my job and to live where I choose.
The fellow that I talked to at that organization was blind and helpful at first. But I guess I asked too many questions or used a tone that annoyed him. I remember feeling desperate at the time. When he gave me the name of another agency that I could call, his answer came wrapped in one of those "well, if I can do it, buddy, you can too" attitudes.
So finally I just asked, "How do you get to work?" This seemed to move him out of the Annoyed column and into the Angry column. He paused for what seemed like a long time, and then said, "My wife drops me off."
I thanked him and hung up. Shortly thereafter, and before the company's move to the exurbs, I accepted a job and moved here in Urbana, Illinois, where the public transit system is very good. (And my employer picks up the tab.) But other than getting around town, I don't travel nearly as often and as far as I would like.
Regards, HerbHerbert Morgan RPlist
**21. How fortunate for Jim that he has some sight, as well as friends and family to help him get around. But how unfortunate for those who have only themselves and their own resourcefulness to fall back on, especially those who lives in areas where services are either sparse or not at all available.
You can't always depend on what doctors tell you, where RP is concerned. So many have been told their central vision will never be completely gone. Others are told they'll be total in a smattering of years. Neither prognosis can be entirely trusted.
But Jim's point is well taken: live your life to the best of your ability.
Carolyn Gold RPlist Clearwater, FL
**22. This reminds me of how professionals can sometimes be to those of us with visual impairments. I'm sure you all have had similar experiences.
I went to a gynecological appointment a while back. A nurse led me to the office. I had my cane and followed her to the office and even stepped on the scale and table on my own. All the preliminaries were in order and she was about to exit and inform the doctor I was ready. Before leaving, she asked, "do you need help undressing?" I really hope my face didn't reveal my surprise and I was able to keep myself from saying something sarcastic.
The mother of a friend of mine with RP went in to confirm a pregnancy (she was pregnant with my friend's brother). The doctor entered the room and said "congratulations, you're pregnant...now, when would you like to schedule your abortion?". She changed doctors.
Another time, I went to the dentist. I don't think he had ever worked with a VI person before. When it was time to spit in the cup, he asked, very seriously, "can you spit in the cup". I know what he meant, but it still sounded funny.
Sometimes it's amazing how uneducated educated professionals can be...
Amy ACB-L
**23. This issue of unsolicited advice, repeating of basic information (I guess to make sure we understand) and ridiculous questions like, "do you need help getting undressed?" is so much a part of everyday life, I almost forget to notice. But sometimes, after the thirteenth or seventieth such occurrence within a given day, my patience runs out, and I respond. I don't think that's unreasonable or surprising; after all, we're humans too. I will admit that in these moments, I'm never really thinking about educating the person as to my capabilities. Usually, by this time, I'm just tired of the stupidity, and I think up something that I find witty to set the record straight. (Like others, I often think of these retorts too late to use them, but sometimes, I think of them right then and there, and that, too, can be a curse.)
Ron Brooks ACB-L
**24. This ophthalmologist is absolutely stupid! How does he even know at all that the individual is not going to become totally blind? He doesn't! The
medical knowledge he should have gained about the eye would testify to that!
His own common sense, what common sense he allegedly has, should tell him that not only the totally blind need to use the white cane to travel independently,
but that also, those people whose visual acuity is minimal. Why should they run into items and people, or stumble on or fall down steps?
I am sure that not all ophthalmologists are like that one. In a future Provoker, or if a past Provoker would reveal it, would you please tell us
if some ophthalmologists are more understanding? Also, if recipients wish to email me with such information, that would be appreciated.
Jeff Frye Overland Park, Kansas
**25. I am the mom of 2 blind adult children. This article is chillingly true. Lisa, my daughter, needed a report from her ophthalmologist to take
to court regarding her condition, and despite having been going to this doctor for more than 6 years, the report sounded like someone he did not know.
Lisa is a professional in the medical field, holding down a very important job, equal to the ophthalmologist’s job, and he ends up his letter saying “people
with her disability will have a hard time finding gainful employment”. He may have been looking into her eyes for the past number of years, but he hasn’t
seen the person. There are enough obstacles to meet without having the dispiriting attitude of your ophthalmologist. Their training is strongly lacking
in the most important issues. Unfortunately, this attitude is shared by most ophthalmologists we’ve seen and we’ve seen many. This forum is great for
sharing information. Thanks for hosting it.
Sharon MacKenzie
**26. Whatever works for you and makes your life less stressful and easier is what you need. For some its a cane for verification, for timid types like me its my guide dog's presence at my left side. Sure my hearing is excellent and my cane skills are above average, but I get exhausted going out to places I haven't been before because what makes me a good cane traveler is my total concentration on every little detail, sound, scent, change in texture beneath my feet, shift in air current, warmth of sun and shadow. So, although I can go anywhere I find I don't travel on my own with my cane unless it is absolutely necessary to do so. But with my dog, I can and do just take a walk for enjoyment, to think, to relieve stress. So, I would never try to second guess anyone's choices. There is no right way to be blind, just what works for the individual person. As long as that person is out living and enjoying their life, than I say more power to them whatever tools they choose to use.
DeAnna Quietwater Noriega Colorado.
**27. What a bunch of B.S. from that doctor! His license should be revoked! I struggled for years with the loss of peripheral vision and did not use a cane. After what looks like one big scar on each of my shins from constant accidents, a rehab officer who trained me on a CTV ridiculed me for not using a cane, and he convinced me. What a difference! That doctor should be questioned about his motives, and in my opinion, he should be reported to the licensing authority.
Jim Theall, Longmont, Colorado
**28. Constance: "Doctor, how can you tell me what I need and what I don't need?"
Doctor: "Well, your vision is good enough for you to walk without any aid.” Constance: "I'm afraid you are wrong. The other day I fell down steps, because I could not see them. In the waiting room I could find an empty seat without having to look down all the time. My cane enabled me to find an empty seat without assistance. So, Doc', I certainly need this."
Janie Fourie
**29. Hmm, that was among the things that my teachers at the residential school in South Dakota would tell me, that I didn't need to use a cane or to learn Braille.
It wasn't until I became an adult that I felt I could begin to use a cane because I was discouraged by my parents, my friends, and O&M and teaching professionals.
By then, I felt that using a cane would cramp my style anyway. I didn’t want to look like a “dork”, so I was very happy that I didn’t HAVE to use one.
I got my first cane when I was working for the U.S. Forest Service in Jackson, Wyoming. By then, I started to realize what the benefits of using a cane
were. However, I was still struggling with my hang-up about how I’d look using one, and what I would look like to others. My counselor with the Wyoming
Services for the Visually Handicapped and I never did discuss it, so it was no big deal to me until I started to realize how much I was falling off sidewalks.
I started to realize how badly I needed proper cane travel techniques when I realized just how much I avoided stairs. I thought that wearing sunglasses
alone would help me, but I still couldn’t see whether or not there were stairs unless someone told me. I would grope my way down but still wouldn’t use
that cane I was given. It was too heavy and bulky though it was a folding cane. Then I went through the training center in Lincoln, Nebraska last year
and was taught to navigate stairs without having to hold on to the hand rails. I have a fiberglass cane and I couldn’t imagine going anywhere without
it.
Bonnie Ainsworth Nebraska USA
**30. That doctor should go back to school and study vision rehabilitation. This type of remark is just what keeps some blind people, especially the newly blind from accepting the alternative techniques we all know works. It really is important to look at the whole patient.
Angela Farmer, Dothan Alabama, USA.
**31. This sounds peculiar to me since having been a sighted person, then losing my sight and (what I thought at the time) my independence in my mid-20's. I'd have to say my experience was exactly opposite. My friends, and as well as professionals, had to convince me to use a cane, because I guess in a subconscious way, it was my way of denying that a problem existed, and fearing losing control of my total independence of coming and going whenever I pleased to wherever I wanted. I can't think of a single moment someone saying to me, put that thing (cane) away, you don't need it.
My sight loss was more overnight, than gradually over time, due to a rejected corneal transplant. All the best. -
Kim Lookingbill ACB-L list
**32. Sometimes, I feel that some of those who provide us medical assistance and care, those who counsel us (of course, not all) and care for us, really don't understand the issues and significance of vision loss (on a mobility, social or psychological level) that is needed. All they really know, unless they are personally experiencing the disability, is what they have read or been taught by others.
This TP also makes me think of the rush to provide care to all that can be scheduled in a day and the money aspect of the medical BUSINESS. If the doctor would ask a few more questions and attempt to understand the significance of the cane, not only would he be provided with individual knowledge of one patient, but could have a line of thought opened up regarding all of his patients with vision loss.
Most providers don't get it and are waiting for that patient/client who finally has enough of patronizing and being stereotyped to "explain the perspectives of vision loss from their point of knowledge/view!"
My experience, so far, has been the opposite. My retinologist didn't say two words! I had to set an ultimatum. Either, you talk to me and explain everything we are doing here, or I just quit being part of the treatment process! HE TALKED TO ME, and has ever since! He's a brilliant man, but social he isn't!
The ACB-L listserv is discussing "blind skills" and participating in "every day issues and events", now. Maybe this is something that should be discussed ( about assertiveness).
Thanks for the thought provoker. It does!
Max in SC ACB-L list
**33. I have a friend who is totally blind, has poor mobility skills, and refuses to use a cane because he says it makes him look blind. Go figure!
Andy Baracco ACB-L list
**34. As always, sticking my neck out: I'm going to tick off every cane-user out there, but I have problems with the symbolism, social stigma and efficiency of a cane. Having said that, I also recognize that it is the most efficient, easy-to-use and easiest mobility tool for blind people in existence. When my dog can't go places, I use a cane and just swallow my pride. However, I think Constance has it right on and her doctor is a jerk. I'd eventually urge her to get a dog and keep it well-trained and disciplined. The problem here is "identifying,"
with blindness and I think Constance has taken a great step toward accepting rather than denying. Having been born blind, I'm at the extreme opposite end of the spectrum and can only surmised, based on how my gradual hearing loss has sometimes made me feel, what she must be going through.
Mark BurningHawk BlindLaw listserv
**35. Well, I will stick mine out too. There is more than one perspective to a thing. You think a cane is stigmitizing, I think a dog guide is too. It is like having a two or three year old around all the time, and how can we expect people to treat us as equals if they think we have to be led around by the equivalent of a two or three year old. People think the dog does more then he/she actually does, that is part of the damage. At some level they regard you as so helpless that a dumb animal has to lead you around.
Dave Andrews BlindLaw listserv
**36. wow! that's a really interesting viewpoint, Dave. First, I would point out that a dog, when properly trained and disciplined, is not at all like a child, but more like a very well-honed tool. When you show a calm control over your guide dog, you exhibit a degree of centeredness and efficiency that most people, I have found, envy. When you demonstrate a loving and deeply empathic bond with your well-trained guide dog, you show more humanity, give more of a sense of being "in touch," and overall command more respect. I think that anyone who correctly handles their dog is not giving the impression that they are so helpless as to be led around by a dumb animal, but rather that they are so confident that they know enough about their world that they can instruct the animal to be a smart tool.
Mark BurningHawk BlindLaw listserv
**37. This is not a situation I faced because I was always totally blind. Nevertheless, many do. Two thoughts come to mind. First. the doctor's comment is extremely damaging to the fragile confidence and perhaps acceptance of blindness that Constance is developing. I imagine that some people cannot overcome statements like that especially when they come from trusted medical professionals. My second thought is that this kind of statement explains much about why the NFB would limit the doctor's role in blindness. Doctors may do a good job in treatment to limit or reverse blindness, and such treatments likely improve over time with medical advances. However, eye doctors know very little about blindness rehabilitation. Therefore, why would a doctor comment about whether she has sufficient travel vision? His opinion is merely speculative and he made the statement without conversing with Constance at all.
This list does not generally serve as a forum for the canes and dogs debate. I will nevertheless risk joining it by saying that both Mark and Dave are right. With a dog, there is a feeling of travel ease. It seems that you move faster through the environment, and you certain move though the environment with less contact of things around you than with a cane. On the other hand, a cane requires little though when preparing for trips, causes little emotional trauma when the time comes to get a new one, and will never get sick embarrassing its user. I have had both a dog and cane, and think that both can work very well. I would urge folks to read the story "Old Nate" written by Dr. Schroeder in the Braille Monitor. Though I do not think the law list is usually the best place to have the discussion, it is one that I think will remain in our community for a long time, so we will all face it on occasion.
Jim McCarthy BlindLaw listserv
**38. Jim, I totally agree with you about the role of the doctor in dealing with blindness. It has been my experience that ophthamologists often have very negative views about blindness. I think it's because doctors see it as a failure if they can't save sight, just as lawyers see it as a failure if they lose a case.
I agree that there are advantages and disadvantages to both ways of traveling-with a dog or a cane. I think we mostly choose what works best for each of us, but we all choose independence.
Kathy hagen BlindLaw listserv
**39. Well sadly, just because people are well educated doesn't mean they are going to be more sensitive. And in fact, I noticed that all throughout college, my friends were primarily not people in my field--mental health, but were business and computer folks. And you would think I would have picked up a little something from them about both subjects but guess we were not discussing classes much.
Generally, I do have a sense of humor and I try real hard to use it. But often the thing that happens is that because I'm not comfortable being at doctor's offices, especially when I know needles will be involved because of my fear of them, they pick up on that and then are uncomfortable because of my blindness and everyone is uncomfortable. Yesterday's removal of the lymphoma on my shoulder was a great example: it was a real uncomfortable experience all around. And the fact that the doctor was rushed and I don't think felt particularly well did not help at all. But he is good and for those issues, I will return only because he is good--and hopefully will not have any further issues.
But in general, my sense of humor works well.
I have only been told once to cross a street when it was not safe and I really still would like to believe it was a mistake on the part of the person who gave out the information but who knows!
Jessie Email: thedogmom@verizon.net
**40. I am a little late in replying to this but I wanted to comment because it sounds exactly like me. I fell in love with my cane when I got it and started to learn how to use it.
My doctor experience was also a little familiar. When I told the eye doctor that I needed help he just said that I wasn't legally blind and they wouldn't do anything for me. Luckily I had a friend that was legally blind and she was able to get me in touch with the department for the blind and they helped me even though the doctor said they wouldn't. Also, after moving to a different state and getting a new doctor, he was finally able to diagnosis me with RP but continues to insist that I may never lose all of my sight. Thankfully, he has not commented on my using a cane and has been very helpful with Voc Rehab . I wish there was a way to get doctors to stop thinking that blindness is the end of the world 98% of people with RP go completely blind or at best have light perception.
Cindy S. nobe-l listserv
**41. I am writing in response to the short story, You Don’t Need That, (January 24, 2006) NO one should decide FOR some one, whether he or she “needs that”
or not. Too often, the sighted public, and even so many blind persons, decide what is best FOR some one, who is blind or disabled. This doctor was really
afraid of his own vulnerability. Disabled persons remind those who are not yet disabled, of their own vulnerability. And blind people too, must stop judging
other blind people. It is not a “sighted world,” as so many blind people believe it is, but a temporarily able-bodied world. Even if this Constance
has “enough travel vision,” the decision is hers. Maybe this cane will make her feel more secure. It seems to. For now, she doesn’t have to “look
down at my feet all the time.”
Sincerely, Lucia Marett
**42. I just happened onto this list while browsing for something else. The Thought Provokers are wonderful, especially the responses. I sent a link to my co-worker who is blind. I've only read a little, but the stories sound similar to situations a have encountered as a wheelchair user. I had a "flashback" to when I must have been 12 years old or so. I was in Shriners' Hospital for some corrective orthopedic surgery. A couple of the other female patients and I were talking and dreaming up pie-in-the-sky plans to travel to the "boys' side of the hospital." A nurse, who herself wore a leg brace, told me I should never date because I would marry and have children and they would be "crippled," too. He must have known via my medical chart that I had impairments as a result polio. How could a nurse think that was genetic? But why would she say it if she didn't believe it? Very weird.
Anyway, This website has a lot of value! Think I'll mail it to the field services manager of our state Commission for the Blind. Maybe it will enlighten her.
Barbara Fields Oregon USA
**43. Looking back over the years, I feel that my having had residual vision was a very ambiguous thing. It was cool to watch fireworks with, and I could travel
without a cane to some degree if I wanted to, but it didn’t serve me very well otherwise. And while I started to use a cane when I was nine, about five
years before I lost the sight I had in my left eye, my ambivalence about my blindness caused me to rebel against having to use it for a time. And there
was that part of me that wanted to be just like any other kid – fully sighted. Let’s face it" Very few of us want to be different when we’re kids, especially
in late childhood or early adolescence.
So I think that one of the best things to happen to me was losing the remaining vision and going totally blind. It removed all the ambiguities: You want
to be independent? You want to travel by yourself? You want to be a fully functioning human being, absent the fact that you can’t see the world around
you? Use a cane, shithead! And besides, there’s nothing wrong with being blind. Want leukemia instead?
What’s really galling, though, is when someone who should really know better tells me I shouldn’t use a cane. This happened to me when I was nineteen and
attending a community college. One of my science profs told me he knew someone at University who didn’t use a cane because he was familiar with the campus.
His rationale was that I would set myself apart because it made me look blind. Well, I am, ain’t I?–
John D. Coveleski, Minneapolis, MN (johncoveleski@mindspring.com)
**44. As I'm sure it does for many of us with residual vision this TP really hit home to me for many reasons. One major reason is with my family. All of them saw me grow up without a cane. It was only until I graduated from High School that I started using one regularly, and that was because it was my choice then. Most of my family don't really understand why I NEED that can. This TP expressed those reasons so well that I decided to forward it to all of them. I want to thank Robert and the author for giving me a way to convey that message to them in a way that won't widen the gap that was created the last time I chose to use my cane in a VERY public situation.
After all, I AM blind, and I am PROUD OF IT!!!!!
Brent Heyen Lincoln, NE
**45. TP102 and its responses brought several thoughts to mind. First, a little humorously, when I was in my early twenties, I had just relocated to Florida and of course, to get help from our state agency from the blind, they had to prove I was REALLY blind--(I have ROP). So they sent me from Orlando to Miami to this special hospital for all these complex heavy diagnostic tests.
They even did an ultrasound of my eyes. When they were done, the doctors came in and in a very somber voice, sort of like announcing that I had a terminal disease, they told me I was totally blind and that there was nothing they could to for me. The way it was delivered, it took all I could do not to laugh, but I calmly explained that I understood and was in agreement with their assessment.
Next, I have two daughters, both born with congenital cataracts. Down through the years, all opticians and ophthalmologists act like without correction, they can't see anything but blurriness, but they really can function okay without their glasses at least as far as getting around and the change in their vision from non-corrected to corrected is not as huge as the doctors seem to think.
I also appreciate particularly the view of Jim McCarthy on the guide dog versus cane issue. I to have used both and after several years without a dog, I am currently working with my third guide dog and for me, despite all the responsibility, I much prefer working with a guide dog and appreciate those who say both the cane and the guide dog are valid choices. I have never had anyone tell me or treat me as if I were being led around by a dumb animal.
Sherri from Orlando
**46. This "Thought Provoker" reminds me of an experience that I had back in 2000.
I had been petitioning the State of Oklahoma for assistance in obtaining computer equipment which would allow me to get an online education and gain access to electronic information.
I was instructed to go to an eye specialist. Now I want you to understand that I have a card from "Sooner Care" which is a department of Human Services which provides insurance for disabled persons receiving assistance from the State and federal governments. When I went to the eye specialist, I had to show my insurance card. It seems odd that I have a "Sooner Care" card which has a B at the beginning of my case number. The B stands for "blind."
I had to get an eye specialist report but to do this, I had to provide the receptionist at the doctor's office with a copy of this card. I thought this was ridiculous and so did the eye specialist.
The first question he asked me when he entered the room was: "So, who can't tell that you're blind?"
He knew right off that I am blind. He didn't try to talk me into doing things I didn't want to do. He is a good eye specialist.
Rex Henry Howard