Dealing with feelings and responding to comments from family, friends, and strangers can be a very sensitive topic. Following are some postings from the ROP list on this topic. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: July 30, 1998
From: Jeanie Flowers
Rachel first got glasses when she was 6 months old. We would go out to the grocery store or whatever, and she would be there in her little carrier wearing her cute little pink-framed glasses. Invariably, some supposedly well-meaning person would look at this tiny thing ("Peanut" is what her retina specialist called her - at 6 months she was a still as small as a newborn), see the glasses, and with great indignation blurt out some nonsense like, "Those eye doctors have no business making a baby wear glasses! Who do they think they are? How can they possibly know she needs glasses?" and other such blather. Then, of course, we would feel compelled to tell them Rachel's life story in an effort to make them understand the situation. (Like the fact that those crazy eye doctors knew Rachel needed glasses because she'd already had several eye surgeries and she had no lenses in her eyes!) Oh, don't get me started again!!
Date: January 14, 2000
From: Amy
Hi, my daughter Megan is 7 years old. She has a detached retina in her right eye. She has had 5 surgeries to try to correct it, her last surgery worked for a year. But last spring they told my husband and I it detached. We were broken hearted. They said it detached since her eye was growing. We love our daughter more than anything. But when she takes her glasses off to go to bed, it just breaks my heart to see her one eye smaller than the other. I know I should be thankful for having a healthy little girl considering she was born at 24 weeks, weighing only 1 pound 4.6 ounces, but it still hurts. Does anybody have any words of wisdom on dealing with my feelings. Thanks for any information. Amy (from Maryland)
Date: January 14, 2000
From: Sarah J. Blake
Hi, Amy.
I don't know if this helps much, but often these feelings are because of inaccurate understanding of the experience of blindness/visual impairment. Try making notes about Megan during the day. What did she enjoy doing that day? What is she good at? How does she seem to feel about herself? I can't say that visual impairment will never bother her, but it's not an all-consuming thing. To be honest, it will probably bother her most when other people call attention to it in a negative manner. I never knew that my eyes were small until someone made a rude comment about it.
Date: January 14, 2000
From: Kim Joyner
Hi All!
I've been off for a while, but its nice to see everyone else is still here. I have a comment about the physical appearance of Megan's eye size. When my daughter was around 3 years old and began having many many questions asked of her eyes, I tried to have a little talk with her to help her to understand that most sighted people typically have larger eyes than she had, and this was why people asked. After re-discussing her prematurity, along with being sick, and the multiple surgeries that she endured, I explained that the doctor had to make them small so that she could see. I also took a mirror and had her to look and my eyes and her eyes - wanting for her to see the difference between my eyes and hers. After taking a minute to examine both of our eyes, I asked her if she could tell me about her eyes. Then...from the mouths of babes, she told me "Oh yes Mommy, my eyes are beautiful!" She said this with such delight that I hugged her and realized that maybe her eyes weren't typical, but they were no less beautiful! I have learned many lessons from my daughter....and if she is really patient with me, maybe I will learn a few more.
Date: January 14, 2000
From: Betty
Dear Amy,
My daughter was born at 26 weeks, just under two pounds. One eye is better than the other, and the better eye is slightly bigger. Every day I am aware of two feelings: I am so grateful for her survival, and so anxious about her future. It helps to just be grateful that she is sighted. She is also cognitively intact, and goes to a public school, in a regular class. It also helps to realize that we all have imperfections, and this is no longer a situation that involves a threat to survival. I have just begun to speak about all of this, and it is good to speak with each other. I have positive days filled with triumph, and other days of anxious worry. Mostly, I have been busy working and raising two children, and having friendships that are close and honest. Modern medicine seems to have solutions for a lot of problems, including cosmetic. Glasses give the impression that the eyes are the same size. None of this is fair, but this is the hand that we have been dealt. Their survival is really quite a triumph, and I am committed to making sure that she is strong enough to not let anyone else define her. Find your daughter's strengths and passions, and enjoy them with her. My daughter plays piano and harp, and loves to sing. She has brought music to my life. Hope that this helps.
Betty, New York State
Date: January 17, 2000
From: Missy
Hi all, Missy with another question again. I love to take Daniel out with me everywhere I go. Although now that he is getting bigger it is easy to tell that he is blind. Hence, I get more statements like, "Oh, you shouldn't be out with your baby - he's so sleepy." I don't have a problem looking them in the eye and saying, no he's not sleepy, he's blind. Now here is the tough part. The response that I usually get is, "Oh, I'm so sorry".
Daniel is young now and doesn't understand what people are saying, but that will change quickly. I don't want him to think that people should feel sorry for him because he's blind. I try responding with, "There's nothing to be sorry about, it's a miracle that he is alive and with us today." But that still seems to invoke responses of pity. Any ideas on a witty response? I'm very proud of Daniel and want him to grow up to be proud and strong - not believing that people should feel pity for him.
Date: January 17, 2000
From: Cindy Conley
Missy,
This happens to us all the time. Now that Kyle is older and speaks his own mind (and very well, I might say) he usually responds with "Why are you sorry, did you do something wrong?" It usually catches people off guard, but they are so shocked that they no longer pity him. We went through the 'baby is sleepy' syndrome also. I used to tell people that he wasn't sleepy, he was just contemplating what tantrum he was going to throw next. They didn't stick around to see. Sometimes the sarcasm is more than people can handle. But, you know what, the pity got to be more than I could handle.
Cindy, mom to Kyle, 12-11-89, blind due to ROP
Date: January 17, 2000
From: Jody Ianuzzi
Yeah Kyle, that's a good one! I think sarcasm is only fair for dealing with pity. Pity is the most awful thing in the universe...it takes away your pride and makes you feel worthless.
One of my mother's earliest memories of coping with my blindness was a similar 'is she sleeping....no she's blind' incident. Of course her answer was denial after that. So if people still respond the same way now that they did in 1953 then Kyle has the best solution. Perhaps people are saying they are sorry they misunderstood, or they are sorry they stuck their foot in their mouth. I wonder. What would happen if we just said 'please don't pity him' or how about 'he doesn't need your pity, he needs your understanding'.
Being a blind kid is hard because you can't use any of the adult techniques for responding to people without seeming rude. An adult is assertive, but a child is suppose to be passive.
I once had a lady announce to a group 'you know, she is blind'. It was so blunt that I couldn't help but to jump up and exclaim "I AM". How about 'would she like cream in her coffee' answer: "yes she would".
I would love to hear what would happen if parents start saying 'did you do something wrong' in answer to 'I'm sorry'..We might have something here.
Date: January 17, 2000
From: Carmen
Missy,
Great question. How to answer "those pity" comments.
My frame of mind usually determines my response. On most days, on good days, I smile and say "Don't you worry about Jake. He shows me the way every day." I truly believe this and I say it with such pride and joy. It usually brings a smile to that persons face. I hope my son is greeted with the respect any human being deserves when he faces the world. I want to convey to people that he is a great asset to this world and maybe He can help them out someday if they need it! This is my dream for Jake. I would love to see him reaching out to help others as often as possible. I would love to see his feeling of accomplishment for a job well done. I would love to have him respected in the workplace (whatever work place he may choose). I hope it becomes a reality for him. If so, my dreams will be realized.
I got off track ................ As usual.
Thanks for listening.
Date: January 17, 2000
From: Jody Ianuzzi
You moms are so great. I love you all. You really stick up for your kids and don't pretend they can see.
After childhood comes mommyhood. Then you get the pity from the other direction. I wish I could remember all the times my kids were told that they must be such good helpers for me. My answer was always 'all kids should help around the house and they couldn't help if I hadn't taught them how'.
I love it when they ask my daughter who taught her how to sew and she says 'my mom did'. How when they asked her who baked the cupcakes and didn't believe her when she said I did. She really got mad and told them off. One boy said 'yeah, well your mom is blind.' Her answer was 'so what, my mom can read in the dark and your mom can't'.
I guess people will always say dumb things, we just have to have the answers ready. The secret is that you have to believe in yourself and your kids, then you don't care as much what people say.
I have gotten very intolerant of the 'oh my, I've never met a blind person' attitude from some people. I used to try to be nice and explain but now I just ignore it and act like I'm in control. It usually leaves them standing there with their mouths hanging open. The silliest is when someone tells me the walk sign is on. In our town the light has a buzzer that sounds at the same time. Like a daaaaaa. I will say, 'thank you, I know, I HEAR it'. I guess sighted people don't hear it, they are only thinking about what they see.
Then there is the time I was crossing the street and the car pulled out in front of me. I stepped back and yelled 'hey you idiot, are you blind or something?'
I guess I don't take myself as seriously as I used to. What the heck,
PS The one that REALLY gets people is when they say 'are you blind or something' and you say YES.
Date: January 17, 2000
From: Sarah J. Blake
Hmmmm... I wondered what they'd do if I said, "Or something."
Whatever can't be cured can be endured.--Fanny Crosby
Date: January 17, 2000
From: Susan
Missy,
Some days I just don't feel like talking so when people say something about my son being tired I just smile at them and carry on about my business. I don't tolerate pity well so I choose my battles, if people are really ignorant it is better to walk away. In some situations I will chose to explain by simply saying he is blind or he can't see. If they say something that resembles pity I will usually just laugh and say something like, "this little guy is luckier than most" and leave it at that. There is no easy answer unfortunately, some people are kind and just interested and others are plain stupid....and nobody makes them wear signs to warn us LOL! It does get easier I have found as he gets older, he is moving really fast we don't have time to stop and chat anyways!
Date: January 18, 2000
From: Pranav
Hmmmm... I wondered what they'd do if I said, "Or something."
Only way to find out is to experiment.
Date: January 18, 2000
From: Pranav
Actually, I have found that public sympathy is handy in some cases like when I got on to a bus and 2 guys vacated their seet for me. Good for me too bad for them. No point in telling them that I can stand ok and I am not made of bone china!
Date: January 18, 2000
From: Missy
Thanks for all of the wonderful and humorus insight. :) I guess that over time Daniel and I will develop a "style" of our own. In the meantime I'll just proudly announce, "He's blind and isn't he beautiful?"
Date: January 18, 2000
From: Jody Ianuzzi
Oh Pranav, you mean public sympathy is world wide!
Date: January 18, 2000
From: Pranav
Yes plenty of it on the streats of Delhi at least.
Want me to send you some? (chuckle)
Date: January 18, 2000
From: Angela
Hi Carmen, Jana, Jody, Sarah and All,
Everyone's input and responses are greatly appreciated! I thought I was so far beyond the pain of Colin's premature birth that I wouldn't be as affected by his upcoming second birthday and the comments from and past actions of family members. I really have to begin to move beyond this.
I have tried to convince my family that I'm not a gloomy person filled with thoughts of impending doom! But rather, being realistic and informed. It amazes me the uproar that my purchase of the Braille blocks has caused. I think my family has a great deal of learning to do. Maybe I'll sub my parents to this list, so they can learn more.
My other peeve is the comments from people such as, "Poor baby, wearing glasses already...poor baby with that eye patch, he really can't see well, can he?" and "Ohmygosh, he's SOOOOOO small, don't you feed him?!" Help, Jody! How about a snappy comeback for that one? I've thought of, "Wow, and you're SOOOOO big, could ya spare a few pounds for my tiny guy?" But I could never muster the nerve. The thing I fear is damage to Colin's self-esteem, once he's old enough to comprehend the comments. As an adolescent and teen, I was tall and scrawny and had to endure many rude comments from an aunt and cousin, who were amply endowed. I recall taking a caloric supplement called "Weight-On" and being so discouraged about my thinness.
Well, enough of this vent. Thanks for listening.
\Date: January 18, 2000
From: Jody Ianuzzi
I think the babies that should get the comments are all these 10+ pound babies. Only twenty years ago it was rare for a baby to be that big. The mother would be considered high risk for developing diabetes. Now a lot of babies are born that big. (ouch) They are 21 pounds at three months. Reminds me of the 500 pound canary jokes.
I think that if someone comments about your baby being small, you could say that at 10 pounds, they are 5 times bigger then they were when they were born and say they are your miracle baby. Maybe reality will sink in and they will get the message. If they ask why the baby was so small, I would say that was a personal question and none of their business. Let them feel they are invading your privacy, they are. How about an indignant EXCUSE ME?
For the glasses question, the baby has vision problems and the glasses help them see. If you get the pity party I would say you are glad the baby isn't old enough to understand their pity, they don't need it.
If people are going to be socially inappropriate then they should be called on it. How about just answering it is a personal problem you don't wish to discuss with strangers. That says it all.
Don't feel you have to explain or be nice, if they have intruded on your privacy. If they say you are being touchy then ask them how they would feel about being asked personal questions by a stranger.
Date: January 18, 2000
From: Sarah J. Blake
Hi, Angela.
Well, this is kind of a long one, and some of what I say isn't stuff that everyone is going to agree with. I'm a little bit hesitant to post it, but I'm going to anyway.
To a certain degree, I have to admit that I can see where some people are coming from regarding the Braille issue. I really have mixed feelings about it. There are a lot of adults with ROP walking around who still have 20/30, 20/40, etc, and are in their 40's. There are also those of us who never had it, lost it, etc. I think the main reason teaching Braille to these kids concerns me is that getting them to use it very often is going to be somewhat difficult. Many of them will not qualify for VI services in school, and thus the Braille will not be reinforced in the classroom. They also will not qualify for programs like the NLS program. If & when they got to a point of needing that Braille, it may be a skill to relearn anyway. It's a little bit different when you start going down in accuity. I think the more severe the ROP is to start out with, the higher the likelihood of problems later on. That's just a guess, and I'll defer to Dr. Richards on whether it's right or wrong.
I'm not saying don't teach your kids Braille. That's something only you can decide. What I am saying is that if your kids have fairly normal vision and you decide to teach Braille, you're going to meet a lot of resistance from within and outside the blind community. If your child's condition is relatively stable, this is going to be worse because the trends are to teach Braille if there is a reasonable expectation that the condition will deteriorate or if the ability to read print is restricted to a certain degree. ROP is considered stable or unstable on a case-by-case basis. It's not like RP where there is a definite course that it takes. That is evident on this list, as I've mentioned above.
As far as the feeding issue, I'm tempted to suggest "You should have seen him when he was born." But that can invite a lot more attention that you may or may not feel like dealing with. You could try, "It runs in the family." I think the comments from the strangers hurt less than the comments from family.
Date: January 18, 2000
From: Michelle
Hi Sarah,
I tend to agree with you about not teaching Braille if a person has stable vision. I remember a girl in highschool with ROP who's parent's had decided she should learn Braille. She had a lot of vision and it had been stable She told me once that she didn't see why she needed to learn it when she could see pring well and wouldn't use Braille. She's in her thirties still has eyesight and has forgotten her Braille. I would have agreed she should learn Braille if she couldn't read print easily but she could. I guess that's how i'd make a on teaching Braille, vision stability and ability to read print. I think it's wonderful though to expose a young blind child to Braille since you don't know which theyy will be using.
I know what you mean about always having to answer questions. I wonder how many times I've explained how i tell bills apart and how Braille works? When I choose not to answer I worry about the impression of blind people I'm leaving with the person. I'm not offten rude, but it concerns me just the same.
Remarks from family are worse though. I can handle a stranger saying "Don't give up hope.They may come up with a cure someday." But when it's my relative who's saying it for at least the thousandth time it gets a little annoying! My family of all people should be able to understand that I don't need to live life hoping for a cure to be happy. I go to college I live on my own and I'm happy. Mom and I talked about it once and she said that probably my family would never stop wishing I could see, and that the best way to let them know I'm okay with it is to show through the things i accomplish and my attitude.
Date: January 18, 2000
From: Jody Ianuzzi
Yes, I do understand what you are saying. I felt that it was my responsibility to educate the public. I hope I don't sound cynical, but I think people will always have the same reaction to blindness because they feel that if they lost their sight they would feel helpless and they don't think of the training or adjustment or anything but their fears.
The recent posts of moms describing how people say 'oh, the baby is sleeping, oh the poor thing' reminds me of that. That is EXACTLY what happened to my mom in a department store in 1953! Nothing has changed.
We can educate people when we want to, but I think we have every right to OUR privacy when we don't want to be ambassadors. I think it also depends on the person's curiosity. Are they sincere or just nosy? Are WE in a mood to want to talk about it. Some days I'm a bear and other days I love to talk.
We have a new dentist. His office is upstairs on Main Street. I am always walking down Main Street. My husband was telling him we live in town because I don't see well enough to drive. The dentists answer was "oh, is she the one who is always zooming down the sidewalk like she knows exactly where she is going?" THAT is the kind of education we can do best, just live our lives and show people by example. But that still doesn't give people the right to ask us blunt, rude questions. You know what I mean?
Date: January 18, 2000
From: Jana
I can tell you that people no matter what their age can be (sorry the term), STUPID about their comments... My son, Kyle, has large ears and they bulge in the back and the docs. told me that this can be common with some micro-preemies.. Anyway, the first time my brother saw Kyle he said "damn look at those ears" and I proceeded to say well you have a big head and no one ever says anything to you so watch what you say to me about Kyle and too Kyle also... He has never said anything remotely close to that since... I tend to say what I'm thinking before I think about it and sometimes it works out fine and other times it gets me in trouble. I get the same thing about Kyle about being asleep when we are out in public and sometimes I say no he is blind he's not asleep and sometimes I don't... but you know what gets me it when these people make these comments about him being asleep is when he's got his foot up to his mouth and his toe in his mouth.. Now I don't know about you all but I have never slept with my foot in my mouth and neither have any of my children...LOL :) :) Oh well that is the way it is and it's up to us to be our childrens advocates and to try to teach the world....
Date: January 18, 2000
From: Sarah J. Blake
Jody, you brought up something that's an issue for me. The comments usually don't bother me. I think what bothers me most is the feeling that I have no right to be a private person or to feel that a question is too personal. If I refuse to answer it, I am refusing to educate the public, being rude, appear unapproachable, etc. But the truth is that I'd like some other aspect of myself to be the focus of attention for a while.
Date: January 19, 2000
From: Pranav
Hi Jody and all,
The dentist wanted to be educated thats why he was able to swallow the fact.
In a subsequent post, I am going to site examples of people for whom even this education proves inadiquate.