Sunday, January 25, 2009

To tell or not to, that is the question

How many of you wondered if you should tell the person you meet that you have Stargardt's or is visually impaired? How do you bring it up without it being awkward. What i've noticed most if after you bring up this topic, most people sometimes become uncertain as to "what they can ask" and afraid of offending me.

Since I've been job hunting lately, I thought I'd talk about the issue of discloing your disability. Truthfully, if I had a choice, I would like to keep it under wraps until I am hired. It hard not being labelled and you can never really know what the person sitting accross from you is going to think.

But for me, I've been really upfront about myvision or lack there of. Most people will have nice response and friendly about it. Although whether or not it hurts your chances of being hired, I would probably say yes still. We live in a prejudice and sterotypical society, so at the end of the day, you have to expect thse people will be. Is there anything we can do about it? well if you ever get the chance then you might be able to "prove" yourself, but otherwise its good luck and learn the art of moving on.

When it comes to social settings, I don't usually mention it unless its necessary. I try to do things on a need to know basis, and if it won't affect my interaction with this person, then I don't see a need for them to know. But I always find it funny how because I look "normal" and at "normal", sometimes even after telling them about my vision problems, they still forget the next time they see me. Afterall, most people think its bad, they just don't realize how bad...


  1. You are exactly right! I think of Stargardt's as the transparent disability. I have known people for weeks and then told them that I am legally blind, and they tell me "shut up", "no way". "Yes", I tell them "my entire central vision is gone". Even my closest friends and family will tell me to look at something in the distance because it is funny or neat. They then think again and explain to me what they see. It has its positives (I'm not stereotyped right off the bat) and its negatives (people don't always want to give me extra help). Thanks for sharing your thoughts.

    - Richie

  2. I'm almost 50 years old and had onset of Stargardt's at 14. I had 16 years with the anonymity you get because people "can't tell
    . Then ten years as a cane user and the past almost ten years using a guide dog. If I could get up the energy to go back to that way of being where nobody knows, I would do it. My guide dog is about to retire, if I just didn't pull out my cane when I go out without her. If I told nosy people that I had some kind of miracle operation. It would be less safe and harder logistically but probably much easier emotionally. Now I have kids I think it would be a bad message to them - better to hide who you are than deal with discrimination. And I also owe it to them to be a little safer if I can. But it's tempting.

    It's hard either way. Access is a problem either way. These days getting help from strangers is harder because everyone is wearing headsets of some sort, and they don't hear when I'm asking for help, so there is no longer much advantage to being visibly blind,. I can remember how frustrating it was early on when I'd ask someone what street I was at while standing right under a street sign and the hostility that met me for troubling them when I could theoretically just look at the sign. I remember switching to longer questions where I would say "I can't see the sign, can you tell me what street this is?" and then getting the more hostile response "why don't you get glasses". I finally ended up with a whole spiel that went "I have an eye condition that glasses don't work for and I can't see this street sign, can you tell me what it says?" Or sometimes I'd start with the explanation that my glasses were broken. As hard as that whole hassle was, it's nothing compared with the veil that I feel was pulled down between me and most sighted people the moment I picked up a cane and became identifiable. The separation where I stopped being me and became a blind person. It even happened with friends who knew me before and after I used a cane, who always knew how low my vision was, but who never thought about it meaning anything, as It didn't, really, and then when I picked up a cane they acted like I was fragile and semi-incompetent and also lacking in understanding about the world and limited in many other ways. some of them still treat me like I'm semi-incompetent and different even though nothing about me changed. What sucks is that this is a really segregated society in a pretty segregated world, that people are seen as "other" when we have a disability. That we are not seen as who we are as people but as manifestations of our disabilities. It also sucks that in the fairly technologically advanced and until recently affluent societies that the US and Canada are, instead of being at a point where we could be refining access to complex situations, we still don't have things that would be easy enough to do like accessible street signs. Like, the relative cost of a little braille at waist level and large print at eye level along street sign poles would barely cost anything and noting if it were planned for from the beginning. But I could get on a rant about this for hours. If I had to give advice, not as a responsible older person but just the honest reality I'd go back and share with myself, I'd say it's an easier way to go through life if you can keep it hidden. And I really hate that.

  3. Be open about it! I have always found a way to do what I would like to do. If they have a problem with you they will just find a way to get rid of you. If they except who you are then you will not have to worry about retaining a job.

    I use to have to use a cane but was able to learn ways to function without one.

    Be honest with yourself. You are legally blind and people need to except you for you.


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