I guess I think it's better than the opposite. I don't want someone telling me they know how I feel and understand what I'm going through when it's not true. That's much more frustrating and kind of insulting. I think it's only disappointing to hear that someone close to you will never completely understand/know what it's like, if they don't follow it up with something akin to, but I am here for you and will try my best to support you however I can.

One of the most common questions I get as a parent of a blind 5 year old is "What can she see?" The truth is I have absolutely no idea. I can tell you that she sees something. She can still see colors and can recognize some letters and numbers, so long as they are big enough and she is close enough. I can tell you that she has 20/500 visual acuity and can make analogies about what that might mean, but I have 20/20 vision and don't use glasses at all. I have no concept of what blurry vision would be. I can ask "do you see the stop sign" but she's 5 and might just be saying yes to play a game and not really see it. It is also frustrating hearing from relatives. They will often say "but she navigates so well" she avoids objects and doesn't fall too much so they are almost saying "well she's not REALLY blind."

I feel like I'm constantly walking a line between helping her too much or not enough. Should I help her dress or should she do it herself? Should she find her shoes or should I help? Am I helping because she's blind or because she's only 5? Is she whining and complaining that she can't find something because she's blind or because she doesn't want to do it herself?

She also has an older sighted sibling who will say "you need to use your cane because your blind." While that it true and correct, I don't think she needs the constant reminder from her older sister that she is blind and needs to do things differently, but perhaps I'm over thinking it.

Perhaps the answer to all of this is to teach self-advocacy so she can say, "this doesn't work for me what I need is this."

There are lots of things that parents won't be able to relate to, even without a disability.. So I don't see it as being hurtful or bad or disappointing. It's just the way life is.

Mom will never fully understand being a teenage boy. Dad will never fully understand being a teenage girl. Straight parents won't fully relate to gay kids, and cisgender parents won't fully relate to transgender kids, a parent of one race won't be able to fully understand what it's like to be biracial, etc. The list goes on and on and this all works in the other direction, too.

You don't need to fully relate to someone's experience to support them and be an ally.

I am not blind but my mom is. I think it sort of applies. If you think about it, in life we can never truly understand what someone else is going through. I had challenges that my parents could never really fully understand. But that's ok, that's life. The thing is, if you care about some one you can still be compassionate and empathetic and find ways to support them.

For example, my mom, who has had vision issues since birth ( genetic vs trama or disease), as she has gotten older, her vision has gotten much worse. She struggles with depression from morning the loss of what was left of her vision and because of her limitations and because of things she feels she will miss out on (seeing her grand babies). While I don't really know how it feels, I can put myself in her shoes and realize how difficult and scary it must be for her. I find ways to support her. I ask her questions about how she feels. Not knowing, hasn't stopped me from trying.

My mom is my hero. When I struggled with ADHD in elementary school, she really couldn't understand what was going on in my brain but that never stopped her from supporting me. She told me something that stuck with me. - everyone in this world has a cross to bear. You may not know what that cross is but know that they have one. - this was her slightly religious way of saying we all have struggles either visible or invisible. She used her blindness to help me accept my ADHD.

I've never put much thought into it other than realizing that it is indeed the case.

It's totally subjective because no two people react to this sort of stuff in the same way.

I sometimes mentor people, often young women who are in the same position I was of losing a lot of sight really fast. Every single one of them has reacted to it differently according to what that particular person is like.

Nobody really understands what it's like to be someone else and it's a mistake to assume that we do, even if we share some obvious characteristics. It's not like I know what it's like to be anyone else just because we might both be blind and being blind is unusual. I don't somehow get some psychic knowledge of what it's like to be the people I have mentored. I have to work at that like anyone else would.

So don't sweat it. I don't think I've met a parent yet who fully understood their kid, for any reason.

The thing with my parents is well... it's hard to put that into words. Mom was one of those people who if you couldn't do something her way, you shouldn't do it at all. Dad was one of those people who I pretty much had to prove wrong at every turn. Well actually they both were.
Mom still lectures me about my clothes, and the way my house is organized. Well, when she gets a chance to come over here which is not anymore. Dad thinks mom is just looking out for me.

I’ve never really understood this concept that sighted people can’t be part of the blind community because they don’t know what it’s like. I only know what it’s like to be me. I can imagine what it might be like to be somebody else, but I will never truly know. Often times my friends that say this or think they would be a better teacher than me are also my friends who are less flexible and willing to adapt to the needs of others. I think it’s important to think about the needs of who you are trying to help and what would be beneficial compared to what you think is helpful as sighted person or what has worked for you in the past as a blind person. Even if someone else could never truly understand what it’s like to be us, I think we all end up a little off for the better when we try.

I think it can be both hurtful and beneficial