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how can i keep my identity as a person? or, how have you?

stillaperson004
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hello,
when i was 13 i was found out to have nf2. i lost my hearing and ability to move my face from the surgeries. i am now 18 and no one treats me like a person. my own parents label me "the deaf person" no longer "my daughter".
does anyone else have this problem? this missing identity problem.
sorry if it seems like i'm whining. i just feel like i'm no longer considered a person. but a deaf person. and i don't want to be labeled like that. and the minute people find out i can't hear, they dumb themselves down to talk to me as if i'm 5.

gets frustrating.

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Paralysis

10 replies

jerecare

Hm. When people find out I can't hear, it's "oh, sorry" then they walk off or say "nevermind." That was pretty crushing.

NF2 was discovered in me when I was 17. The surgeries have resulted in total deafness and facial paralysis. That's sad to hear about your parents calling you that. Are you learning sign language? Getting involved with the deaf community? I understand you don't want that and you might not really accept that. I tried but am too hearing-minded but still take advantage of what I can.

It's important to consider yourself still a person and a capable one at that. Not to define yourself from what others say or do.

I will not say I know exactly what you are going through. It does sound very similar to my experience, and I will add I can empathize with you a great deal.

stillaperson004

i'm sorry about people just walking off from you after finding out you can't hear. it is crushing.

no, i am not learning sign. although i tried and know a little. it's hard because i was able to hear for so long. so it's easier for me to just lip read.

i've never heard of anyone else with NF2 having a face paralysis/partial face paralysis and losing their hearing after so long except me. so i can empathize with you as well.

NF238801

Hello I am not deaf, but we share the same things in how people treat us. Dont let it get to you. Life is too short, and there is many thing to live for.

jerecare

one thing that will help is to get your education. I find it best to contact people by email or even TTY before initially meeting them, so they have a better impression that I am at least half way intelligent. When they meet me, I fully realize my look is very odd. In typical society someone who looks like me does not, according to societal standards, have much of worth. So again giving people a different impression prior is very helpful. Most people don't grasp or don't really want to understand how limiting lip-reading can be.

Oh, about the impression thing, think of it like a movie. You tell a friend, "hey go see that movie. it's great." You might not like it afterwards but it is more likely you will go into thinking it will be a good movie. If a friend says "what a terrible movie", you are more likely to go into watch thinking it will be bad.

Probably more ramble than you wanted :-)

Kierstysmom

I don't think you are whining. I think it must be very frustrating. I'm sure your parents and most people mean well, and I know it's hard to be assertive to well meaning people but have you given it a try?.When they call you a deaf person correct them. Say "I'm a person who happens to be deaf." If they talk to you slowly, say , " I would prefer it if you would you speak to me normally."
Best wishes.

stillaperson004

no, you didn't ramble. thanks for the advise. :)
hm, i don't have a TTY phone yet.
people tend to forget that i can't hear because of how well i lip-read and that's when lip-reading gets hard because they forget i can't hear and will talk to me without facing me.

people i knew before these problems, don't seem like they want to accept that all of this happened to me. that's the awkward first impressions: the ones where people think that these things don't happen.

jerecare

I know for me, I always try to convey that people can ask me ANYTHING. I will be glad to educate.

One thing that does get me in "trouble" you might say is that I do tend to take on more than half of the responsibility for communication or a lot of other things. It has some to do with the deafness but may mostly be a personality trait.

If we lived in a perfect world, everyone would already be clued but we don't. So yeah sometimes it does take an extra effort (or no effort but that is not very good).

gagelonely

If we lived in a perfect world there would be no need for this forum. Would be a nice idea. My wife is starting to lose her hearing i think. She just hears ringing almost constantly. I wish there was somthin to do about this stupid nf. Just hang in there and try not to let things bother you. Know its hard though.

jerecare

oh, definitely having a close friend/ally helps. I wouldn't know :-) But I am definitely thinking it would, more than going it alone. Hopefully they will understand how to subtly and not-so-subtly tell people or direct people to talk with you and not him/her when they find out you are deaf and the friend is hearing. Sometimes it is easier to allow someone to talk with the hearing person and then later find out what's up. Not always but sometimes. In those cases, I don't let it eat at me. Too many other things to deal with. Sometimes I can deal with ignorant people, sometimes it's not worth it.

sweetiecat

hi! I don't have NF2 I have NF1. I know what it is like to have some hearing loss but, I don't know what is like to be totally deaf. I went to college for deafness. I got an degree in Deaf Education (Ministries). I went to a Bible College. If you didn't become deaf until your teens I bet you can read lips very well and I suspect you have pretty good speech communication. I'm sorry that some people are so ignorant that call you the deaf person. Do you they call you the white person or the black person(we are getting better with this one)? Learning sign language (ASL) could really benefit you, most of the signs look like what you would think they would. Our country still does not treat disabled or people with extra needs well. It all starts in school when we were kids. Kids are mean. The adults around them let them be mean to others who are less fortunate. Most kids grow up, some don't they continue this behavior as they become adults. I think it needs to stop in elementary schools! We need to teach our kids how to be respectful of others and espc. be respectful of those who do have special needs or are not like themselves. Sorry, I started to rant.. one of my soap box issues.

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