Friday, April 16, 2010

I'm Deaf, NOW WHAT!?

As I explained in my last post a huge chunk of my time at the CTF patient forum was spent learning about vestibular schwannomas, and the current status of their available treatments. VS can be life threatening if not treated correctly, but that is not why people focus so much on them when NF2 causes so many other types of tumors to be just as concerned about. Patients and parents who are thrown into the NF2 pit with a sudden diagnosis are almost always completely focused on and terrified of the idea of Deafness. Just the word Deaf can seem foreign and uncomfortable, oddly similar to death, and conjures up an entirely different culture of people than those of us in the hearing world. Having been hearing for all of your life, the idea of becoming Deaf seems unacceptable. People get angry, go into denial, cry, and fight back, reaching out desperately to every possible option that floats around the NF2 community. Chemo, implants, surgery, radiation... ultimately finding that most people with NF2 end up hard of hearing or Deaf. Fighting is definitely an option, but if or when the time comes acceptance is just as important...

So I ask, I'm Deaf, NOW WHAT?

1. Learn ASL. No excuses. I have heard them all, and for each one you can come up with I can introduce you to someone with problems much worse who has learned anyway. Learning ASL may seem pointless when no one else around you knows it. As you learn you will come into contact with more people who do, and build a social circle that you can communicate with freely. As you learn ASL try to sign as you speak so those in constant contact with you begin to naturally learn as well. Parents, go to ASL classes even if your teenager is in denial and refuses. In time it will pay off.

Places to learn: check with local community colleges, schools for the Deaf, and community recreational programs.

2. Take responsibility for your own communication. If someone is trying to speak to you in public, be prepared. Have a small pad of paper and a pen, or download a notepad program to your PDA. Just tell them "I'm Deaf, please write it down/type it for me. Thanks!" If they say no, and I hate to tell you people will, then they really aren't worth your time anyway, problem solved! (feel free to shoot them a dirty look and maybe stick your tongue out at them!)

3. For any doctor appointments, and this is SO important for the NF2 community, request an interpreter. If you don't understand ASL quite yet, request CART. (This is when a transcriptionist sets up a laptop and types on a screen for you. You can also request this at school!) They are legally required to provide this service for you. Do not allow people to treat you like a child, speaking right in front of you about you for 5 minutes and then writing 1 sentence to fill you in. If you are trying to rely on writing or *gasp* lip reading at any appointment, then you wont be treated equally. Respectfully demand accessibility, and report any medical personnel who does not comply.

4. Get tech savvy! Sidekicks, iPhones, Web Captel, video phones, ip relay.... text messaging is only the beginning! Make a few Deaf friends and ask for recommendations. You don't need anyone else to make phone calls for you, there are too many options to ever have to miss an important call again! Don't sit there next to your Mom or friend waiting for them to fill you in while they do all the communicating for you, you can use relay to call anyone, anytime.

5. Stand up for yourself. This is a recurring theme. Do not sit and be ignored in group situations. Do not let your family get away with telling you "nevermind" instead of filling you in. If you feel ignored, those guilty for the social snafu are most likely completely unaware. Speak up, you can even make a joke of the situation, but just let them know, "I have no idea what you guys are saying and can someone please fill me in?" 9 times out of 10 they will fill you in and then ignore you again if you allow them too, instead stay actively involved in the conversation. If you missed something, don't lie and pretend to understand, because people will pick up on it whether you think they do or not! If this sounds like a lot of work just to socialize, it is. Which is where those ASL skills and Deaf friends will come in handy! You might lose a few old friends along the way, but those who matter will stick around, and you don't have time for the rude ones anyway!

6. Get involved with Deaf Culture. I have heard countless times from people in the NF2 community that they don't think they will feel welcome within the Deaf community. You can define yourself however you want, but Deaf is Deaf. You can't hear. I have never once met a Deaf person who snubbed me for not being Deaf enough. In fact you will find the Deaf Community is an amazing hodgepodge of interesting people from all walks of life! HoH, CODAs, Late-Deafened, born Deaf, interpreters, ASL teachers, and even Mom's teaching their babies to sign are all active members in the Deaf community. Rent movies with Deaf themes, read Deaf books, learn Deaf culture history. As blessed as we are to be a part of the NF community, those of us who are also Deaf have the unique opportunity to explore an entirely different world! Deaf expos, Deaf coffee chats, Deaf Mardi Gras... the list is endless.

I am not going to lie and say going from hearing to Deaf is not challenging. I have my bad days when I miss certain songs, or just feel really left out in a social situation. The important thing is to allow yourself to embrace the challenge as well, and accept the person you have become. You choose your attitude every morning, why not choose pride?

Are you Deaf? What tips can you share for those still working on acceptance?


Felicity said...

I highly recommend seeing a therapist to deal with all of the emotional issues. I did and it helped a lot with learning to be more assertive- telling people "i'm deaf, I need help, slow down" etc. I'm in the process of finding a new one, because I moved recently. Here are some good links below. I especially love following Marlee Matlin on twitter. She's a wonderful advocate!!

Olivia Hernandez said...

That is a great point Felicity, finding a good therapist can be... well... therapeutic :) I love Marlee too! Read her books and love her new reality series on you tube!

Karen Putz said...

Great post! ALDA is definitely a good resource to refer to. Connecting with others who are sharing the journey is a blessing.

I just shared a bit about my own journey recently on my blog:

Cindy said...

God I loved my 20's ! G ood job Olivia.

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