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?

Procrastinator!

Ok I totally flaked on myself today! I was supposed to run and did not go! I will try to do it when Paul gets home. 5 miles today and tomorrow, then the Mud Run Saturday are it for this week. I am totally nervous about the Mud Run! I am going to have my little cousin take a bunch of pictures to post of me just covered in slop!

Today was Mica's first day of playschool, her friend Olivia from the Fabulous Moms is in her class! She was not having it at circle time and kept trying to escape until they started singing a song with hand movements. I noticed out of all the children she was the first to pick up the hand movements and I have no doubt it is because she is learning sign language. The concept of communicating by gesture is innate to her at this point. I really feel there are massive educational benefits derived from children learning sign language as babies. They are better able to express their needs at a younger age and have less frustration. Today was the only parent participation day of the class, starting Monday Mica is on her own!

The Fabulous ASL Learners of RC

Last night was the 1 year anniversary of the Fabulous ASL Learners of RC! As always we met for the 2nd Monday of the month at 6:30 at Victoria Gardens in the courtyard between Starbucks and the Food Court. Being able to relax and communicate in a group setting is a blessing for a late-deafened person. When I first lost my hearing and would go to hearing functions, assuming everyone would include me, I was sorely mistaken. Even when people try, they try for a few minutes and then move on to conversate with people who don't need everything written for them. After a few months of being deaf and incredibly lonely, I began to seek out Deaf culture events in my area. I assumed that with my hearing gone I could make a new social home with other who cannot hear. At my first Deaf culture event I was so pumped up and excited to finally communicate freely with other people. I knew a little bit of ASL, mostly fingerspelling and basic words. I was absurdly wrong to think that I would just melt right in with another subculture simply because I lacked the ability to hear. That would be like taking a Spanish class and calling yourself Mexican! Being Deaf is not just about being incapable of processing sound. It is a culture, with its own norms and language, that most members are a part of from a very young age. At 21 I had definitely missed the boat.

I left that first Deaf event feeling very alone in the world, an island unto myself. A hearing person would attempt to speak to me and finding I could not hear them immediately categorize me as Deaf. Deaf people would see me speaking rather then signing, able to voice clearly as a hearing person would while not signing fluently, and classify me as hearing. What about how I see myself? Why do I need to be either or? I float somewhere in between both worlds, never fully able to participate in either as a full fledged member.

A year ago I decided to step up and do something about it. You aren’t surprised by that are you? I hate complaints without action! I started a local ASL group on meetup.com. I posted flyers, and by word of mouth I have 100 members today. When I am at our monthly meeting it is the only time out of the entire month I am able to communicate with both Deaf and hearing people with equality. There are all levels of signers who participate, from ASL 1 students barely learning to fingerspell, to Deaf members who sign ASL fluently while gladly slowing down and assisting the rest of us. I have learned so many new signs, but more importantly I have made a lot of really awesome friends. The entire premise of the group is that all are embraced and made to genuinely feel welcome. All you need is the will to participate and learn. If you are interested in our group please check us out here!

A potluck of thoughts...

I am achy like an old lady today. Yesterday I ran this run and was incredibly tired all day. When I start off on a long run I feel so motivated... Around the first mile my body is not in a rythm yet, and I keep thinking OMG I have another 8 miles to go!! Around mile 3 I hit a stride, and think yeah I am almost halfway! I can do this! At halfway the feelings are mixed, now I can think well I'm over halfway, but then again I am thinking I have to do all that again??? Then about 3/4 of the way I start to feel like well maybe this was a mistake! Abandoned shopping carts start call to me, like I could just coast the rest of the way and nobody would know! I start self doubting... until I catch a glimpse of the end of the run! Then my pace quickens and I run all out, my heart bursting, legs pumping, until I burst to my own finish line with a dizzying last step. Walking a quarter mile home as a cool down is the best feeling, the muscles in my legs and abs feel so tight, and I know I don't have to do that again for another week!

When I run I am always a bit paranoid. As a deaf runner I have to be extremely careful. I don't hear people calling out to me, or cars coming up behind me. I always try to run against traffic so if the sidewalk stops and I am forced to run in the street I can see exactly what is coming. I don't even understand why there are so many areas without sidewalk! What about people who are in wheelchairs? How are they supposed to get around? Whatever happened to accessibility for all?

Speaking of accessibility (yes this is a potluck post, I am bringing a little bit of everything!) why are all movies in the theatre not subtitled? I don't care if the subtitles would "bother" some hearing people, try not being able to understand the movies at all! The only option now is rear view captioning, which is a great advance, but incredibly difficult to work with. I always have a headache after trying to read the wobbly words on a tiny reflector while keeping up with the projection at the same time. I have to wait weeks for the movie I want to see to possibly play twice and at random times. As a progressive society a place as mainstream as the movie theatre should be held to a higher standard of accessibility. I am going to research this a bit and see what I can do to try to change it. I refuse to just complain without making my voice heard!

Now I am off to a playdate with the Fabulous Moms of RC, today I am off training and really looking forward to my ASL group tonight! Anyone in the Inland Empire is welcome to join us! We meet the 2nd Monday of every month at 6:30, in the courtyard between the foodcourt and Starbucks at the Victoria Gardens mall in Rancho Cucamonga! People of all signing levels are welcome, even those who just have an interest!