Some say looooooooove....

(Click here for a subtitled version)

I'm back on eHarmony. I'm weak, don't judge me. I got suckered in by the free weekend and before I knew it, I had signed up for a three-month membership. Whoops.

I keep going back and forth, though, over whether to mention my hearing loss on my profile. On one hand, I want to be upfront so that there are no surprises. You know, if someone kept something like that from me until we'd exchanged several emails, I think I would wonder what else they might not be telling me. I don't want to appear deceptive. On the other hand, sharing that kind of information is pretty personal and I'd rather someone got to know me as a person (and me get to know them better) before divulging my hearing loss. Hearing loss is easy to misunderstand and I wouldn't want someone to see "hard of hearing" in my profile and run the opposite direction because they think it is something scary and foreign.

I also wonder how a relationship works if one person can hear and the other is hard of hearing. Would my friends who are hard of hearing with hearing spouses/significant others chime in here? In my more melodramatic moments, I'm convinced that NO ONE will ever GET me if they are not hard of hearing themselves and in my more mellow moments, I remind myself that I'm a person first, and that personality and heart trump hearing loss... I think?

Talk to me. What are your thoughts or experiences on being in a relationship when you are hard of hearing?

I posted this a while ago, but I think it's worth sharing again... I hope it makes you smile!

Thankful for you

(Much of the correspondence that takes place among my church seems to end with the same affection: "Thankful for you." Hence, the title, apropos to this sincere story of appreciation for my church family.)

Today, I went up to my church to help wrap gifts for Affordable Christmas - an event that gives families in our community an opportunity to purchase Christmas gifts at extremely reduced prices. It's an amazing way to get to know the people who live in the area where the church is and I really enjoyed chatting with the families who came. And somehow wrapping gifts seems so much more fun when it's for someone else! :)

Before I went up to the church for my shift, though, I was battling anxiety and almost wanted to back out. I knew that the gift wrappers would be in the gallery, an area that tends to render almost everyone hard of hearing on Sunday mornings because it's not the most acoustically sound (ha, see what I did there?) place in the building. In other words, it be loud up in there! I only have one good hearing aid right now while I wait for new ear molds to arrive at my audiologist's office. I can't lipread and wrap presents at the same time. How was I going to engage with the shoppers and wrap their gifts at the same time, unable to filter out the dull roar of background noise?

But I was convicted that not going would be worse, so I made my way over and asked the gift wrap coordinator if she could pair me with another gift wrapper so that someone would have my back if communication became a problem. She happily teamed me up with another volunteer who graciously answered questions that I missed  hearing and helped carry on conversations with the shoppers. While all that was going on, we worked together to wrap gifts. I'm so thankful for those two ladies who were willing to help me be part of the team!

That led me to reflect on the other ways I'm able to serve my church family. I help our children's ministry most Sundays and there have been a few times where I wondered if I was the best person for the job. Trying to field questions from parents and volunteers, help volunteers troubleshoot the check-in process, interact with kids who haven't learned how to enunciate yet... all in the very same gallery that reaches fever pitch every week. Shouldn't someone with better hearing be doing this? Would I serve my church family better by stepping down and letting someone who is better equipped step up? Am I making Sunday mornings more complicated for other volunteers who have to do their own jobs in addition to helping me communicate?

But every time I've raised the question with other volunteers or staff, the answer has been a firm "NO." If anything, they ask me what else they can do to make sure that I am able to fulfill my duties every Sunday. They don't let my disability get in the way of my ability to serve! They don't just minister to me and make me the object of their compassion and kindness - though they do that as well! - they equip me to serve along with them. They embrace 1 Corinthians 12, especially verses 14-26:

For the body does not consist of one member but of many. If the foot should say, "Because I am not a hand, I do not belong to the body," that would not make it any less a part of the body. And if the ear should say, "Because I am not an eye, I do not belong to the body," that would not make it any less a part of the body. If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell? But as it is, God arranged the members in the body, each one of them, as he chose. If all were a single member, where would the body be? As it is, there are many parts, yet one body. 

The eye cannot say to the hand, "I have no need of you," nor again the head to the feet, "I have no need of you." On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together.

Having the right heart and attitude toward someone who lives with a disability is so important for a church that is seeking to love the "weaker" members. Formal ministries and programs and schedules and plans and events can be good ways for a church to connect with those who have a disability, but all of those would fall short without the right heart. I'm grateful to be part of a church that faithfully preaches God's goodness in and sovereignty over the hard things like disability and takes the Bible seriously when it says that we are all one in Christ.

So church family, I am indeed thankful for you, and delighted to grow with you - for God's glory and our joy!

How to deal with hearing loss on the job

One of the workshops that I went to during the HLAA convention last month was called, "The Art of Telling: How to Tell Your Date/Boss/Friend That You Have Hearing Loss." The gist of the presentation was that it's important to not shy away from revealing your hearing loss because it helps you facilitate communication, which is foundational to any relationship.

When I have more time, I hope to blog more about this particular workshop because it was fantastic, but for now, I wanted to talk about how to deal with your hearing loss at work. The speaker made some excellent points, including:

1) Those of us with hearing loss should focus on our assets rather than be distracted by what we can't do.

2) If we are comfortable with our hearing loss, others will be comfortable with it as well.

3) It's our responsibility to tell our employers what we need in the workplace.

Here's what that means in my head:

1) When you're in an interview, never portray your hearing loss in negative terms. Don't give any indication that it will hold your back or hinder your ability to do your job well. Your hearing loss will only limit you if you let it. While it's true that your hearing loss may make you unavailable for certain types of jobs (for instance, I will probably never be a receptionist because that's just too much with the phones or a server in a restaurant because I would not be able to hear everyone's orders in a bustling environment), there are so many more that you are well-equipped for. If you're organized or detail-oriented or have an aptitude for technology, say so. If you need to work on your time-management skills or find it difficult to relate to customers, tell your prospective employer that you're working on them. Focus on your job-related strengths and be honest about your weaknesses - but just know that hearing loss is not one of those weaknesses! If you think your hearing loss will be a problem on the job, your prospective employer will think so, too... and probably won't make an offer.

2) When I was interviewing for my current position, I had a phone interview with the manager of the department. I was using a CapTel phone and, for those not familiar with the technology, there is a two or three second delay while the captions catch up. Because of that, I made the decision to tell the manager about my hearing loss and explain briefly how the phone worked. Then I moved on with the conversation. It was important to me that I was honest with him about who I was so that there were no surprises when we met in person. I didn't spend too much time on the subject of hearing loss because I wanted to show him that it would not affect my success on the job and I wanted to have plenty of time to share about my time on the campus newspaper, my English degree and the leadership roles I'd taken on in college, things that had far more to do with the position than what kind of phone I was going to need to do the job. I didn't make my hearing loss an issue and as a result, neither did they.

3) Generally speaking, if you need any kind of accommodations on the job, it's your responsibility to identify what you need in order to do your job well and then ask for it. I don't remember if my needing a Captel phone came up in my interview or not, but it was a point of discussion within the first few days of working there. I had to explain how the CapTel was different than a TTY and why a CapTel was a better fit, not just for me, but for the position (in this case, my clients needed to be able to call me directly so a TTY was not a viable option). Employers need to be educated about hearing loss just like anyone else. Be patient, explain (nicely!) what you need  and work with them to find solutions. Advocating for yourself at work by knowing what kind of accommodations you need and asking nicely for them will also help fulfill the other two points - it will show your boss(es) and co-workers that you are comfortable with your hearing loss and that you're not allowing it to deter you from doing your job well.

What else would you add? What issues come up when you're looking for a job? How do you deal with hearing loss in the workplace after you've landed the job?

My Song (and a crash course in BSL)

When I was in college, I had to read a short story whose title I've forgotten already. It was about an old lady who lived in an antebellum mansion and was obsessed with the past and the Civil War (at least I think it was the Civil War. I may be making that up) even though it was after the turn of the century. During the class discussion over the story, I learned a new word - anachronism. The main character was so closely associated with the time period that she was obsessed with that it made her seem out of place in her current setting. She didn't "belong" in the present.

Taking some liberties with the definition, this video reminds me of the same theme. Not really fitting in any one particular world, but trying to find a way to carry on regardless. Anyway, step away from that King of Queens episode that you've seen 729 times and watch this instead.




It's okay if you cried, I did, too. Well, I would have if my eyes weren't fighting a losing battle to stay open. Even though the film was made in Britain and used BSL (British Sign Language... yes, each country has its own sign language), I could relate to Ellen's struggle to fit in. And now I want to brush up on my BSL alphabet! 





Have you ever felt like you didn't quite fit in? How did you respond?

Do you sign?

I don't remember learning sign language, but I also don't remember a time when I didn't know how to sign. I was mainstreamed starting in preschool and was around other deaf and hard of hearing children all through elementary school. I had interpreters in my classroom and spent time with Deaf Education teachers. Even my hearing friends learned to sign and we would "talk" during class... unfortunately, the teachers knew some sign language, too so we rarely got off scot-free! ;)

I never liked to sign at home, though, and I wish I could tell you why that is, but I haven't got a clue. I was fine with it at school but insecure signing at home. Maybe because at school, I was one of several deaf/hard of hearing students but at home, I was the only one with hearing loss. Was signing at home an uncomfortable reminder that I was "different"? 

My parents and brothers do know a little bit - in typical BOY fashion, my brothers delight in signing "turtle" and "poop" over and over and over again. Eye. Roll. They all know how to sign the alphabet and that comes in handy when I just can't understand something they've repeated several times. Sometimes just signing the first letter of the word they're trying to say makes something click and I'll figure out that, doh, they were saying "mother" and not "brother."

But for the most part, I don't sign with my family or hearing friends, just with my deaf and hard of hearing friends. When I was growing up, my interpreters used CASE with me - Conceptually Accurate Signed English (others may know it as PSE), which uses ASL (American Sign Language) vocabulary but English word order and grammar. Many people don't know that ASL is actually considered a foreign language with its own grammar and syntax. I can understand ASL but I wouldn't say that I'm fluent in signing it myself. After a few years of being out of touch with the deaf and hard of hearing community, my signing grew rusty. Now, though, I feel like I'm getting my fingers back, though I'm not quite sure what brand of sign language I'd say I use. It feels more like a cross between CASE and SEE (Signing Exact English), which I lovingly refer to as LSL - Lucy Sign Language. ;) I'm thankful that my deaf and hard of hearing friends are patient with me as I re-learn everything!

Sometimes I wonder if I should be encouraging my hearing friends and family to learn a few more signs. What if my hearing loss progresses? How will we communicate? And not that I'm ancient by any means, but the older I get, I'm finding that I have less patience to keep up with groups of hearing people... maybe if I taught my close friends and family to be more fluent, our conversations would flow a little more smoothly. Plus, I watch a lot of small children and just welcomed a sweet little nephew into the world over the weekend. Children are hard for me to understand and I'd like to find a fun and easy way to teach them to sign so we can still communicate and enjoy each other.

How about you? Is sign language a part of your life? 

Post-convention withdrawals

Getting on the plane to come back home after the HLAA Convention was hard. Not because I couldn't understand the airline employee. Not because I was worried about traveling alone or trying to avoid the reality of going back to a routine come Monday. Not even because I loved DC so much that my inner history nerd could probably pack up and move there if given the chance.

No, coming home was hard because it meant leaving behind 1,200 people who get hearing loss. No, I didn't get to know each and every one of them. But for a few brief days, I didn't have to explain myself to anyone. When I asked someone to repeat themselves, no one rolled their eyes or sighed or looked startled - repeating is a natural part of the conversation among the deaf and hard of hearing. Communicating was comfortable and I never felt excluded from the conversation.

Don't get me wrong. Many of my friends and all of my family can hear. I love them dearly and I know the feeling is mutual. I appreciate it when they are sensitive to my hearing loss and work to include me in their activities. They are thoughtful and understand that sometimes I need a sensory break. They know to sit where I can see them and to speak clearly but not over-enunciate. I treasure these labors of love, though I know many of my friends and family would take issue with me calling it a "labor." "It's really not," they'll insist, and for that, I am grateful.

But as well-meaning and kind as my hearing friends and family are, there is just something that clicks more when I am with other deaf and hard of hearing people. It was a welcome break to be with other people who knew exactly what I meant and how I felt when I relayed the story of that one time my audiologist turned his back to me while he talked. We laughed together at the irony that even among other deaf and hard of hearing people, we still had to ask what was going on and who said what. We discussed hearing aid brands the way other people might discuss their favorite cars. We have our own vocabulary - audiogram, cochlear implants, CapTel and looping are probably not part of a typical lexicon.

Sometimes, when I am in a group of hearing people, who are all talking and my eyes are darting around the room, trying to figure out who is talking and what they are talking about and then trying to track that conversation as it flies from mouth to mouth... sometimes, I feel incapable. Like I am not smart. Like I don't have anything to contribute. I understand that may be my own faulty perception. Yes, there are strategies I can employ to maximize my group experience. No, I don't use them as often as I should. Yes, this is an exhausting lifestyle sometimes!

I came home to a Facebook message from one of my new friends that I had met at the convention."I eavesdropped a little on a conversation you were having," he explained. "I liked what you had to say." And I realized why leaving DC was so hard. Because I felt smart and capable, like I had something to say and to contribute. For lack of a better term, I felt more like a person.

Being hard of hearing in a hearing world is not the worst thing to happen to me. Not by a long shot. But I do often struggle with feeling like I live on the outside of things, always on the edge of everyone else's experiences. Helen Keller said, "Blindness separates us from things but deafness separates us from people." That separation is hard to bear sometimes, and that's why being around other deaf and hard of hearing people is a relief: I don't have to work so hard to understand and be understood. We know how to communicate so that everyone is included.

I'm glad I have a growing community of deaf and hard of hearing friends here at home, but I'm excited to make new friends across the country, too!

Next year in Rhode Island - who's with me?!

Please don't tell me it's not important

I searched the airline employee's face in frustration. She had just made an announcement about my flight. At least I think she did. I heard "12 minutes" but that was about it; her mouth was obscured by the loudpseaker she was using to get her point across. I couldn't read her lips and I didn't understand what she was saying. I stole a quick glance around and noted that none of the other passengers waiting at the gate seemed alarmed by her message, so I was assured that there was no cause for concern.

But still. I had to solve the mystery of the 12 minutes because I like to know things. I'm nosy like that. So I asked the person next me. I explained that I was hard of hearing but I didn't catch the announcement. Could he please tell me what it said? He was kind to oblige me and as it turned out, we would be leaving in 12 minutes (I know, riveting solution, you can rest easy now). But then he said, "It wasn't anything important."

I smiled and thanked him but inwardly, I was groaning. It may not have been important to you, I grumbled on the inside, but it might have been to me!

I know, I know. In the grand scheme of things, no, it wasn't that important. I could have easily deduced what the 12 minutes were about and knowing that there wasn't an emergency, I could have boarded the plane in peace. And it's very likely that the gentleman who told me it wasn't important was just trying to assure me that there wasn't anything crazy going on.

Growing up, though, "It's not important" were three difficult words to swallow. "What did he say?" I'd ask a friend, because I so desperately wanted to know what everyone else knew, to fit in, to belong. "It's not important," was a common reply, because it would have taken too long to repeat, maybe. Or it was too complicated to explain. Maybe it really wasn't important.

The thing is, though, we don't get to decide what information matters to someone else. We can't assume that because we find one piece of information useless that someone else will feel the same way about it. We don't know what's going on in someone else's life or plans or day - maybe they really do need that information, however inconsequential it seems to us. It's kind of like a detective show... we've probably all seen an episode of CSI/Law and Order/NYPD Blue/(insert favorite cop show here) where a rookie cop overlooks an important piece of evidence that would have sent the bad guy right to jail. He didn't speak up because he thought it didn't matter, but if he had just passed his information on, the case would have closed long ago.

Are you with me? When it comes to hearing loss, those of you who can hear would be doing those of us who cannot a huge favor if you just pass the information on and let us decide for ourselves how to use it. When others decide whether something is important or not, sometimes I feel as if they're really saying that I'm not intelligent enough to make my own decisions - and that is harder to deal with than the hearing loss itself.

Love language

Sometimes I wonder (er, worry, if we're really being honest here) if my hearing aids are a turnoff to prospective suitors. How do relationships work if one person is deaf or hard of hearing and the other isn't? I know people do it and I'm curious how they manage. Does it get tiring for the hearing person to have to repeat themselves? Does it get tiring for the deaf/hard of hearing person to explain themselves?

Am I thinking too much again?

Don't answer that.

Just watch this video that I stole from Speak Up Librarian. It made me smile. And helped me stop thinking.



And I confess I teared up a little, too. I'm a girl. It's what I do. Just go with it.

Happy Weekend-ing!

Old lady

You guys. It is 8:29 p.m. and I'm in my pajamas. And I have been since 6:15. And I'm pretty sure that if I was laying down on my couch right now, I'd be losing a battle with my eyelids. I know, I am a wild woman. Don't hate.

I have about zero original things to say today, so I'll just point you to a couple of links I thought interesting.

Last night's Extreme Makeover: Home Edition took place in Oregon. Instead of giving a family a new house, though, Ty and co. gave Oregon School for the Deaf new dorms! Neat-o supreme-o (oh my, yes.i.did.just.say.that. Old lady alert)! You can watch the video at ABC's website - and with subtitles, too! Marlee Matlin made an appearance and several of the students got new hearing aids from Starkey. So nifty (I'm just full of old school today)!

And then today over at (e's blog, she talks about conversational delays. It's one of those things that I notice about myself but at the same time, I don't. I'm so accustomed to these pauses that I barely notice them anymore. But I'm glad (e blogged about it, because I genuinely thought maybe something was wrong with me that it took me a few seconds to process information! ;) So now you know. When I stare at you blankly from time to time, I'm just trying to catch up.

Okay, the grandma in me is ready for some couch time, warm milk and either a book or Star Trek: TNG. It's an old lady kind of evening, and that's peachy keen with me.

Off.

I have been feeling off lately. Probably because it is 70 degrees. In October. In case I wasn't clear about that earlier. But really. Off.

After a conversation with someone and reading (e's post about how people respond to hearing loss, I feel compelled to chime in.

I spent most of my life blaming other people for the fact that I was hard of hearing, basically. If I was left out, it was all their fault. Or if I couldn't keep up with the conversation, not my responsibility. Feeling lonely was their doing, not mine.

But in the last few months especially, I really feel the Lord has given me a different perspective on things, including how I relate to people about my hearing loss. I realized that it was unfair of me to hold them accountable if I had not spoken up and shared that part of my life with them. How can I get mad about being excluded if I never told someone that I felt that way? How is it anyone else's responsibility to assuage my loneliness if I didn't tell them I could use a friend? And how can I blame everyone else for talking at lightning speed if I never asked them to slow down?

Yes, sometimes people respond to hearing loss rudely. Other times, they are just silly. But all of the time, they just don't know any better. Is it their fault for not knowing? Or my fault for not teaching?

Hearing loss is my world, but it is not everyone else's world. Most people that I interact with regularly do not deal with it the same way I do. They don't wear hearing aids. They aren't on a first-name basis with their audiologist. They probably don't even have an audiologist. Their sign language is rudimentary and they are shocked! stunned! amazed! at the idea of speech reading. Captions and subtitles are optional for them, not mandatory. Hearing loss is not their world, so how can I hold it against them if they don't respond the way I wish they would?

But that's not to say that I'm on board with giving everyone a free pass. Just because hearing loss may not be a part of someone's world doesn't mean that they can ignore it. And it's hard not to feel like maybe the hearing aids scare people off sometimes. But something else that the last few months have taught me is that people's unwillingness is not always related to my hearing loss. Sometimes it is them. They are shy. Or they build walls. Or they are just busy. Or sometimes, even, the problems is me, doing the exact same things. So I understand now that my hearing aids aren't always the things keeping me from building the relationships that I'd like to build.

Maybe I need to examine myself first and see where I've gone wrong before I go around casting blame and breeding frustration.

Medley

I babysit some Monday nights. One of the kids is 6 and wears hearing aids, like I do. But after talking to her and her mom, I discovered that her hearing loss is mild. She can go without her hearing aids and responds fairly well when I give her instructions - even when she is not facing me to read lips. I have a friend who lost her hearing after her daughter went to college. She's tried learning sign language and to speech read, but it's been a struggle.

Hearing loss isn't a one-size-fits-all kind of deal. The level of hearing loss (mild, moderate or profound), how old someone was when they lost their hearing, whether they were the only deaf/hard of hearing person in their family or not, how much support they've had in their hearing loss journey, - there are so many factors that make hearing loss unique for each person who lives with it. Some wear cochlear implants, some wear hearing aids and still others find neither of those to be viable options. Some people prefer to sign, others to voice for themselves. Some are good speech readers and others not so much.

I always appreciate it when someone asks me how they can best communicate with me. For reasons I've never understood myself, I get uncomfortable when someone I don't know tries to sign to me. I guess I don't like the assumption that just because I wear hearing aids, I must not be capable of speech. I'm not sure every single person I run into really thinks that and hello, we've established that I am She Who Thinks Too Much, so it's entirely possible that I over analyze it when someone shows me that they know the phrase "thank you" in sign language. Buuuuut still. I'd rather someone ask me how I prefer to communicate rather than offer a solution that might not fit my needs or personality.

And now I'm finding the road goes both ways. For a long time, I was the only hard of hearing person I knew. But now that I'm spending more time with other deaf and hard of hearing people, I'm convicted about my own need to accommodate others. Isn't that funny? All these years, I've been thinking about what I need other people to do in order to accommodate me that I forget there are things that I can do to make communication easier for others. For example, I want to be a more natural and comfortable signer just because there are now some people in my life for whom signing is their primary mode of communication. I also need to do a better job of remembering the simplest things like turning so that someone can see my face or not obstructing their view of whoever is speaking. Things I want to educate people to do but fail to remember myself (Oh hey, hypocrisy, how are you?). Guess I still have a lot to learn myself! ;)

What Would You Ask: Lectures and Sermons

Last week, Suz asked:

"[H]ow do public speaking forums work best for you (aka. lectures, sermons, etc.)?"

Um, seriously, are you people stalking me? In the hiding-in-my-closet-and-spying-on-me-way, not the I'm-following-your-blog way. Yet another timely question, as I just got back from the Desiring God conference in Minneapolis this weekend, which provides the perfect backdrop for this particular query.

One of the things I really love about Desiring God is their no-holds-barred approach to ministry. They have a "whatever you can afford policy" on their resource items and have faithfully provided accommodations at their conferences. They're pretty good about supplying transcripts of online audio or video and they're faithful to translate their library into other languages so that all people might learn about God. This year's conference was no exception. They offered ASL (American Sign Language) interpreters in addition to Spanish and Russian translators. They don't let anything keep them from sharing the Gospel.

I was really thankful to have the interpreters because even though I was sitting in the front row and the speakers' faces were projected on a large screen behind them, it was still difficult to lip read. They moved around a lot or were just a little too far away to catch. And I tried, but there was just something about lip reading on the screen that was difficult. I'm not sure what it was... maybe I rely on body language to help facilitate communication more than I realize and the way the camera was positioned, we mostly only saw the speaker's face on the screen. So because my primary mode of communication - lip reading - was weakened, I was thankful to have the interpreters for help.

However, I was reminded once again how much English, and not ASL, is my first language. I felt like I could mostly keep up with the concept of each session, but the Wordie (oh there I go making up words again) in me really wanted to know exactly what each person was saying. For example, when Al Mohler was talking, he kept using the word "unregenerated" to refer to those who do not know Christ. But the interpreters would use the sign for "non-Christian." The concept is the same, but the nuances were not. "Unregenerated" brings to mind the powerful work of the Holy Spirit and illustrates the lifelessness of the soul apart from God. "Non-Christian," on the other hand, connotes someone who just doesn't go to church or ignores God. Yes, the two words are technically the same, but one brings more depth to the table than the other.

So don't get me wrong. I'm so thankful I even had the option of ASL interpretation because without it, I really would not have gotten anything out of the conference. I think in that environment, I would have benefited more from captioning and as God would have it, I had an opportunity to make the case for it.

On Sunday morning, I decided to head to the exhibit hall to see if I could talk to a Resurgence representative about getting their online videos subtitled. I was disappointed to find out that no one was manning that booth, so I just wandered around for a little bit and read my Bible for a few minutes. Then I decided it was about time to go and find my seat for the last session. As I got up, I saw Scott Anderson, the conference coordinator, walking across the hall. I had the fleeting thought that I should thank him for the interpreters, and I would have talked myself out of it if I had listened to my inner wimp. Instead, I found my feet propelling me in his direction and before I could stop myself, I heard my mouth greeting him and explaining who I was. I thanked him for being considerate of the needs of the deaf and hard of hearing attendees and how much I appreciated Desiring God's faithfulness to come alongside of those of us who just need a little extra help.

And then I did it. I asked him, "I was just wondering, would you be willing to consider offering captioning at future events?" I explained what captioning was and how it worked and what my experience with it has been like. You guys, he took his notebook out and started taking notes! He was so kind and listened intently to everything I explained and really seemed interested when I clarified that not all deaf/hard of hearing people benefit from the same accommodations. I also explained that it's not just deaf/hard of hearing people who benefit from captioning, but people who are learning English as a second language or even people who are visual learners. He said he'd been wanting to do something like that for a while but didn't quite know how to go about it. He gave me his card and asked me to email him to continue the discussion! I was so thankful for - and humbled by - his attention; even though he was a busy, busy man that weekend, he talked to me like he had all the time in the world. Isn't that just so like the Lord?

So yeah, I know that story doesn't have a lot to do with the original question but I thought it was too sweet not to share. :) So anyway, back to business. In that situation, captioning would have helped and I am considering bringing it up for church. Right now, I sit near the front row and lipread the best I can. I think that I generally get enough out of the sermon to be able to discuss it with other people, but I miss a lot of the jokes and I know I'm not getting every single thing the pastor says. He talks fast. He moves around the stage a lot. So I wonder if captioning might enhance the experience for me. I'm hesitant to use an interpreter because I don't like drawing attention to myself that way. And yes, I'm that vain. ;) Plus most interpreters will use ASL and we've already established that that's sometimes not the best solution.

Now, I did have sign language interpreters when I was in college and I will say that in some situations, I feel more comfortable with an interpreter than with captioning. My interpreters, knowing my penchant for English, modified the way they signed so that they were using ASL vocabulary but with English grammar. And a good interpreter works with their client(s) to deliver the information in a way that best fits the client's needs. I had good interpreters.

Anyway, if I'm part of a classroom or some kind of setting that requires listening to one speaker and then going over discussion questions with the people sitting near me (church people - think midsize group/Explore-type settings), an interpreter is a good fit (although, again, I'm too vain to ask for one. Thereisaidit). With captioning, the person typing can only hear whoever is speaking into a special microphone, so if several people are talking at once or taking turns talking, it's cumbersome to pass the mic around. An interpreter can (in my opinion) more easily relay that kind of information and also convey expression. My interpreters could tell me if the professor sounded mad or if another student was confused. I can't always tell tone, so it was helpful when the interpreter would explain the mood and not just the words to me.

I've also had friends take notes for me, which was really helpful. It's hard - not impossible, but hard - to take notes and watch an interpreter at the same time. ;) And I have put myself in classroom-type settings without any accommodations before. I just lipread the best I can and I have friends who, without being asked, will jump in and start writing a summary of what's going on. They're kind like that.

Mk, friends, your turn. Whaddyawannaknow?

Paging Dr. Carter

(photo credit)

Okay, there's not really any Dr. Carter involved in this post, but I think that generally, Noah Wyle just makes things better. Why yes, I did blubber like a teenage girl when ER ended, why do you ask?

So I went to the dentist last week and I honestly don’t know whether I should laugh or cry. They used the word “cavities” a lot. And also “cost” and “insurance.” Thumbs. Down. But the most hilariously sad thing was the dental assistant. Dental hygienist? Tooth lady? I don’t know. Anyway, this is not the dentist’s office I normally go to. Why, you ask? Well, that is a fantastic question and I will tell you that the dentist I grew up going to was still asking me, at 22 years old, how school was going (I graduated) and would keep talking to me with the mask on (I’d been going to him for like 20 years. The man knows I can’t understand him with his mouth covered). So I decided it was time to move on.

I had such high hopes for New Dentist. He had an email form on his website, which meant I didn’t have to use the dang phone to make an appointment. WIN. He was recommended by my boss, so I’m pretty sure it’s insurance compatible. WIN. He actually took his mask off to talk to me and made sure I could see him. WIN. WIN. WIN.

But before I saw him, I met Tooth Lady (I know, that’s such a disrespectful term. But it makes me giggle so we’re going with it, uh-kay?). Tooth Lady did her Tooth Lady thing and scraped and x-rayed and polished my not-that-pearly-but-okay whites. And she would not stop talking to me when she was out of my line of vision or with her mask on. And I told her so. many. times. that I was hard of hearing and needed to see her when she talked. Clearly, she was not getting that memo. She would give me instructions with her mask on and I would say, “I’m sorry, I need to see your mouth so I can lipread.” She would move the mask like, a hair south, and keep talking. “I’m really sorry,” I’d repeat, “but I can’t see your lips.” Another nudge and oh wait is that the shadow of her top lip? Glory be, we’re making progress! I’d try one more time, “I don’t mean to be rude, but I really cannot see you!” You guys, I was like two steps away from reaching up and pulling the dang mask off myself! Then she’d finally remove it and we did this little dance not once but at least two or three times the whole visit. Maybe I should have started signing to her and evened the playing field!

Healthcare professionals are sometimes among the most frustrating when it comes to communication. Maybe I just expect too much out of them. I tend to think that because (in my opinion) hearing loss is a medical issue that doctors, nurses and other professionals should be best equipped to communicate with deaf or hard of hearing patients. It's not the most airtight logic, I know (I mean, I don't expect my dentist to tell me what's wrong with my lungs, or an allergist to know all about brain injuries, so no, not every healthcare professional is going to know about hearing loss), but I do have higher expectations for them. I really shouldn't, though, not when even audiologists could use a refresher course! I've had audiologists who would talk to me with their back turned or when they knew my hearing aids were out. These are professionals who have my audiogram (hearing test results) in front of them, work at least 40 hours a week with people who wear hearing aids and stay abreast of the latest hearing technology... but even they forget (or just flat out don't know) how to talk to their patients. So how can I expect professionals in other healthcare-related fields to stay on top of communication?

I don't normally ask for an interpreter or any other assistance when I go to the doctor because most of the time, they're routine appointments and they're nothing I can't handle on my own. But over the last year and a half or so, I've found myself in more situations where I wish I had requested an interpreter. I kind of wish I had had one with me in the dentist's office that day. I've had other appointments where I didn't realize until I left that I hadn't gotten quite all of the information - luckily it was never a life-or-death situation, but still, when it's my health on the line, I'd like to make sure I know exactly what's going on.

Answer and a question

Okay, back to regularly scheduled programming. A while ago, I posed a question to the big, vast internets:

If you could sit down with a deaf or hard of hearing person and ask any question without worrying about if it was offensive or silly, what would you ask?

Joey had two questions. I answered one last week about remembering what it was like to hear and now I'm on to the second part:

"Would you consider an implant or stem cell therapy to improve your hearing?"

The short version? Yes on the implant, probably not on the stem cell. I don't want my blog to get crazy political. I don't mind touching on politics once in a while, but for the most part, I'd like to steer clear of hot button topics. So I'll just say that for personal and political reasons, I'm not sure I would feel comfortable with stem cell therapy.

I have thought about getting a cochlear implant and I'm open to it if or when my hearing reaches the point where hearing aids are no longer helpful. But right now, honestly, I'm intimidated. And chicken. There, I said it. It's an invasive procedure that involves drilling into my head (I'm fighting off a little bit of vomit as I type that!), and could take several years of rehabilitation to get the full use out of it.

I also am doing well with my hearing aids. I wear two digital BTEs (behind the ear) that have four or five different settings to help me better filter background noise and help me hear what I want to hear. Why mess with what works, you know? And on that note, I've worn hearing aids almost my whole life. I could also just be feeling a little nervous about making such a big change. I know my hearing aids; how to care for them, when it's time for new ear molds, what kind of batteries to buy. I know I would learn those kinds of things too with a cochlear implant, but for now, I'm just attached to my hearing aids. They're familiar.

Having said that, I have friends who have cochlear implants and I've never once heard any one of them complain about it. My qualms about getting an implant stem more from my fears of the surgery than of the results. I have no doubt that a cochlear implant would help me and that the benefits far outweigh the initial inconvenience. Also, I'm not under any illusions. I took a hearing test a couple of years ago (and the one before that was 10 years ago!) that indicated I had lost 10 percent of my hearing in the last 10 years. We're not sure how progressive the hearing loss is, but I foresee entering my twilight years beyond the help of hearing aids - if my hearing can make it that long. I'm okay with the idea of a cochlear implant... someday. Not so much today. ;)

Okay, big, vast internets, your turn. Like I said a few weeks ago, one of the reasons I blog is to educate people about hearing loss, but sometimes I overlook things that seem obvious to me because I'm so used to it. So I'm curious, if you could ask a deaf or hard of hearing person anything, what would it be?

And by the way, I recently discovered how to find the stats for my blog and here is what I've learned:

This week, I've had 211 visitors from the United States, three from Spain and one from Finland. I've had 776 page views in the last month. Readers find my blog via other blogs, Google, The City, Twitter and Facebook.

I don't say any of that to brag, but rather to let you people know I am on to you.



Won't you come out and say hi?

Memories

A few days ago, I wondered what you were wondering. What would you ask someone about hearing loss if you didn't have to worry about sounding silly or being offensive (I find those are the biggest reasons people don't ask questions)? I'm toying with the idea of starting a regular feature... let's call it What Would You Ask Wednesdays just for fun. It's lame, I know. Go with it.

Joey had two questions, so I figured I'd answer one today and one next week.

First up is, "Do you remember being able to hear?"

Kind of. I vaguely remember watching TV without the captions on. I remember one time my grandma called our house and sang me a song over the phone. I don't remember the words, but I remember hearing and understanding her through the phone.

Aside from those two memories, all I've ever known is being hard of hearing. I remember being fitted for a hearing aid for the first time, but I don't recall actually losing my hearing. It just was what it was. In my short life, I had no idea what "normal" was, so as far as I knew, this was normal for me. I did what my parents and the doctors and the audiologists told me to do. I figured they had everything under control because I was four and they were like, THIRTY (which, of course, is like 90 to a toddler!), so I was confident that everyone was taking good care of the situation.

When I was a little older, maybe seven or so, I started dreaming of the day when I wouldn't have to wear hearing aids. I was pretty sure it would happen by the time I was 14. Kind of a random number, but it must have held some kind of significance in my little girl mind! ;) Even then, I could tell I was "different," and I didn't like it. Honestly, some days are still like that, but now they're mixed with more days where I'm okay with it.

Hope that answers your question, Joey! Thanks for asking!

Anything you want to know?

Understanding

So often people will ask me if I "heard" something. Did you hear that noise? Can you hear the TV? I used to say yes, because I could, in fact, literally "hear" what they were talking about. The sound traveled to my hearing aids and somehow to the part of my brain that understands there was a noise.

But hearing is not the same as understanding. I can hear that noise, but I can't identify its origin. I can hear the TV playing, but I cannot attach words and phrases to the din. My hearing aids help me hear, but I need more than a hearing aid (lipreading, an interpreter, captioning, etc) to help me understand.

I have pretty poor speech recognition; that is, I cannot really understand much unless I am facing the speaker and lipreading or listening to something or someone (like a song or someone reading from a book) and reading along with it. I can't understand something by hearing alone, I need some kind of visual cue to go along with it.

So while I'm flattered when people are impressed that I "do so well" communicating, I'm also a little frustrated because what they don't see is how hard I work to do so well - and they don't know all the times I am faking it! And I wonder sometimes if they think I must not need very much help because I "do so well."

I feel like I'm constantly walking a fine line with hearing loss. On one hand, I feel like I have to prove that it really does disrupt my life and change experiences for me; on the other hand, I have to prove that I am still capable of doing things, like carrying on a conversation in a crowded restaurant, for example, even if it means I have to work a little harder. I'm both more and less capable than I let on.

Have you ever felt like that? What was it like?

What would you ask?

The biggest reason I blog is to educate. As I've illustrated several times by now, I am not great at taking opportunities to educate people on how to communicate with the deaf and hard of hearing. So blogging is a way to, I don't know, make up for it, I guess. I feel like I can explain things more clearly once I've considered the situation. I figure even if the person who needed the educating has long moved on, it was still a learning experience. And I end up educating myself in the process, too, as I figure out what I could have done better in a particular situation or even why I needed this accommodation or that one.

But even then, some things seem so obvious to me that I don't think they are worth mentioning. I wonder how many things are going untold to others because I assume they know about it. Or how many things about my own hearing loss I am overlooking because I just don't think about it. So... what would you want to know? If you could sit down with a deaf or hard of hearing person and ask any question without worrying about if it was offensive or silly, what would you ask?

Travel

Last week, I flew to Vegas, baby! I really feel like saying I'm going to Vegas isn't complete without the punctuation of "baby!" A "yeahhh!" would be a nice touch, but let's not get out of hand.

I got to preboard the plane because I am hard of hearing. I felt a little bad, like I am cheating. It's not like I need physical help getting on the plane, and if I had been travelling with someone who could tell me what the announcements and such were, I would have opted out of preboarding. But the thing is that I am travelling alone, no companion to tell me if we're about to go down in flames. Although I think that would be pretty easy to figure out. But I just like someone to know that I won't be able to hear the announcements. How else will I know if the plane has to make an emergency stop or that bad weather is preventing us from landing?

I flew Southwest and they are pretty good about accommodating hard of hearing passengers. When I ordered the tickets online, there was an option for me to enter my phone number so they could text me if something came up. That little feature came in handy when the flight was delayed (twice!) and later when we had to move to a different gate. Of course, they were making those announcements over the intercom and I could hear the noise of it but not understand what they were saying.

And when we had to switch gates, I actually hadn't gotten the text yet so I wasn't completely sure what to think when about half the people at the gate got up and started walking in the same direction. I mean, I kind of gathered that we were switching gates, but I felt a little insecure not having heard it for myself. So I followed them until I found a flight information screen and found the right gate. By the time I figured out where I was supposed to be, the text came through... a little after the fact, but whatevs.

Also, while I was waiting at the new gate, I eavesdropped on a conversation between a deaf passenger and one of the Southwest employees. The deaf passenger was asking if this was the right gate for the flight and then explained that she didn't know because she couldn't hear the announcement. I talked to her for a little bit myself, very nice lady. But she looked like she felt so sorry for me when I told her that I just followed the crowd and checked the flight status screen. She had just been asking other passengers to relay the info to her and conveyed that it was sad that I had to figure things out for myself. Huh what? I mean, yeah, information wasn't as quickly or as readily available to me as it was for the passengers who could hear the announcement, but a few minutes and a little thinking outside the box and I was good to go. I didn't feel sorry for myself or mad at Southwest for having to check the board. I just did what I had to do to make sure I knew what was going on.

Yes, as a hard of hearing person, I may have to adapt a little more to my circumstances and no, it's not always fair that I don't have the same information presented to me in the same way or always at the same time as other people, but so what? It's not sad that I use my brain to figure things out on my own or consider what other resources I have at my disposal. Maybe I missed a good opportunity to educate an airline on what to do with deaf and hard of hearing passengers, but at the same time, in this case there wasn't really a need. I felt they were already doing the best they could and I don't know what scolding them for not coming and telling me which gate to move to would accomplish. I did eventually get a text from them telling me where to go and I had other resources to use.

There's a fine line between advocating/raising awareness and adapting, I think. Some deaf/hard of hearing people seem to demand that they receive information and services and attention and get quite upset when their needs aren't met in a timely manner. I'm all for equal access, but let's use our brains, too. We don't live in a perfect world and frankly, I've been noticing lately just how many of us (deaf, hearing and everything in between!) expect life to be comfortable and roses and sunshine all the time, and it's nice when we have those moments, but life in general is not like that. We don't live in a fair world and sometimes we just have to cope the best we can. For the hard of hearing, sometimes this means going without the communication assists we are used to and finding or coming up with other ways of getting the information we need. A lot of times, those other ways are just as good as having an interpreter or captioning or personal attention. Other times it will be uncomfortable or tedious or barely sufficient, but oh well. Life goes on and I would rather do hard things and maybe be a better, more adaptable person for it than to demand the easy things and live a life of constant disappointment.

Whew. End rant.

On a lighter note, Vegas was fun. I went to visit my cousin and her family. We went on the strip a couple of nights, once to walk around and the second to visit Madame Tussad's (wax museum). We also went to the Hoover Dam, went on a train ride and kicked each other's butts at Mario Kart. Good times, and pictures to follow on Facebook. Eventually. I am the slowest picture uploader ever.

I really do like to travel and my wish list for next year includes Florida and Washington D.C. Who's with me?!

What difference does it make?

I am not awesome at advocating for myself. Educating others on communication is not my strong suit. That's why I have this blog, to make up for what I don't do face to face. Maybe I'm chicken. Sometimes it is hard to stand up to someone or something and say, "Hey, could you please do this or that? I need help communicating." It puts me in a vulnerable position to do that. Sometimes it's awkward. So I lose a lot of opportunities to advocate because I'm chicken or shy or lazy or whatever.

Tthere's also a niggling question in the back of my head. "What difference does it make?" For instance, one of the things that really strikes a nerve with me is the fact that it is almost impossible to watch a captioned movie in the theater in this city. There's only one theater that has subtitles and the showtimes are bizarre. Like 11am on a Friday morning... um, hi, I have to work just like everyone else! A few other theaters offer rear window captioning, but I have yet to meet a deaf or hard of hearing person who enjoyed that experience. So in the interest of advocacy, I could write letters to the theaters, chains, management, the companies responsible for captioning and so on. But I don't because I know they'll come back with, "It's too expensive." I don't even try because I assume I'll lose.

The job I have now is the first one I had out of college. I've been there almost three years. It took me about a year just to find it. I probably applied for a couple hundred... ish jobs in that one year span. I had a college degree. I had work experience, both on and off campus. If I may say so, I was a pretty good candidate for employment and while I don't have any hard and fast proof of this, I think it took me so long to find a job because employers didn't really want to hire someone who need accommodations (all I really needed was a CapTel phone). I know deaf and hard of hearing people who struggle to find a job because they can't talk on the phone. That's frustrating and unfair and the Sheriff of the Universe in me wants everything to be brought to justice. I want to fight and stand up for people like us so that we have an equal shot at getting jobs. But what can one person do? What could I really say so that someone will listen and take me seriously?

There is so much that needs to be explained about hearing loss, but sometimes it feels like no one is really listening. Movie theaters only care about money. Employers don't want to take a small step for a valuable employee (uh, to clarify, in case my co-workers ever find my blog, I love my employer. And they love me. They've done so well in providing me with a phone, including me in conversations and they have, in the past, provided an interpreter if I ask. So many employers may be lazy... but mine isn't). Churches don't always have the resources to be accessible and even friends get impatient. So sometimes it just seems easier to let things slide and pretend I can get by without them. Little fish, big pond.

I know, I know, I need to get over this self-defeatist mentality. And a lot of my reluctance is rooted in my laziness; advocacy is hard work and I'm not always willing to put in the effort. But I wish my friends and family would go a little easier on me and not scold me so much for not standing up for myself more. What they don't understand is that if I asked for clarification every time I missed something or advocated for myself every time I felt ignored, I would never stop talking! There's just so many communication barriers that need to be torn down that I wonder what the point is in even starting. Which is kind of how I feel about my closet right now. It's so messy, what's the point of even trying to clean it?! :p

But as with the closet, I guess it starts one step at a time. One small group at church. One friend. One letter. And maybe even one blog. :)

Illusion

“The single biggest problem in communication is the illusion that it has taken place.” - George Bernard Shaw

I have been chewing on this quote lately. On one hand, it hits me in the hearing aids. Even I am not always aware that I did not catch something. Someone will say something and I'll think that I understood them perfectly, so I don't ask for clarification. Then somewhere down the line, I discover that what I heard was not what was said. Sometimes it's funny. Sometimes awkward. I think it makes people feel like I wasn't listening to them in the first place and I feel bad that happens (Yah, I confess there are times I'm not listening, or I'm zoning in and out of the conversation. We all do that. I'm talking about the times where I really was listening but somehow misinterpreted something but didn't think I had. Or maybe didn't realize I was not getting all of the information).

On the other hand, the quote hits me in the heart, too. I think so often people think that as long as we acknowledge each other with a "hello, how are you" or we follow people on Twitter, that we're communicating and engaging in community. And don't get me wrong, those things are helpful. "Hello" can eventually lead to conversation and Twitter, Facebook and blogging are great portals to connection. But we tend to treat them as replacements for face-to-face, heart-to-heart interactions. I am guilty of this. I don't reach out as much as I should. I'm intimidated by parties and large groups... even small groups require me to give myself a pep talk before heading out! ;) So I'm most comfortable and most myself in one-on-one settings or itty-bitty gatherings. I get the feeling, though, that it's the opposite for most people. It's hard to find someone who's willing to scale back and community with me (oh yes I did just use the word community as a verb. Jon Acuff would be proud).

I'm fully aware, though, that the road goes both ways. Parties and groups aren't impossible for me. I act like they are, but they're not. My new-ish digital hearing aids (I've had them for two years) do a much better job of filtering out background noise than I give them credit for. My lipreading skills are solid. Communication is not impossible in more crowded settings, so I'm wrong to completely avoid those things myself. I'm sad that people seem intimidated by me, or rather, intimidated by the idea of talking to me, but on a lighter note, in the spirit of the road going both ways, I'm the same way. I'm just like that with the young moms! ;)

Don't get me wrong, I'm not scared of them. I know they're people, too. I love kids. I love their kids. But I find myself tongue-tied. It's like I think that if I don't have children myself, then we have absolutely nothing to talk about. As if the only thing these ladies know is child-rearing and nothing else. As if I have nothing to offer them because I'm not even married. Psh. I know in my head that's false, but I struggle to get over it. I'm silly. So tell me, friends, what should a single, not-even-dating girl talk to a married mom about? That's my awkward honest moment of the day. Enjoy. ;)

I want to stop buying into the illusion that communication and community have taken place. I want to feel free to say, "What did you say?" I want to be comfortable reaching out. I want to do those things even when it's not comfortable. I want to give and be poured out. Like Jesus was.

I want to be all used up when I die. - George Bernard Shaw