I want to help because I want to belong

During my first semester of living on campus, I was the last person to join the suite. There were a total of six girls sharing one bathroom and no kitchen (I'll let you use your imagination to determine how that worked out. I'll give you a hint: not well). The small suite actually had three bedrooms, with two roommates per room. The chore list rotated among each set of roommates and even though I had only been there for a couple of days, I was eager to pitch in. But my new roommate wouldn't hear of it. "Oh no!" she insisted. "You just got here, so it's not fair to ask you to clean up our messes. I'll take care of it."

I couldn't explain to her why her well-meaning brush-off bothered me. I didn't know why I, a devout disciple of disarray, was suddenly verrrry concerned with emptying the trash can. I just knew I was frustrated and I vented my feelings to one of our suite-mates, who basically said, "Well, I told her [my roommate] to let you help her clean so you would feel included!" I still don't know how someone who had only known me a few days was able to tell me something about myself that even I didn't know about, but I'm glad she did. I learned something important that day - inclusion takes on many different forms.

As someone who is hard of hearing, when I complain about not being included, I usually mean that I'm frustrated with being left out of a conversation. I am always trying to position myself strategically so that I can see who is talking. I map out the best place to sit in a room and am learning to do a better job of asking people to clarify when I don't understand something or if I'm not confident I heard them correctly. I ask people to look at me when they talk and occasionally, I've had to had some difficult conversations with friends and roommates when I've been discouraged over being left out. Being able to participate by speaking up and feeling a sense of belonging by being heard are important and, I would guess, often taken for granted by those who can hear. People who are deaf/hard of hearing and people who are hearing need to be aware of this and both parties should take responsibility to ensure inclusive communication for all.

However, what I learned in college, and what I'm still learning today, is that including others and taking steps to include yourself is just half of the equation. I want to be included so that I can participate. I want to be a part of what is going in, to be in the middle of the action, to feel like I belong. I won't always be able to be part of conversations, so I look for other ways to include myself. One of the ways I do that is to help others. I may not be able to catch every piece of the chatter around the dinner table, but I can help clear the dishes and feel like I contributed something to the evening. I can't always keep up with a group of friends, but I can pitch in by watching their kids or helping them move. I may not be able to hear, but there are a lot of things that I can do. Being hard of hearing doesn't render me useless - there is still a lot that I can and want to contribute. So sometimes, when I ask someone, "Can I help you with anything?" what I might really mean is, "Is there anything I can do so that I can feel like I'm part of the group?" (That's not to say that I want someone to just make up a task to make me feel better about myself - I would rather do something that is either genuinely helpful or nothing at all.)

You don't have to be hard of hearing to understand the desire to fit in or to belong. Can you think of a time when you wanted to participate but felt like you couldn't?

And if you are hard of hearing (or know someone who is), do you find yourself offering to help so that you can feel like you are part of the group? Or is that just me?

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?

Superpowers

WARNING: NERD ALERT IN EFFECT FOR THE REMAINDER OF THIS POST. PLEASE PROCEED WITH CAUTION.

I shared two meals today with two separate groups of people. And I realized that good Lord Almighty, my eyes never rested. Ever. I was looking at my food, glancing around the table to see if anyone was speaking, double-, triple- and quadruple-checking to make sure no one was talking and that it was okay to say something; visually roaming the table to figure out who was talking and what they were talking about and checking, re-checking and re-re-checking to see if anyone was talking to me and if I needed to react to anything (laugh when everyone else laughed, etc).

I've heard that when you lose one sense, the others overcompensate. I've always been more sensitive to smell than the rest of my family and I'm pretty particular about being touched. Whether that has anything to do with hearing loss or my own personal quirks remains to be seen, of course, but come jump to conclusions with me, will you?

As it turns out, there could actually be a parallel between hearing loss and enhanced visual perception. One of my Facebook friends posted this article about how deaf and hard of hearing people actually see differently than hearing people - not better, just differently.

"And for people who are deaf, it's been discovered that visual attention is heightened in their peripheral vision. A hearing person has 360 degrees of perception, since your brain can locate objects based on sounds. But those who are deaf, Allen says, lose 180 degrees of that perception.

So researchers think the deprived auditory areas of the brain reorganize to better process visual information. As a result, people are more sensitive to moving stimuli in their periphery, like a car speeding toward them in the street."

Do you know what this sounds like to me? SUPERPOWERS, awww yeah! How did I get from visual perception to superpowers, you might be asking. That would be an excellent question but unless you, too, have grown up on a media diet of X-Men (That last movie really spoke to me. And by "movie," I mean James McAvoy) and Heroes, I'm afraid my reasoning would be lost on you anyway.

I need to know what's going on around me at all times, so I am constantly looking and scanning and glancing and gazing and searching... these powers can be used for both good and evil. You definitely want me on your team if we're playing hide-and-seek but I'm also easily distracted when the smallest motion enters my peripheral vision. I'm always aware of my surroundings but when I'm talking to someone, I tend to look around them but not at them. I need to be more disciplined about that - with great power comes great responsibility, you know.

So there we are. I'm not just hard of hearing... I'm visually-enhanced! ;) Think there's room for one more at Professor Xavier's School for Gifted Youngsters?

(Obligatory James McAvoy picture from the Google. Just because. You're welcome.)

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.

There and back again

Soooooooooo..... apparently I was making things up when I said I was done with this blog.

Oops.

These are the facts of the case (and they are undisputed. (Not really, but name that movie!)):

Hearing loss is always on my mind. Might as well write about it.

I stopped blogging here in January. Yet this blog still gets hits and my stats tell me that people want to know about "how to live with hearing loss," "hearing aids" and "captions."

I went to Washington, D.C. last week for the Hearing Loss Association of America's national convention. Maybe someday, I'll blog about my experience but one of the things I came away with is that there is still work to be done. I met a couple of people who are affiliated with the Ida Institute, which aims to help audiologists better understand the psychological and social impact of hearing loss. This reminded me the importance of educating others about hearing loss - not just the medical aspect of it, but how it affects relationships, communication and emotional health. There were also several hearing spouses or family members at the convention - even those who do not personally live with hearing loss probably know someone who does. Hearing loss affects everyone.

Another thought I took away from the convention was the importance of staying connected. I was starting to build relationships in the online hearing loss community and sadly, I did not do a good job of maintaining those when I switched blogs. I'd like to get back into that again.

Finally, my personal burden is for churches to be accessible to the deaf and hard of hearing, so I will probably be writing a lot about that as well. This is not code for, "I'm going to convert you" or "Expect a lot of fire-and-brimstone speeches." I'm simply interested in figuring out how church can be accessible to everyone, including those of us with hearing loss. I imagine that many of the questions I wrestle with or issues that crop up won't be that different from trying to, say, procure CART for a college class or ask your boss for an amplified phone at work. So even if you're not the church-going type, I hope we can still find some common ground as we consider what it's like to be hard of hearing in a hearing world.