Sympathy? What's That?

I don’t write in my blog enough. I use to, but my depression got the best of me and then I just ended up stopping. Couldn’t think of anything funny to write about. However, even when I’ve got a world of writer’s block in me, people still seem to find my blog and read it. I’m so, so happy about that.

I get people asking all sorts of things, like where an ASL class might be located or if a certain situation really did happen. Some want me to read books and give reviews about them (I’m not so good at that since I really only read non-fiction and most of the books they want me to read are fiction). But sometimes I do get requests to be interviewed. 

In fact, last week I received an email from a teenaged girl who “found” my blog and wanted to know if I would answer some questions to help her with a project at school. Sure! Of course I said yes. Always happy to help where I can. But, unfortunately, I couldn’t be of much help to her. See, her project was to compare the kind of sympathy for the blind with the kind of sympathy for the deaf.

The problem I ran into was that deaf people don’t really get sympathy. Rolled eyes, we get. Frustration. Angry communicators. We get all that. But very, very few people actually feel sorry for us. It’s more of a nuisance to them.

“Hi! I was just wondering if you could come speak with my class about deafness.”

“I’m sorry, what? Can you write that down? I’m deaf and cannot lipread. I need you to write for me.”

“Nevermind. I’ll ask someone else.”

Good luck with that! If you’re looking for a deaf person, you better be ready to write at least some of your conversation. Or repeat it slowly three times. (This, of course, does not include those who lipread like a pro.) Fact is, communicating with a deafie can be difficult. Not always, but often. And people don’t like that. In fact, they hate that! The thing is, deaf people don’t look deaf. You can’t decipher a deaf person from a hearing person just upon looking. So it’s a shock or a surprise or a grenade thrown right in their faces if they find you can’t handle small talk. No thanks. I’m not up to that much trouble. I’ll just move on over to this other person.

And it hurts sometimes. They leave. Sometimes they just turn and walk away without any acknowledgement. Ouch.

The blind, on the other hand, are visible. People can and do sympathize with someone who can’t see this beautiful world. Let me help you across the street. Would you like me to read that to you? What do you need? I can help!

Now, I’m not blind and, in fact, I only know a few blind people, so forgive my ignorance if I’m wrong. But they do get sympathy. I see it all the time. It’s that inevitable question:

If you could be blind or deaf which would you choose? And everyone chooses deaf. Why, “Because it would be easier. At least I can drive (you do drive, don’t you?) and I would have to learn Braille. If I were deaf, I could just learn sign language and everything would be normal otherwise.”

Ha! What’s “normal?” And as a matter of fact, if you learned sign language, who exactly would you be signing to? Are all of your family members and friends going to learn it, too? Will the world be able to cater to you if you know ASL? Dude, you have no idea what you would be getting yourself into.

Anyway, back to the question the teenager asked me (remember her from above?). Compare the two, sympathy-wise. I can’t. They’re two totally separate entities, each with unique and diverse experiences. I’d like to say that no two experiences are alike, but that’s not true. That’s what makes this blog helpful. Other deafies can read it and say, “I’ve been there.” Hearing people can read it and be baffled at how ludicrous the situations are.  Blind or deaf? Who gets more sympathy? There’s no comparison because there’s very little sympathy for the deaf population (though it’s not unfounded in some circumstances).

As for me, I don’t want anyone’s sympathy for my deafness. I am part of a great community of people who have a rich and diverse culture. I’m Deaf. I sign. It’s how I communication. Now, do I miss sound at any time? Hell, yeah! I’d do anything to hear music again or listen to my kids’ voices (of which I’ve never heard). But I don’t need people looking at me like I’m some fragile person who needs to be saved.

I never heard back from the girl after I explained the situation of deaf versus blind. Don’t know if she went to another source to try to find an answer she liked better or if what I gave was sufficient and she needn’t contact me again. That’s OK though. I don’t expect an answer. I do wonder if it surprised her. I wonder if this surprises you. Did you already know or is this news to you? 

Smile -- There Are Deaf People Nearby

"Smile!" The photographer yells just as he's going to take the shot.

"Smile," your mother says. "You look so miserable!"

"Oh, no! Here comes Ashley. Just smile and nod."

There are several different kinds of smiles and a hundred more reasons to smile. But are they real? I mean are you genuinely happy and do the sides of your mouth naturally turn up when you feel that way?

Nowadays, one can't know whether the person you're next to is actually honestly smiling or if they're faking it (or if they're constipated). And if you're "different" than the immediate crowd maybe the question shouldn't be, "Wow! I wonder what fantastic thing she's smiling about," but rather, "Why is she smiling so hard at me?" It's true!

When I walk into a place with people around, as soon as I start signing and people realize I'm deaf, they start to smile at me as they pass by. That wouldn't be such a big deal if they knew me or were just smiling naturally, but no! The people start to metamorphosis into plastics--mannequins--with, "Please don't talk to me," glaring from their eyes. It's frightening!

I guess I should be used to it after all this time, but it scares me! And this makes me have the same eyes glaring back, echoing, "Please don't talk to me!" In fact, if it's a bunch of people in the same vicinity, I might fart or something to get those terrifying faces to leave. (That DOES work, by the way.)

So here's some advice--
if you're around people, deaf or otherwise, who make you feel awkward, try not to fell obligated to smile. If you make eye contact, give them a small polite smile and then leave them alone. That's what I would prefer. Or maybe just ignore us all together. Now, if you are a skilled signer,that's different. Then by all means, approach me!

Smiles are there to help people express pleasure or happiness. Don't feel the need to do it just because you're nervous. Wait a few minutes and maybe something will happen to give you a genuine reason to smile.

Judgement is Common...Admit it!

You shouldn't judge people. It's a fact. Judging always ends in no good. But you do, don't you? Come on--admit it! There's gotta be at least one time, one type of person, or one situation where you have judged.

I've talked about "stigma" in earlier posts, but this is different than judging. With stigma, you dislike or avoid people for what they are or whatever condition they are "afflicted" with (mental illness, physical illness, whatever). With "judging" it's based on a behavior or belief of another person.

OK. With that being said......I'm guilty!!!! I admit to guiltiness (that isn't a real word, I don't think). What or whom do I judge, you ask? I have the tendency to judge my kids' school friends (or any friends, for that matter) who don't at least try to communicate with me.

I know deafness can cause nervousness, scary feelings, intimidation, etc., but I'm nice. I'm not scary. I try to chat with them, but they usually end up running for the hills when I do. Many times, the friends will ask someone from my family how to sign this or that. That's effort. I appreciate it. But it's unusual. Most are horrified. It's like that for most hearing people, but I've gotten used to it with strangers. Friends are different. 

Isn't that terrible of me? And when people judge me, I feel more and more isolated. However,  that comes with the broken ears. But, I mean they teach gorillas sign language. That's a start, I guess. Next, I think they should teach them the dance to "Thriller." But I digress.....

I don't know what that word means, but it seemed like a good ending to this blog. 

Have you experienced judgement? Were you the judgie or the judger? Tell me about it; let me know I'm not alone in this. CONFESS!

DISABLED OR DIFFERENT?

One of the strangest things I've noticed with people is the various interpretations of words as they use them. For example, take the word “rich.” Some people see that word and think of Donald Trump. Other people get raises or bonuses at work and think of themselves as rich. Still others, me included, find a $5 bill in their pocket and are on Cloud 9 for a week.

Another word that has a host of definitions is the word “disabled.” Even looking it up on various sites online, I found three definitions. But for the most part they read: “Physically or mentally impaired in a way that substantially limits activity, especially in relation to employment or education.” So, whom does that include? People in wheelchairs? Blind people? People with severe mental illness” Cancer? Diabetes? What about deaf people?

The Deaf community is a large and diverse group of people. In fact, some might think it odd, but it doesn't just include Deaf people. Hearing people from various backgrounds and careers can be part of the group, too. But let me just talk about the deafies for now. Are deaf people as a whole, “disabled”? Believe it or not, that is a question with a ton of different answers. Here’s what two separate groups might say….

Many people who lose their hearing as an adult do find adjustment extremely rough. Some never adjust. These people (late-deafened adults or adventitiously deaf) often consider themselves disabled due to being unable to willingly make the changes needed in their life. Communication can be horrible if they cannot lipread (I can’t) or never learn to sign. Many that had jobs, find themselves unable to continue on doing some things they were able to do in the past. And if that’s the way they've gone about living as a deaf person, they’re sure to think themselves disabled and, hopefully, seek help.

But tell a Culturally Deaf person they’re disabled and be prepared for a solid argument. Most believe Deaf people are not disabled—not impaired—they’re simply a minority group of people who live differently and communicate differently than their hearing acquaintances.

They can use the phone (video phones allow deaf people to do so with relative ease). They can express themselves fully using American Sign Language. They can work at most places with a little accommodation being given. They can go to school, get degrees, just like anyone else, if they’re given an interpreter. And so on and so on.

I personally fall into the middle physically between these two groups. I was born partially deaf, but my family raised me in the Hearing world since I could still hear some. I learned to speak, but often struggled to understand what was being said if the other person was not talking on my left side. However, I later lost the rest of my hearing. They describe hearing loss past 90 dB “profound,” but I’m not profoundly deaf, I’m totally deaf. There’s just nothing there.

When I became fully deaf, I started studying and learning ASL with a vengeance. I got many accommodations around the house I lived in (doorbell signaler, video phone, door knockers, vibrating alarm clock, etc). I also did a lot of research and finally went on to become a Sign Language teacher.

If someone were to ask me if I was disabled, I would have to say yes. WAIT!! Hear me out! (No pun intended.) I would say yes, but not because of my lack of hearing. I actually suffer from several severe mental illnesses that “substantially limit” my activity. So, that’s why I struggle. If I were not mentally ill, would I say I was disabled just by being deaf? Not at all. I’m not disabled by my deafness—I’m simply different.

Now, who can argue with that?

ALZHEIMER’S, LOBOTOMY, OR SOMETHING ELSE WITH MORE DIGNITY

Something many of you probably don’t know about me is that I have, at times, suffered from severe depression. I usually try to deal with it with a sense of humor. (No! Michele thinks something’s funny? Not a chance.) Anyway, sometimes other things don’t do the trick and they’ve had to resort to (GASP!) Electroconvulsive Treatments (ECT) – what most people call “Shock treatments.”) You know, I scare many people a lot because of my deafness, but mention shock and most people run for the hills…or tell me that their long lost son, Bartholomew, is calling and then pretend to answer their cell phone. That might actually work if it wasn’t off when they put it to their ear.

The point is, sometimes ECTs cause memory loss—usually right around the time of the treatment and many times for a week or so around them. I’ve never worried about it. I’ve dealt with it. But within the past couple of months I’ve had  one and I can’t express just how catastrophic the side effects were. I didn’t have “normal” side effects. I had what’s typically seen as “rare” problems. I’ve had several people compare me to someone with Alzheimer's. In fact, it wasn’t until two days ago that I even found out I had a blog. But since finding it and reading it, I feel comfortable telling you guys some of my most recent experiences and hoping you guys don’t judge me—or at least find my senility as hilarious and pathetic as I do. Of course, the best adjective is “frustrating,” but I gotta admit that it’s set me into convulsive fits of laughter from time to time, too, lately.

One of the terrible side effects has been clumsiness. For example, Kenny bought me a tea from Speedway (something I’m addicted to) and I couldn’t get the straw in my mouth. As I sat there, tongue out, moving it around to try to tackle it into my mouth, I lost control of the whole thing and poured it directly and neatly into Kenny’s crotch. It made a perfectly round circle, outlining everything that doesn’t need to be outlined and, needless to say, I lost my drink. Bummer to both of us.

Another terrible side effect is that I can’t fully moderate my impulse control. I’ve always been a sap, but when watching such things as “Family Feud” and “The Newlywed Game” result in tears and heavy, chest heaving sobs of happiness for the players, it can cause some confusion in those around me.

Then there’s confusion.

I’m writing a list of things Kenny needs from the store.

Kenny: “Black Pepper.”

I had no idea whatsoever what that was.

Or

Me to my daughter: “I’ve lost all of my clothing. Do I own a closet?”

She: “Yes”

Me: “Can you draw me direction as to where it is?”

(Sad thing is, I really need them AND I need to keep them on the refrigerator or somewhere I can find them daily, because I’ll forget where they are. Heck, I’ll forget I own a closet. Of course, I’ll probably forget I even have this information on the refrigerator anyway.)

No—I don’t feel stupid.

I got into Kenny’s car (it’s a manual) and couldn’t for the life of me get it started. I texted him in a panic.

Kenny: “Did you remember to press in the clutch at the same time?”

Oh.

But the biggest side effect has been the memory loss. Short term and long term. Recent and going all the way back to my childhood. No memory whatsoever.

I see people who are so happy to see me and I have no idea how I know them. Or I’ll see them, find out who they are, and then see them two hours later and have no idea who they are again.

I’m having a conversation with a friend. She asked, matter-of-factly, “So, what’s your middle name?” Now, how in the heck do I explain the fact that I have no idea what my middle name is if I don’t want to say “shock treatment” and ”crazy”?

The technician at the ultrasound of my hip I needed on Tuesday asked if I’d had it x-rayed yet.

“Nope.”

A couple of minutes later, as she’s typing on the computer, she looks over at me, confused, and says, ‘It says here you had it x-rayed in January.”

Oops.

The kids say that I ask them the same thing repeatedly.

“Do you have homework?”

“Yes.”

“OK”

Three minutes later….

“Do you have homework?”

“Yes.”

“OK”

After 5 times, my daughter finally writes it on a piece of paper and hands it to me. Did it help? I don’t remember.

Kenny said I do the same thing with texting him questions throughout the day.

“Where do we keep the salt?”

“What’s a washing machine?”

“Who is ___ and why is she coming over to see Natalie?”

Over and over and over.

Oh, there’s so much more I could write about. Fact simply is, I’ve become an imbecile. OK. I know it’s not my fault, but when you can’t openly explain that they drummed bolts of electricity through my head and now I have no idea who the man coming into my house at the end of the day and kissing me hello is, it gets quite humiliating and embarrassing.

Alzheimer's. That has much more dignity to it. Or lobotomy. Yeah, that’s it. I’m not stupid. I just had brain surgery recently and they forgot to put some or all of it back.

I should print that on index cards and hand them out as I venture out in public.

WHAT? WHAT? WHAT DID I MISS?

When a person is born without or loses one of his five senses, the focus by many is on the loss and how, after the fact, that poor person misses or loses so much. Whether it be losing your sense of taste and not being able to enjoy chocolate anymore (yum), losing your sense of touch and not being able to decipher if something is too hot to hold at the moment (ouch), or having gas and not being aware that the people laying on the floor around you are, indeed, laying there because of you. Any way you look at it, it’s a loss to those who have all five senses working full-strength.

However, it goes without saying that losing your sight and losing your hearing may cause the most reaction from that person and those around him. The long-lived question of, “Which would you rather lose…your hearing or your sight,” almost always renders people feeling that losing your sight is the biggest problem. And I agree it would be traumatic, but so would be losing your hearing after you’ve spent decades enjoying music, having casual conversations, and such. Both would be traumatic. And, face it, there are very few people with both of these senses who wouldn’t really care if they lost one.

People think that, because I lost my hearing after I learned to speak, I am missing so much out of life. And I agree that it takes some working on to not go totally bananas. Before deafness I was a professional and amateur actress doing musical theatre. Not exactly something I can pursue anymore – especially living in the mid-west, in a spot where there aren’t many theatres around.

Movies aren’t as wonderful of an experience, but, now being deaf for a long time, I enjoy captioned movies just as much as I remember enjoying movies when I could hear. Finding theatres that offer captions for first-run movies is a bummer though, so I admit it grates on my nerves.

Plays and musicals are definitely not as exciting as I knew them to be. Watching an interpreter (when there’s one provided) and watching the action on the stage at the same time can be difficult (though there are theatres that directly address this situation by having the signers actually on the stage acting with the hearing actors). I miss theatre. I do. I also miss being able to sing (well). I used to have a great voice. I can say that now, because I no longer can control my voice and when I sing, dying dolphins would sound lovelier. I’ve told my kids over and over how well I used to sing, but, after hearing me as they’ve known me, I think they need more proof. I will say, though, that I took one of my kids to see an UNinterpreted production of “To Kill A Mockingbird,” last year and believe I enjoyed it every bit as much as my daughter did.

Then there’s small talk. Something I can no longer participate in with hearing people…at least not casually. I never liked small talk before, but have found that it does feel a LOT more isolating when you can’t joke around with people as easily. I still have a lot of sarcasm in my conversations, but many people don’t realize I’m just being a silly smart-mouth and just think I’m basically a witch.

But last night changed things for me. Made me see something more about my life.

One of my kids was going to be playing two different instruments in the school band concert. Because there’s no choir at this school (GASP!), it was a totally musical night—not something that really interests me anymore. And, no, if you’re wondering: feeling the musical vibrations in my butt does NOT excite me. After knowing and then losing music, vibrations and lights just don’t compare to what I know those hearies were hearing.

Anyway, she was supposed to play the xylophone in one song. The first time for her. I wasn’t thinking much of it. I mean, it’s the xylophone. I remember playing “Mary Had A Little Lamb” on that thing as a kid. Ooooo. (That was a sarcastic ooooo, if you missed it).

But when it came time for her to do the song with the rest of the band, I was flabbergasted! Amazed! Tickled pink! Stunned! I don’t know much about the song, but she was the star. She was banging on the instruments, going back and forth between two of them. Her sticks were flying and all eyes were on her. This was no, “Mary.” This was like Flight-of-the-Bumblebees-fast. And she ROCKED IT. I didn’t need to hear to know that.

After the concert, people she or we didn’t even know were running up to her and saying how COOL she was and I just stood there and glowed. That’s my daughter, I would’ve said if anyone had actually talked to me. She was good. I got to see it. And, even with the absence of sound I knew, I had witnessed something truly great. Do I feel like I missed out, because I’m Deaf? Not. One. Bit.

Yes, losing a sense is very traumatic if compared to never having the sense from the start. I guess I’ve been deaf looooong enough to be OK with it, though I know many who aren’t. One of these days everything is going to be accessible to people with a variety of  situations—including deaf people. I don’t know if I’ll still be alive when that finally happens, but I do know that I’m not going to sit around and be sad about it and waste my life concentrating on what’s been “taken” from me. I mean, really! If I were doing that, I would have missed my rock-star-daughter’s solo. And that would have been a travesty.

I AM DEAF AND THAT'S OK!

Last week, I attended a deaf convention. It was for an organization that claims to focus on people with adult-onset hearing loss (late-deafened adults, LDAs). I attended a few of their other conventions in the past, but it’s been five years since the last one. I wasn’t sure how it would go. I had talked with LDAs and had always felt like the bulk of them spend 99% of their time trying to stay in the “hearing world” and “fix” themselves. I don’t see my deafness that way. When I lost the last of my hearing a long time ago, I accepted that I was then completely deaf and I went about joining the “Deaf world.”

Anyway, I thought it would be a great experience. I thought I would meet tons of people who signed and, at the same time, knew (and accepted) what it was like to be both a hearing person (in the past) and a deaf person (in the present). That wasn’t what I found though. Instead, I found CIs galore, amplified telephones, and people talking to each other a mile a minute. It didn’t take me very long to realize that I didn’t fit in there. And this upset me greatly. Seems that organization has followed the trend of such groups as Hearing Loss Association of America, and it was just a bunch of people who tried to pull themselves of as Hard of Hearing at best.

When I moved to West Michigan ten years ago, I went about trying to find the Deaf community and meeting people. I have met many, many wonderful people in the process. But one thing stands out, and that is that I did not grow up here, did not go to school here, and am not really part of the cohesive group here. Part of that is circumstantial (in general, the Deaf crowd grows up together and stays pretty close) and part of that was my own darn fault (I am extremely shy and self-conscious, so I don’t jump into groups and make friends easily). However, the fact remains that I’ve met so many great people in the West Michigan Deaf Community. I thought this other organization would be even easier.

I figured, here are people who grew up hearing or hard of hearing and learned to speak before deafness. But this group wasn’t full of “deafies.” Far from it. And, because I am a deafie, it was isolating and painful.

Trying to find out where you fit in in life and groups can be a very painful process. Sometimes things go your way and it’s easy, but most of the time you have to have some real cojones and a ton of resiliency….things I do not possess. So where do I fit in? Where do I go to find people to bond with and grow with and have fun with? Am I so scared of my surroundings that I give off an aire of witchiness? Is there something about me specifically that turns people away? Or do I just have a very poor ability of finding the right people? Not sure.

But I do know that I am Deaf. I am bi-cultural and bi-lingual and I accept that I will never hear again. I need Sign Language to communicate and do not possess lipreading skills that are worth very much. I use a Video Phone and teach ASL and hang out watching captioned movies and talking in places with good lighting. I am Deaf. And I’m OK with that. I don’t want to be “fixed.” I just want to be accepted.

YES YOU CAN!

As a teacher of ASL, I've been told many reasons (or excuses) for why a person cannot learn to sign. Sure, there's the usual, "no time," or, "too old," both of which is a matter of opinion, but very often people will tell me they can't learn to sign because of a disability they deal with on a daily basis.

I don't buy it though. Yes, there are definitely exceptions to the rule, but, in general, I don't think simply having a "disability" excludes a person from the world of ASL.

In fact, I've worked with students with various types of circumstances, including dystonia, dysphonia, MS, MD, autism, Asperger's Syndrome, apraxia, and mental retardation, and have yet to have a case where I advised them that contining to learn was useless.

Anyone can learn to sign if they truly want to. Sure, it may take a little extra time and effort, but it'll happen. So, don't let a barrier in your life cause you to miss out on this language. You can do it!!!