Why Church Is Getting So Much Better

Before around 2001 or thereabouts, I was hearing impaired to the extent that it affected my life some, but not every second of every day. Then, I went from a person who wears hearing aids and says, "What?" every once in a while, to a deaf girl. Specifically, a late-deafened adult with very little ASL and who was also blind. So I was not an easy fit for Deaf Culture or hearing culture. What that meant was that every single social interaction became a struggle. One thing I remember instantly letting go and thus missing a lot is the little banter you have with people like the grocery clerk, the waitress, the bus driver, your neighbor, etc. It took too much energy with not enough time, so I rarely could do that anymore.

I also noticed how talking to a deaf person makes other people freak out. I actually figured this out while working in the child life department at the children's hospital. Part of my job was to go door to door of patients rooms each shift and explain what services I could provide and see if they needed anything. I told them I was hearing impaired soon after meeting them, (I'm referring here to the parents of the patients). Sometimes communication was a struggle. Sometimes I could tell that they were in such a stressed out position that struggling to communicate with me was not something they wanted to bother doing, and I understood that. Usually I could come back later or trade with someone else. But I started to notice that I communicated really well with the families who did not speak English. We had many Hispanic, Vietnamese, and Russian families. I communicated with these families so well, that I often got sought after to be the one to communicate with them. (We had interpreters, of course, but I'm talking about stuff on the fly. Like when they wanted to tell the nurse something about their kid.) I figured out that the reason I did so well with these families, is because both of us were used to having communication struggles and were used to the patience it took to figure out what the other was trying to say. We were not self conscious about it, we just worked and worked with each other until we figured it out. Other people seemed to get very flustered and anxiety ridden and gave up soon and tried to get out of the situation quickly rather than stay there and work it out. This was when I figured out the unique thing about deafness that is not so much of a problem with blindness. You have to depend on other people to meet you halfway, and many times, they don't want to. With blindness, there is a bit of that when you need someone to give you visual information, but people don't seem to have as much trouble doing that as talking to a deaf person. With deaf people, it seems like they spend more time trying to figure out how to bolt than in trying to communicate with you.

The other problem socially is that most people make friends in sort of a macro to micro progression. They meet in some kind of larger group of people with common interests such as a church or a class or workplace. Then, they may break off into a smaller group with people they may find especially enjoyable to be with or because circumstances put them together a lot. For example, a church committee or a class group project or your cube mates at work. Then, finally, one or two of those people may become an even closer friend and you may go out to a restaurant or a movie. Finally, you may start hanging out at each other's houses and such.

Many disabled people almost need an opposite approach. One of the only ways I can have a true interaction with a hearing person without my disability getting in the way is one on one, in my own home, where I am familiar with the surroundings and can control the background noise and am not hindered by accessibility issues and transportation. The problem is, it is really hard to get people over to your house like that when you face barriers at every step above that. You need to know that friend at the one-on-one level first, so that they can help you be included in the more macro social activities. Yet, you can't get that person without the macro social activities. Do you see now why I am such an Internet whore?

So, church. I've been trying to go to that church since around 2000. At first, the timing of the bus I took to get me there took me so early that I had to wait outside for someone to come unlock the doors. Not so fun when it is cold and rainy. I tried to ask for help, but did not get any. (And I even found out that the minister at the time lived in my same apartment complex! He could have given me a ride! But I don't know what happened there.) But I ended up not going so much. About the same time I moved, the church split into two services and that made it much easier to get there. So that problem took care of itself. So next, I'm in the church, but can't see and hear anything. When D goes with me, he helps me a lot with that kind of stuff. But when he isn't there, I'm a bit lost. Soon, they did get an FM system which helps hearing impaired people hear whatever is on the PA. It is the suckiest FM system I have ever used, and I'm not sure why. But the thing gets so poor of reception, that it was actually hurting my ears to use it. I did a lot of experimentation, and finally found that I have to scope out where other people who are using the system are sitting, and sit as far away from them as possible. This is not easy when you are blind, and it took months. But people in general sit in the same places, so I finally have solved most of that problem.

Then there were the doors. The locked disabled access doors that D needed and so do I because I walk with a double stroller that I would rather not carry up an entire flight of stairs, thank you. It took a YEAR of what felt like being a CONSTANT NAGGING BITCH, and sometimes even making the point of hauling my two children and then the stroller up and around the building, but it seems like this year, that problem is solved. The doors have not only been unlocked, but propped open. Also, along these lines, D has not been able to participate in anything at the parish house next door because it was inaccessible. Not that he has been needing to a lot this past year, but he has expressed an interest in helping out the high school youth group, but never could even get into the door to talk about it. Well, I was so happy that just last week they have built a ramp.

Then there was, the snubbing. Snubbing probably isn't the right word for what was happening, but I'm not sure what a better word is. People just wouldn't talk to me. It is one of those things that is hard to put your finger on. Like there are a thousand little ways that people disregard you. And if you looked at each one, you may not think it is a big deal, and some individuals may have even had a very legitimate excuse that has nothing to do with you, but when you put them all together over time...you can only conclude that a large number of people really don't have any interest in getting to know you. I asked people out for coffee and I got turned down every time. I would go up to people and talk and they would make a hasty exit. Once this woman came up and talked to me and I was fiddling around with my hearing aid from having been using the FM system. I said, "I'm sorry, my hearing aid wasn't working and I didn't get all that you said." She said, "So you just let me go on talking when you couldn't hear me?" I said I got the gist of what she said but I might have missed some things. She made a hasty exit and has never talked to me again. I have even said hi to her by name and she doesn't even say hi back. I used to go home from church after this stuff would happen again and again and just feel like crap. Part of it was just asking myself what I was doing wrong or that was so awful? If the Unitarian Universalist can't deal with me, who can?

Yes, I may be strong-willed and have way-out-there opinions and be over-analytical and overcomplicated. Yes, there may be legitimate reasons not to like me, but these people didn't know me well enough to know those reasons. I may be rough around the edges, but I am nice and friendly to people and I know that I am basically a good person. This, and other interactions in the outside world that were similar, led me to believe that this is mostly a disability thing. I used to make friends when I could hear, now I can't. I did not change personalities overnight. So, this has become a quest. I was determined to figure this out.

So if you are going to ask me why I bother going to such a sucky church that makes me feel bad and is a bit slow with the accommodations...the answer is because there is nowhere else to go. Other churches and other community groups may be better or worse in particular areas, but it is the same all around. And as one guy who goes to my church who uses a wheelchair put it, "At least hear they don't try to heal me and tell me that if I accept Jesus and ask forgiveness for my sins, then I'll be able to walk." This is what it is like to be disabled. If you want to participate in something, you've got to work really hard to figure out how. It can take years to gain accommodations and acceptance. The UU church is no different in this respect, I was probably a bit overzealous in thinking that it would be.

So, first I took the summer off just to get rid of my bad feelings and get a fresh start. That worked. Then, I remembered how when I taught special ed we would work to get kids with very significant and multiple disabilities included in mainstream extracurricular activities. Sometimes, you really had to convince the parents because they were afraid of bullying and were afraid that their kid would just sit there with nothing to do. Very valid concerns. The first thing I would tell them (after telling them that we would not tolerate bullying) is to keep bringing them. Don't give up after the first day. We may have trouble finding ways for the kid to participate, but if he keeps showing up, we will find ways because ways will present themselves. Showing up and being present is one of the best things you can do to become one of "us" instead of "other." It sounds obvious, but a lot of times when things are so unaccommodating that you wonder why you are even there, you forget that just being there is helping to make progress. No one is going to ever think about how to accommodate a deafblind person if she isn't sitting there every week struggling to be included. So, I have gone to many services where I could not hear the sermon, see the pulpit, nor did I talk to a single person there. But I plopped myself there every week and struggled.

Next, I would tell these parents my friend, Susan's and my "1 out of 100" rule. Susan and I made it up to encourage ourselves to keep looking for employment. We would apply and apply and apply for jobs and see our nondisabled friends get job offers after just a few applications and find work within weeks or months. It seemed like no one would ever hire us. But we always said that there was one employer out of one hundred who would give us a chance, and we had to just find that one, not worry about the other 99. The more we applied for jobs and went out on interviews, the closer we would be to finding that one. (Okay so sometimes it is one out of 500 or even 1000, but the point is, they are out there.) This is why I often freaked my parents out by applying to jobs in remote places like McAllen, Texas or somewhere. I was casting a super-wide net.

The same principle applies in social situations. Many, many people are going to be rude to you, or be nice to you but never regard you as friend material because they can't see themselves hanging with a disabled person comfortably. But 1 out of 100 will end up being a great friend. I would tell these parents that by showing up and meeting lots and lots of kids, 99 of them will learn not to be scared of their kid and/or be rude to them, and one of them will end up being their friend. That is one more friend than most of them currently had. And lots more people that they could at least feel comfortable around.

So, with the church, it is the same way. There are some people there who are just weird around me and can't talk to me. But there are others who are very nice to me. And it is better than a 1:100 ratio, in fact. So, instead of sort of shying away from the not so nice ones, I'm going to try to seek out the nice ones. So I give myself little assignments to do to try to seek them out. I tell my self to go down to the social hall after service and I am going to stay for ten minutes no matter what even if no one says a word to me. Okay, did that. Next I am going to go and talk to two people. Getting blown off by two people doesn't count. I actually have to keep trying until I find two people that will have a nice little conversation with me. Okay. Mission Accomplished. Next, talking to the kids' nursery teachers and the RE director was fine but that doesn't count, they have to talk to me. Now you have to talk to two people that you don't know or have never talked to. Okay, did that. Good.

So that is kind of where I am, and it is working. I feel good about church now. I've also started letting the kids play in the outdoor playground for 15 or 20 minutes afterwords and just hang. As usual, I am separated from the other parents because they can just sit back and watch their children and I have to keep track of mine by actually getting on the playground with them (mine are so young yet, too). Sometimes no one talks to me at all out there, but just the other day I talked to another mom for a good 20 minutes. She has daughter two months older than mine and so she came onto the playground as well. So that was nice. (Someone asked me if my kids and hers were triplets when they were standing together. I almost had a heart-attack at the thought!)

I still get snubbed on occasion. A couple of weeks ago I tried to get help to participate in these "cottage meetings" that they are having about selecting a new minister. There were about 20 or so sign up sheets where people invite a few people over to their house. I needed help because I couldn't see sign up sheets, I needed to figure out where people's houses were so I could see which I could go to via bus, and I wanted to find out if I could bring my kids. This woman made an announcement about them and I went up to her and asked for help. She put her finger up like just a minute while she finished up with someone else. Then she looked at me and walked off. (See? I don't know if that was purposeful or not. Maybe it was nothing, but it was just the way she did it .) So I asked someone else for help, this was the same person from above who didn't like that I didn't hear her. She just gave me a blank stare and walked off. I asked a third person for help, and she listened to my questions and said, "Oh, it is going to be really hard for you to come, isn't it? Maybe you should just sit this one out." Then she made a hasty escape. Now I was on a mission so I asked a fourth person to help. This was  a guy using a wheelchair. He just laughed and said that he has been trying to get someone to help him as well, because he can't see well either and needs to ask about whether people's houses are accessible. We both laughed (me and this guy have talked about this little snubbing issue before) and we were both just like, "Forget it."

So they probably won't have the pleasure of my company at the cottage meetings. But the good thing about this is that because I remembered the 1 in 100 rule, I wasn't really bothered by it. By making myself keep at it,  I had already talked to a few nice people, so I could just blow this off. Baby steps, I guess.

In general, church is also better because I really like our new interim minister. You may remember that our last interim minister got me all upset and made me feel like a freak because I complained about some of these accessibility things. He had a serious car accident before we could talk more and was not able to return. I like the new minister, she brings a nicer, more spiritual vibe or something. She seems "holier" for some reason. She grew up Jewish, so she brings that flavor in as well, which I find interesting.

Also, I am teaching again this year, which is really what kept me going last year and sort of fed my soul during my times of very hurt feelings because of the snubbing. This year, I am helping the lead teacher one Sunday a month. I just had this really fun time on my Sunday a couple weeks ago because the lesson was held outside and it was about animals and after I walked around with the kids and we looked at a pumpkin patch and a peach tree and an apple tree. The apples were ready so they would tell me which one they wanted and I would STREEEEETCH and try to figure out which one they wanted me to pick. I don't think I have ever ate fruit right off a tree before. It was a nice day.

Next Spring it will be my turn to be the lead teacher again. I will be doing a unit on Islam, which I am very excited about. We have a guest Muslim priest(??? sorry, I forget the right word) and even get to visit a mosque for Friday prayers. That is totally babysitter worthy. I know zilch about this topic, but have a good curriculum to work from. I'm hoping I don't screw it up too badly, but I'm just going to tell the kids that I don't know very much about this and that we will be learning together. I am really liking the assistant director of religious education who I've gotten to know a bit in the last year or so. She has helped get my classroom moved in to a more hearing impaired friendly classroom, so I'm happy about that. I'm also going up to the audiologist tomorrow to pick up my own FM system which has been in the shop and repaired, so I am going to try to use it in the classroom and see if that doesn't help me during class discussions.

So, little by little, church is feeling more like, well...church should feel like.

Comments

[Lisa M]

Everytime I come here, I am totally amazed.

I think that is REALLY neat.

[shannon]

I hope you can find some way to be included in the new minister search process though. I mean, what you are saying here is terribly important input for the process. You and the other guy in the wheelchair are the very people whose opinions should be considered. If you can't find a way to get to a house meeting, maybe you could write up a list of important considerations to have a group read at one of the meetings?

****

And you know what else? I think about this issue of you communicating with people a lot. I think, "wow, I adore Lisa and I feel like we are really good friends and if we met in person, we would probably have trouble communicating--how weird!" It's one of many--but an important one--reasons I am sticking with the ASL with Nat. I want us to be able to chat as freely as possible one of these days!

******

And finally--geez, did I feel just the way you described today at the mom group at the park. It's all white, all suburban all bio, all straight moms and I think they feel like maybe there's a right way to act around me or something and they don't know what it is. But I would be happy if they'd just include me in the complaint session about stretch marks or whatever. I'd nod and smile and sympathize. But I felt like such a space alien. I spent a lot of time talking to a Black home daycare teacher and playing with her all-Black group of kidlets instead. Which fact probably made the mom group moms think I was that much weirder. I say it's U.S. society that's weird if we can't just all hang out and talk to each other on the playground.

[AmericanFamily]

I am horribly shy and have a difficult time meeting people and making friends. I am going to try to follow your example and put myself out there a little bit more. Maybe you and the other guy should start your own home meeting to discuss the new pastor.

[shannon]

American Family has an excellent idea there.

[Pamela Denchfield]

Hi Lisa,

Found your blog while I was researching gender ratios from pregnancies during the Holocaust. (A long story....) Started reading and couldn't stop. Love your writing!

Thank you for your wonderfully thorough description of your unique experiences in the UU church and the other groups. I am in a different UU church (not a member, but I started in 2002 and lately became very involved). I'm glad to read your posting because I need to keep your experience in mind when I usher visitors to their seats and call members and friends with requests or for "church business."

Beyond enjoying the rare UU connection, I wanted to say I really appreciated your expressing that "showing up" is a way to become one of "us" instead of the "other." And I love your "1 out of 100" rule!

I look forward to more of your writing.

Pamela

p.s. I'd love to chat with you sometime via email about UU or whatever other similar interests we might be exploring. I work full-time but I will reply when I can (within a few days, usually). Thanks!

[wen]

hey there,

sounds like you have the right attitude. my mom always told me when i was a kid that having a few good friends was much better than being with a bunch of superficial people who are not really "friends." i've come to know that she's right.

i've found that the lesbian community has been really good about insisting on timely accessibility issues. i'm not disabled, but i have definitely had my share of differently-abled friends.

you can be darn sure i scout out accessible campsites when i lead a camping trip--no reason to stay home when there's an option. my partner and i are currently looking for a wedding venue. we are making sure to get something accessible--on principle. if no one needs the accomodations, great. but if they do, they'll be there.

i'm not sure where you are located, but check out www.sharedadventures.com

i've volunteered for them before, at their day at the beach event. it's a ton of fun, for everyone. i was a safety kayaker. :)

if you are open to going to a women's event, check out the michigan womyn's music festival. there are sign language interpreters, dart (which is the disabled access rv parking/camping area) and even though it's in the middle of nowhere, michigan, it's a safe, fun environment for everyone.

good luck and hang in there.

[Amanda]

I live in a foreign country where I speak very little of the language. I am always touched by how willing to meet me halfway people are. People I communicate with are very willing to slow down their speech, use simple words and pretty much play a game of charades with me everywhere I go - either on the street, or at the doctors, or during social events.

I think you are absolutely right that people have to be willing to meet you halfway. And I hope more people out there will start doing it. I certainly have been very thankful for the willingness of the people here to do it for me.

[Lisa]

Thanks, Lisa. My name's Lisa as well. My disabilities are Asperger syndrome, ADHD, a chronic physical illness, and an invisible problem in my back. I found your site because I got silly and googled "i am so afraid to find a job." (except not in quotes). I like your attitude--no, employers won't usually hire us, but maybe there's the 1 in 100 and you have to keep looking. I'm terrified to apply for jobs and can hardly do it. I tend to fail at jobs, anyway. Not all the time, but often. And I have lengthy periods of unemployment. So people don't want to hire me, and I'm having a hard time keeping myself indoors. My parents don't believe in Asperger Syndrome but have to help me, and they hate it and take it out on me.

Anyway, to change the subject, I'm afraid I blew off this very nice deaf woman who was trying to make friends with me about 18 months ago because she talks oddly and I have this central auditory processing disorder and it was hard to understand her speech and I didn't think she'd understand and would get annoyed and get her feelings hurt if I had to ask her to repeat things frequently. People don't usually understand when I try to explain things like that (having to do with my disabilities) so I just go away a lot of the time and don't bother.

Now I realize, from what you wrote, that she might actually have been having trouble making friends. She seemed so successful to me in all ways, this didn't occur to me at the time. Thanks. Good luck to you.