My husband and I just got back from a few days in Maine, where we went to celebrate our eighth wedding anniversary. We stayed at an inn on the coast that we’d enjoyed when we were first married. The place is wonderful: great food, beautiful rooms, friendly staff, and a large common area with a fireplace. We had agreed that we should prepare to make adjustments in order to keep my auditory system happy, including eating in our room if the staff couldn’t find us a quiet place to sit in the restaurant. We figured that the whole point was to be together, and that we’d have a good time, no matter what. We hadn’t gone on vacation in years, so we were determined to have a good experience.
And we did have a fun time, but it took some doing. Ultimately, we had an even better time than I’d hoped for, and I learned a lot along the way.
When we checked in on Monday, my husband explained that I have hearing difficulties, and that we would need a quiet place to have our meals. The nice young man at the check-in desk said they would do their best—not exactly a commitment, but promising.
When we showed up for dinner, my husband explained that they needed to turn the music down if we were going to be able to be there. What he meant was “off,” but what he said was “down,” and I didn’t bother to clarify. Of course, I should have said, “In order to be here, I need you to turn the music off completely. Would you do that?” But I didn’t feel confident enough to risk an initial refusal and continue the conversation. Instead, I lapsed into the denial of “Well, it never actually works for me to converse in a place with music playing, but maybe this time, it will.” Yeah, right. That was my first mistake.
The person who seated us did not get it. She tried to get us to sit at the far end of the restaurant, away from the speakers, which didn’t help, since the room was quite small. I don’t know what she was hearing, but my ears weren’t picking up any difference in sound whatsoever. So, I said, “You’re really going to need to turn the music down in order for us to stay.” She said she would.
We waited: one minute, two minutes, three minutes. Still nothing. I was starting to max out. When she came by again, she said, “So, how is that?”
I was shocked, but still in good enough shape to say, “Did you actually turn the music down? I hadn’t noticed.” I even made eye contact—which, as you know, is a big deal for me. It’s kind of critical to do that when you’re needing to get politely in someone’s face, so I managed. When she registered what I’d said, she looked at me as though she expected me to back down. I didn’t. I just kept looking at her.
And then my husband chimed in with, “Could you please turn the music down?”
Unfortunately, that’s when the woman said, “No, that’s all I can do,” in a tone of voice that would have been more appropriately applied to the statement, “I’m so glad you’re enjoying your meal. Let me know what else I can do for you.” I’m a classically trained musician, and I can read vocal tones like no one’s business. This woman’s tone was so inappropriate to her words that it was unnerving.
My heart was steadily dropping toward my shoes, and believe me when I say that I really need to work on that response. It doesn’t help at all. And here’s where I made my second mistake: I really wanted to up the ante about the music, but all I could feel was “What’s the use?” and I let that feeling win. And for my husband’s sake, I decided to stay. So, I put my earplugs in, and doing so made the music recede quite nicely. Of course, I had trouble hearing my husband, and had to ask him to get close to my face and repeat himself a bunch of times, so it was very tiring, but I sat there because, for some strange reason, I thought I should.
Once the food was served, we were able to begin our meal. There were only two other couples in the restaurant, and they were very soft-spoken, so I rationalized that things could always be worse. Of course, in the process, I completely ignored that I was doing way too much work for what should have been a relaxing dinner.
And then, as if on cue, things got worse. The chef came out and started yacking, in a loud voice, with the man at the table next to us. I could hear him quite clearly through my earplugs—that’s how loud he was. And he went on, and on, and on. After awhile, I just started staring at him, and it wasn’t a polite stare. He made eye contact with me a couple of times, but he just kept going. I very badly wanted to say, “Could you please lower your voice? We’re trying to enjoy our meal here.” But giving into the waitress’ refusal to turn down the music had already diminished my sense of power, and I didn’t feel comfortable or centered enough to confront him. Plus, my auditory system had long since started screaming, “Why the hell are you still in this room?” I was not exactly at my best.
Failing to confront the loud chef was my third mistake. It only made me feel more disempowered.
I found myself eating my meal really fast, just to get out of there, and I left in short order. And worse, I was absolutely exhausted and miserable for the rest of the night. I was upset, I couldn’t think straight, my stomach hurt, I felt nauseous, and every muscle in my body was tense. I was wiped out.
When Bob got back to the room, we agreed to figure something else out for the next day. And we did. He went to the restaurant manager and explained the situation, and wow, did he get results! They agreed to seat us in our own little area of the restaurant, with a door that would shut out the sound from the rest of the place. When we got there the next night and found that no such arrangement had been made, my heart sank again, but when we inquired, the waitress said, “Oh, yes, we’ve had a change of plans. We’ve decided to serve everyone in the grille, and you can have the entire dining room all to yourself, without any music playing at all.”
Can you imagine? The silence was so sweet. I was in heaven. We had a wonderful meal and ended up feeling very refreshed. And the next morning, they gave us our own little dining area for breakfast, away from music and conversation.
So, when all was said and done, we had a great time. We ate delicious food. We walked on the beach in a snowstorm. We sat by the fire and read. We watched movies. And we relaxed. When Wednesday arrived, it was difficult to leave, but I felt better in my mind by the end of our time there than I’ve felt in awhile.
On the way home, we debriefed, and I realized how much I’d learned about self-advocacy from the whole experience. Here’s what I realized:
a) I have to plan ahead of time. For instance, I cannot wait until I show up at a restaurant before I explain my situation and negotiate what I need. So, before we go on our next vacation, I’m going to write a letter to the manager wherever we stay, explaining the accommodations I need, and getting agreement on what they will provide. That way, even if I show up and they don’t give me the accommodations right away, I’ve got a basis on which to argue without having to start from scratch. I can take out my letter and say, “Look, I explained the situation well in advance of coming, and you agreed to make accommodations before I ever showed up. So, how do you intend to fulfill your part of the agreement?” And I can just keep asking that question until I get what I need.
b) I cannot try to be in an environment that does not work for me. Ever. I cannot sit in a restaurant with music playing and expect to converse. I cannot filter out the sound when people nearby are talking. I cannot filter out the sound when people in another part of the room are talking and their voices are carrying. It does not work. Those days are over. I’ve been learning this lesson, over and over, in all kinds of ways. I end up in pain, pure and simple. If I’m by myself and the room isn’t too loud, blocking my hearing works more or less well. If I’m with someone else, though, blocking my ears is beside the point.
So why did I slip into denial at the restaurant in Maine? Why didn’t I ask for the music to be turned off? Why didn’t I say at the outset, “You know, I need a place away from music and conversation in order to enjoy my meal. Can you help me make that happen?” Why did I make these compromises that are so bad for my health? I wasn’t just avoiding confrontation. In the past, setting these limits has made me feel isolated and so, in order to avoid that feeling on our vacation, I put up with things that made me sick. But when the accommodations finally came through, I saw once again what was possible. I saw that I have a right to go places and enjoy myself like everyone else, without rendering myself ill, and that I can advocate for that right. My disability is not purely physical. It’s largely socially constructed, and there are ways around it.
Self-advocating doesn’t mean that every place will become accessible to me, but I increase the odds considerably by insisting on being included, and by trying to work with people to make that happen. After all, I don’t need to go out all the time. I’m on friendly terms with my solitude. But I would like to be able to go out once in a while and have it work. There are a couple of restaurants in town that seat us in quiet areas, away from ambient sound, where we can enjoy our meals. I know that it’s possible, and I need to remember that.
c) I very badly need to undo the cascade effect that begins with failing to ask for what I need, or with giving in to refusal and dismissal. Once I let go of my power and back down in one instance, it gets that much harder to find my power again when I need to stand up in another instance. It wouldn’t be so terrible if these instances were spaced days, weeks, or months apart, but when you’re dealing with sound, they can be spaced moments apart. If I give in and say, “Okay, I’ll compromise in this one instance, even though it won’t be good for me,” it’s nearly impossible for me to meet the next instance and say, “Okay, that’s enough.” Instead, I just keep backtracking, and that only makes the situation worse.
d) Being disabled makes self-advocacy a lifelong, daily necessity. I hadn’t really wanted to face this fact before, but it really hit me full force this week. I hate being confrontational face-to-face; so many of my adjustments to all of my disabilities have been along the lines of, “Don’t mind me. I’ll manage.” That just isn’t going to work anymore, because in truth, with my auditory system in the shape it’s in, taking a “don’t mind me” approach is bad for my health. It would be like acceding to pull myself by the arms down the street rather than use a wheelchair and insist on curb cuts. My auditory processing condition may be an invisible disability, but that doesn’t make it any less serious or put me in less pain.
e) Self-advocacy includes allowing others to speak up on my behalf when they are available to do so. I’ve resisted this idea, because I always feel that I should be able to do everything myself at all times, but that’s really based on an illusion.
The fact is that no one does everything alone all the time. Everyone gets help. The help is often invisible, because the world is set up for typically able-bodied people, but a great deal of the time, non-disabled people get plenty of help. As long as I don’t give my power away to the person speaking on my behalf, or allow asking for assistance to make me feel less than competent, or come to depend on someone else’s voice more than on my own, I’m okay. After all, Moses let Aaron speak for him sometimes, right?
And if no one is there to speak on my behalf, I am fully capable of finding the inner strength to do it myself. I’ve been doing it more and more as I realize my right to be fully a part of this world. Practice makes perfect, and I am seriously practicing.
f) It’s very difficult to do self-advocacy, emotionally as well as physically, so I need to reduce my worry and tension over it. I have to breathe, relax, and choose my words carefully and to best effect.
I never imagined that I’d have to do any of these things. My life is not how I’d once thought it would be, but whose life is? My life is what it is. All I can do is meet it head on, knowing that I have a right to respect and inclusion, just like everyone else.
© 2011 by Rachel Cohen-Rottenberg
Its great that you have understood your condition and how to work around it. Sure sounds like an unusual hotel though, thats the first time I’ve herd of anyone being given a whole restaurant to themselves.
I’m completely with you in that once you back down, you start to lose your power. I struggle with this myself too.
Thanks, Robert. We were lucky that it was January, and that there was a major snowstorm going on, and that the place was nearly empty. They were going to seat all the people in the smaller area anyway, so the larger dining room was available by default. It definitely is an unusual outcome, though, so we’ll be going back in years to come!
Although I’m sorry to hear that you had such a bad experience as part of your getaway, I very much appreciate your sharing the details of what happened and what you learned from it.
As I was reading about allowing others to speak up for you and about planning ahead, I was thinking that part of planning ahead could be talking to the person who will be with you about when and how you would like them to help you. Then, if he or she does need to speak up, it would simply be part of the plan that was already in place for that eventuality.
Congratulations on your anniversary!
Aspergirl Maybe, your idea about planning ahead regarding how and when I let others speak up for me is brilliant! My husband is very open to these sorts of ideas. His wedding vows to me were about supporting me in becoming the person I am meant to be, and he loves it when I come up with ways he can help. He wrote the vows himself, with no prompting from me, so I know he meant them! He often reminds me of them, especially when I’m feeling overwhelmed. So this will be another great tool in my toolbox.
And thanks for the congrats!
Congrats on your anniversary, and that you were able to negotiate a solution so that you could really enjoy your stay and your meals. It’s great to learn to be a better self-advocate.
I think my Zyban-induced tinnitus is slowly going away, after not taking it for three days. Don’t know if I should start taking it again, on a once a day basis instead of twice. We’ll see.
I’m kinda proud of solving my own noise-stress problems too, which involve a major move to a small town, an upper apartment in an old house instead of having 14 slamming steel doors and loud-talking neighbors in an apartment complex. I took a carload of stuff there today, and will be moving in on the 29th. It’s going to be sweet, and quiet, and will even cost me less! It’s been a long time since I’ve been so excited about something.
Thanks, Clay. I’m really glad that your move is going well and that you’re so excited about it. It really is energizing to take care of oneself.
It escapes me how you can go to a restaurant and demand, even if politely, that they turn the music off, if there are other guests as well. If there are no guests, that’s another thing. If they have a separate, private dining area, that’s another thing again. If it’s something they had agreed to previously while making your reservation, that’s totally all right again.
But in this case, I think it is also an adjustment you need to make, or make alternative arrangements e.g. eating in your room if a single polite request fails. If another guest had have insisted on the music for their anniversary, would you still have pushed ahead?
Maybe it worked only because they were afraid of a disabled discrimination lawsuit. Mad America, who knows.
Personally, I would pick my battles more carefully to avoid irritating others without a significant reason and maximise the chances of indeed getting the accommodations that are essential.
First of all, we didn’t demand anything. We asked. Very different. There’s nothing wrong with asking, and asking some more, and asking some more, until you get what you need, or arrive at an impasse and decide to strategize around it. Typically able-bodied people do it all the time. If someone had made a special request for anniversary music, I’d respect that, but that’s not what happened. The next morning, my husband went to breakfast alone and asked if they could turn the music off, because he wanted quiet. The waitress was happy to do it, and no one complained. We’re talking about an inn by the ocean. People go there to have a quiet time.
Anyway, why should the disabled person always be the one to make the adjustment in these kinds of situations? Why should the preferences of a typically able-bodied guest override the needs of a disabled guest? That’s just another way of saying, “Stop taking up so much space and bothering all these *normal* people.” If you’ve got a bunch of able-bodied people in the room, who can go anywhere, any time they want, without having to worry about getting sick, or having their access blocked, or looking forward to things that turn out to exclude them, why should they *not* be asked to adjust for one hour out of their lives so that a disabled person can sit in a restaurant and have a meal? Why should the disabled person have to go to his or her room (or inside his or her house) and stay there? The implications of what you’re saying are very troubling.
My entire life is one long series of constant, minute-by-minute adjustments, and my ability to be out in the world like other people is greatly restricted. I don’t think it’s too much to ask that others adjust themselves. I have the right to negotiate, to ask for empathy, and to be treated as an equal. No one will get what they want all the time, but at the moment, the scales are tipped decidedly in favor of the typically able-bodied. Or do you think that disabled people shouldn’t be allowed to go to stores and restaurants if it bothers the other patrons? We get to have a social life of some kind, too. It’s called “inclusion,” and we get to say what’s important.
And as for a potential lawsuit? Ha! Neither of us ever mentioned the word “disability.” And if you knew my husband and how incredibly diplomatic and kind he is, you’d know that there was no animosity involved at all.
Rachel, I’m re-inspired (Is that a word? If not, it ought to be) by this to insist that BB’s environment be adapted to meet his needs. So often we go out and try to ‘make do’, and like you say, it doesn’t work. It’s so hard that we stay home a lot. Why should we, though? If he can’t adapt to ‘them’, ‘they’ should adapt to him.
Right on, bbsmum!
Nice job standing up for yourself–your lessons learned are immensely useful. What I don’t get is the game-playing on the restaurant’s part…if they think your requests are unreasonable, why not just refuse, why say they’re going to do something to help you and then not, especially when it’s not that much work for them?
Anyway, happy anniversary!
Hi chavisory,
Thanks for the good wishes!
In terms of the interaction in the restaurant the first night, I’m going to be charitable here and assume that the person didn’t understand what “sensitive hearing” really meant, and actually turned down the music a barely imperceptible notch. I couldn’t tell, but that was my interpretation at the moment. Of course, it could have been that she was determined to act in a polite manner (because it was her job), but not actually do anything to help. Given that her tone never changed during the interaction, I’m thinking that she didn’t feel comfortable saying “No” outright, and so she kept on with an even, helpful tone even when she wasn’t being helpful, hoping that we would just get discouraged. It was another example of that non-Autistic indirectness that can be so confusing. In this case, it seemed to be a personality issue rather than a hotel-policy issue, because no one else treated us like that at all. It’s unfortunate that, on the first night, we ended up dealing with the person least likely to help, but it got better from there.
Also I realized that quite possibly, if there isn’t a manager there, the employees may not be *allowed* to make decisions like that. (I once got reprimanded for not having the irritating Christmas music on one morning in a cafe where I was working, after I simply forgot to turn it on but then noticed that everyone seemed happier without it. It wasn’t too loud, it was just really downbeat, irritating Christmas music….) Which would be stupid and unfortunate, but in that case I’d just say sincerely “I’m really, really sorry, but they won’t let me do that.”
One of my favorite bars in the city, where I used to go with a group of old college friends, is one where they have a huge lounge that we usually had all to ourselves if we got there early enough, and they were always happy to turn the music down if we asked…of course it probably didn’t hurt that we always bought a whole lot of martinis….
I had the same thought–that the woman didn’t have the authority to turn down the music. It would be have nice if she’d said so, but I realize that I’m dealing with a culture gap here.
First, congrats on the anniversary, second, congrats on figuring out how to self-advocate. I was mentally comparing your experience with what I’ve seen happen with a quadriplegic friend. It was interesting to review her responses/requests and compare with yours.
As for the inappropriate vocal tone, that is actually a conflict resolution technique that is taught to people in customer service. Really.
Now, whether that hotel taught her, or she learned it at a previous job is unknown. What I DO know is that it does frequently work when you have a customer making an *unreasonable* demand. (I worked in customer service for years. This technique was taught to us, and I’ve seen it in various conflict resolution books as well.)
It really does work in the NT world. The issue here, to me, is that it was used inappropriately. I mean, any technique/procedure/policy/action/belief has the potential for abuse. So I’m not going to agree that the technique was wrong. I do think she was using it in the wrong circumstances. She should not have sought to force her decision on you. She should have lowered or turned off the damn music. Turning off the music is not hard.
Anyway, I hope that clears up why she used that tone of voice, although not why she chose to be confrontational about the situation. I’m voting for her being completely ignorant of what auditory processing disability means. I want to ask, did you say ‘sensitive hearing’ or ‘auditory disability’. ‘Sensitive hearing’ seems to me to be such a wishy-washy term that she may not have realized the seriousness of the problem, and came to view it as a personal preference type of thing, not as an actual physical issue. That’s my guess.
“It really does work in the NT world.”
Wow…things I would never have imagined. Does it really? Because it makes me want to strangle someone….
Whenever I go on courses for work (not customer services!) they often cite a study (Mehrabian, 1967) that says clues from spoken words make up 7% of what is understood, clues from voice tone make up 38% and facial expression make up 55 %. Obviously they mean NT understanding. Words said kindly and with a smile will be ‘read’ as helpful. Sorry, Chavisory… it’s just the way our brains are wired
Incidentally, if I see BB with his fingers in his ears I turn the CD volume down, but he often keeps his ears blocked. My idea of ‘turned down’ isn’t always his, although I genuinely have reduced the volume. Turning it off is the only answer.
That’s just amazing to me. I would estimate that spoken words make up about 80-90% of what I understand. I *can* get information from vocal tone, facial expression, and subtext, but only if I’m very familiar with the person and the context; from a stranger, it’s useless.
Wow, Bonnie, this is such helpful information! I had no idea that people were taught these things in customer service, but it makes sense from the standpoint of dealing with unreasonable people. As you say, though, the skill was applied inappropriately in this situation.
We did not use the term “auditory disability.” We used the terms “hearing difficulties” and “very sensitive hearing.” I think you’re right that those terms aren’t strong enough. I’ve often said that my condition is a lot like being deaf; although it would seem to be the opposite, because I can hear everything unfiltered, it ends me up the same place, unable to take in words and respond to them purposefully. If I were deaf, would I just say that I have “hearing difficulties”? No way.
Of course, I’m coming from a disability standpoint, in which I assume that if someone tells me they have a difficulty and need assistance, I assume that the difficulty is severe enough to merit the request. But I think that many typically able-bodied people come from the place of assuming that everyone is fine, and that difficulties can’t be that difficult, and they need to be told that we’re off the map of their expectations.
I resist doing it, because I feel like it blows my privacy way too often to have to describe my disability and the consequences of ignoring it, but that’s another piece of being disabled that I have to come to terms with. I have to be able to say, “I have an auditory disability that makes me unable to be in a restaurant with music or a lot of conversation close by. If I try, I become very ill. Would you be able to help me find a quiet spot to have a nice dinner with my husband?” If they’re not familiar with disability, they really can’t imagine the difficulties involved, and in order to be taken seriously, I really have to make those difficulties clear.
Rachel your post exemplifies for me the struggle we all, as humans, share. To know thyself. You seem to have done this with far more depth and dignity than most. I know many an NT person who will never come close to having the insight you do.
I also wanted to pop in and thankyou for your wonderful comment on my blog. It had been spammed for someone reason and I only discovered it this morning. Now up on blog. Thanks again. Take care.
Thank you for your kind words, Sharon. I’m glad you found my blog comment helpful. There is so much to learn along the way, isn’t there?
Hi Rachel, me again. Just wanted to let you know I have dedicated my current post to you. Thanks again, Sharon
Wow, Sharon! Thank you.
Why do you have to disclose that you will become ill? My feeling is all they need to know is that A. you have a disability or problem and B. what you need to fix it. It may be a case of TMI for the NT.
I do agree that difficulty or sensitivity is too weak. Most people think of a difficulty as ‘something that can be overcome with effort’. Sensitive is kind of an overused word; I think it became watered down with overuse.
Chavisory, that technique often works when someone is being really irrational and uncooperative and just won’t stop. It really should be used to defuse a situation, rather than as a solution in and of itself. I mean, it’s fairly obvious when someone is just manipulating the sitatuation to make the other person go away.
People tend to mirror the actions and emotions of the other person in a dialogue. So, if you model calm helpful friendlyness, the other person may ramp down their hostility. It’s hard to be hostile to someone who really wants to help and shows it. (Key part: wants to help.)
Also, if you get angry back, that just escalates the tension and hostility. Studies show when confronted with aggression, people get first get defensive then hostile and aggressive. So being helpful and kind, again, defuses the situation.
And I’m making typos so I’ll sign off here. Sorry about the customer service lecture but working in a call center is how I really learned social interaction. I’d observe my successful coworkers, mimic their actions and try to figure out why they were successful.
Hi Bonnie,
I was thinking that being brief (but clear) about the consequences of being in a room with too much sound would make the disability more visible. I’m not sure that “auditory processing disability” is going to be all that compelling, given that I am able to hear and speak; the difficulty with APD, autism, and other “invisible” disabilities is that we can appear to be functioning just like everyone else, and people don’t understand why we can’t just maintain that level of functioning consistently. After all, if I can talk for 10 minutes, why not an hour? I’d rather not explain it. So I’m thinking that telling someone the consequences of a lack of accommodations would make it clearer that there is something physical going on without having to get into the nuts and bolts of the disability.
But maybe it is TMI. Actually, I’m sure it is, because just saying “I have an auditory processing disability” is also TMI, when you get down to it. It’s painful to have to disclose medical information face to face with people, in my daily life. I don’t mind it on my blog, because there are no social forms to contend with, and I’m amongst other disabled people. Folks come here to listen, get support, give support, and learn. It’s harder being in situations in which bringing up a disability can be met with resistance, pity, disdain, or disbelief. Here, I’m among fellow travellers; in the rest of the world, I mention that I have a disability, and I automatically put myself in the “Other” category.
Lots to think on here…Thank you!
Hi, Rachel.
Thank you so much for sharing your experience. The main thought that popped into my head as I was reading was that, in true Aspie form, you have used your considerable intelligence to address the difficulties that are placed into your experience. You made use of a variety of strategies (earplugs, asking for a lesser accomodation, having your husband speak on your behalf, talking with different individuals, etc.), analyzed what worked and what didn’t and how all of it felt, and made conscious choices about how to proceed in the future to make sure your needs are being met. I wish it didn’t have to be this hard, but I am impressed by your insight and resourcefulness. You are an inspiration.
Diane
Thank you, Diane. Sometimes, I think I was fortunate to have grown up in a crazy house, because I had to analyze and strategize constantly in order to stay safe and sane. If I’d had the choice, I’d have skipped those fun times, but I learned a lot of skills that have come in very handy in my life, especially in terms of disability. I wish it weren’t so hard, but then again, life is difficult for most people on the planet, and there are people with much worse difficulties than mine.
Rachel,
I love this post and I love your book. I’m only on page 71, but reading your story makes me appreciate you all the more. I hope you and Bob had a very happy anniversary. It sounds like you did once you worked things out.
Aloha,
Sue
Thanks, Sue. Glad you’re enjoying the book!
Hey, good job advocating for yourself. Where in Maine were you? I would have loved to meet you if you were in my area, but am guessing you probably didn’t have much time and energy to spare!
Kate
Hi Kate, I thought about getting together with you, but our time was so short (and the weather was so snowy!) that I decided to save it for another day.
Hi Rachel, I woke up this morning and found a lot of comments on my blog. I hope you didn’t think I was ignoring the discussion, but the time zone difference means I was asleep at the time! You made an excellent case, so it’s not like you needed backup, but I just wanted you to know there was a reason for my silence
bbsmum, you are the nicest person ever! Not to worry. I know your time online is limited, particularly when you’re sleeping.
I appreciate your followup comments to the discussion.