I tried calling a local hearing aid shop, the one that I was told would be most likely to have the type of thing I was looking for in stock and not need to order it. You would think a place that sells hearing aids and assistive devices for deaf/hoh people would be receptive to a relay call. What follows shows that this isn't always the case. I was really amazed at how rude he was to the operator, and then he apparently refused to answer the calls I tried to place calling back later via relay. And the message I left was never returned.

This really upset me. I actually started crying over this call. Which seems silly, someone hug up on me, come on, grow up. But, a friend tried to help me understand that this person did more than hang up on me. I started off the conversation appologizing for not being able to use the regular phone with the t-coil, something I shouldn't have to do is defend why I'm calling via relay, with hearing aids or not. I was excited about the idea of this thing I wanted, and when he hung up it was a denial of what I was trying to do. I was crushed, and someone else validated that I had a reason to feel that way.

My question is this. If a hearing customer called and simply asked the person to slow down would they have hung up? And without even a proper ending to the conversation. Would they refuse to even answer that persons calls when they tried to call back?

503 774 3668
RINGING 1...
(M)
(INTRO CALL PLS HLD)
Hearing Resources. this is Jay. (EXPLAINING RELAY) GA

Good morning, this is Julia Case calling, I just recently got my hearing aids and I'm still not used to using the t-coil. I am calling to see if you have a product for using the hearing aids with a cdplayer or ipod Ga.

you can use a neck loop or you can use a silhouette induction coil. in either case,
(to operator: my god, can you put up with what I'm saying Q)
(CALLED PARTY HAS HUNG UP)
(ANOTHER CALL Q GA)

what was that qq

(i was asking the man to speak slowly but I guess, he was not up to it GA)

please call back Ga.

(thank you, redialing)
RINGING 1...

Tiring... Need to do it slow... It's not like I was born deaf or anything, but going from where I was to this is a BIG change. My one friend suggested and I did a little of it today, just playing some music on the computer in the quiet room while wearing the hearing aids for a little while. I can hear the music, but not make out the lyrics. I spent some time wearing them while having conversations, this is REALLY tiring (you'd think it would be less so, but maybe that is one of those until I get used to it things). Still am asking people to repeat things if they aren't providing enough other cues for the conversation. But, I catch things I would have misted before.

The ear molds make my ears a little sore if I wear them for too long right now, I thought at one point I would just use the MUTE program and leave the hearing aids in to get used to wearing them, but my ears got a little sore.

I think some sounds get amplified more, but I really don't understand it to be honest. Sitting in the QRC, all of a sudden I was like, "What in the world is sound!?!?", and someone said it was the heat or something. It was a very low hum, but constant. And then they looked at me very odd, and asked if that was the first time I had heard it. And it was and it is annoying.

Someone scared me on the walk home tonight from class. They walked up from behind to my side and said "Hi", I caught that, but wasn't expecting it. Please don't do that!!!!! I think they realized they startled me and said something about being walking the same way... I turned off at the point to go into my building. I'm pretty sure they were trying to be polite, but it made me feel very creepy.

Will post in seperate entry about horrible relay call trying to get a neckloop to use with hearing aids.

They will take getting used to, that is for sure. It reminds me of when I was a kid and all that wax built up in my ears and no one noticed for a REALLY long time and then they cleaned it out. When we went outside onto the streat the sound was like all in my face. The street feels the same way today. I was ok in the audiologists office, but then when I got out into the street it was a bit overwhelming, even with the aids put onto the high noise setting. She asked me to keep a log of how things go, what works what doesn't work. When I an hear people, when I can't. When sounds are too soft, when they are too loud. And the programs can be tweaked. Right now I think the prblem is that I've been living with a lot of silence for a long time and my brain is saying, WTF. In the office when we were messing with things and would pull one of the aids out after it was in for about 10 or 15 minutes it would be a real sense of disorientation as the sound just stopped, and then a sense of ease returned. It is really hard to explain.

I still had trouble with communication minus visual cues, but it was a LOT better. The audiologist said that was to be expected. I still couldn't understand a damn thing they announced on the bus, can anyone?

The audiologist said I should only wear the hearing aids a couple of hours for the first few days to try and get used to them and increase the time a little bit each day. So as to not get too overwhelmed. And that she would check the programming next time. And see what we needed to change. When she did the one test to see if I could hear the music on the computer playing, it seemed as if she needed to turn up the volum in the aid, which she expected, but wanted to wait until I had time to get used to them for a while, which made sense, and even more after walking out into the streat. Damn!

Ok. I have other things to post about from today later.

Today was a bit different. We worked on the narrow passage, stairs and doors. Though, some of these required what normally would have been verbal communication between the Sighted Guide and the blind person. I made it pretty clear that I would not be able to follow verbal communication when not facing the the Guide AND blind folded. At one point I wanted to yell, "What part of DEAF don't you get!?!?!" Apparently he didn't have a set of tactile signs for the verbal communication so I made up some just get through the training. I'm really curious if there is a standard set of tactile signs for this sort of Sighted Guiding so that we can use them and I'll learn the correct ones if I work with someone else.

Today he moved at a much more rapid pace, it felt like running to me almost. When I mentioned that he just said that is because I've spent so much time slowing down to avoid falling and running into things that a normal pace seems really fast now. We went up the stairs and down them, that was different at first, but I got the hang of it. One of the things I figured out and is kind of neat now that I realize it is that I need to use more than my hands for finding things like the railings. I realized at a point if I used my hip and upper leg I could search a much greater area faster when trying to find the railing when I knew we were at the stairs. Some stairs the railing is right next to you and easy to locate. Some it is further out in front of where the stairs start, others it is lower to the ground, some it sits off to the side further. Even when you are paying attention to the marker of "last step" it is hard to not try and take one more.

I'm getting better at telling what where we are in that area based on how the ground feels under my feet, especially when we get back to the parking lot of the building, that parking lot is soft and flat like nothing else we walk on (and the building blocks the sun). I need to practice on the doors some more. Not so bad on the pull doors, but the push ones I had trouble with. Again it's a matter of finding the way to orient myself so that I'm in the right place to push on the door properly. It also looks like there is some timing involved here to not move forward too soon or too late.

As for the tactile signs that I used for the day. I used the sign for transfer, 2 fingers drawn across the hand in a sweeping motion, for when I need to transfer sides. When there are stairs, I didn't know what to do so I had him take two fingers and just tap them against my my palm twice, it reminded me of a variation of walking up the stairs. And for door I was at a complete loss for something that could be done in one hand and coped out and hand him simply lay the manual letter D on its side into my hand. Since the number of signs was limited this was ok.

I talked about the trouble of finding my bus still when there are a bunch of busses at the same stop and they gave a bok that has a bunch of numbers in it. The numbers can be flipped in a way so that you can make the number of the bus that you are waiting for. That way you can alert the driver of the bus or another person waiting to help you get the right bus. The numbers all have braille on them as well to help finding the right combination.

In other news VR sent the authorization to the audiologist for the hearing aids. The audiologist was nice enough to order them based on the promise of the authorization, so I'm glad that it was taken care of before they actually came in. Just can't wait for them to get here and go in for the fitting. My one interpreter was joking with me today when I got to class, she was out friday (the first day I was using the cane) and when she saw the cane said to me that this was new, "Got tired of falling and bumping into things finally, huh?" She's so funny.

It's been a long day.

Today the audiologist took the ear molds. It was weird getting what felt like cauking put in my ears.

The audiologist had a discussion with "Audient" and they decided that the hearing aids they offer really aren't the proper ones for my hearing loss. The place I have been going thinks they can give Vocational Rehab a similar price on a better hearing aid for me. Phonak Una AZ SP.

Right now it is a matter of finding out what the vocational rehab will do and if they authorize the purchase, the hearing aids will be ordered immediately. They said it takes about 10 days to get the molds back and then we can do the fitting and stuff.

Very neat.

My therapist asked me to join the mailing list on Psych Service dogs from

Psych Dog . org List Serv

This was the email I sent to the woman.

I have invited her to respond to the blog posting if she chooses. And will not censor her responses if she chooses to do so.

EDIT: This is out of order of the exchange, but her last response in email
so much hostility. unfortunate and unnecessary. i wish you the best my dear :)

---
I would like to join your list serve. I am a student at Portland
State University, after transferring from the University of
Massachusetts. My therapist and I have been working together on
getting a service dog for me to work with and it seems that having
contact with others who have gone through the experience would be
helpful.

I am partly deaf and do not use the phone directly, though that may
change some with the new hearing aids I am getting soon. You can
leave me a message at 888 804 4527 (a number that works for me for
hearing people to leave a message, send a fax or it can be called
with a TTY). And I will return your call via a relay service, if
you haven't worked with relay please don't hang up as it isn't a
sales call, there are just pauses while the operator relays
information back and forth.

Thank you for your time,
Julia


---

Her response

---

Hi Julia,

Thanks for writing to us. I need to share that we had a 'security
issue' recently and, while I am happy to follow the procedure outlined
below, I would also like your home telephone number. When I call the
home telephone number could you arrange for a hearing person to answer
the phone? I wish to verify that it is indeed your home phone number
and this cannot be done through TTY. Although this request may sound
a little weird, even slightly rude on my part, I feel the need to be
very cautious in light of the recent 'security issue'. I hope you
will understand and be flexible with me.

Thanks, Joan

---

My follow up to that

---

Not only is that rude it is disciminatory. I am forwarding this message on to my therapist who recomended I join your list to show why you are not allowing me to join.

Sadly I first I misread the message and thought it was from the place I am adopting the dog. As the adoption is happening through a facility that works with youth in the correctional system. What didn't make sense is they have adopeted dogs out to the school for the deaf and are familiar with relay and tty.

If your list has problems with deaf people using service dogs then perhaps it is not the right place for me. The idea of a service dog for someone with psych, vision, hearing, mobility, etc issues is to reduce barriers and if you choose to erect new ones to even discuss the subject then I would ask you to look at your motivations for doing so.

j

---

And lastly her response

my motivations are exactly as i explained. you can turn this into a 'discrimination' issue if you want to. i explained quite simply that we had a security problem recently. i am not going to get into the details of that situation. on account of this security breach i must employ strict standards for screening newbies. your phone number is 888. that could be anywhere. i have to know for sure that you are who you say you are. i'm not going to apologize for this. it is what i must do to keep my community safe.

After the first meeting today with vocational rehab they said that they would help me get hearing aids immediately. They felt that this would help even our meetings, so it could happen pronto.

They wanted me to contact back the person who did the last evaluation to get a specific recommendation on type of hearing aid. Then they would purchase the lowest cost one of that type. They are planning on using a group called Audient (the link includes a list of models they provide at the bottom) It looks like they are all digital type, but I honestly don't understand enough about this.

Also need to get confirmation from the insurance that they will not pay for hearing aids. Maria's HR department said the policy says no, but she said the wording in the benefits book is confusing.

It is surprising how quickly they are moving forward with this. It is also good, this should have been done a while back. It is also a little scary. Anything new is scary for me.

I have known for a while that it was time to give in and get hearing aids, we had it in the budget at voc rehab in MA. But, I kept putting it off longer and longer. Well, today I took another step towards correcting that, but the question will be how I'll afford them now that I don't have the help I did in MA.

The hearing test showed a pretty downward trend from the low frequencies towards the upper ones (with a slight hop the very end).

( wordy description of graph of results )

The audiologist wrote a letter stating that it would be in my best interest to get fitted for hearing aids as soon as possible and said she would work with whoever might help me with getting them. She listed it as severe bilateral hearing loss.

My doctors appointment follow up is today. I got a message that they wanted to reschedule the appointment from 2:10 to 3:10 because the interpreter got sick. So I called to confirm this, and guess what? They gave that appointment to someone else!!! So, let me get this straight, you call and leave a message at the last minute that you have to change the appointment and then that the appointment doesn't exist any more.

ARGHHH!

Update: As I was writing this entry, it took a while with many interruptions, they called back to say that they managed to work out it be 3:10 and have the interpreter. So all is going well I guess.

One dream last night was about a comercial on sexuaialy transmited diseases and it was done all in ASL with no captioning at the bottom for the hearing audiance. The people were sitting around casually discussing how they got one form or another of a STD and how they could have avoided it.

Another had to do with setting up to watch a bootleg copy of a movie within a bootleg copy of a movie. In the movie this was happening in the corner office of a large building with big glass windows and some big exec walked by bug ignored what was happening. The really odd part was that the watermark from the bootleg in the movie in the movie showed up on the screen inside at the same time the one from the actual movie did on the outside (if that convoluted mess makes any sense).

Then there a series of dreams that had to do with being tortured for information about the past and the future. Things I didn't know and couldn't answer. It was a whole set of sci-fi themes with elaborate schemes. All in all pretty tiring.

This email came into my box today from the DRC (Disability Resource Center).

Music Within is a Hollywood movie about two students. The two main characters are disabled students who struggle to make their life's relevant. It is about their trials and tribulations. The movie was shot on sight here at Portland State University with extras from our student body.

If you are interested in this viewing there is a limit time offer for free tickets to the Bridgeport Regal Cinemas.

Hoping that the tickets would be open ended so that it would be possible to wait for an opened captioned showing I ran over to get two. It turns out that they are only for tonight or two showings tomorrow (none of which are captioned).

Conversation with the young woman who was giving out the tickets at the information booth in the student center.

Me: "It's too bad it's not during a captioned showing."
Her: "They are free tickets, so it should be good anyway."
Me: "Well, if you can't hear and understand the dialog..."
Her: "I saw the previews it looks like a really good movie, you will enjoy it."
Me: "[Sigh]Sure. Thanks."

Not sure if we'll use the tickets or not. Not sure if we really can. The transportation issue is a problem here as well. The theater is not conveniently located for bus access, and with less than one day notice it is impossible to set up LIFT transportation.

It's been a while since I posted about rudeness on a relay call, but this just had to go in the list.

Ugh! And this is calling to get records from a psychiatric group home that I stayed at for over a year back in 1999/2000.


RINGING 1...
2...
3...
(M)
(INTRO CALL PLS HLD)
(EXPLAINING RELAY)
no no i dont
know who im ttalking to do im not giving
you any damn information let me
put you on speakerphone so my
director can hear
(F)yes yes i have done a
relay call before its for the deaf
right okay who is the caller can you
tell us that
(side conversations and whispering) GA
that was a kind of rude introduction don't you think qq this is julia case calling, I just want a release faxed so I can get my records please GA
--REST OF CONVERSATION CUT---

Isn't it traditional when calling a place of business for them to announce who they are and ask for the identity of who is calling? Not demand it? So many times in a relay call there is this hostility about that. This sort of "Who goes first type of thing" In a normal phone call, doesn't the person being called normally say "Hello" at the very least when answering the phone to let the other person know they at least picked up the phone?

The "I'm not giving you any damn information" is just silly, no information was asked for. We hadn't even gotten to the point of saying hi yet. The operator had simply tried to explain relay for christ sake. Luckily, the director remembers me from the stay there and was able to help with the situation. But, that is rarely the case when things like this happen.

Normally the streetcars here in Portland aren't a problem when I'm walking because they are on the street and I'm on the sidewalk. But there are places like on campus where there the tracks aren't on a 'street'. Well, I was walking a bit close to the tracks yesterday and suddenly there was a streetcar next to me. It came from behind and I never heard it. I was on my way to the weekly math colloquim. It isn't the first time this has happened and I should know better, but it does.

Theater in Vancouver, WA, this week (until the 16th).

Google directions say approx 15 drive

Trimet site says 64 minutes travel time (each way) for the same trip.

Life is just not fair.

Since the 'local' theater seems to be a bit fickle about what movies will show as open captioned I've decided to keep a log each week here. I've noticed inconsistencies in the past, but this silliness with the Harry Potter movie has pushed it to a need to keep track.

So.... For the Bridgeport Village Stadium 18 theater in Tigard, OR.

08/10 - 08/16 Harry Potter 5 (Canceled)

Current Listings

08/10 - 08/16 I Now Pronounce You Chuck and Larry
08/17 - 08/23 Underdog
08/24 - 08/30 The Simpsons Movie

Called the theater...

Seems the people who provide the open captioned version switched out which movie would open captioned at the last minute and now it is "Now I pronounce you Chuck and Larry" The person at the theater did not know when the Harry Potter movie would be available at the theater in an open captioned format.

I can't believe it took me so long. Well part of it was we didn't have a land line for a long time. When we moved into the campus housing we decided to get the land line because it wasn't that much more than just having the internet service.

I have to say that making a VCO call is just the bomb. Very easy! And the people on the other end seem less confused than with a standard relay call.

I've made more phone calls in the last 2 days (yesterday was when I configured the VP to use VCO) then I have in weeks.

I feel silly for not having done this sooner.

I received some info in the mail from the people at this website. I thought I might pass it along and let people know.

Please read and respond if you are a VRS user or know someone who is (or will/should be).

Thanks.

x-posted a few times.

First at UMass when I called the number they had listed there was no answer and when I asked about it I was told that when the offices where re-arranged the TTY was left in an office that was unused so no pays attention to it. Yet, the number stays listed.

UMass Financial Aid

Now with Portland State when I call the TTY number no one answers either. When I call on relay and ask if someone can answer the TTY since it would be easier over TTY than relay the woman tells me that she doesn't know what that is and doubts that the office even has that ability. I asked that they take the number off of the webiste if they don't actually have a TTY.

Portland State Financial Aid

These places really need to understand that if they are going to list TTY numbers that someone should monitor, or at the very least be able to monitor when warned that someone will be calling on the TTY. Otherwise it is useless and misleading information.

This is the site

note at the bottom there is a number for TTY or Relay. This makes little sense. Relay would go through the number number. And the TTY number would be answered, but no one was there. So I called with relay and it was some od sort of message service. I didn't save the call.

So I called the main number and got yet another number for the TTY, and was told to wait until they could set up the TTY before I called back.