My husband and I traveled to a beautiful MN resort this past weekend. It was a weekend away, around our 15 year wedding anniversary and we were there to learn. Chad and I went to a conference called 2015 Collaborative Experience for Parents and Professionals … Continue reading Full Access
I mentioned in my last blog post that we were going to have an undercover mission with a friend of mine and her husband. They went to the theater knowing they did not offer captions but just wanted to see what the reaction would be when they asked about them. What happened next just shocked me. My friend did not talk just used sign language and her husband did the talking. They asked if captions were available and THEY DO HAVE CAPTIONS and provided my friend with a Captiview device. I was shocked and even more confused after all of this. I am very glad that my friend got to enjoy the movie and understand all of it. To make matters even more confusing it was the same manager that helped me helped her.
I called the theater again trying to get a hold of a manager. I had no luck doing this earlier. I actually got the manager and it was the one I talked to. He apologized that he didn’t give me captions. Then he went on to say that a “Full Deaf” woman came in today and I gave her captions. She couldn’t even talk so she was full deaf and needed them. It was thank you for your apology and now go stick your foot in your mouth. I told him I wrote a letter to the editor and he was aware of this, I guess the paper contacted the theater. I also told him I was waiting for a response from the theater and he told me he got my emails but just didn’t know what to do with them. That same night I received an email from a district manager asking some questions about the day, time and person we talked to. I responded right away to the email. A step forward I was contacted??
Next morning I get alerted that my letter to the editor was published. Had to run out on my lunch break and pick up the paper. Not everyday you are published in the paper, well maybe if you write for the paper. Here is a copy of what was written and published:
We are in a day in age where there is equal equality to all…but is there? I was at the Kandi Carmike Movie Theater this past weekend with my husband. We were going to a movie on his birthday. I happen to be hard of hearing and I asked if there were a captioning device I might use for the movie so I could understand the dialog. I was given the response from a manager that those devices take lots of paperwork, signatures and time so we don’t bother with them. This really upset my husband and I. Paperwork is such a pain that we can discriminate an entire group of people from the movies. A simple no would have worked but to go on that it is a pain and burdensome was unneeded. I guess my money doesn’t need to be spent at the Carmike theater anymore. November 21, 2014 the HLAA (Hearing Loss Association of America) had a landmark deal with Theater Owners of America that come 2015 closed captioning for the Deaf and Hard of Hearing and Visual Description for the Visually Impaired will be required of all theaters. I look forward to this day, and I look forward to the day when the pain of paperwork and time doesn’t discriminate a group of people. We wouldn’t think of having a theater not wheelchair accessible, not all disabilities are visible.
I have not heard anything from the theater until today. I was contacted by CCAC (Collaborative for Communication Access via Captioning). After corresponding with CCAC they sent an email to the district manager and copied me on the email and response. The email was sent and I thought AHHH now we wait. A whopping 5 minutes later we have a response from the district manager that they have captioning and are in the law complete with pictures of the Captiview devices and the headphones. CCAC sent another email back to them thanking them for their speedy response but alerting them as it is nice they have the devices they are denying them to certain patrons if they don’t look deaf enough. They asked the theater to issue an apology. This email hasn’t been answered.
So again we wait…..
My last blog post was about the movies. I wrote that I am not a big fan of the movies because of the dialog being hard to understand. I am looking forward to trying captions in a movie theater. So what do I do over the Thanksgiving weekend, attend a movie. My husbands birthday was on Black Friday. I partook in the shopping frenzy with my daughter and Mother in-law. We arrived back to my in-laws house to find my husband laying in bed looking bored. Asked him what he wanted to do, he responded the movies. Sure lets go, we have built in babysitters here. Let’s head to the movies.
Instead of going to our local theater we went to a large national chain theater that was nearby. What happened next just shocked us both. I noticed they had a sign for the assistive listening devices, the headphones. They don’t work for me, not enough decibels That was fine I was doing this for my husband. We went to go get some popcorn (which is way to expensive) and there was a manager standing there. My husband looked at me and suggested we ask him if they happen to have captions available. His answer should have been a simple NO. The answer we got was “No, captions are a pain. You need to have paperwork and signatures. It is a pain to try and please everyone.” I was shocked to say the least and my husband was mad. We just looked at each other in amazement and went into the movie. I couldn’t get this out of my head. Would this manager dare say to some individual in a wheelchair that it is a pain to have a ramp or a row of seats that they could fit into. I ended up leaving the movie to go back out to talk to the manager. I wanted to know what this paperwork was, did I have to fill something out? When asked this their response was, “No, it is just a pain and we have nothing to offer you.” I inquired about the assistive listening devices wondering if they even had them and again I was told, “we have nothing to offer you.”
How do I deal with this? It has been near a week and I am still in shock. I have worked at numerous jobs where I deal with people and customer service. I would never dare tell someone that they are a pain and what they are asking for is burdensome. I am really hoping that this manager was shocked by the amount of people at the movies that day and was just stressed. I really hope he doesn’t have this attitude all the time. I wanted to give the theater time to respond before I take this further. I want to hope this was a huge misunderstanding and there would be an apology.
I tried to contact the theater, they don’t make it easy. Their website has a form to fill out and a manager will get back to me within 2-3 days. Been a week haven’t heard a word. Tried to call the theater, can’t get a regular person on the line. I wrote a letter to the editor of the paper alerting them and educating them about this, hasn’t been published…yet. I have now written a letter to the corporate offices for this theater chain. They have no working email or phone number that you can contact them with. Snail mail will have to do in this circumstance.
An experiment will be taking place this weekend. I have a good friend who is deaf. She communicates with me by voicing and reading lips. I am trying to learn more sign, so we can talk through sign. Her husband is a sign language interpreter. They are going to go to the same movie theater as we did. She is not going to voice only use ASL with her husband. They are going to inquire if they have captions available at this movie theater. Do they have anything they could offer her to use. We are very interested in what the outcome will be. I hope that I had a stressed out manager and they will be given good customer service, only time will tell. I am hoping for a simple NO, we don’t offer them at this time. We do have headphones you could try and use.
I want to give the theater time to respond before I take this further but with each passing day my blood is seeming to boil a tad bit more. I wonder what A Day at the Movies Part 3 will have to say.
Yesterday a group I am part of, The Say What Club, had the topic of going to the movies. What seems like such a fun past time to many can seem like a waste of money to some, me included. Why, simply because why would I want to pay upwards of $10 to sit and watch a movie miss half or more of the dialog and sit and think why did I go to the movies. Which in turn makes it more than a year since I have done just that.
What we were talking about with the Say What Club was closed captioning at the movies. I think this would be wonderful. I love watching movies but it is done at home either Netflix or a rented movie and the captions are always on. I enjoy having the sound streamed to my hearing aids but I still need the captions to get what I miss. I need to fill in the blanks. My family is used to the words on the bottom of the screen. My son is behind in the reading game so maybe the captions will help some or he isn’t as behind as he could be.
The next obstacle is where to go for captions. I am in a small rural town but very lucky we have a theater in town. It is a one screen but upgraded to digital theatre. Our theater does have assistive listening devices but I tried once and it didn’t do anything different then my hearing aids in fact it wasn’t as much gain as I am used to. Great for someone with less of a hearing loss but I need the captions. Our next theater is 30 miles away and I contacted them and the person I talked to wasn’t sure they had them. Well that isn’t encouraging. I have heard there is captioning at one theater that is 1.5 hours away. Is that really accommodating the deaf and hard of hearing population that I need to drive 1.5 hours away to watch a movie. Just doesn’t seem fair. Maybe a price to pay of living in a rural area, or maybe an oversight that this needs to be offered.
After all this discussing on the topic of movies yesterday I went to a movie last night. It has been a long time since I have been to our local theater. My daughter wanted me to go with her to the new Hunger Games movie, Mockingjay Part 1. We went on our mom and daughter date and it was fun. I thought an action movie I don’t need to hear the words it will be nonstop action like the other two movies in the series. Not quite right with this movie. Lots of dialog and I missed over half of it I am sure. I didn’t fully enjoy the movie aspect of the night but I loved accompanying my beautiful daughter to a film she had been looking forward to seeing. It was fun watching her be tense and jump at certain parts and just soak in the movie. There will be a day in the not too distant future that she won’t want to do this with mom so I will grab the chance now. I look forward to the day we can rent the movie and we can watch it at home. She will love to watch it again and I will love to watch it and “hear” the words.
This has been the week of movie talk. With the Say What Club, with my daughter and with a huge understanding between the HLAA (Hearing Loss Association of America), Alexander Graham Bell, and Theater Owners of America that captions will be offered in all digital theaters starting in 2015. I was so excited when I read this, how exciting. Article from the LA Times. I wonder if this will take place in my neck of my woods. I wonder how long it will take. I wonder if there will be heels dug in and protest. I just wonder….
Take care all and as they sing in one of my favorite musicals, Annie….”LETS GO TO THE MOVIES, LETS GO TO THE SHOW….”
As I look at the calendar I start to get tense and look back at this past year and I marvel of all the changes that have been made. This upcoming weekend is the Tae Kwon Do tournament when I noticed the crowd was more hushed, I noticed I couldn’t hear a TV, or my kid’s voices. I am not sure at this moment my hearing dropped or it was slowly dropping and it kind of hit me on this weekend. Either way it has been a learning curve with hearing aids, and accepting this new normal.
I look at this past year and I thought I would make a list of 10 things I have noticed and learned. I was able to get a hold of my audiogram from 1996 when I was 19 years old. I was in college and attending the University of Wisconsin and studying Communicative Disorders. I had a conductive loss at a 30-35db loss. Which in all reality I could have been wearing hearing aids back then. I am now 37 and I have a mixed loss that ranges from a 60-90db loss. That is a big difference. Will it change from this point, I don’t know but if it does I know there will be frustrations but I feel I will be better equipped to handle it.
- Always carry hearing aid batteries with you. I learned the hard way this last week. I decided to leave my bag out in the car after lunch and I was subbing in science. Well both hearing aid batteries went dead. I had about 3 hours of the day left to go with no break to run to the car. Thank God we were watching a movie very little talking and listening had to take place. It made me realize I need to learn to speech read more then ever which will be my number 2.
- I hear with my eyes as much as my ears. I need a big boost in speech reading. I can do a word here or there but I need a lot more practice. I lack in this area greatly. Although I have done a few experiments on my own while listening to someone I really do concentrate on their face. I will close my eyes at times and my comprehension really goes down. I need that visual; I need to see it as much as hear it.
- Hearing aids are not miracle aids. Yes I really rely highly on my hearing aids. I recently told a friend who is Deaf, I can’t sign proficiently, I can’t read lips for a full conversation. I rely on the hearing I have. I have become great friends with the phonak and starkey hearing aids I own. I don’t have perfect hearing with my hearing aids but they make up for a lot of lost ground.
- Ear molds are better then domes. This is an individual thing but wow a big difference for me. I was given domes then got moved to closed power domes in my hearing aids. They annoyed me and I could hear better with my finger in my ear with them. When I bought this up I was told it just took time to get used to. I then went to another audiologist and they told me my hearing loss was to great for the domes and that is why I was having the problem. I was told I needed the ear molds and I sure can tell a difference. What I learned from this, you know what you need. If it doesn’t work for you and you have a finger in your ear, it isn’t working. I will never use domes again. You can change doctors nothing is set in stone.
- You are not alone. Family and friends supported me and listened to me but I needed to find someone who understood me. I have found friends and the Say What Club. They understand hearing loss. They can laugh with you and help through the tough times. I urge anyone who is going through a trial to seek out a group that understands. As a fellow SWC friend says you need your tribe. You need the people who walk in the same shoes as you do. Seek them out!
- Car radios suck. Ok so I am blunt and to the point. Maybe this again is just me. I try explaining to my husband I can hear the music and the beat but I very seldom can make out the words. I can hear parts of words but it kind of sounds like a broken foreign language. I will keep the radio on I like music but the words nah can’t do it. But I have never been able to really listen to the music and get all the words so maybe this isn’t such a new thing.
- I have become to love the assistive listening devices I have. I was very stubborn at first I didn’t want to try these. I felt that I was not profoundly deaf or hard of hearing so I didn’t need these. I was wrong. I use the streamer on my TV a lot. It blocks out everything but the show or movie we are watching. It makes a big difference. I still use the captions but I seem to be more engaged in a movie if I use it. Otherwise I seem to lose focus and I am off doing something else. When we are watching a family movie I need to be involved and enjoy the time.
- Keep my family in the loop. My children know when I can hear them and when I can’t. If I say I can’t hear you they are really good at waiting till we are somewhere else and then ask me. My kids understand my hearing aids. My husband will hook up and ask if I want the streamer on the TV or for the music we are listening to. They support me and that makes such a big difference.
- Sign language- I know some but I need to learn more. When we are in a situation and I can’t hear my kids I would love to be able to use more sign. Today in church I used sign to my son and we understood each other. I hope another class will be offered soon in my area.
- Pimping and blinging my hearing aids have become an obsession. Heck if I can go and see all these fun glasses at the eye doctor why do hearing aids have to be beige or dark brown in my case. I can decorate them and maybe no one will see them but I know they are there and sassy.
So here is my list of 10 things I have learned this past year. I wonder what my list will look like in another year.
On June 10, 2014 I was invited to attend a ceremony at Starkey World Headquarters in Eden Prairie, MN. I traveled the near 3 hours to the headquarters, I was full of nerves, and excitement since I had no idea what I was to expect. I was presented a HearStrong Award. It was a wonderful honor and experience. I hope I can get into words what I experienced and what transpired on that wonderful day.
HearStrong is the nonprofit that is held by the company EarQ. It honors individuals that have overcome hearing loss and decide to do something about it. The way they heard about me is they happened upon one of my blog posts on the SWC Blog. I was given a gold medal and a framed certificate from two great gentlemen from EarQ and from Tani Austin from the Starkey Hearing Foundation. I was accompanied by my good friend Allison and my daughter Greta. It was an honor I will take seriously and keep advocating all I can. HearStrong asks you to take the challenge to be a Champion and bring attention to hearing loss and help make this stigma the that hearing loss affects all not just a certain generation. I do take this challenge and I hope to be kept accountable that I will continue to do so.
After a wonderful ceremony and pictures we were handed over to Starkey. I had no idea what the rest of our time there would be but I was told it would be worth it. We were told to drive to another building (huge complex) and they would take care of us. Well what I didn’t know and was a surprise is I was given a hearing test and given a new set of hearing aids and lots of fun gadgets to go with them. I was in shock, in no way was I expecting anything at all. It started out with a video of the inside of my ears. The neat part of this whole process was that my daughter and friend were with me and asking question and taking pictures of all of it. Greta wants to do a project on hearing loss and hearing aids for the county fair this year. I think she got lots of first hand info on Tuesday. I was then given a hearing test by a Starkey Audiologist. We were then treated to lunch. Anything we wanted at no cost to us. Another high point for my daughter, you can tell she is 11. Impressions and molds were made next again pictures and my daughter and friend were right there. They got to watch the whole process and ask any questions they wanted. In fact my daughter got to come home with a few ear molds that were made. They are now prized possessions. Now the waiting game started. We waited a few hours while custom made hearing aids for me. I was given XENO RIC with a custom earmold around the receiver. Much more powerful than my last pair. During the waiting period my daughter was able to have a private meeting with Tani Austin about the hearing missions the Starkey Hearing Foundation have done all over the world. Greta is inspired and would love to go on a mission with them someday. Who knows anything is possible.
Finally at 6pm my hearing aids were done. I was also given two additional items, one is the SurfLink Media which plugs into my TV and I can listen to the TV wirelessly directly into my hearing aids. Very cool item and having fun trying it out. I can even have the TV on mute and I can listen to it at a good level for me and not disrupt anyone else in the house. My other gadget is the SurfLink mobile. This is a remote I can use for my hearing aids I can change programs and change the volume. I can use it as a bluetooth for my phone so again the sound is wirelessly sent to the hearing aids and I don’t need to use the actual cell phone. The one feature that I think is the most fun is I can stream my iPod and listen to all my music through my hearing aids instead of taking them out and using earbuds and complaining the volume doesn’t go high enough.
It was a day I will never forget. I am still waiting to wake up from an incredible dream. I thank my friend, Allison, for taking 14 1/2 hours away from her family to be there with me to experience this once in a lifetime day. I thank my daughter, Greta, for being so grown up and asking questions and being engaged. Her project for the fair should be blue ribbon all the way. Most of all thank you all for reading my writing and keeping me accountable.