Quiz? AMEN! Are you Cued?

Chloe automatically retrieves a dropped grocery list in the store. I don't have to prompt her first.
Chloe automatically retrieves a dropped grocery list in the store. I don’t have to prompt her first.

This past Sunday, Chloe got up about 1/3 into the service and stood from a down/stay. My husband looked at me strange and raised an eyebrow. I mouthed and also signed, “Amen“. His expression changed immediately. He had forgotten that Chloe cues off of “Amen” and gets up and prepares to stand/brace for me to leave. I’ve never taught her “Amen” means LET’S GO. She figured this out on her own after being with me so long and because we DO go to church on Sunday.

I’ve discovered she doesn’t even need a lot of time to learn to cue on a new word.  I’m teaching a PSY-111 class this summer (Intro. to Psych.) and it is an accelerated class. We go 4 days a week for 2 hours and finish in 6 weeks. I’m trying hard to keep it interesting, fair, and encouraging. These students are really excelling. But… I am having to teach a little differently. Usually I mix it up and have small group activities, lecture, large group activities, special speakers, etc. In this summer school class I have to keep it moving. We do almost a chapter a day! Anyway, Chloe continued to pop up and come to stand by my knee at about the same time each class period. I was like, “Whaaa…?” (I have a way with words, yes?). So finally I said, “Listen y’all… what is she cueing off of? What am I sayin’ that is makin’ her get up?

So my students started watching and paying attention. It only took a day or two for them to figure it out. When I say “QUIZ“, Chloe gets up. Why she has equated that with my needing her, I haven’t figure out yet. But it is always when I say this word.

We Cue as Well

Do you know we tend to cue too? It is usually a defensive reaction. In psychology we call it “contextual cueing”. We do it automatically either from visual cues or audio cues.

I have a hearing loss. I miss things. If I’m tired, I miss things a LOT! Sometimes I cue off the context and “fill in” what I miss. This is implicit memory, for my subconscious is at work filling in what I have experienced hearing in the past. Something that people who are differently-abled or have chronic illness have to battle is jumping to conclusions. Especially if you’ve been hurt or wounded before!

Example: One of the most hurtful things you can say to someone with hearing loss is “never mind“. I’ve been told this enough that I cue off of hearing the words or hearing what I THINK were the words. Someone said this to me recently and I’ll be honest. I went OFF. They turned to me and listened to my entire rant (God bless them) and then calmly said, “Denise, I said I’M OUT OF MY MIND. I couldn’t find where I put that paper”.

oh

In this case, I was standing to her side. I heard what I thought was “never mind”. My experience with these words has never been positive. I went off. Unjustly. Sometimes we jump to the wrong conclusion and like Chloe, get up to help even though we haven’t been asked to do so. Or go OFF.

Example: Not to long ago I mashed the button to call the elevator and waited for it to come to my floor. I watch Chloe’s ears to see when it arrives, because looking up to watch the lighted floor numbers makes me dizzy. Chloe’s ears perked up and I stepped out of the way so that people could exit the now opening elevator. After everyone filed out, I held the door with my body and loaded Chloe and my stuff. As I turned, a man moved as if he was going to get on the elevator, but then stopped, rolled his eyes, and stepped back.

Now I could tell you some stories about people seeing a service dog on an elevator that would make your hair curl. Well if your hair is already curled, it would make your hair straight. I digress…

I’ve NOT had great experiences with strangers on elevators. The man must have caught my look (which made me wonder what the heck my expression must have looked like… I’m guessing PEEVED) and shoved his hand into the closing door causing it to open back up. He said, “It’s not YOU. I forgot something and have to go back and get it. Pretty dog!“, and he stepped back while the elevator door closed on my astonished self and tail wagging dog.

I cued poorly.

It’s easy to do. We have experiences that shape how we interpret the world around us. We on purpose or inadvertently “cue”.

You May Not Like It, but You are an Advocate

You may not like it, but you are an advocate whether you want to be or not. You can be a good advocate. You can be a suck advocate (if so please keep your mouth shut – grin). You can be someone who tries really hard but have not learned to advocate in a positive way yet. You can learn…

My husband is my “wet index finger” held to the wind. Poor colloquial expression choice? Not really. You see he pays attention and warns me if I’m getting “testy”. He knows that my heart’s desire is to practice what I preach. I want to be a positive advocate. I believe it is the only way to influence real change. I may have a week where I’ve had some access issues with Chloe, several people have said, “Never mind”, or I’ve had trouble communicating again and AGAIN. I can get testy. I asked him to keep me apprised of any bad attitude that starts to LEAK OUT. If he starts to sense really negative vibes from me, he lets me know (from a distance… behind a pillow blockade). He pays attention to which direction the wind is blowing. Is she getting negative? Is she justifiably angry? Sometimes I cue by jumping to conclusions. I want to know before I reach that point. He has (*graciously*) agreed to help me with this. (Ain’t he SWEET?)

Have you been conditioned to a word or phrase, a “look”, or a body stance? Do you cue off it and jump to conclusions? Now some of you readers out there are thinking, “I am rarely wrong. When I cue it is a correct cue!” (Don’t look so innocent out there… you know who you are). What we forget is that improper cueing is the result of being convinced we are right. We need to work hard at giving people the benefit of the doubt. In the end, our advocacy becomes more positive, more believable, and most importantly – powerful enough to truly produce change.

Denise Portis

© 2014 Personal Hearing Loss Journal

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Inclusion

back up1

A friend of mine from high school works for KIT (Kids Included Together) and I’ve enjoyed following her training schedule on FaceBook as it takes her literally all over the world. KIT, “… specializes in providing best practices training for community–based organizations committed to including children with and without disabilities into their recreational, child development and youth development programs” (KIT, 2014, para. 1). I touched base with her recently to ask if she and I could dialogue about what inclusion looks like on a community college campus. I want to be more involved at my workplace with the Student Services department and Disabilities office to help raise awareness about what disABILITY, chronic illness, and invisible conditions are (and are not), and to help train professors and staff to provide an atmosphere of inclusion, acceptance, and a place to grow for all who are differently-abled.

There seems to be such stigma attached with certain diagnosis or disABILITIES. I cannot stress to fellow professors how important it is to let students know at the very beginning of class:

1. You welcome transparency about any and all invisible illnesses, chronic conditions, or disabilities.

2. You provide assurance of confidentiality.

3. You provide a platform in which students can provide feedback about classroom procedures or policies that make it difficult in light of their diagnosis or condition.

4. You become a “safe person” to any who wish for a faculty advocate to coordinate with Disability Support Services and/or other faculty.

Some unfortunate stigmas attached to living with a disability or chronic condition, include:

1. You are looking for special favors because you are “special”.

2. You are not capable of doing well in class because you have to do things “different than the norm”.

3. You have a persecution complex.

4. You are a drama queen/king.

Some of the strongest people I know are people who live daily with an invisible illness/disability or chronic condition. They not only often have to find “new ways” to do something that to the normal person seems “easy” (for example, washing hair… pretty darn difficult if you have a balance disorder), but they also have to navigate a world that harshly criticizes, misunderstands, or labels folks who struggle with these issues. Some of the most difficult invisible illnesses to positively advocate for are those with mental illness or disorders. Good gravy, talk about your stigmas! They are often considered “crazies” or “fragile”, and people often avoid them after disclosure. This sucks IMHO. Some of my favorite people are those who happen to have mental illness or disorders. Talk about your resilient people! 🙂

Real Responses that HELP

As I have been thinking about inclusion from an adult perspective, I have found that in many arenas, peers, co-workers, and colleagues want to make their event fully accessible to you but do not know where to start. I have learned in the decades I’ve lived with invisible disABILITY, that we should strive to not only point out the problem – but also the solution. So here is where I need your help. I want to put together a document that can be downloaded by readers so that folks can use the collaborated effort of YOUR ideas to assist when they have problems of their own.  So email me your examples, and I will include them! denise.portis@gmail.com  – in the subject line please put: Hearing Elmo Problems and Solutions.

Here are some examples of my own to get your brain working on ideas yourself! Not all are “cut and dry” problems and solutions. Sometimes the solution is simply a candid response. Read on:

1. PROBLEM: It doesn’t help when you yell when I’ve indicated I can’t hear you as added volume distorts your words and draws attention to both of us.

SOLUTION: If I have indicated I didn’t hear you, please make sure you are facing me. It helps me to see your face. Speak in a normal tone and try not to over-enunciate words as this distorts the way it appears on your lips. If I still cannot make it out, consider writing it down, or re-phrasing it.

2. PROBLEM: It’s great to have accessible venues as long as the accessibility options are available.

SOLUTION: Are there elevators available for those who cannot take stairs? Please make sure these are not blocked. (At a recent workshop I attended, when the elevator opened, the registration desk was backed up to the opening, blocking the exit. They were horrified and quickly moved things, saying, “We didn’t know someone was attending who needed this“. It’s actually against the law to block accessible options from use. This includes handicapped parking, bathrooms, ramps, making sure hearing loops are actually switched on and working, and much more. (I once complained that the handicapped stall in the ladies room had been “out of order” for a couple of days and was encouraged to use the other available stalls until it got fixed. WHAT? *grimace*).

3. PROBLEM: People think if I just plan ahead and “rest up”, I will be able to participate in an event.

SOLUTION: When I have to bail even last minute on something I hoped to attend, I try to provide as much notice as possible. You may need to remind organizers or colleagues that how you feel “day to day” is often out of your control and that you regret the late cancellation. Something as uncontrollable as the WEATHER can wreck havoc with my plans. We aren’t trying to be butt-heads and we very likely really wanted to participate. Please do not make it worse by giving us a hard time or insinuating we planned poorly.

4. PROBLEM: The workshop has several small group activities but the room does not allow the groups to separate very far. This may cause difficulties for those with any degree of hearing loss with the “bee hive” effect.

SOLUTION: Go up to the workshop facilitator and request to allow your group to go out in the hallway, or a nearby room so that it is quieter so that you can participate. (If you know in advance the workshop may incorporate these kinds of activities, see if the conference/convention center has assistive listening devices, or invest in your own so that you can carry it with you always. Be a “hearing loop” advocate! http://www.loopamerica.com/?gclid=CjkKEQjwttWcBRCuhYjhouveusIBEiQAwjy8IG2XkFTiQkOxeExJVBKV8kaOwZxqjxKgqTGAMSh4Ktzw_wcB)

I look forward to receiving your own ideas and together presenting a form we can share!

Finally, you may be wondering about the picture I chose for this week’s post. The truth of the matter is, we all have the power to wound or injure another person with words, actions, or lack of action. I want to remind my own community of folks who live with chronic illness, or invisible disability that you are not alone. Yes, people can and will hurt you. But there is strength in numbers and you are not alone. I get knocked down from time to time, but you seriously are going to need “back up” to keep me down. This community is very resilient. We bounce back because we’ve learned there aren’t a lot of other options.

Send me your own ideas of problems and solutions to things that you have perhaps experienced yourself. I leave you with one of my favorite “list graphics”:

my chronic illness

Denise Portis

© 2014 Personal Hearing Loss Journal

Kids Included Together (2014). KIT: About us. Retrieved on June 8, 2014, from http://www.kitonline.org/html/about/kit.html

Would I if I Could?

If I could change my life, would I?
If I could change my life, would I?

I recently had a reader and guest writer bring up something all of us who live with invisible illness or disability have thought about at least once. If you could wave a magic wand and “make yourself healthy”, would you?

Well gee, evidently I’m no fun. I’m a realist. So my immediate response and argument was, “but we CANNOT change those things about ourselves so why discuss that magic wand?” She immediately texted back:

*ROLLS EYES*

Yeah. I don’t play make-believe very well. Her point was… that WASN’T the point. It doesn’t matter if you CAN, the question is WOULD you.

First Instinctual response

My first response would have to be:

Heck yeah!

About two months ago I was having a “terrible, horrible, no good, very bad day“. I woke up (thanks to my canine alarm clock) and swung my feet out of bed too fast causing me to crash into the dog bed and water bowl next to my bed. Climbing down the 16 stairs to the kitchen area, I missed the last 4 steps, re-injuring my bad ankle. I ran my coffee maker without coffee grounds. I slipped on the kitchen rug and slid like a ninja into the dining room and cracked my head on the table. When my husband came downstairs he found me sitting on the floor wailing. I sobbed and blubbered all the things that had happened in the 30 short minutes I had been awake. He leaned down and patted my shoulder and said, “Awww honey. Sometimes it sucks to be you“.

I cracked up. It was exactly what I needed. Sometimes? Sometimes it just sucks to be me. But… I am me and I deal with that. Wouldn’t it be great if I didn’t have to live with a balance disorder though? Wouldn’t it be great if I could hear with “normal ears”?

Well duh. Of course it would. I’ve had folks tell me before, “Denise, you are always so UP and optimistic. You do not ever seem to let this STUFF get you down“. Well gee… you aren’t hanging out with me enough then. I try to set people straight quickly. It isn’t always wonderful. I don’t always smile. I’m not able to pick myself up by my bootstraps all the time. Sometimes I wail on the dining room floor thinking how much it sucks to be me!

But You Can’t Stay There

So I have good days and bad days. Just like you.

I am quite capable of “counting my blessings”, finding the “silver lining” and make darn good lemonade from those “lemons”. That doesn’t mean I don’t really wish things were different sometimes. I’d be lying if I said I love being me all the time.

But magic wands do not exist. This is my life. I know more about Meniere’s disease and late-deafened life than the doctors who diagnosed me. I know more about learning how to fall and how to move than my buddies at vestibular rehab. I’ve learned to cope.

Just like many of YOU have. You make the best of it. There are few alternatives.

We will have “bad days“. Don’t be afraid to feel it. Belly-ache about it. Scream at God. Throw something (not at someone – jus’ sayin’). Cry. Cuss.

But you can’t stay there. A friend of mine lives with a chronic pain and inflammation condition. I asked her how she “keeps on keeping on” when she’s had a bad day. She said, “You have to. You get up and breathe in and out. You wipe your tears. You suck it up. But then, go confide in a friend. Write. Dance. Take a walk with your camera. Hug your dog. You can’t stay there“. (My friend is very wise, yes?)

My friends, you are going to have days where you discover you are stronger than you think you are. But… you are also going to have days you find you aren’t as strong as you’d hoped. That is part of acceptance. Acceptance doesn’t mean you have to LIKE it. By accepting we then learn to cope. We become flexible. We become teachers (and reach out to others). How you cope may not be how someone else copes. The trick is TO COPE.

Would I change the physical stuff about me if I could?

***WaVeS mAgIc WaNd***

But that would mean that I wouldn’t have met many of you. My friends and relationships would all be different.

I wouldn’t have learned to advocate and help others.

I wouldn’t have found a “place” at Fidos For Freedom.

I wouldn’t have pursued psychology and disabilities.

I wouldn’t have learned to empathize and support others who live with invisible illness and disability.

I would not have learned how capable I am.

I wouldn’t have learned who I really am.

So nope. I wouldn’t waste that fairy dust on changing me. I may not always like my life, but I love living. I keep my focus on the verb, not the noun.

So if I had a magic wand? Well heck, I’d use it for something useful! Like being able to consume as much chocolate as you want without the scale showing any change! Um yeah. IN A FREAKING HEARTBEAT! 🙂

Denise Portis

© 2014 Personal Hearing Loss Journal

“Reflection”

Look at me
You may think you see
Who I really am
But you’ll never know me
Every day
It’s as if I play a part
Now I see
If I wear a mask
I can fool the world
But I cannot fool my heart

Who is that girl I see
Staring straight back at me?
When will my reflection show
Who I am inside?

I am now
In a world where I
Have to hide my heart
And what I believe in
But somehow
I will show the world
What’s inside my heart
And be loved for who I am

Who is that girl I see
Staring straight back at me?
Why is my reflection
Someone I don’t know?
Must I pretend that I’m
Someone else for all time?
When will my reflection show
Who I am inside?

There’s a heart that must be
Free to fly
That burns with a need to know
The reason why

Why must we all conceal
What we think, how we feel?
Must there be a secret me
I’m forced to hide?
I won’t pretend that I’m
Someone else for all time
When will my reflection show
Who I am inside?
When will my reflection show
Who I am inside?